Assisted Living Platform - The Long Term Care Revolution Report

Assisted Living Platform - The Long Term Care Revolution Report
Report
Assisted Living Platform The Long Term Care Revolution
This report outlines the case for a revolution in long term care and captures
some of the supporting material that has aided the development of the
Technology Strategy Board’s ‘long term care revolution’ programme. It
includes evidence about the views of older people and their carers in
the UK, lessons from abroad, the implications for industry/providers and
makes recommendations to government and industry leaders.
Written by Anthea Tinker, Leonie Kellaher, Jay Ginn and Eloi Ribe at
the Institute of Gerontology, Department of Social Science, Health and
Medicine, King’s College London for the Technology Strategy Board
Reproduced here by the Housing Learning and Improvement Network
September 2013
© Housing Learning & Improvement Network
www.housinglin.org.uk
Table of Contents
Executive Summary: Assisted Living Innovation Platform The Long Term Care Revolution�������������������������������������������������������������������������������������� i
1.Background���������������������������������������������������������������������������������������������������������������� 1
2.
The vision is for alternatives to institutional care �������������������������������������������� 1
3.
The aim of the research������������������������������������������������������������������������������������������� 2
4.
Issues to be considered������������������������������������������������������������������������������������������ 2
a. Demographic concerns and the scale and nature of likely demand ���������������� 2
b. Increased prevalence of long term conditions���������������������������������������������������� 3
c. More older people in employment ����������������������������������������������������������������������� 3
d. Rising expectations ���������������������������������������������������������������������������������������������� 3
e. Informal carers������������������������������������������������������������������������������������������������������� 3
f. Numbers in institutions and costs ���������������������������������������������������������������������� 4
g. Poor care in institutions and at home ����������������������������������������������������������������� 4
h. Financial constraints �������������������������������������������������������������������������������������������� 4
i. Complexity of funding ����������������������������������������������������������������������������������������� 5
5.
Why 2012, 2020 and 2050? ������������������������������������������������������������������������������������� 5
6.
Summarising long term care problems and reforms to address them ������� 6
a.General ������������������������������������������������������������������������������������������������������������������� 6
b. The UK�������������������������������������������������������������������������������������������������������������������� 6
c. Outside the UK������������������������������������������������������������������������������������������������������� 8
7.
Placing the older person at the heart of any solution –
a person centred approach ��������������������������������������������������������������������������������� 11
a.General ����������������������������������������������������������������������������������������������������������������� 11
b. Personalisation and individual budgets ����������������������������������������������������������� 12
i.General������������������������������������������������������������������������������������������������������������ 12
ii. Types of financial support�������������������������������������������������������������������������������� 12
8.
Practical examples of long-term care at home – the vignettes�������������������� 14
9.
Living environments for the future: alternatives to institutions ����������������� 17
a. Criteria for the built environment����������������������������������������������������������������������� 17
b. Criteria for the social environment�������������������������������������������������������������������� 17
c. The importance of housing and issues of tenure �������������������������������������������� 18
d. Staying in own home ������������������������������������������������������������������������������������������ 19
i.General������������������������������������������������������������������������������������������������������������ 19
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ii. Home sharing �������������������������������������������������������������������������������������������������� 19
iii. Home modifications����������������������������������������������������������������������������������������� 20
e. Who moves and why ������������������������������������������������������������������������������������������ 22
f. Moving to a specially designed home��������������������������������������������������������������� 23
g. Moving to specialist grouped housing – sheltered and
very sheltered/extra care housing ��������������������������������������������������������������������� 23
h. Retirement villages ��������������������������������������������������������������������������������������������� 25
i. Other options�������������������������������������������������������������������������������������������������������� 27
i. Sharing a home with a family �������������������������������������������������������������������������� 27
ii. Adult placements/shared lives�������������������������������������������������������������������������� 27
iii.Cohousing�������������������������������������������������������������������������������������������������������� 28
j. Some radical alternatives to institutions and staying at
home such as hotels, cruise ships �������������������������������������������������������������������� 30
10. Key factors for revolutionalising long term care for older people ������������ 31
a. Good design of homes and towns��������������������������������������������������������������������� 31
b. Changing patterns of informal and formal care ����������������������������������������������� 31
c. New products including the role of technology ����������������������������������������������� 32
i.General������������������������������������������������������������������������������������������������������������ 32
ii. Telemedicine ��������������������������������������������������������������������������������������������������� 32
iii. Telecare including alarms�������������������������������������������������������������������������������� 34
iv. Computers and information communications technology�������������������������������� 36
v. Smart homes ��������������������������������������������������������������������������������������������������� 37
d. Services working together ��������������������������������������������������������������������������������� 40
11. The special cases of people with dementia, other forms of cognitive
impairment and those who are dying����������������������������������������������������������������� 41
a. Cognitive decline and dementia ������������������������������������������������������������������������ 41
b. People who are dying ����������������������������������������������������������������������������������������� 42
12. Legal and ethical issues ��������������������������������������������������������������������������������������� 43
a. Legal issues including human rights����������������������������������������������������������������� 43
b. Ethical issues ������������������������������������������������������������������������������������������������������ 43
13. What can be done? ������������������������������������������������������������������������������������������������ 44
a. Changing public attitudes����������������������������������������������������������������������������������� 44
b. Drawing on the strengths of older people themselves ����������������������������������� 44
c. Changing policies ����������������������������������������������������������������������������������������������� 45
i. Looking for leaders������������������������������������������������������������������������������������������ 45
© Housing Learning & Improvement Network – www.housinglin.org.uk
ii. Age discrimination�������������������������������������������������������������������������������������������� 45
iii. Improving health �������������������������������������������������������������������������������������������� 45
iv. A higher profile for housing������������������������������������������������������������������������������ 46
d. Encouraging new providers ������������������������������������������������������������������������������ 46
e.Changing practice including new ways of doing things ��������������������������������� 46
f. Staff - changing attitudes and training�������������������������������������������������������������� 47
g. Paying for services and products����������������������������������������������������������������������� 47
h. Giving more information�������������������������������������������������������������������������������������� 48
i. Measuring outcomes and the need for more research������������������������������������ 48
j. Using institutional care more creatively for non residents����������������������������� 49
k. The role of industry��������������������������������������������������������������������������������������������� 49
14. Changing institutional care����������������������������������������������������������������������������������� 49
15. Next steps including the need for more research ����������������������������������������� 50
16.Conclusions�������������������������������������������������������������������������������������������������������������� 50
References ������������������������������������������������������������������������������������������������������������������������ 52
Methodology ��������������������������������������������������������������������������������������������������������������������� 63
Note�������������������������������������������������������������������������������������������������������������������������������������� 63
About the Institute of Gerontology, Department of Social Science,
Health and Medicine, King’s College London ����������������������������������������������������������� 63
About the Housing LIN ��������������������������������������������������������������������������������������������������� 64
Published by ��������������������������������������������������������������������������������������������������������������������� 64
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Executive Summary: Assisted Living Innovation Platform The Long Term Care Revolution
Aim
The aim of this research is to outline the case for a revolution in long term care all to be set in
a time scale of 2012, 2020 and 2050. This includes evidence about the views of older people
and their carers in the UK, lessons from abroad and the implications for industry/providers.
Methodology
We are a multidisciplinary team with expertise in both quantitative and qualitative methods.
We undertook desk-based research of reports and peer reviewed articles from the UK and
elsewhere (mainly Europe). Findings are based on evaluated initiatives although we mention
other promising developments.
Our philosophy
Our vision is based on radical alternatives to traditional long term care provision as well as
revisiting more conventional ones. It reverses the current view that, with increasing frailty,
older people are less able to care for themselves and need to become the objects of care.
Our premise is that any future model must promote independence and place the older person
centrally as their own designer of care. Independence does not rule out being dependent on
others, on equipment and on technology for some – perhaps many – aspects of daily living.
What matters is that the management of help is executed by those who acknowledge that the
older person chooses a solution that suits them. The initiatives under the Technology Strategy
Board initiative ‘Independence Matters’ can help, as can the choice of a personal budget and
direct payments.
Important issues to be considered
The findings are set in the context of demographic concerns about the rise in numbers of old,
especially very old, people, increased prevalence of long term conditions, more older people
in employment (which can have both negative and positive effects), rising expectations, the
role of informal carers, numbers in institutions and costs, poor care both in institutions and at
home, financial constraints and the complexity of funding.
The findings and key points
We identify practical evaluated examples of care provision (best practice, innovative and
disruptive from the UK and elsewhere - mainly Europe). Our research examines the extent to
which examples enable the older person to be at the heart of any decisions on their care - a
person-centred approach. We give practical examples of long term care at home by examining
possible scenarios for people on the margins of institutional care. Here we build on previous
research done for the Royal Commission on Long Term Care in 1999 and update this. In our
updated six vignettes describing levels of disability and care needs, we look at what these
people would need to remain at home. For many, help with tasks such as personal care are
needed for 52 weeks a year, but technology can play a role.
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The importance of home and the key role of housing. Many health conditions are related to
poor housing and the housing/health link becomes more important with age as people become
more prone to falls and susceptible to cold or damp. Appropriate housing is shown to have a
preventive role. The growing percentage of older people who are owner occupiers may lead to
them being unable to undertake repairs and renovations in the future. For those able to remain
in their own home we underline the key role of home modifications.
Arrangements for older people to share a home are promising, especially cohousing, and we
give detailed findings about this mainly from Europe. Other schemes such as an older person
living with an unrelated family known as Adult Placement schemes have the potential for the
older person staying in a homely environment. More research on both the practicalities and
the advantages and disadvantages of these schemes is needed.
For older people who have to move, research shows the value of extra care housing which
enables older people to have their own front door but also help on hand. Extensive research
on this in the UK shows the value of this, including for people with dementia.
On technology, the findings show great potential but we caution about the hype attached
to some. Simple gadgets and the greater use of mobile phones, computers and television
would enhance people’s lives and should be promoted more widely. Looking ahead, the next
generation will benefit from greater use of this and more sophisticated technology. We also
caution about the ethical issues of techniques for surveillance such as hidden monitors.
Recommendations: in general
•
More attention to putting the older person at the heart of any decisions about their future;
•
More emphasis on the key role of housing and specifically expansion of extra-care housing;
•
Greater investment in home modifications;
•
Greater attention to the status, pay, training and attitudes of staff and links between
individuals and providers;
•
Expansion of technology products, especially inexpensive (often low tech) ones such as
kitchen devices, mobile phones etc;
•
More use made of care homes for people in the community to use;
•
More homes to be designed to Lifetime standards and age-sympathetic design of towns;
•
Acknowledgement of both the contributions and limitations of informal care;
•
Changing public attitudes, which may include an acknowledgment that more resources are
needed, more use of the private sector and measures to challenge age discrimination;
•
Greater information on options both for remaining at home but also for moving.
Recommendations: for the Technology Strategy Board and Industry
•
A strong case be put to the Treasury and the Technology Strategy Board to invest in more
services, products and research on the grounds that this will save money on expensive
care but also that it will bring growth in new markets or expand existing ones;
•
Specifically for industry, the production of a short summary of the potential for investment
in e.g. Lifetime homes, extra care housing, co-housing projects, new technologies and the
marketing of existing ones. Some of the UK schemes could be showcased.
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There is need for more research in certain areas including:
•
Dementia;
•
Promising initiatives that have not been evaluated, including outcomes;
•
Designing homes where older people live with their families in separate parts;
•
Disability trajectories of older people and how best to manage changes in care needs;
•
Monitoring the proportion of disabled people whose care needs are not met;
•
Many aspects of technology including how to involve older people, from the design to the
marketing and why older people do not use technology;
•
Case studies of countries which seem to offer promising initiatives.
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Assisted Living Innovation Platform –
The Long Term Care Revolution
1.Background
A revolution ‘A great and far reaching change’ (Pocket Oxford English Dictionary, 2005, p.777).
The Institute of Gerontology (IOG), King’s College London was commissioned in August 2012
to research a new vision which would revolutionise long term care (LTC) for older people. Based
on their own extensive research, and that of others, they are committed to the underlying view
that the current model is unfit for purpose, undignified and unsustainable.
The case is put that will allow the Technology Strategy Board to invest in a future programme
of research and to persuade the Treasury of its importance. Part of this will be the case for
changing public attitudes to allow greater investment but, more importantly, in different ways
that better reflect the views and desires of both younger and older generations. This may mean
new providers, new ways of doing things, more person centred services, innovative solutions
(including the use of technology), new design, new products, different staff and training and a
change in public attitudes. It is interesting that the terminology of social care is also beginning
to change. For example, the Director of Care Services of the Joseph Rowntree Foundation
stated on 23.11.12 ‘State of care in Britain – we need a revolution’ (Kennedy, 2012).
Since the present basis for provision of care for older people is founded on the premise that,
with increasing frailty, older people are less and less able to care for themselves and need to
become the objects of care by others, any new argument has to find ways of reversing this
ideology. One reversal would be to say that any future model must place the older person
centrally as the designer of their own care. This has been declaimed already but has been
interpreted as carers doing their best to respect the older person rather than following direct or
implied requests. There will be many who will say that this is fanciful, but becoming the object
of care, whether in a home or with home care, is what older people dread. Even very frail
people can remain in charge of significant aspects of their domestic lives if carers, both formal
and informal, can be persuaded and then encouraged, to relinquish controlling care patterns.
Independence does not rule out being dependent on others, on equipment, on technology for
some – perhaps many – aspects of daily living. What matters is that the management of help is
executed by those who acknowledge that the older person initiates any request or instruction.
We identify practical evaluated exemplars of provision (best practice, innovative and disruptive)
from the UK and elsewhere (mainly Europe).
2.
The vision is for alternatives to institutional care
The shortcomings of institutional care have been documented and deplored since the early
20th century, with the need for reform given new urgency by Townsend’s (1962) seminal study
of residential care homes for older people. Deficiencies that have been slow to change include
lack of privacy and personal space, while the possibilities for social interaction, engagement
with the wider world and re-ablement to return home remain scarce. Moreover the insidious
effect of institutions in stifling individuals’ agency and capacity for self-help remained. As
Peace et al. (1997, p. 40) noted, for older people ‘the institutional option casts a shadow of
deep anxiety and uncertainty in later life, as they fear its imminence’. Successive governments
since the 1960s have attempted to reform residential care by incremental measures and more
radically since 1990 by shifting more care into the community. The aim has been both to
improve the quality of life for disabled people and to reduce the mounting cost of maintaining
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residential institutions. Therefore a key criterion in assessing innovative ways of providing care
in the community is whether the scheme promotes health and independence and/or delaying
or avoiding entry to institutional care. Policy statements have endorsed the need for dignity
and a high quality of life to be maintained through the delivery of LTC, although the resources
have not always been sufficient. Reform efforts have been partially successful, especially in
the case of younger people moved into, or remaining in, the community. Yet by 2000 some
300,000 older people (about 4% of those aged over 65) still lived in residential care homes
and about 200,000 in nursing homes, where numbers were increasing due to closure of longstay hospital beds. Among care home residents, about half had some cognitive impairment, a
third of these being severely affected. Nevertheless, it is likely that some of today’s care home
residents, and many of those who might otherwise be admitted in future, could live in a noninstitutional setting especially if services were pro-active rather than reactive.
The case for revolutionising LTC is based on understandings of how older people want to live
when they come to need help, sometimes very high levels, with everyday life. Studies of LTC in
the post-war decades indicate that older people and their families want to maintain their former
lifestyle as far as possible, maintaining into old age the sense of self and autonomy for which
everyone strives across the life course. This principle generates criteria for assessing how far
existing and innovative schemes outlined in the subsequent section 9 (Living environments
for the future), are likely to be successful in maximising autonomy, control and continuity of
selfhood. Some of the schemes we have explored are in the UK, others elsewhere in the EU.
Most of them, however, still accommodate and/or help quite small – even elite – groups.
3.
The aim of the research
We were asked to outline (including evidence about the views of older people and their carers
in the UK, lessons from abroad and the implications for industry/providers), the case for a
revolution in long term care all to be set in the time scale of 2012, 2020, 2050. In more detail
we were asked to base this on a vision of 2020 but also 2050 (desk research based on the
UK and mainly Europe). This included: summarising the current position of long term care
noting the problems and previous attempts to change the system, summarising the challenges
of the present system, consider living environments for the future based on the projections
for the numbers of people living with dementia, age-related disabilities and/or long term
condition, consider some radical alternatives to institutions and build a social case for local as
well as national provision, community involvement and the integration of informal care. And
identify practical exemplars of provision (best practice, innovative and disruptive) from the
UK and elsewhere (mainly Europe). Our findings are restricted to evaluated initiatives, policy
documents and official reports. We touch briefly on some points so as to allow more time on
others which are more disruptive.
4.
Issues to be considered
We summarise below some of the main issues.
a. Demographic concerns and the scale and nature of likely demand
The starting point for looking at the issues has to be the demographic one. The 2011 census
for England shows that the % of the population aged 65+ was 16.4%. This is the highest seen
in any census. More important than the growth in numbers of older people is that of the very
old. The numbers of those 90+ were 13,000 in 1911, 340,000 in 2001 and 430,000 in 2011. For
many the need for support and care may be for an intensive period at the end of their lives.
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b. Increased prevalence of long term conditions
A long term condition (LTC) has been defined by the Department of Health (DH) in Long Term
Conditions Compendium of Information (DH, 2012a) as ‘a condition that cannot, at present,
be cured but is controlled by medication and/or other treatment/therapies’ (ibid, p. 3). The
report states that people with these conditions account, among other things, for 50% of all
GP appointments, 64% of all outpatients appointments, 70% of all inpatient bed days and
that this 30% of the population account for 70% of the spend. They go on to show the rise
in these conditions. For example between 2006 - 07 and 2010 – 11 the numbers affected by
cancer rose by 79%, chronic kidney diseases rose by 45%, and diabetes and dementia by
25% (ibid, p. 5). In addition having a long term condition usually reduces people’s quality of
life, particularly through having chronic pain (ibid, p. 13).
c. More older people in employment
There is expected to be a growth in the numbers of older people working into old age which
will have advantages (such as more spending power) but possible disadvantages (if the
job is stressful). This extra time in work has to be balanced by demands on their time from
elderly parents, children and grandchildren. In addition the world of employment is changing
dramatically. The growth of unemployment will have a knock on effect on the next generation
of older people.
d. Rising expectations
Rising expectations, especially of the new generation of older people who are now baby
boomers are not necessarily a problem but do present challenges.
e. Informal carers
Although recent research and reports advocate a change in the philosophy and provision
of care for older adults, families are still a necessary resource to organise and provide care
to frail older members. Adult care has been, and still is, preponderantly provided by family
members (Victor, 1997; Leitner, 2003; Fink, 2004; Haynes et al., 2010). About 6.5 million, 13%
of the adult population, provide care, 40% of these caring for parents/in-law and a quarter for
a spouse. Caring peaks at age 50-59 but over 12% of those aged over 65 provide informal
care. Women are more likely than men to be carers in midlife, while spousal care in later life
is more gender-equal. This constitutes the informal care system, a resource estimated as
worth £119 billion per year, more than spending on the NHS. The great contribution of carers
is often acknowledged by public authorities (Pavolini and Ranci, 2008) and we refer to this
throughout the report.
Yet carers continue to receive inadequate practical or financial support, leading to stress that
takes its toll on their own health. According to a recent briefing, caring is linked to declining
physical and mental health of carers, damage to their social relationships and isolation (Carers
UK, 2012). The 2 million providing over 20 hours of care per week also risk impoverishment in
midlife, finding they cannot juggle paid employment with caring and must reduce working hours
or (for one in five carers) give up their job. As women are increasingly engaged in the formal
labour market in midlife, many face substantial loss of earnings and future pensions when
they take on informal caring. Alternatively, if they maintain employment until (the rising) state
pension age, this leaves a proportion of frail individuals at risk of insufficient care (Lewis et
al., 2008). Low income and financial worries exacerbate the stress of caring and many carers
have to ignore their own health problems due to difficulty in finding or paying for substitute
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care (Carers UK, 2012). Despite carers’ rights to an assessment of their own needs, not all
received this in 2006-7 and of those who did only half received any service. Moreover, of the
£150 million granted to LAs for carer breaks and services, only a quarter of the annual amount
was actually spent on this (Moran et al., 2012). Carers’ involvement in planning Personal
Budgets was found to be helpful but where carers managed the budget it placed extra work
on them. Where the older person held the budget this could sometimes strain the relationship:
‘Interdependencies between budget holder and carer are not easily accommodated within the
model of personalisation’ (Glendinning 2011, p.19).
Local Authority (LA) social services cannot meet rising demand for domiciliary care without
increased funding, yet their grant is being cut by 7% each year. Mayhew’s (2012) report on
informal carers notes that the responsibility and cost borne by them will therefore increase,
and sums up: ‘The gradual withdrawal of the state will thus have significant consequences
for demand, especially for unpaid care. This will lead to difficult choices for potential family
carers between working and caring’ but the impact on families of the policy shift is not always
recognized (Mayhew, 2012, p. 10).
f. Numbers in institutions and costs
There is evidence that some people are in institutions, for example in hospitals and in care
homes, unnecessarily. Hip fractures are the event that prompts entry to residential care in up to
10% of cases (quoted in Stirling, 2011, p. 5). Professor Clive Ballard has said ‘In care homes
in the 1980s, about 20 to 25 percent of people had dementia. Ten years ago it was about two
– thirds, and now it is probably greater than 80 percent’ (quoted in the Independent 16.9.12).
Institutional care is also expensive. One study showed that, where appropriate, postponing entry
into residential care for one year saves an average of £28,000 a year (Stirling, 2011, p. 5).
g. Poor care in institutions and at home
The major challenge is the poor standard of care provided both in institutions and at home.
Numerous reports have identified the lack of dignity and care, which have been found in both
situations. The Care Quality Commission (CQC) found that only 80% of nursing homes and
89% of residential care services were ensuring that people in their care were given help with
the food and drink they needed (CQC, 2011). For institutions the challenges are not just the
poor standard, including lack of adequate medical care, but the fact many older people enter
them in a crisis without proper planning, many do not need to be there and some could be
moved out if there were adequate alternatives. This is particularly the case for people with
dementia. Older people, of whom 40% may come to suffer from dementia, occupy two-thirds
of hospital beds (Morris, 2012, quoting Alzheimer’s Society 2012). Not only may staff feel
unable to cope with these patients but it is an expensive way of looking after people. However,
‘Despite health and social care costs rising with age, the balance of care between total hospital
inpatient costs and social care costs shifts dramatically with increasing age. It appears that a
crossover occurs in people aged 90 and over, when estimated social care costs exceed the
hospital inpatients costs’ although there are marked regional variations (Morris, 2012 quoting
Bardsley et al. 2011).
h. Financial constraints
Although the financial aspects of this research are being undertaken by others there are
some factors which must be mentioned. These include cuts to services. Cuts in expenditure in
European welfare states for long-term care are ‘emphasising ‘self-reliance’ and replacing care
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as an entitlement with targeted services’ (Grootegoed and Van Dijk, 2012, p. 677). A study
in the Netherlands found that ‘disabled and elderly persons resist increased dependence on
their personal networks. Most clients who face reduced access to public long term care do not
seek alternative help despite their perceived need for it, and feel trapped between the policy
definition of self-reliance and their own ideals of autonomy’ (ibid, p.677).
As well as cuts in the public sector there are cuts in numbers employed in the voluntary
sector. In the UK around 70,000 is a recent estimate (Corry, 2012) and 59% of charities expect
the financial situation of their own organisations to get worse with only 13% expecting an
improvement (National Council of Voluntary Organisations (NCVO) Charity forecast June 2012
ditto). A recent New Philanthropy Capital survey of commissioning from 3rd sector perspectives
show a big effort to work differently (97% working differently or trying new things) and 75%
aiming to harness the power of volunteers. But there were worries about closures and much use
of reserves. The impact is likely to be on individuals, communities and families, professionals,
policy makers and ultimately society. The future may lie in voluntary organisations working in
consortia and with the private sector.
i. Complexity of funding
Lessons from 13 pilot projects in 2010 on the delivery and funding of public services showed
the complexity of attempting to integrate each user’s diverse funding streams into a single
Individual Budget (HM Treasury and Department of Communities and Local Government, 2010,
p. 17). Also from a citizen viewpoint, public services were often impersonal, fragmented and
unnecessarily complex, due to the system driving the current arrangement of public services.
In addition individuals and families with multiple needs impose significant costs on areas that,
in most cases, are currently not tackled through targeted or preventative activities.
5.
Why 2012, 2020 and 2050?
While the dates for any projections are purely arbitrary it is logical to start with the current date
and then to think both short and long term. 2020 is often used in the UK e.g. by the Office for
National Statistics in Social Trends. A recent Local Government Association estimate was that
spending on adult social care will exceed 45% of council budgets by 2019/20 (Corry, 2012).
2020 has also been used by some government planners. For example the Housing Minister
said (3.1.12) ‘As we get older the last thing we want is for our properties to become our prisons.
We want to be able to enjoy the comfort of our own homes in later years. But with nearly a
fifth of our population expected to be over 65 by 2020, radical and urgent change is needed
to ensure that the UK nations’ housing provision meets the growing and changing demands
that this is bringing and will bring in the future’. Whether that has been translated into action is
another matter. Other government departments have used 2008 for a more immediate date.
The Department of Health (DH) estimate that, while the number of people with one long term
condition is projected to be relatively stable over the next ten years, those with multiple long
term conditions will rise from 1.9 million in 2008 to 2.9 million in 2018 (DH, 2012a, p. 8).
Other demographers have used different dates. For example a big research project led by Mike
Murphy at the London School of Economics found that in the UK the number of people over
the state pension age is projected to rise by almost 40% in the next 25 years and the number
aged 80 and over, where care needs are greatest, will nearly double’ (Murphy, 2010).
2050 is used by the United Nations (UN) for their long term projections. For the UK in
comparisons between 2009 and 2050 the UN estimate that the percentage of those aged 60+
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of the total population will rise from 22% to 29% and that of the over 80s as a percentage of
those aged 60+ will rise from 21% to 30% (UN 2009). Another relevant figure is that of old age
support ratios. That is the number of people aged 15 – 64 (that is people of working age) per
person aged 65+ will drop from 4 to 3.
We should note, however, that an arbitrary date hides differences in groups of people. While
it is possible to suggest what may happen at any date older people may have a very different
profile whether they are for example in their 60s, 70s or any other age (nb in some cases we
have used some other dates where information has been more readily available).
6.
Summarising long term care problems and reforms to address them
a.General
The rapid growth in the number of older people and the growing concerns to deliver a dignified
later life has triggered substantial debates on reforming long-term care provision in the last
three decades. Ageing populations have been accompanied by tightening public budgets and
subsequently many OECD states have initiated a series of profound welfare state reforms.
These two major trends have contributed to change their long-term care scenario. At a
theoretical level, the latter trend – ageing populations and declining long-term care support has focused on promoting social inclusion, justice and tackling health and economic poverty at
older ages. The former has revolved around the need to endorse alternative and sustainable
forms of long-term public/state provision for later life.
b. The UK
Promoting care in the community and minimising institutional care is a long-established policy
aim, but in the 1980s was undermined by policy in other areas (Audit Commission, 1986).
To address this, a review was commissioned (Griffiths, 1988). The report recommended
that Local Authorities be funded to play the lead role in community care: assessing needs,
designing ‘flexible packages of care’ and working with service providers in the independent
voluntary and private sectors to expand choice. Critics feared that cuts in LA care services
would increase reliance on family care, provided mainly by women who received little support
as carers (Laczco and Victor, 1991). The White Paper Growing Older (DHSS, 1981) accepted
that state services did not diminish family care and initiatives for carer support were set up.
However, critics argued increased services were required to help carers (Hicks, 1988). The
White Paper, Caring for People. Community Care in the Next Decade and Beyond (DH, 1989)
confirmed the commitment to enable living as ‘independently as possible in their own home,
or in a “homely care setting in the community’ (ibid, p. 3) and to ‘design services to meet
individual need’ (para 3.3.3). Six key objectives were identified: a new funding structure;
promotion of the independent sector; agency responsibilities clearly defined; development
of needs assessment and care management; promotion of domiciliary, day and respite care;
and development of practical support for carers. The NHS and Community Care Act followed
in 1990. Policy Guidance urged that both service users and carers should be consulted in
LA plans (DH, 1990) and the Carers (Recognition and Services) Act 1995 gave carers the
right to ask for a needs assessment and receive appropriate services. The Community Care
(Direct Payments) Act (1996) allowed LAs to make Direct Payments (DPs) for social care, but
excluded those aged over 65 until amended in 2000 to include older people and in 2001 to
include carers. Since LAs could choose whether to allocate DPs or maintain existing models
of service provision, there was uneven development (See section 7).
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The Royal Commission on Long Term Care chaired by Lord Sutherland recommended that
‘The costs of long term care should be split between living costs, housing costs and personal
care. Personal care should be available after assessment, according to need and paid for from
general taxation: the rest should be subject to a co-payment according to means test’ (Royal
Commission on Long Term Care, 1999, p. xvii). This was not accepted by the Government
although it was in Scotland. For people on the margins of institutional care, research showed
the value of intensive home support, extra care housing, co-resident care and technology
(Tinker et al., 1999). The Health and Social Care Act (2001, effective from 2003) placed a duty
on LAs to offer DPs to all eligible people requesting it. The White Paper, Our Health, Our Care,
Our Say (DH, 2006) proposed extending DPs to those ‘lacking capacity’ through allowing a
‘suitable person’ to manage the payment on their behalf. Personal Budgets (PBs) for social
care have been promoted to enable purchase of services from any provider. PBs have no
legislative basis at present but a concordat, Putting People First (HMG, 2007) was signed by
Central and Local Government, the professional leadership of adult social care and the NHS.
The Health and Social Care Act 2008 established the Care Quality Commission (CQC) as
the regulator of health and adult social care services, setting out duties and powers. Service
providers meeting specified standards may register with the CQC.
The Dilnot Commission claimed that the current system of institutional long term care
was hard to understand, often unfair and unsustainable’ (Dilnot Commission, 2010). They
recommended that: individuals’ lifetime contributions towards their social care could be
capped at around £35,000, after which individuals would receive full state support. The means
tested threshold, above which people are liable for full care costs, should be increased from
£23,250 to £100,000; national eligibility criteria and portable assets should be introduced
to ensure greater consistency. The recommendations await a decision by government. In
2010, plans for adult social care services were published in A Vision for Adult Social Care:
Capable Communities and Active Citizens. Plans encompass improving outcomes through
making services more personalised and preventative and by promoting a partnership among
individuals, communities, the voluntary sector, the NHS and LAs, including housing. A shift in
power from the state to the service user is intended, through extending the use of Personal
Budgets (PBs) and maximising users’ independence. By April 2013, LAs should offer PBs for
everyone who is eligible, with information about care and support services, including to selffunders. In 2011 the Law Commission recommended: putting an individual’s well-being at the
heart of decisions; giving carers new legal rights to services; placing duties on councils and
the NHS to work together; building a single, streamlined health and social care assessment
and eligibility framework; and giving adult safeguarding boards a statutory footing (Law
Commission, 2011).
The 2012 White Paper Caring for our future: Reforming care and support sets out the vision for
a reformed care and support system. This focuses on people’s wellbeing and supporting them
to be independent as long as possible; national consistency in access to care; better information
to help people make choices; increasing people’s control over their care; improving the quality
of care and integration of different services; and improving support for carers. The draft Care
and Support Bill would replace earlier legislation and provide a legal basis for these reforms.
The consistent policy preference for care in the community needs to be matched by adequate
resources. A danger is that, as LAs struggle to meet obligations within reduced budgets, too
many older people will be excluded from care services if their needs are not ‘substantial’ or their
income is above the means tested threshold. Not all communities can provide care through
volunteering and the capacity of informal carers is also limited. The current challenges facing
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long term care are summarised as underfunding, unmet need, means testing, catastrophic
costs, over-burdened carers, local variations and complexity (Lloyd, 2011). The policies are
in place but next we must ‘turn the guidance and rhetoric of personalised care into a reality
of everyday care and practice’ (Cornwell, 2012, p. 3). This is better achieved through guiding
principles and responsible leadership rather than detailed instructions that can obfuscate and
distract. Good practice examples and case studies are seen as a good way forward (ibid).
c. Outside the UK
In most European countries the change in long term care policy has been away from institutions
and towards home care. The decade of 1980s brought an urgent need for redesigning the
archaic, bureaucratic, standardised model of institutional elder care. For most of the 20th Century,
long term care responses were primarily based on providing residential care as a substitute for
family care. The Netherlands, as pointed out by Baldock and Evers (1991) is a good example
of a radicalised nursing care system. However, an increasing number of voices advocated new
models of delivering care and support to older individuals. This new pattern was conceived
as an alternative to residential care where individuals with different needs were treated in
standardised rigid institutional systems of care. Arguments for more individualised care derived
from the need for a more efficient and inclusive new pattern of social care provision (see for
example Glendinning and Moran, 2009). An emphasis on tailoring services to individuals has
been recently embedded within a much larger rhetoric of empowering individuals (Christensen,
2010), known as personalisation. Standard responses for a multiplicity of problems were deemed
rigid and unfit for purpose. As a consequence, social care services have been increasingly
designed to match dependent individuals’ needs and care or support through individualised
needs assessment and within the context of their own home.
This person care centred approach has been accompanied with a radical transformation of
attitudes and the rise of housing options in favour of ageing in the individual’s home. Older
individuals show a strong preference to receive long-term care in their home rather than moving
into a residential or nursing home (Friedland and Summer, 2005). These are seen negatively
by individuals who express a strong desire to avoid institutionalisation mainly because of the
lack of privacy (van Hoof et al., 2011). There has been a growing concern to prevent unjustified
and denigrating institutionalisation for individuals with capacity to remain in the community. As
a result there has been an increasing consensus that individuals should be provided with
the tools and resources to promote and enhance autonomy and independence in the home
(Wiles et al., 2012). Greater responsibilities have been placed on individuals, which have
meant a shift from passive to active citizenship. Also, needs for health and social care are
more complex and diverse. Thus, responses must be tailored to best meet care demands. As
a result the innovative approach on social care is turning care receivers into active subjects of
their care. Ideally the self becomes invigorated and personal autonomy is a leitmotiv.
The vast majority of Western countries have been strengthening home-based elderly care.
There are diverse examples in Europe showing the shift of social care towards domiciliary
services. For instance, Larsson et al. (2005) show how home help support has changed over
the second half of the 20th Century in Sweden. As such, Sweden epitomises the transition
from strong state support for residential care to a more mixed economy, and more crucially a
deliberate and explicit departure from residential care provision in favour of domiciliary care
services. This process started as early as 1956 and became popular during the mid 1960s
when home help by municipalities was publicly enforced. The 1960s and 1970s showed a large
increase in the use of home services. However, the decade of the 1980s brought concerns
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about the sustainability of the system and tougher needs assessment were introduced. These
changes were further applied with budget reductions during the 1990s. This transformed
home help services as eligible individuals were more frail and demanded personal care. The
introduction of non-public providers of eldercare under the control of municipalities reaffirmed
the transition towards a mixed model of eldercare provision. Less frail individuals had to find
alternative arrangements to meet their needs, whereas people with high demands were not
only assisted with home help support, but also medical care. Rostgaard et al. (2011) reviews
reforms in home care for older individuals in nine European countries. As such, a major
emphasis on home based care is also observed in Austria, Germany, Italy, Ireland, Denmark,
England, Finland, Norway and Sweden. Nevertheless, welfare state arrangements in each
country are distinctive due to different historical, economic, political and social circumstances,
which largely explain differences between them. What is clear is the parallel strains of ageing
populations on public budgets and the transformation of social care systems introducing
principles of economic and market criteria. Baldock and Evers (1991) observed parallel
patterns between the Netherlands, Sweden and the United Kingdom during the decades of
the 1980s and 1990s.
The development of social care systems during the 1980s was accompanied by concern
about public budget spending. Although early debates about the sustainability of welfare state
systems were particularly concerned about the increasing costs of the health care, during
the late 1980s and more generally during the decades of the 1990s and 2000s there was
a shift of attention towards the future sustainability of the social care public provision. The
last two decades of the 20th Century have highlighted this because of the increasing growth
of older people and their demands for care (Esping-Andersen and Sarasa, 2002; Hancock
et al., 2007). It is argued that transnational changes in economies have led to a shift from a
standardised phase of ageing to individualisation (Phillipson, 2003). Thus, the financial burden
associated with an increasingly numerous frail population led to a redefinition of the social
contract between the public and private sectors. The model of public service provision of the
early 1990s was seen as inefficient to tackle the future demands for care.
As a result, the largest and more singular policy transformation in the area of long-term care
in Europe has been the progressive shifting of long-term care provision from public to mixed
models of care. This has been accompanied by the introduction of a market-oriented approach,
stemming from the ideas of the New Public Management. These changes have resulted in a
de-instutionalisation of social care provision. The state is no longer the sole provider and
organiser of care provision and funding. Devolution of responsibilities towards other institutions
such as the market or the family forms part of the new social contract of care. This shifting
towards more mixed provision of care by which public provision is increasingly diminished is
a consequence of debates and legislation stemming from reports such as the Dekker Report
Willingness to Change in the Netherlands (1987), the Griffiths report in the UK (1988) and the
report of the Swedish Advisory Committee on Services for the Elderly in Sweden (1989).
Some critics point to the ‘marketisation’ of care. Long term care policies have been introducing
elements of the private market such as providing competition and consumer choice for
individuals through for-profit organisations providing social care, (Pfau-Effinger and Rostgaard,
2011). In order to ensure availability and choice, LTC systems introduced reforms separating
the funding from the provision of services (Pavolini and Ranci, 2008). To this end, cash for
care schemes have been introduced in a large number of European countries. Cash for care
schemes and tougher eligibility criteria are common strategies to tackle growing pressures for
more social care and increasing numbers of older individuals. Individuals may gain greater
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control of their care provision, but at the same time they are more responsible for managing
their care funds. Thus, there has been a shift in institutional responsibilities from the state to
individuals. Individuals have become part of a much larger system by which a combination of
informal and formal resources are managed .In other words, a person care centred approach
demands a much greater active involvement by the individual. Empowering has come with
added responsibilities for individuals to co-produce care arrangements. Multiple examples
can be found in Europe. The Netherlands introduced Personal Budgets in 1995 but has now
abandoned this policy. Germany also introduced cash for care schemes during the mid 1990s;
Spain on the other hand, has been a later reformer of LTC as a new law was not in force
until 2006; this law also allows cash for care schemes. By contrast, the UK was one of the
earliest countries in incorporating a cash transfer benefit during the early 1980s (Attendance
Allowance). Other examples of the increase in cash transfers for dependent people can be
found in Denmark with the introduction of personal budgets in early 2000s. Similarly, France
has introduced cash for care payment for older people who need help with their daily activities.
They are entitled to a cash benefit for a home caregiver (‘aide sociale aux personnesagees:
aide menagere’). In Germany, however, long-term care insurance has not stimulated the
development of for-profit service providers as the preference for traditional family carers
persists (Glendinning and Moran, 2009).
Another significant policy change is the distribution of social care services costs. Cost
containment measures have been introduced since the early 1990s. Whereas at the initial
stages home domestic care worked on a universalistic publicly financed basis, the most recent
transformations have limited the contribution of the State. Individuals have been asked to
contribute to a larger extent towards the total cost of the service. Thus, personalisation and
a market-oriented approach, together with strains on public budgets, have shaped a system
in which individuals partly or totally contribute to the costs of care. Contributions to subsidise
the total costs of care services are linked to needs assessment and means testing. However,
there are substantial differences between European countries.
These changes have been aimed at lowering public spending on long term care. However, as
argued by Pfau-Effinger (2012), public support for long-term care has not diminished rather the
contrary. Financial support has increased since the 1990s but this might be as a consequence
of more individuals in need of care and/or more individuals with greater need for care for a
longer period of time. The increasing number of individuals on home-based care has resulted
in people living with higher levels of need and disability in the home. Thus, home based care
systems have had to adapt to a much larger number of different care scenarios (Rostgaard
et al., 2011). Although home care provided by public authorities has been decreasing in
favour of private for profit companies, Denmark and Sweden have largely maintained their
public organisation, funding and provision. However, some differences in home care between
Denmark and Sweden are seen. According to Rostgaard and Szebehely (2012) Denmark has
continued to publicly fund and provide care for older adults, whereas Sweden has focused
more and more on targeting individuals with high care needs.
Countries that rely more heavily on family care have introduced changes more recently than
countries with extensive public service support. However, whereas there exists a common
agreement among clinicians, policy makers and social researchers about the desirability for
individuals to remain in their home for as long as possible, little agreement, on the other hand,
is found on what works best for whom.
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7.
Placing the older person at the heart of any solution – a person centred
approach
a.General
At an international level, the United Nations (UN) have produced findings about the rights of
older people (UN, 2012). Apart from their findings about age discrimination and gaps in the
protection of their rights the statement goes wider than this and states that older people hold
rights but are often treated as objects of charity, respect for older people benefits society as a
whole (because their potential can then be capitalised) and older people are an increasingly
powerful group.
Policies to place people, whether they are consumers/patients or clients, at the heart of
decisions are growing. For example people with long term conditions want to be involved
in decisions about their care (and be listened to), access to information to help them make
these decisions, support to understand their condition, confidence to manage self care, joined
up seamless services, proactive care, to be treated as a whole person and for the NHS to
act as one team (DH, 2012a, p. 4). They do not want to be in hospital unless it is absolutely
necessary and then only as part of a planned approach (ibid).
Assumptions should not be made about what older people feel. For example the Office for
National Statistics have shown in a study of adults that those who report that they have health
problems do not always report low levels of life satisfaction (Beaumont and Thomas, 2012).
Nor do those with good health always report high levels of satisfaction with their lives.
Part of a new approach is the policy of ‘reablement’. This has been defined as ‘an ‘approach’
or a ‘philosophy’ which aims to help people act for themselves, rather than having things done
for them’. Pilot projects have been set up in many areas of the country and an evaluation
(Glendinning et al., 2010) has shown their benefits. An intensive short term home care
intervention, usually for 6 weeks, has been made. The concept is a follow on from the practice
of rehabilitation which, although there is no agreed definition, is designed to make positive
impacts on individuals and carers to enable them to live their lives to their fullest potential. Also
of value is Intermediate Care - nursing, physical rehabilitation and therapy to support people
on discharge from hospital or to prevent admission.
As the King’s Fund put it ‘Patients and service users should be a part of the care team and
involved in the co-design and co-production of care and health and social care staff should work
flexibly in teams, making full use of the range of skills available’ (Ham and Dixon, 2012, p.24).
A focus on redesigning services with the local community involved can make savings (e.g. HM
Treasury and Department of Communities and Local Government, 2010, p.29): ‘Telling their
story to public services once’ (p. 34). So can tailored support as issues emerge, rather than
when they become acute (e.g. ibid., p. 36). In this evaluation Bournemouth, Poole and Dorset
use data to identify older people who without a proactive offer of support would otherwise be
likely to need costly services such as being admitted to hospital. Bradford estimated that by
providing a single point of contact for those leaving hospital/care, improving hospital discharge
planning and providing more appropriate support in the community they can reduce the number
of older people being discharged directly into long term residential/nursing home care by an
estimated 50% and £1.8 million (ibid, p.36).
We suggest that putting older people at the heart of any solution must start with their full
involvement in planning what should be provided and how. We commend the Independence
Matters programme which showed a variety of ways in which older people were contributing
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to society (Design Council, 2012). While not fully evaluated yet, initial findings are promising.
These included a scheme (League of Meals) which shared older people’s knowledge and tips
about home cooking and in collaborative cooking sessions. Another was Room for Tea which
connects guests, such as interns in need of short-term accommodation in London, with hosts
who have spare capacity in their homes. The After Work Club is a new social network for men
who do not want to be ‘retired’ and empowers them to do something with their lives.
b. Personalisation and individual budgets
i.General
The policy aspiration to promote services responsive to personal needs and circumstances has
been re-emphasised since 2005 with the introduction of individual budgets for service users.
This approach builds on users’ own agency, reducing the role of professionals (Leadbetter,
2004). The principle of personalisation has been welcomed but questions remain on how it will
work for disabled older people (Spandler, 2004). We use recent research to assess this.
ii. Types of financial support
It is not clear whether the benefits of personalisation will apply in the same way to different
groups with disabilities. For young physically disabled people, personalisation has been
more successful than for those with learning disabilities and the mentally ill. Before outlining
research on older people’s use of Personal (Individual) Budgets, we sketch the elements of
personalisation policy in England.
Direct Payments (DP). These are cash payments in lieu of social care services. The payment
must be sufficient to buy services that meet assessed needs and may be used to employ a
personal assistant (PA) to provide care; to pay a self-employed PA or for care services through
a private agency; to pay a relative, neighbour or friend (but not a co-resident close family
member); to buy equipment, home adaptations and other support.
Personal Budget (PB). This is a money allocation estimated as sufficient to purchase services
to meet assessed needs. It is offered to all who are eligible but a conventional LA care package
may be chosen instead. If a PB is accepted, the allocation can be taken in full or part as a DP,
or used as a managed budget. Introduced in 2008, the government wants everyone eligible for
social care to have a PB, preferably taken as a DP by April 2013 (Foundations, 2012).
Managed PB. This may be managed by the user, family members, the LA, the care service
provider or a broker. In theory, it may be used for personal care, aids and adaptations, cleaning,
gardening, house maintenance, transport, club membership, classes, leisure pursuits or holidays.
Plans are checked and approved by the LA. In practice the choices are more limited.
Conventional LA Care Package. Domiciliary care, in which carers (commissioned by the
LA through block contracts) help disabled older people with washing, toileting, dressing, and
sometimes meals, has been criticised as restricting older people’s choices. Because of limited
funding, visits are often rushed, at inconvenient times and exclude all but prescribed tasks.
Exclusion from formal assistance. In most LAs, those whose needs are assessed as less
than severe are ineligible for assistance, even though this could prolong independent living.
Others with severe needs may be excluded by the means test or be required to make a
contribution to the cost of their care. The LA must still provide information and advice.
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Research on older people’s experience of Personal Budgets. Research has found that
support from LA staff was crucial in ensuring older people could exercise choice and control
(Clark and Spafford, 2001) while other analysts found this was especially so for those with
cognitive impairments (Arksey and Kemp, 2008). Although older people are the largest adult
group of social care service users, their take up of DPs was lower than for other user groups
(Commission for Social Care Inspection (CSCI), 2005) and by 2005-6 was only 1.3% of users
(ONS, 2007). To find out why and to assess the effectiveness of PBs, pilot projects were
carried out in 13 English LAs, from 2005-7 (Glendinning et al., 2008; Moran et al., 2012). Older
disabled people were randomly allocated to a PB or a LA care package, thus avoiding selfselection bias. In the PB group, most used it either to buy basic mainstream services (home
care, meals, equipment and adaptations, 53%) or for personal assistance (41%). A small
minority included other options such as leisure activities. All required support from LA staff in
planning and costing options and allocating their budget.
After six months, older users’ satisfaction with PBs was lower than for other user groups.
Nearly half of older PB users said their view of what they could achieve had not changed,
compared with less than a third of younger PB users (Glendinning et al., 2008). Worryingly,
45% of older PB users had poor psychological ill-health, compared with 29% of the comparison
group. There was no significant difference in meeting needs but older people ‘did not appear
to experience the higher level of control with IBs reported by younger age groups’ (ibid, p. 87).
For psychological wellbeing, ‘standard arrangements look marginally more cost effective’ than
PBs (ibid, p. 110). In the same study, 40 older people were interviewed in depth (Moran et al.,
2012). Some found managing their care services burdensome, others that the PB was too
small to use as they wished and not worth the extra work. Among the tiny minority choosing a
DP, some were anxious about the paperwork, the responsibilities of employing a PA and the
consequences if the employment relationship broke down. Some older people did not want the
responsibility of increased choice and control: ‘quite happy with the arrangement I’ve got’ (ibid,
p. 16). The authors suggest that those who do want more choice and control prefer it within a
conventional LA care package, for example choosing the timing and tasks when carers visit.
But these would push up costs. Recent research in one LA found the average PB allocation
for older people was £243 per week, twice the cost of a conventional care package but only
75% of the average PB across all user groups (Woolham and Benton, 2012). Older people
who had chosen a PB had slightly better psychological health than those with a conventional
care package, but the authors ask whether the LA package would have produced superior
outcomes than PBs if funded at the same level. Analysis of national datasets show a fall
since 2007/8 in the amount of homecare services provided to older people, with high levels of
unmet need for social care; for example, two thirds of those with difficulty in dressing and half
of those needing help with bathing had no support (Vlachantoni et al., 2011). These findings
raise concern about LA spending cuts, if lack of social care worsens older people’s health,
undermining independence and shifting costs onto the NHS.
The relatively low amount of older people’s PBs could make care services by community
microenterprises financially non-viable, especially if they are to recruit and retain suitably
trained care staff (Glendinning, 2011). Thus older people’s choices in use of a PB may be very
limited. A further issue is that lack of Criminal Record Bureau checks on privately-hired care
staff pose a risk of financial or other abuse of older people, if the labour force is unregulated
and mainly unqualified. In the absence of care management by LA social services, family
members (if any are available) could be left struggling to monitor the situation. Reflecting on
personalisation for older people, Glendinning et al. (2008) suggests that gains from increased
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opportunities for choice and control may be very small, or outweighed by potentially significant
costs. Unpredictable disability trajectories, with complex and changing needs for support,
require constant review and renegotiation; the effort this entails adds to the stress for users
coping with painful and distressing conditions. LA staff help in supporting older users’ choices
as their needs change is likely to remain important to users and their relatives.
The aspiration to improve choice in social care for older people living at home depends on
adequate resources to pay for a diverse range of services and high-quality personal care. It
is suggested that personalisation will stimulate an ‘expanding market estimated at £21.4bn
a year, or 1.6% of GDP’ (Technology Strategy Board, p. 2). This market would be funded
either by an older population wealthy enough to purchase high quality personalised care
privately, and/or extra money from the state to enable poorer older people to purchase such
care. Neither of these seems likely. State spending on care and support for older people,
far from rising, is expected to be £250 million pa lower in real terms in 2014 than in 2004,
despite numbers of older people rising by two-thirds (Glendinning, 2008). While the vision of
independence, choice and control may be realised for better-off and less disabled older people
who, although ineligible for state help, can buy what they want from local small businesses,
those who are older, more severely disabled, poorer and living alone (mainly women) could
find their PB too small to buy the amount and quality of care preferred. The research we
have reviewed indicates that personalisation without additional resources will not achieve the
desired revolution in home care for older people.
8.
Practical examples of long-term care at home – the vignettes
In what follows we build on previous work for the Royal Commission on Long Term Care which
looked at alternatives to residential care in institutions for older people on the margins of entering
long term care (Tinker et al., 1999). This examined evaluated options and considered four in
particular. They were intensive home support, co-resident care, very sheltered housing (now
more often known as extra care housing), and assistive technology. We consider six vignettes of
people who were on the margins of institutional care and what services might be needed to keep
them at home taken from the Royal Commission on Long Term Care. The vignettes shown below
illustrate the kinds and intensity of help older people are likely to need. We have added one or
two extra services based on newer services available (in italics). Despite expected advances
in health and longevity, similarly complex and challenging conditions are likely to continue to
affect future cohorts of older people and their families, for short periods or for several years. The
comment and analysis associated with each vignette showed the frequency of help (largely to
make predictions about cost) but this approach may not meet the aspirations of older people, or
close family members, hoping to retain an accustomed way of life and a measure of autonomy.
•
Vignette 1. Woman aged 75-84, recently widowed and living alone. She has a supportive
neighbour who is in full-time employment. She has some restrictions on mobility and
moderate confusion. She is unwilling to go outside by herself now and is unable to go
shopping alone or to collect her pension. She has long-interval needs (i.e. ‘unable to
perform one or more domestic tasks which require to be undertaken occasionally but
less often than daily’).
We estimate this person needs the following services:
•
Day and night care: day centre 1 day per week for 52 weeks;
•
Personal care/household/shopping/finance: home care 2 hours per day 7 days a
week for 52 weeks and bath assistance 1 hour per week for 52 weeks;
•
Care management: 52 weeks.
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•
Vignette 2. Man aged 85+, living alone. He is prone to falls and is a recent widower, not
used to performing any domestic tasks. Cooking, cleaning and doing the laundry are
problematic for him. He is lonely. He has short-interval needs.
We estimate this person needs the following services:
•
•
Home environment: alarms and falls detector;
•
day and night care, day centre 1 day per week for 52 weeks, lunch club 2 days per
week;
•
Personal care/household/shopping/finance: home care 3 hours per week for 52
weeks;
•
Counselling: call 3 times a week from befriender, advocate, good neighbour, visiting
warden;
•
Care management: 52 weeks.
Vignette 3. Woman aged 85+, living alone, and has become anxious and clinically depressed.
Physically quite active but needs encouragement to leave the house and to socialise. Needs
some support with domestic and self-care tasks. She has long-interval needs. She could be
a candidate for home sharing if room in the house.
We estimate this person needs the following services:
•
•
Home environment: alarm system;
•
Day and night care: psycho-geriatric day hospital 1 day per week for 52 weeks;
•
Personal care/household/shopping/finance: home care 3 hours per week for 52
weeks and help with gardening;
•
Health care: community psychiatric nurse 2 hours per week for 52 weeks;
•
Care management: 52 weeks.
Vignette 4. Woman aged 85+, has moved to live with her married daughter who works
part-time. She is mentally capable but has developed diabetes in recent years and now
has terminal cancer. She has become doubly incontinent. Her daughter cannot provide
her with 24-hour-a-day care but is able to provide care at the weekend. She has criticalinterval needs.
We estimate this person needs the following services:
•
Home environment: alarm, telemedicine devices to monitor diabetes, a stair lift and
a downstairs WC;
•
Personal care/household/shopping/finance: day care 2 hours per day 5 days per
week for 52 weeks;
•
Health care: Macmillan nurse 1 hour per week for 52 weeks, a community nurse 1
hour per day 7 days per week and continence supplies;
•
Respite care: hospice care 1 week every 2 months (6 weeks per year);
•
Counselling: 1 hour per week for 50 weeks;
•
Care management: 52 weeks a year.
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•
Vignette 5. Woman aged 75-84, living alone, is mentally capable and has become
wheelchair-bound after e.g. a stroke. She finds her situation demoralising and needs
to be encouraged to socialise and take holidays. She has critical-interval needs (i.e.
‘unable to perform crucial self-care tasks which need to be undertaken frequently and at
short notice’). She could be a candidate for home sharing if room in the house.
We estimate this person needs the following services:
•
•
Home environment: alarms and home sensors, home adaptations such as stair lift,
ramps, doors widening, downstairs WC and kitchen modifications, battery operated
wheelchair and a special bed;
•
Day and night care: day centre 1 day per week for 52 weeks;
•
Personal care/household/shopping/finance: home care 10 hours per day for 6 days
per week for 52 weeks, home care 2 hours per day for 1 day a week and bathing
assistance 1 hour per week for 52 weeks;
•
Health care: community nurse 1 day a week for 52 weeks and continence supplies
1 day a week for 52 weeks;
•
Respite care: 2 weeks of holidays;
•
Counselling: 1 hour per week for 50 weeks;
•
Care management: 52 weeks.
Vignette 6. Man aged 65-74, married and living with his spouse. His dementia is severe
enough that he cannot safely be left alone in the house. He is often awake and active at
night. During the day he uses the toilet frequently and needs some help and supervision.
His wife has arthritis and finds it difficult to get up the stairs. He has short-interval needs
(i.e. ‘unable to perform one or more domestic tasks which require to be undertaken
frequently, that is more often than daily’).
We estimate this person needs the following services:
•
Home environment: a downstairs WC and shower and safety devices such as
wandering sensors and automated doors;
•
Day and night care: day sitting 1 day per week for 4 hours and night sitting 1 night
per week for 52 weeks;
•
Personal care/household/shopping/finance: bathing assistance 1 hour per week for
52 weeks;
•
Health care: visit by community psychiatric nurse once a month;
•
Respite care: 16 weeks a year;
•
Care management: 52 weeks.
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9.
Living environments for the future: alternatives to institutions
a. Criteria for the built environment
The material environment of ‘home’ influences people’s activities and ensures their feelings
of privacy and security through control of access. Moreover, people arrange their own space
to suit their preferences, while still conforming to cultural norms. These principles are usually
violated in institutional settings, where spaces are so compressed and altered as to make
quasi-domestic living impossible, with privacy and control of access eroded. This distances
residents from social participation, as they are no longer perceived by others, or even by
themselves, as living in accord with accepted cultural patterns. But the principles may also be
threatened in alternative housing schemes and even in an older person’s own home as a result
of the way home care is delivered. Control of access is largely lost when a stream of different
helpers, perhaps from different agencies, has to gain entry. Acceptance that the provider is
entering a territory belonging to and in the control of the recipient is key. This may be especially
difficult when a great deal of help is called for, as illustrated in the Vignettes. It can also be
difficult for providers to resist taking control when a domestic setting is transformed by the
necessary introduction of specialist equipment such as orthopaedic beds, mobility equipment
and other devices that can distance the householder from control of space and privacy. These
issues need to be borne in kind when considering innovative technology and design of new
kinds of housing.
b. Criteria for the social environment
When designing new goods and services, it is essential that the emotional and psychological
impacts of becoming a recipient of care are understood. Becoming an object of care by others
in itself threatens dignity and selfhood, whether care is delivered in an institutional setting, an
alternative scheme or in the older person’s own home. For operational reasons, the timing
and nature of care tasks are often reduced to fragments which providers find manageable.
The individual becomes the object of care by a number of individuals, who may be seen as
‘strangers’, and by the organisation providing the service – a bureaucratically-led breakdown
of life. This removes the older person to a peripheral position where any sense of self becomes
difficult to maintain. Feelings of control, containment, order and acceptability, a sense of self
within a societal whole, are at risk and this may be invisible to providers. Any innovative
service needs to disrupt the strong tendency on the part of care providers to take control,
as they aim to save time and maintain efficiency. Without constant sensitivity to the older
person as subject, care provision can become less than supportive of self. Staff training is
vital to ensure sensitivity to people’s feelings about needing and receiving help, yet such input
has been minimal. The range of staff expertise required is indicated in the tasks required to
support the six individuals and their families/friends illustrated by the vignettes.
The Community Care legislation of the early 1990s was followed by the Caring for People
who Live at Home initiative. Nineteen local authorities were generously funded to design and
implement home care services to meet older people’s aspirations more fully than before. The
evaluated outcomes (Perkins et al., 1997) are still valid. They showed the feelings of 100
users about this enhanced provision. They greatly appreciated kindness/politeness; company;
professionalism/efficiency; help/hope for the future; reliability/continuity; willingness. Where
problems were reported, these were due to uncertainties about timing and personnel; limited
time/rushing; unwillingness/ unpleasantness; inefficiency and amateur approaches. This
research shows that the way in which help is provided, and by whom, is most important for
the older person. Individuals must be trained and sensitized to caregiving tasks, since their
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kindness and efficiency are central to the user’s experience. Providing the level of skill required
to maintain sensitive service standards is costly. But if person-centred care (or personalisation)
is to move from rhetoric to reality, preserving disabled older people’s self-esteem, the quality
of care staff is key.
To summarise, the economies of scale that have hitherto been the basis of provision have not
allowed the flexibility to respond to individual circumstances, which is key if putting the older
person at the centre of care is a serious aim. Training high quality care staff will also increase
costs. Extending new devices, forms of housing and services so that they are available to all
who need care will not by itself be enough to ensure person-centred care unless guided by the
disruption in thinking and practice that this research programme calls for.
c. The importance of housing and issues of tenure
To be able to stay in a home of one’s own is what many older people want. This may be literally
in a home they have lived in for some time, a move to a more suitable dwelling or to something
purpose built with care on hand or other options. We examine these options by looking at the
ways in which this can be achieved.
But first we state very firmly the importance of housing. Although the Government has belatedly
acknowledge the role of housing in the 2011 Public Health White Paper we would argue that
more needs to be done. One of us has already presented evidence to the House of Lords
Committee looking at the effects of demographic change (Tinker, 2012). We would summarise
this by arguing that, while the clear link between health and social care has been made and
there are many initiatives to support this the same is not true of housing and these services.
We maintain that housing can act as a preventive service. Experts in the field maintain that
‘Housing standards and suitability are pivotal to achieving these (i.e. targets e.g. to reduce
days in hospital) but receive inadequate attention in health planning and the cost benefits
of suitable, decent housing is under-reported’ (Care and Repair, 2012, p. 4). They go on
to summarise the research: ‘Housing conditions have a significant and quantifiable effect
on health. The Building Research Establishment quantifies the costs to the NHS of specific
aspects of poor housing as over £600 million per year. Many of the chronic health conditions
experienced by older people have a causal link to, or are exacerbated by, particular housing
conditions. This housing/health link becomes more important with age, as people become
more prone to trips and falls and more susceptible to cold or damp related health conditions.
Poor thermal standards in the homes of older people are a quantifiable contributor to excess
winter deaths. There have been many reports that have indentified where housing spend has
led to savings in health’ (Care and Repair, 2012, pp. 4 -5).
The Housing Associations Charitable Trust’s Fit for Living Network also give extensive evidence
of the links between poor health and housing (Stirling, 2011). They quote research published
by the University of Warwick which ‘confirmed that the one – off costs of works to improve
poor housing gives an annual financial saving to the health sector. It also found that low
cost interventions provide particularly good value in terms of health and well-being benefits’
(Stirling, 2011, p. 3).
It is also important to recognise a number of relevant issues for the future. These include
the issue of tenure especially levels of owner occupation. Levels for people of pensionable
age are currently 64% (ONS, 2011, p. 7). The Pensions Policy Institute estimate that the
average level of home ownership among those of state pension age will reach 80% by 2030
(Adams and James, 2009). However, as Care and Repair have pointed out ‘the number of
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low income older homeowners is set to rise significantly, fuelled by two main factors – the
‘Right to Buy’ and peak homeownership generations growing older whilst many pensioners’
incomes (particularly private pensions and annuities) are falling. This means that low income
and poverty will rise amongst older homeowners’ (Care and Repair, 2012, p. 2).
d. Staying in own home
i.General
The most important factor for the home is ensuring that it is suitable. Ideally it should be built
to standards that would be suitable for all times of the life course. Sometimes called ‘inclusive
design’ or ‘design for all’ this means design without the need for adaptation. ‘Lifetime’ homes
describe homes that have been built to be adaptable enough to meet the changing needs of
someone through a lifetime (See section 10a good design).
If changes are needed an occupational therapist is the ideal person to look at the home and
recommend what needs changing. Disabled Facilities Grants up to a maximum of £30,000
are available on their recommendation. They are for owner occupiers or private tenants and
cover work improving access to a bathroom, living room or bedroom, providing extra bathroom
facilities, making the preparation and cooking of food easier, adapting lighting or heating
controls and improving a heating system. We suggest that they are very good value and would
help prevent a move to an institution.
ii. Home sharing
Homeshare schemes match an older householder with a ‘Homesharer’ who can provide
some support and companionship - often a student or public service worker in housing
need. Homesharers, who may be single or a couple, usually live rent free but contribute
to household bills and provide an agreed amount of hours of help each week; shopping,
cooking, cleaning, laundry and gardening. They keep an eye on the older person, providing
company, reassurance, support and, if necessary, liaison with relatives. Homesharers play a
preventive role – improving nutrition, ensuring drugs are taken correctly, reducing risk of falls
and use of emergency services, but they do not provide personal care, which is arranged
separately. Increasing need for personal and/or nursing care by the older person often limits
the duration of a match but Homesharing can shorten hospital stays and delay a move to
residential care.
In the UK, Homesharers are vetted by staff of a charity or statutory body, who ensure both
parties accept the terms, including length of the agreement. When a Homesharer wants to
leave, staff seek a suitable replacement in good time. There are no tenancy rights or contract
of employment. Details of the legal, safety, insurance, financial and ethical safeguards are
provided in Hardy (2011). Homesharing is available for older people with sufficient space in
their home and living where a programme operates. Since the 1980s, 11 schemes have been
developed, including in Greater London, East Sussex, Bristol, Bath, other parts of Somerset,
Worcestershire and Cumbria; some schemes charge for matching and administration (NAAPS
UK, 2011). There is a lack of independent research and evaluation of UK schemes.
Outside the UK, Homeshare schemes aimed at helping frail older people operate in many
western countries. In the US, where the idea started in the 1970s, 100 schemes operate,
involving both rental payment and service exchange. Australia has a few schemes and there
are many in Europe. Schemes are similar across countries in their principles but differ in
details, such as eligibility criteria to join and arrangements for exchanges of money and care.
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In Australia, there is growing interest in Homeshare programmes. Home Share Melbourne,
run by Wesley Mission Victoria, has operated since 2000. Homesharers range from young
students to retired individuals in their early 70s, providing up to 10 hours per week of help
to older householders in return for accommodation (Wesley Mission Victoria, 2012). A
social evaluation of the Homeshare Victoria pilot scheme found householders applied for a
Homesharer due to declining in health or hospital admission, being concerned for safety and
security and wanting companionship. The duration of matches was 32 weeks on average
but variable, about a third lasting at least one year. The study concluded the scheme was of
significant social benefit to the participants (Montague, 2001). A cost-benefit evaluation of the
same scheme estimated annual benefits worth $832,317 to participants and net savings of
$50,222 to the health and social care system (Carstein, 2003). Home Share Tasmania, a pilot
program run by a Government funded agency and covering Hobart, Glenorchy and Clarence’
(Department of Health and Human Resources, 2012) requires 10 hours of help per week in
exchange for accommodation. Administrative costs and a matching fee of A$150 are paid by
both parties (Homesharer and Householder) avoiding any state subsidy. However, no one is
excluded due to an inability to pay.
In Spain schemes are usually managed by public or private non-for-profit agencies, although
a savings bank has participated. A distinction is made between older householders who are
relatively independent and those needing more care, although Homesharing for the latter is rare.
In Catalonia, a Homesharing project matching students aged under 30 with older people over
60 has operated for 12 years. Extra benefits to students are a small payment and much-needed
free accommodation, while the older person benefits from the intergenerational contact.
In other countries, such as the Czech Republic, the homesharer pays a small rent and
provides a few hours of services while in Germany and Austria, homesharers may pay rent or
provide a combination of rent and services. Often, schemes are managed by universities, or
focus on matching students with older people, as in |Italy (Rome, Florence, Bologna, Turin).
Similarly, in France there are several programmes, including the ‘Ensemble 2 générations’ (a
not-for-profit organisation) that matches students and older individuals under different regimes
of exchange: rent or services or a mix of these (ensemble2générations, 2012).
In summary, Homesharing enables older adults to remain living independently in their home
for longer, preventing isolation and saving costs to both the householder and the state in
reducing use of hospital, residential care home and domiciliary services. It provides cheap
accommodation for those needing it, especially students, and a bonus is the contribution to
intergenerational relationships, with transfer of knowledge, experience and values between
younger and older people.
iii. Home modifications
Home modifications include repairs, aids and adaptations. Largely pioneered in the UK there
are many examples of evaluated successful schemes.
In the UK Home improvement services are agencies that provide comprehensive, practical housing
help to people on low income home owners who need help with repairs and adaptations to their
homes. They provide advice, help and support to repair, improve or adapt their home or move to
more suitable housing if this is the best option. They are currently facing cuts in funding.
The value of Handyperson schemes that offer ‘that little bit of help’ have been shown in an
evaluation (Croucher et al., 2012). Schemes are described in the evaluation as ‘assisting
older, disabled and vulnerable people with small building repairs, minor adaptation such as the
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installation of grab rails and temporary ramps, ‘odd’ jobs (such as putting up shelves, moving
furniture), falls and accident checks, and home safety and energy efficiency checks’ (ibid, p.1).
The research found that the services ‘deliver a relatively high volume of preventive activity a
relatively low cost’ (ibid, p. 3). In particular the report focuses on the preventive role where
small repairs and minor adaptations offer the potential to reduce demand for health and social
care services.
Services could reduce the risk of falls and enable independent living, increase people’s security
by measures to prevent burglaries, reduce the length of hospital stay by discharge schemes
that can install key safes, grab rails, temporary ramps, moving a bed etc, enable energy
efficiency schemes and measures that lead to improvement in health and wellbeing. In addition
the research on cost effectiveness showed that, for example, adaptations could postpone entry
to residential care by a year saving on average £28,080 p.a.; preventing a fall leading to a
hip fracture could save the state £18,665 on average, reduce the costs of home care saving
£1,200 to £29,000 p.a. and speed up patient release, a potential saving of at least £120 per
day (ibid p. 3). The research additionally evaluated some pilot projects which went beyond the
traditional services by, for example, providing a more tailored service to people with dementia.
Another study endorsed these findings summarising research showing that improving
people’s homes produced real benefits in health and wellbeing in addition to producing cost
savings (Papworth Trust, 2012). Their recommendations included a new partnership between
the health care and home adaptations sectors including the involvement of the new Health
and Wellbeing Boards, giving GPs a bigger role including being able to prescribe aids and
adaptations, giving more information and advice, changing means testing rules and offering
low interest loans for people with home equity who do not qualify for help.
For home owners with housing equity it is possible to release some of that equity to pay for
repairs and adaptations. However, older people have not been enthusiastic about taking up
this option as some schemes have had problems. It has been suggested that ‘State support
for social lending possibly coupled with some grant help is an important measure to ensure
that equity release options become a viable option rather than one which is talked about as a
solution but is not effectively used’ (Care and Repair, 2012, p. 7).
Outside the UK an early piece of research on the impact of home modifications in prolonging
independent lifestyles of older adults was in the USA by Mann et al. (1999). This assessed
through randomised control trials the functional decline of a group of frail older individuals
over a period of 18 months who had assistive technologies and home modifications. The
assessed assistive technologies refer to canes, walkers and bath benches. Results show a
lower functional decline among the group of individuals that received treatment compared
with the control group. By contrast, a study by Fange (2005) in Sweden among a group of 98
community-dwelling individuals found little impact of home modifications on ‘activity aspects’
and ‘personal and social aspects’, though individuals reported higher independence in
‘bathing’. Nevertheless, as Petersson et al. (2008) show, home modifications help to decrease
the difficulty in performing personal, instrumental and mobility tasks. Other studies indicate
positive outcomes of home modifications for older individuals on improving the sense of safety
and security. For instance, Petersson et al. (2011) found significant increases in the sense of
safety and security among Swedish individuals receiving home modifications. The project,
embedded in a much larger research on home modifications, points out the potential of small
physical changes in the home to maintain individuals’ independence in their home. However,
according to Fange (2005), the largest problem in comparing home modification interventions
is the lack of a homogenous conceptual definition and methods to assess individuals.
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Recent research was conducted in 2011 by the Social Services Department of Barcelona
City Council in collaboration with the Independent Living Association (Centre de vida
independent, 2012). The programme of home modification was aimed at individuals aged
65 and older who have telecare services to promote personal autonomy. A total of 911
individuals benefited from the home repairs and technical support in the home. Common
characteristics of these individuals were that the vast majority had low incomes (74%), lived
alone (approx. 92%) and were females (approx. 90%). Among the home modifications and
technical aids were: grab bars, raised toilet seats, shower seats, long handle brushes and
combs, towels for toes and back, adapted drinking cups, pan handle holders, bowls and
plates with high sides, sock aids, mobile lifts, articulated beds, walkers, senior-friendly TV
remote control or doorbell amplifiers. Positive effects were found regarding security, quality of
life and autonomy to perform daily life activities. Another finding that shows the preventative
nature of the programme is that ‘The estimated rates of prevalence for each severity level
of dependence for a range of ages are the same in the next lower range if a prevention
programme is implemented’ (Alemany et al. 2012).
Home modifications have also been reported to efficiently tackle risk factors for falls and
consequently hip fractures. These are associated with greater probabilities of mortality
and morbidity among older individuals (Wolinsky et al., 1997). Recent systematic research
conducted by Clemson and colleagues (2008) reviewed a series of environmental randomised
trials assessing the impact of home modifications in reducing falls. Home environmental
programmes were found to reduce the risk of falls, especially for individuals with a high
risk. On the other hand, research conducted by Lord et al. (2006) points out that home
modifications are not directly preventative among the group of older individuals. The authors
reviewed five randomised controlled trials showing positive outcomes, although these studies
did report inconsistent findings. Similarly, Stevens et al. (2001) point out the lack of positive
outcomes in avoiding falls from a one-off intervention, although the study was not exclusively
focussed on home modifications but also education and hazard assessment. Thus, home
modifications show mixed results as to the efficacy in improving independence and quality of
life of older individuals.
Public policy aimed at funding and providing home modifications for disabled individuals varies
across European countries. Nordic countries are among the most generous in publicly funding
home modifications through councils and local authorities. By contrast, Southern Mediterranean
and Central countries have much lower public involvement in funding and provision.
e. Who moves and why
We also need to address the issue of moving. In 2008/09 9% of all households in England
moved within the previous 12 months and owner occupiers were more likely to move than
tenants (ONS, 2011, p. 14). Older people are not a particularly mobile group but are more
likely than younger to under occupy. A study in Sweden of cohorts of people born in the 1920s,
1930s and 1940s found that the majority remained in their own home but almost one quarter
did move (Abramsson and Anderson, 2012). Of these a smaller number moved from owner
occupied housing to a tenant cooperative or rented home. This study showed the importance
of cohort differences. They say ‘If the characteristics of the movers from single-family housing
to apartments – such as higher divorce rates, higher education, foreign born and generating
capital income for the sale of a house – are represented to a larger extent among the younger
cohorts, then we can expect more such movers in the years to come provided that the types
of housing in demand is available’ (ibid, p. 600).
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f. Moving to a specially designed home
For some people a move may take place to a specially designed home. This is usually one
designed to disability or wheelchair standards. The concept of Lifetime homes pioneered by
the Joseph Rowntree Foundation has been proved to be a cost effective solution in that people
can stay in this kind of home for all their lives.
g. Moving to specialist grouped housing – sheltered and very sheltered/extra
care housing
In the UK most specialist housing started in the form of sheltered housing. This was a group
of flats or bungalows with communal facilities, a warden (often living on the site) and an alarm
system. However, research showed that it was difficult to keep very frail people there as there
was not enough support and some homes became difficult to let (Tinker, 1995). From this
concept developed a form of housing with more support.
Extra care (or very sheltered) housing is sheltered housing with additional features such as
24 hour care on hand, enhanced communal facilities and at least one meal a day provided.
The first evaluation of such schemes was a national survey in 1989 (Tinker, 1989) which
found that it was ‘one way in which elderly people can retain their independence and yet
receive extra care’. It was considered to be one attractive alternative to most for hospital or
residential care. It was popular with management, elderly people and staff. However it was
‘generally more expensive than staying at home with an innovatory service though generally
cheaper for elderly people than hospital or residential care (Tinker, 1989, p. 126). Subsequent
evaluations have found similar findings. Key findings of the largest recent study found that
the most important attractions of extra care housing were: having their own front door, flexible
on-site care and support, security, accessible living arrangements and bathrooms, the size
of the accommodation available (Netten et al., May 2012). The overall conclusions were very
positive. It was concluded that ‘People had generally made a positive choice to move into extra
care housing, with high expectations, often focused on an improved social life. After they had
moved in, most people reported a good quality of life, enjoyed a good social life, and valued
he social activities and events on offer. Comparing residents with similar characteristics in
care homes, residents in extra care housing had better outcomes and costs were not higher
(ibid, p.4). However the researchers went on to caution that ‘Without continuing to attract a
wide range of residents, including those with few or no care and support needs as well as
those with higher levels of need, extra care housing may become like residential care and
also its distinctiveness’. This is the general dilemma when services are rationed to those with
the greatest need.
Another study concluded that extra care is a healthy home for life, translates into fewer falls,
and supports some of the oldest and frailest members of society. The researchers also looked
at the possible savings in time in hospital. They state that ‘Residence in extra care housing
is associated with a reduced level of expected nights spent in hospital than may be expected
in an equivalent population living in the community, matched on demographic and selected
socioeconomic characteristics. However, the differences are attributable to a lower propensity
of being confined in hospital initially, and not through shorter lengths of stay. Our findings
generally support our notion that extra care may play a part in reducing the risk of initial
entry as a hospital inpatient’ (Kneale, 2011, p. 122). The conclusions of this study were that
‘The benefits of residence in extra care housing could translate into substantial cost savings,
particularly in the long-term’ (ibid, p. 132).
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The report goes on to make the case for more or this kind of provision. A small amount of
resources have recently been made available for the development of extra care housing. The
Government made available a £300 million capital grant to stimulate the market. It is hoped
that this will result in an extra 9,000 special homes. Although most extra care housing has
been provided in the public sector either by local authorities or housing associations there is
also a case for private provision, a Private Finance Initiative/private partnerships and using
developers own resources (King et al, 2005).
A note of caution about the expense of extra care housing was expressed in the recent HAPPI
2 report produced by the All Party Parliamentary Group on Housing and Care for Older People
(Best and Porteus, 2012) when they suggested that it might not always be economically
possible for every scheme to have a range of communal facilities and on-site staff. They
state that ‘For the mass of retirement housing projects the current age of austerity means
‘cutting one’s cloth ‘to take account of more straightened times. While some space for social
interaction, at least a ‘club room’ with kitchen facilities will remain important, it seems that in
most new developments the footprint of communal space will have to contract’ (ibid, p. 11).
However, they also put the case for provision of 2 bedroom apartments. This might encourage
older people to downsize.
Outside the UK across the world there has been a movement towards smaller clusters of
housing with varying degrees of support. The ultimate purpose of small clusters was to
improve privacy, autonomy, choice, control and independence of residents (Regnier and
Denton, 2009). To that end, a series of new purpose-built group housing clusters have been
developed in various cities in different countries. In this category of housing we can include
Assisted Living Facilities (ALFs) in the USA or cluster housing schemes in the Scandinavian
countries or the more recent ‘housing with services’. These facilities are home like supportive
living arrangements similar to nursing homes but with a stronger promotion of independence,
intimacy and choice.
Cluster housing has a long tradition in the European Nordic countries. In Sweden, for instance,
cluster housing or Fokus housing has its origins in the late 1960s. During the 1970s the Focus
society built 280 apartments located in 12 cities. Most of the cluster housing building consists
of 50 or 60 units with 10 to 15 special apartments for individuals with extensive care needs.
During the 1980s more apartments were built, but the original philosophy of cluster housing
was modified. ‘Boendeservice’ are also apartments but in smaller units with fewer apartments
and not shared facilities. There are only 5 to 10 apartments with round-the-clock access to
staff from a separate unit (Ratzka, 1986).
Other similar ‘housing with services’ experiences have been developed in European Countries.
For instance, in Spain the City Council of Barcelona has recently promoted 925 units of
apartments for older individuals (‘Habitatges amb serveis per a gent gran’) (Ajuntament de
Barcelona, 2012) that serve over 1,000 individuals. All the apartments are purpose-built homes
with telecare technologies and round-the-clock staff assistance.
Assisted living facilities are particularly popular in the United States where there has been
a rapidly growing market of these licensed facilities (Ball et al., 2004). Although they share
similar characteristics with cluster housing, they are substantially different from the new
Scandinavian model of ‘housing with services’. The main characteristics of these facilities are
their nonmedical character, 24 hours assistance and personal care services for dependent
older individuals. A study conducted in various assisted living facilities in the U.S. found an
overall positive outcome of living in such institutions and avoiding stressful situations of leaving
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a familiar place. However, for a few residents with high needs staying in ALFs turned out to
increase physical impairments and being socially neglected. Thus, ALFs are a perfect fit for
certain individuals with low or mild care needs. The research by Ball and colleagues (2004)
indicates the importance of managing resident decline; this is balancing needs with resources
(with a consequent increase in fees).
A more recent type of residential group living developed in the Netherlands shares similarities
with ‘housing services’ or ‘service houses’ in the Scandinavian countries. ‘Apartments for life’
is an innovative housing arrangement for older people boosted by the non-profit organisation
Humanitas Foundation in Rotterdam in the mid 1990s. Its revolutionary concept of care, cure
and community living has served as a good example for Australia. The housing project was
projected as an alternative to traditional residential and nursing home care. The major purpose
is to keep people independent for as long as possible in a local community where they feel
safe and where their demands for care and social exchange are easily met.
Apartments for life started with 350 apartments in three complexes in 1995. It has now been
expanded and has 1,700 apartments in 15 different complexes with an estimated figure of
2,500 individuals making use of it (Humanitas Foundation, 2012). These apartments offer a
wider choice of care. Residents are free to organise their care needs as they wish rather than
living with constrained schedules of activities and care. Apartments are specially designed
for individuals with care needs (‘age proof’ apartments). People can continue to live with their
partner or relative. These apartments can be purchased (owner-occupied) or rented. In the
case of Humanitas-Bergwegdiffers in that the apartments (195 in total) are subsidised rented
apartments. The Humanitas Foundation stresses the idea of ‘Use it’ or ‘Lose it’. This idea is
related to empowering individuals with care decisions. They are in charge of their daily living as
long as they are capable. ‘Patronisation and ‘killing with kindness’ are disastrous for a person’s
functioning and consequently for his or her human dignity’ (Humanitas Foundation, 2012).
The value of extra care housing at the end of life is highlighted in section 11.
h. Retirement villages
A relatively recent development in housing for older people in the UK has been retirement
villages. These are purpose built developments usually with different types of accommodation
and sometimes the whole range of facilities from ordinary small homes, nursing homes, leisure
facilities and a restaurant. More familiar in the United States and Australia they have proved
popular with residents. In the UK most have been for owner occupation or for a particular
group of people such as Licensed Victuallers. Many are leasehold and are subject to rises in
service charges. There is little information about such developments in the UK apart from one
or two evaluations of specific schemes such as Berryhill Retirement Village in the Midlands
(Bernard et al., 2004) and Hartrigg Oaks in York (Croucher et al., 2003). Both these have been
shown to be popular with the residents. It remains to be seen if they follow in the pattern of
some in the USA where there have been problems of schemes going bankrupt and of people
being turned out when they become frail.
In the US, New Zealand and South Africa, retirement villages for older adults are fairly
common. The village model has its origin in the US with the construction of Beacon Hill Village
(see references – website). This is a membership organisation in the heart of Boston founded
in 2001. It was an initiative of a group of long-time Beacon Hill residents as an alternative
to moving from their homes to retirement or assisted living communities. Beacon Hill Village
enables a growing and diverse group of Boston residents to stay in their neighbourhoods as
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they age and become more fragile without the need to move to a nursing home. By organising
and delivering programs and services residents can lead safe, healthy productive lives in
their own homes with care facilities if needed. There are also a range of social and cultural
activities available to residents. According to Village to Village network (2012) there are more
than 60 initiatives varying in their characteristics; they are self-governing institutions based
on membership that provide and arrange services with the objective to help individuals age in
place (Greenfield et al., 2012) through a ‘combination of non-professional services, such as
transportation, housekeeping and companionship, as well as referrals to existing community
services’ (Scharlach et al., 2011). As pointed out by Scharlach et al. (2011) and Greenfield et
al. (2012) there is an alarming lack of evaluation and examination of village initiatives across
the country. When Scharlach et al. (2011) conducted a survey of 30 fully operational villages
across the US the findings were restricted to describing the characteristics of the villages,
excluding any review on health outcomes or impact on individuals’ well-being.
In the Netherlands Hogewey village was founded about two decades ago (1993) near
Amsterdam (Weesp). This organisation is designed for individuals with dementia who can
no longer live independently in their own home. The village can host up to 167 residents.
The organisation aims at making individuals as comfortable as possible by enabling them ‘to
continue to live in the manner to which they were accustomed prior the onset of dementia’
(Notter et al., 2004, p. 449). To that end, they have created different life styles within the
village (‘homes within homes’). Seven lifestyles are designed to better adapt to different social
circumstances of individuals. As such, these seven styles are: Gooise or aristocracy; Culturel;
Amsterdamse (urban crowded lifestyle); Indische for people from Indonesia; Christelijke
for individuals with Christian religious faith; Ambachtelijke for people described as having a
working class lifestyle; Huiselijke for people who were domestic workers. Each individual is
then assessed and placed in one of the seven lifestyles such as beliefs, previous activity,
hobbies, etc. They all have their own house and are in charge of a small budget to buy food,
medicines and care supplies. There are three different groups of individuals with different
needs and capabilities: mildly impaired or largely autonomous; moderate to severe impaired
people with dementia who need professional supervision on a daily basis; and, bed-ridden
individuals. The village offers a wide range of facilities such as a grocery, kitchen or a bar.
Care is provided 24 hours seven days a week, but individuals can walk freely around the
premises. According to Hurley (2012) the costs for the resident in Hogewey does not exceed
the costs of a nursing home in Holland. However, there has not been a thorough examination
of the cost-effectiveness of Hogewey. There is also a lack of studies reporting on clinical
outcomes (Hurley, 2012).
A similar village initiative in the USA is TigerPlace (see references – website Americare).
This innovative community-based care facility has been designed, supported and provided
by the Sinclair Home care, a licensed Medicare certified home health agency and an in-home
provider of supportive services founded in 1999, in collaboration with the faculty from many
colleges and schools, mainly the Sinclair School of Nursing (SSNO) in Missouri. TigerPlace
is located in Missouri (USA) and is the expression of a new Ageing in Place Project that aims
at maximising and promoting independence for older adults (Rantz et al., 2008) using the
village model in combination with smart home technologies. The TigerPlace project started
in 2003 with 33 apartment units and more recently 24 more units have been added. Each
apartment is fully equipped with kitchen, washer and dryer. The model of the facility is a village
one for independent living. TigerPlace consists of 31 independent apartments and uses the
same technology. Sensors are installed in the apartment to monitor individuals’ activities. The
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building offers a series of facilities for intermediate long-term care. A centralised wellness
centre organises activities to help resident remain active and independent for as long as
possible. The wellness centre is open three mornings a week, but all residents are entitled
to use a registered nurse on call 24 hours a day. Sinclair Home care provides a large variety
of in-home services such as help with activities of daily living and care coordination of health
conditions. Demiris, Oliver et al. (2008) interviewed nine people using ambient technology in
their apartment in the Tiger Village retirement facility. One of the characteristics of this village is
the emphasis on combining community-dwelling services with home-based technologies. The
team conducted 75 interviews and three observational sessions. The aim of the interviews was
to look into the individuals’ perceptions of the sensor technologies. The findings are very similar
to what van Hoof et al. (2011) found among users of smart technologies in the Netherlands.
There are three clear phases: familiarisation, adjustment and curiosity and integration. People
in the study did not report privacy concerns. However, there are three major caveats in Oliver
and colleagues’ study. First, it does not provide evidence about the effects of the technology
or benefits of community based care for individuals in terms of health outcomes or well-being.
Secondly, there is a lack of research on the cost-effectiveness of this facility and whether it is
affordable for the large majority of people. Finally, the findings on individuals’ perceptions are
based on a very small sample of only nine individuals.
i. Other options
Other options include sharing a home with a family either in a granny flat or living with the
family; sharing with another older person or with a group (such as cohousing).
i. Sharing a home with a family
Some older people move in with a family or, more rarely, a family will move in with them. They
may share the home and live together or may live as separate households as in Granny Flats.
This is where the two households have accommodation with some of their own facilities such
as a front door and/or cooking arrangements. Some early research of this form of housing in
the public sector showed how successful they were for the older people and families (Tinker,
1976). They can provide mutual support and may release an under-occupied home if the older
person moves. However, they were inflexible as there were problems when the older person
died or the family moved. This kind of housing is more practical in the owner occupied sector
where an additional home can be used for others such as an au pair or other staff, a returning
adult child or let. We suggest that this form of housing should be encouraged. Little is known
when two or three older people live together whether they are related (such as two sisters) or
unrelated friends.
ii. Adult placements/shared lives
An older person with modest care needs can pay (including from a Personal Budget) to live in
the household of a carefully matched and trained Family Care Provider (FCP) who provides
an agreed amount of personal care. The matching service is regulated and may be operated
by an agency such as NAAPS, a UK-wide network of very small family and communitybased care and support solutions (NAAPS UK, 2010a) or a LA such as the Peterborough
Adult Placement Scheme (2010). These recruit, assess and approve families, charging a fee
depending on the older person’s age and means. About half the matches (3,800 of 10,000)
are affiliated to NAAPS under the brand name Shared Lives (NAAPS 2010a). The placement
may be on a long or short-term basis, as FCPs may provide day care or post-hospital care
and enable respite for informal carers. Shared Lives services are closely aligned with the
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goals of personalisation (see section 7), supporting the older person to enjoy a social life and
pursue independent relationships, ensuring their wishes are central in any decisions affecting
them. NAAPS (2010a: 6) claims that ‘Many people’s wellbeing and quality of life improves
dramatically when they start to use Shared Lives’ while the Care Quality Commission’s 2010
report rated 95% of English Shared Lives schemes as good or excellent and none as poor.
However, there are some drawbacks to adult placement for older people. Where an older
person wishes to purchase extra care services from a personal assistant, they may need a
‘suitable person’ to manage their money and any employment contract involved. But naming
the FCP as the suitable person can give rise to a conflict of interest and/or be unlawful.
Similarly, if the cared-for person wished to use Direct Payments to purchase services, it would
be preferable to have a family member, friend or the LA as the ‘suitable person’. Modifications
to the Shared Lives structure, especially where the mediating and matching role of Shared
Lives staff is by-passed to cut costs, risk falling foul of legal and ethical safeguards for the
participants. Details are very complex as each of the diverse arrangements possible comes
under different regulations, tax regime and employment law, and these differ among the UK
nations. Moreover, adult placement has been oriented towards younger people and moving
to live in another household may be less suited to older people, diminishing their sense of
self and the continuity of their life (see section 2). In addition, the requirement to pay for the
placement (in contrast to Homeshare in the UK) introduces complexity and legal issues that
can be unwelcome for the older person.
For local authorities (LAs), considerable savings can be made through placing an older person
through Shared Lives, who say they save the LA £2,340 per person pa on average relative
to other forms of support. But savings are made at the expense of FCPs, who are available
out of hours and typically do more than they are paid for. Some FCPs have reported that cuts
in LA day care services put them under pressure that impaired the quality of their support to
the older person: ‘They rely on us feeling guilty and providing free support’. This extra work
is likely to increase as cuts in LA budgets for social care bite. A Shared Lives staff member
warned, ‘We’re in danger of recreating bad family situations if we don’t fund a proper service’
(NAAPS UK, 2010a, p. 7). Although the CQC assessments of Shared Lives schemes are
positive, there is no other independent evaluation.
iii.Cohousing
Cohousing denotes a self-starting, self-managing intentional community that can be
intergenerational or restricted to those over age 50. Such communities are dedicated to
sharing activities, keeping active and mutual support. They cater for older people who value
their autonomy and privacy, yet enjoy companionship and reciprocal minor assistance. Social
isolation, a common problem among British older people was found by a Swedish study to
be significantly linked to dementia rates. Its advocates claim that cohousing, by facilitating
social interaction within the community and through its ethos of mutual self-help, may allow
older people to avoid entry to a residential care home or delay this as long as possible. The
energies of older people themselves are thus harnessed to reduce demand on health and
social care services (Brenton, 2001; 2004). Neuberger (2008) sees co-housing as enlarging
frail older people’s choices, catering for their preference to avoid a nursing home or delay
entry as long as possible. In this section, we describe various forms of cohousing in Europe
and North America in terms of how such communities work, their robustness, and the kind of
mutual care practised. However, there is a lack of research on how communities cope when
members’ need for care increases.
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The UK is a cohousing laggard by comparison with international developments. There are
many affinity communities coordinated by the Cohousing Network, but as yet no cohousing
scheme for older people. The Older Women’s CoHousing group (OWCH) is a group of London
women aged from 50 to 80 who meet regularly to plan their own cohousing community in the
capital, with mixed rental and owned units. When this is achieved, it could be the first such
development by older people in the United Kingdom (OWCH, 2009). But so far the UK is
arguably missing an opportunity to use older people’s own organizing energy and capacity for
mutual aid, as well as to save costs to the state.
Co-housing outside the UK has plenty of examples. Denmark has about 350 collective housing
schemes, mostly in groups of 15-30 units. There are also about 140 intergenerational schemes.
Cohousing is located near small and medium-sized provincial towns. Senior units, each with
kitchen, bathroom and small garden, are typically low terraced houses around a courtyard and
sharing common facilities. Only 1% of Danes aged 50+ live in collective housing, but many
would like to, attracted by the sense of community, good neighbours, reciprocal support and
arranging activities together (Kahler, 2010). DaneAge (2007) estimated between 15 and 20 per
cent of older people wanted to move into collective housing or senior-citizen houses. A 2009
survey of 23 seniors aged 60-90 in a cohousing scheme indicated they felt happy, safe and
had better self-assessed health than in 1999. The majority were active in associations, such
as evening classes or sports, and benefitted from help with small tasks and from company.
Before moving in, 85% said they often felt lonely but only 10% said this in 2009. Optional
communal meals, prepared on a rota basis, are shared three to five times per week (Kahler,
2010; Berger, 2010).
Sweden has 45 cohousing schemes, the result of civil society campaigns and positive
responses from public housing authorities during the 1980s. The projects are concentrated in
the main urban centres and are mainly in blocks of flats. Communal facilities are usually on the
ground floor but may include a roof patio. Senior cohousing units are small (e.g. 8 sqm) which
keeps them affordable. Units are popular and there are waiting lists. Choi’s (2004) survey of
residents in Scandinavian cohousing found that most were healthy, in their 70s, and satisfied
with their home. It would be interesting to follow them up when they are older.
In the Netherlands cohousing (or centraal wonen) started in the 1960s, mainly founded
by young people, and the number of schemes has increased since then. Each household
has the normal rooms and facilities but shares facilities such as laundries, meeting places,
hobby rooms, workshops and garden space. Schemes usually have 30 to 70 households,
sometimes in self-managing clusters. Most are rented from a housing cooperative but some
are owner-occupied (Bakker, 2009). In the 1980s, communities for seniors, ‘living groups of
the elderly’ were developed, to meet the needs of the growing proportion of the population
aged over 50. These are supported by local government as they are expected to reduce
care costs, but they are started by interested individuals and couples. The Dutch Federation
of Intentional Communities commissioned a study in 2008 into the level and quality of
mutual caring experienced in cohousing communities (Bakker, 2009). This author notes
that individuals need to be able to cope with the conflicts that sometimes arise in making
democratic decisions and negotiating on the basis of equality, co-operation and a sense
of responsibility; there are no leaders. The reward is a sense of belonging, reciprocity and
learning from others. Members value this form of living for its warmth and companionability
(gezelligheid), social interaction and mutual support. Shared meals are rare but members
act as friendly neighbours. Some older people choose a mixed-age community, others an
age-based one. An age range from 55 to over 90 years allows natural renewal to take place,
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with younger and more able members providing help for the most disabled. Cohousing has
spread from Europe across the Atlantic, taking several new forms.
In North America several types of supportive intentional communities have emerged to
challenge the isolation and social exclusion that many older people experience. The vast
distances of the USA and habits of driving, fast food, material consumption and TV can
exacerbate isolation, disconnectedness and fear, argues Wann (2007). His solution, for older
people, was a ‘neighbourhood on purpose’ – where several households collectively buy land
and property where they drive less, exercise more, produce their own food, energy, and
entertainment, meeting needs for security, self-expression, affectionate friendships, democratic
decision-making, shared leisure and mutual respect (ibid). Wann’s group of 60 people had
been inspired by the lively interactive quality of Denmark’s cohousing, as conveyed by
McCamant and Durrett (1988). Their book generated a USA cohousing movement, with over
100 communities formed by 2007 and more planned. Cohousing takes several forms including
cooperative schemes based on a shared building, with resident control and self-governance,
often based on common values - religious, utopian or ecological. Those communities that
recruit or breed younger members can adjust to the increasing care needs of older members,
remaining age-balanced and resilient. However, older people may find they have less say in
decisions in a mixed age community. Senior Cooperatives cater only for older people: ‘the
fastest growing housing alternative in small town America’.
Among more adventurous older people, mutual assistance is provided in Transient Recreational
Vehicle (RV) clubs. These offer a supportive social network and RV parks for temporary
settlement between travels. Women in RV communities care for others who are ill or dying.
Canada has had housing cooperatives for some time, some started by older people as retirees
needing affordable housing where members would share responsibility for one another. In
Toronto a 152-unit cohousing project for women aged over 45 was opened in 1997 by the
Older Women’s Network Cooperative. It allocates some units for disabled and abused women,
providing a safe and affordable home for all.
We have described a variety of forms of cohousing across two continents. They differ in some
details but all foster a sense of responsibility for members; an ethos that allows people to
thrive in a secure and friendly environment; that both protects and stimulates; that engenders
mutual respect and preserves choice and autonomy. A private front door and personal space
matters to most people over 50, as do good neighbours and opportunities for easy everyday
social interaction. Cohousing can meet these needs, improving the quality of life for older
people needing only modest amounts of help and making efficient use of scarce building
land. A bonus is the potential for reducing dementia rates by preventing isolation. Less clear
is the capacity for coping when members develop conditions such as dementia, stroke or
incontinence, although US evidence suggests mixed age groups can cope better. Because
there are no senior cohousing communities in the UK, the concept cannot be evaluated here.
However studies in several European countries suggest it is beneficial and popular among
residents and European schemes provide practical models for such developments in the UK.
j. Some radical alternatives to institutions and staying at home such as hotels,
cruise ships
Some older people in the UK used to move to hotels or boarding houses (often by the sea) in
old age. Even recently there has been publicity about one or two older people who have moved
to an hotel. ‘The couple who stopped at a Travelodge – and stayed there for 22 years’ (The
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Times, 11.9.07) and ‘Why shouldn’t older people choose to live in a Travelodge?’ (Guardian
11.9.07). They are now said to have moved out. Moving to a little more evidence rather than
anecdote a study published in the Journal of American Geriatrics Society (Lindquist and Golub,
2004) claimed that living on a cruise ship provides a better quality of life and is cost effective for
elderly people who need help to live independently. The author Dr Lee Lindquist compared the
amenities and costs in assisted living (in the USA) with accommodation on cruise ships. ‘Both
cruise ship and assisted living facilities offer single room apartments with a private bathroom,
a shower with easy access, some help, cable television, security services and entertainment.
Cruise ships, however, have superior health facilities – one or more doctors, nurses available
24 hours a day, defibrillators, equipment for dealing with medical emergencies and the ability
to give intravenous fluids and antibiotics’ (ibid). In the original article the authors also claim
that contact with relatives would be encouraged. As they put it ‘go see grandma’ would be a
good option for children and grandchildren who would get to take a holiday at the same time.
(Lindquist and Golub, 2004, p. 1953).
10. Key factors for revolutionalising long term care for older people
a. Good design of homes and towns
Homes built to Lifetime standards (already described) are ideal as they can enable someone
to live in them for all their lives. To be welcomed is the advice from the Minister (3.1.12) to local
councils to consider the needs of older people in their housing plans, by ensuring that new
homes being built include features such as wider doors for wheelchairs and walk-in showers.
Equally important is the wider environment such as towns that are age friendly (see the work
of the WHO, 2007 and Biggs and Tinker, 2007). Planning has a role here too.
b. Changing patterns of informal and formal care
There are at least two aspects of care. The first, and the most important in terms of size, is
informal care (see section 4e). Co-resident care, particularly that given by spouses, was noted
as crucial in our work for the Royal Commission in 1999 (Tinker et al, 1999). As well as family
care, there is care/support from others in the community. A befriending service is quoted in a
DH document on mental health (DH, 2011a). Research based on an evaluated pilot under the
Brighter Futures Group programmes, shows that ‘preventing loneliness could reduce health
service use by older people and led to substantial savings’ (ibid, p. 10).
The second type of care is formal, provided by a professional such as a nurse or occupational
therapist. In the home it is usually referred to as home care. A European research project,
the LIVINDIDHOME study, investigated what reforms had been introduced in nine European
countries focussing on 2000/2010 (Rostgaard et al., 2011). They defined home care as help
with bodily and domestic tasks in the home of the recipient. The aim of the reforms was to
fund and deliver: high quality care which meets increasingly diversified and individualised
needs; an efficient and effective provision mechanism and cost containment; a stronger userorientation in the provision of care; an optimal balance between informal and formal care and
other resources; finding the best way to attract and retain home workers.
From an English perspective (and this only covered England as other parts of the UK have
slightly different arrangements) research revealed the problems of underfunding (Glendinning
and Wilde, 2011) and the need for consistent policies to support more people at home for
longer, in order to avoid (or at least delay) entry to residential care. However, entitlement to
statutory home care or cash in lieu has been increasingly restricted to those with the highest
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needs. For low level/preventive services, older people must rely on voluntary organisations.
The expansion of personal budgets and direct payments was intended to give people more
control over their care services (see section 7) and to stimulate a mixed economy of supply.
With targeting of resources on fewer households, a market has developed with older people
and their families buying in services from private providers, using personal budgets and direct
payments or their own funds. There has been a growth in private (charitable and for profit)
providers but this can bring problems of fragmentation and lack of regulation (Glendinning and
Wilde, 2011, p. 113).
From a European perspective there are many of the same issues. However the LIVINDHOME
research showed that ‘Home care services, like long term care services in general, are
embedded within the traditions, values and structures of individual states and any convergence
between the approaches of different countries is likely to be constrained by these different
contexts. Thus the approaches of the countries in this study to reforming home care services
differ in their starting points, reform strategies and time frames’ (Rostgaard et al., 2011, p.
24). England is among countries with a long history of both long term residential and home
care services and has increasingly aimed to encourage a market in the supply and delivery
of home care. While home care users can purchase services through personal budgets,
mechanisms are needed to ensure service quality; equity, equality and effective workforce
strategies need increasing attention.
c. New products including the role of technology
i.General
Technology in its widest sense covers a range of equipment from the oldest such as telephones
to the newest i.e. robots. Equipment can help with mobility, sensory problems, motor issues
(such as trembling), memory and problems such as the inability to carry out more than one
task at a time. We recognise that the Technology Strategy Board are increasingly using the
generic, or umbrella, term ‘assisted living’. We use a variety of definitions which are specific
to particular cases.
Some technology has been developed specifically for older and/or disabled people. Starting
with simple alarms which were found in an evaluation in 1984 to be useful but limited (Tinker,
1984) research has burgeoned. However, research has been very small scale. This technology
was often called ‘disability equipment’ or ‘equipment for the handicapped’ but not only has the
term changed but so has the concept. It now includes mainstream technology, such as mobile
phones, and more specifically designed products such as wheelchairs. By 2004, when the
term ‘assistive technology’ began to be used, a definition by the World Health Organisation
held that it is ‘An umbrella term for any device or any term that allows individuals to perform
tasks they would otherwise be unable to do or increases the ease and safety with which task
can be performed’ (WHO, 2004, p.10). Since then the specific terms of telemedicine and
telecare have increasingly been used (see Tinker 2011 for a fuller discussion). We discuss
another aspect of technology, home modifications/aids and adaptations, in section 9d.
ii. Telemedicine
Telemedicine can be described as the delivery of health care at distance. Described by WHO
as ‘The practice of medical care using interactive audio visual and data communications. This
includes the delivery of medical care, diagnosis, consultation and treatment as well as health
education and the transfer of medical data’ (quoted in Telecare News July 2012). The assumption
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is that there is a health professional either at both ends of the communication (such as a nurse
communicating with a hospital) or a patient communicating with a remote professional such as
a nurse. Devices can include those for measuring weight, blood pressure, blood glucose and
oxygen saturation. The largest randomised control trial of telemedicine is the recent Whole
System Demonstrator trial, financed by the Department of Health. Subjects were over 6,000
people in Kent, Cornwall and LB Newham with conditions such as diabetes, chronic obstructive
pulmonary disease, heart disease and heart failure who had social needs. The trial measured
the effect of using remote exchange of data between patients and healthcare professional
to inform patients’ diagnosis and management. There was: 45% reduction in mortality rates,
20% reduction in emergency admissions and 15% reduction in accidents and emergencies. A
later evaluation found lower mortality and emergency admission rates (Steventon et al., 2012).
However, one of the authors has advised caution (Dixon, 2012) because the trial included those
with low risks, they had extra support, they were only followed up for 1 year and a reduction in
emergency admissions does not necessarily mean an improvement in quality of life.
A follow up of those who had declined to enter the trial found that such interventions as
telemedicine were often considered a potential major threat to identity and existing services
use by respondents. ‘Their feelings of uncertainty were not mitigated when the prospects
of installation of the trial was discussed at home visits’ (Sanders et al., 2012, p. 10). The
researchers found it was important for potential recipients to have the opportunity to discuss their
expectations and additional concerns about technological aspects of equipment and service
changes prior to installation. Additionally these findings suggest the need for closer proximity
between innovation design and evaluation, so that critical insights might usefully feed back
into design and implementation, ensuing interventions are ‘minimally disruptive’ for recipients’
(ibid, p. 11). A recent systematic review of methodologies for assessing telemedicine concluded
that ‘Larger and more rigorous controlled studies including standardisation of methodological
aspects are recommended to produce evidence of unambiguous telemedicine services on
pre defined outcomes’ (Ekeland, et al., 2012, p.8). They also added that telemedicine and
assessments are complex interventions and also, tellingly, that there is need to engage with
stakeholders, including patients.
The need for innovation in the health and care sector is motivated by current and future
population ageing, but also by the projected lack of nurses or other health staff to assess
and treat a growing number of patients. As a consequence, governments have worked with
the health industry to design telehealth (telemedicine) interventions. A series of studies has
investigated cost effectiveness of these technologies. A research reviewing 22 studies on
home telehealth for individuals with chronic diseases reveals a large uncertainty surrounding
the economic outcomes of interventions (Polisena et al. 2010). Even though a large majority
of the reviewed studies showed that home telehealth saved costs, the lack of consistency in
economic evaluations and heterogeneity of interventions, population and healthcare systems
have generated mixed results.
Legal and ethical concerns about telehealth technologies have been raised by the European
Group on Ethics in Science and New Technologies (EGE). They indicate potential problems
with the pervasiveness of a technology, loss of trust in doctor/patient relationships, threats
to privacy and security of personal health data, lack of adequate infrastructure or capacity
to understand and manipulate technology. Although few patients expressed concern about
privacy, the other drawbacks of telehealth may also apply to telecare and smart (or ambientassisted) technologies.
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iii. Telecare including alarms
Telecare refers to care provided remotely to a person at home and has been described by a
leading expert as the continuous, automatic and remote monitoring of real time emergencies
and lifestyle changes over time in order to manage the risks associated with independent
living (Hands, July 2012). For example, sensors can monitor the security and safety of older
people by automatically detecting a problem and notifying emergencies to the appropriate
staff. One of the oldest forms of technology is alarms and one of the first evaluations took
place in England in 1984 (Tinker, 1984). Alarms are the main type of technology used for
telecare in the home (Kubitschke and Cullen, 2010).
An analysis of the English Longitudinal Study of Ageing (ELSA) – a panel study of people
aged 50 and over, found that in 2008 just over 2% had a personal alarm and just over 4%
had what they called an ‘alerting device’ fitted to their property (Ross and Lloyd, 2012, p. 4).
A subsequent policy analysis estimated that there were around 4.2 million potential users,
of whom 2.5 million (about 60%) lived alone and could be considered a higher risk (Lloyd,
2012, p. 3). This study also found that around half of all personal alarm users paid for the
equipment themselves and the equivalent figure for alerting device users was around 31%.
Recommendations of the study included increasing the scale of use of telecare, despite the
cost, promoting its use among informal carers, families and professionals, deploying the
disability benefits system, building mobile phones into clear policy and involving the NHS
(which may have a greater role in leading commissioning and funding in the future).
A study of carers had found advantages of telecare for them. These included reducing stress
and worry, improving their sleep, and enabling them to have a life outside caring (Carers UK,
2012). Carers UK urged mainstreaming of technology, so that there would be an automatic
check whether technology was appropriate. Growing evidence from older people about the
usability of technology shows it must be reliable, efficient, safe and simple (see for example
McCreadie and Tinker, 2005). A key requirement is for information.
Practically all countries in Europe provide an alarm system, although the coverage varies
among countries. Telecare has grown rapidly in popularity around the globe, seen as cost
effective and potentially reducing costs (DH, 2005) as populations age. Public provision, public
reimbursement and the promotion of private initiatives to develop equipment and systems have
been identified as the main drivers of development of social alarms in European countries.
Some barriers have also been identified, namely the variability in perceptions of the role and
value of social alarms, lack of public funding or cost subsidy, weak public promotion of social
alarms and limited technology infrastructure. Some countries such as the UK and Ireland
have developed large private markets for social care alarms, which have led to a high level
of implementation. Other countries such as Sweden and Denmark with much greater public
social care provision have lower levels of implementation and less market-oriented telecare
services for older people.
Responsibility for receiving alarm signals varies across countries in Europe, partly due to
traditions and values of care. Countries with historically little public provision and high reliance
on informal care (such as Germany or Spain) mainly route alarm signals to families who can
respond to the need for assistance. In contrast, countries with a strong tradition of public
provision of health and social care services (such as the Nordic countries) route alarms to
professional staff.
Evidence on the positive outcomes for older individuals using telecare devices is inconsistent.
For instance, Botsis and Hartvigsen reviewed papers on telecare for elderly individuals
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suffering from chronic diseases (diabetes, dementia, heart failure, Alzheimer’s disease,
etc.) and also mobility impairments. They found little evidence at the international level of a
straightforward relationship between using telecare technologies and improvement of health
outcomes. Nonetheless, some studies reported high user satisfaction among individuals with
chronic conditions as long as they had no cognitive impairments. Also, home telecare has
been found to improve health outcomes of individuals suffering from diabetes, heart failure
and chronic wounds. On the other hand, telecare has been found inappropriate for individuals
with severe cognitive impairments or in need of 24 hour care. These users had difficulties in
using the equipment and hence failed to monitor their health successfully. The authors point
out that a large number of studies have a small sample and the follow-up period is too short
to give clear-cut results for user health outcomes. Similarly, a much larger review on home
telecare for frail elderly people and patients with chronic conditions conducted by Barlow et al.
(2007) found inconsistent effects of automated data transmitting in a number of observational
studies. They reviewed papers with randomised controlled trials with samples of 80 or more
people using technologies for monitoring, safety and security and information and support.
Most of the papers the authors reviewed (98 in total) were from the US or UK and focussed
on information and support outcomes and largely based on people with diabetes or heart
disease. Studies on vital signs monitoring show mixed results; some studies stress the clinical
outcomes for people with chronic conditions, but these findings are absent in a number of
trials. Also, whereas some studies show significant positive clinical outcomes from proactive
telephone support or case management where individuals have depression, heart disease,
diabetes, asthma, COPD and frail older people, a series of other trials indicates no relationship
between phone telecare and clinical improvements or quality of life.
Also, Arras and Neveloff-Dubler point out that residential technologies result in ‘the extension
of medical dominion to the heretofore private sphere of family and friends’ (as quoted in
Demiris and Hensel, 2009, p. 112). Moreover, telecare technologies might tie individuals to
their homes rather than promoting their freedom. The detachment from human contact has
negative outcomes as patients feel isolated. Oudshoorn (2012) reflects on the importance of
space and care and uses the notion of ‘technogeography’. Telecare technologies or devices
create a disruption in the traditional exchange of care between individuals. Whereas care
has traditionally been thought of as a relationship or exchange between individuals in the
same space, telecare technologies redefine and modify physical space. There is then a
physical separation between health or social care professionals and the person with care
needs. He also points out that users of telecare are responsible for monitoring their own
activities, which entails reorganization of their space and the activities at home (Oudshoorn,
2012). Nevertheless, all these technologies may be taken for granted as they are developed
and introduced in what Post (2010, p. 272) refers to ‘hypercognitive societies’ (in Brittain et
al., 2010). Other reported problems with telecare technologies, such as lack of ability to use
the equipment provided or failure in responding to videoconference calls and reporting data
correctly are summarised in Botsis and Hartvigsen (2008). Not surprisingly, these difficulties or
challenges in manipulating telecare equipment were found particularly acute among individuals
with cognitive impairments.
Telecare 2nd generation
A wider development of sensors and alarms incorporates more elaborate design, including the
potential for the user to communicate with a carer. Use of such technology varies widely across
European countries, as public provision and funding play an important part in developing
or initiating projects using specific technologies. However, a market in care and health
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services has been rapidly developing and growing numbers of individuals are using such
2nd generation telecare technologies. Some countries have established programmes aimed
at promoting advanced alarms and sensors in the home. Germany has recently invested
in ‘Ageing Related Support Systems for Healthy and Independent Living’ (Altersgerechte
Assistenzsystemefüreingesundes und unabhängiges Leben). Since 2004, a telecare home
service has been fully operational in parts of Germany. A recent project named SOPHIA has
several systems and devices such as an age-friendly telephone set, state-of-the-art alarm
service technology including advanced sensoring and activity monitoring, and video telephony
utilising the ordinary television set. SOPHIA (see references – website ICT & Ageing 2012)
has been designed to be provided in conjunction with housing organisations and has been
already implemented in cities such as Wuppertal, Berlin and Gelsenkirchen. They offer different
service packages that adjust to users’ needs (basic, security, contact and comfort), all based
on round-the-clock services. In Denmark advanced telecare has a long tradition but is not
yet widespread. Two projects partly financed by the European Union have been launched:
PERSONA (Perceptive Spaces Promoting Independent Ageing) and DREAMING (Elderly
Friendly Alarm Handling and Monitoring), both intended to prolong the independence of older
individuals in their home. In Sweden there have been various government programmes aiming
at improving the quality of life and independence of their older citizens; for instance, technology
for the elderly (Teknik för äldre, 2012) developed Care IP (an alarm unit with GSM backup)
and the ‘Growing older’ (Hjalpmedelsinstitutet, 2012) programme with a large list of projects
such as ‘Housing and IT’. Assistive technologies are free of charge and municipalities are in
responsible for the correct functioning. Telecare services in Spain (teleasistencia domiciliaria)
are provided both publicly and privately. The system has been in place since the early 1990s
and has expanded greatly since 2006. Each Autonomous Community is in charge of funding
and providing telecare services so that the level of provision varies across regions. In Italy,
telecare is not common but a project currently in place in Rome is the ‘Non Piu Soli’, which
supports people with psychological and medical support as well as meals on wheels. It also
provides telehealth monitoring to over 3,000 individuals (Kubitschke and Cullen, 2010). Other
projects are the ‘Vallid’Argento’, a telecare project that covers approximately 250 individuals,
and the E-Care project in the province of Bologna and the municipality of Ferrara. Much
wider implementation of telecare services has occurred in France. Telecare services have
been long used for older individuals and development of these services is jointly done with
the public and private sector. The various commercial providers have joined the association
AFRATA (Association Française de Téléassistance). In the Netherlands telecare services are
little used among individuals aged 65 and over, but public and private initiatives have been
developing since 2000 and a series of pilot projects and programmes are now operating. In
Poland, telecare services are little used and there is little development yet from the public or
private services.
iv. Computers and information communications technology
Underpinning all tele-technology concepts is Information Communications Technology (ICT).
This can include computers and televisions. Computers have not been designed with an age
range in mind although those who are younger will have been more exposed to the digital age
which will stand them in good stead in the future. A European study in 2000 (Ekberg, 2002)
helpfully divided its sample of 9,600 older people across Europe into: the digitally challenged
– those with no experience and no interest in computers; the technologically open-minded –
non-users who are keen to learn about technology and/or wish to gain computer skills; the
old-age beginners – those with only basic skills using computers less than once a week; the
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experienced front-runners – users with advanced computer skills using computers at least
once a week. The Sus-IT study found that some older people reveal exceptional tenacity
in attempts to remain digitally connected despite age-related obstacles (see references –
website Sus-IT).
In the last decade the European Union has had a particular interest in the potential for ICT to
enable older adults to age well at home. In its introductory description, the European project
‘Senior’ states that ‘Technologists and policy makers know that Information Communication
Technologies (ICT) could dramatically improve the living conditions of older people, and turn
ageing from an economic burden into a potentially productive resource’ (SENIOR Project, 2008).
The European European Commission regards ICT as means to help individuals to participate
in society and the economy and as an opportunity to ‘generate benefits for businesses and
for economy and society at large’ (COM, 2007, p. 4). However, it acknowledges there are
challenges with ICT for older people, whether due to their personal situation, to communicating
with health or social care experts and carers or to the technical aspects.
A growing body of reports and academic research point out that technologies have the potential
to alleviate care needs, reduce costs, increase autonomy and individuals’ quality life, improve
individuals’ safety and release informal carers from burdensome tasks . New terms such
as ‘gerontechnology’ and ‘domotics’ have emerged to encompass the area of technological
applications for older adults.
Research on the use of technologies for dependent older individuals indicates some positive
outcomes, but also some challenges. The advantages that have been reported in recent
studies emphasise the potential impact of technologies to improve people’s lives or meet the
preference of individuals to age in place by reducing the effects of loss of functional abilities.
Also, case studies have shown the impact of technologies in increasing the sense of safety
and security of older adults in their everyday life (Petersson et al., 2011). Yet less attention is
paid to challenges for older people in using technologies. In the necessary debate about the
potential of technologies for long-term care, those difficulties must be recognized in order to
inform solutions. Technology has been converging and merging with everyday life resulting in
‘cyborgism’ (Tomas, 1995). This has diffused slowly and unevenly into older age groups, to
‘gray the cyborg’ (Joyce and Mamo, 2006). Therefore, assistive technologies must adapt to
the older individual and not vice versa (Wey, 2004 in Brittain 2010).
v. Smart homes
Technologies have multiple purposes and meet a large variety of needs. Innovations can
range from simple devices to complex networks of monitoring and assistive devices. So-called
‘smart homes’ have a network of sensors and cameras distributed strategically (Demiris and
Hensel, 2008). This innovation is also known as ‘ambient intelligence technology’. One of the
main characteristics of smart homes is the ubiquity of computing. A major concern with such
technology is the tendency to treat users as objects (Brittain et al., 2010).
Smart technologies are different from assistive technologies, although they share some
characteristics (Tinker et al., 2003). This third generation of telecare technologies is still
very undeveloped in Europe and little evidence of its usefulness for older people has been
gathered so far.
According to Demiris and Hansel (2009) smart homes employ autonomous technologies,
where the user does not need to operate, or be trained to use, technological devices; this
is substantially different from stand alone devices such as pressure cuffs, as users must
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have some training to use these. Data gathered through sensors not only help to monitor
individuals’ health conditions but also to ensure a prompt response in case of a crisis or
change of physiological or mental capabilities. Thus, early intervention is a result of gathering
important biomarkers that might suggest need for an intervention, contributing to preventing
ill-health and enhancing individuals’ autonomy.
Van Hoof et al. (2011) carried out an assessment of an ambient intelligence device, the UASsystem. This ‘consists of more than ten wireless sensors placed in various parts of the home
along with a black box containing hardware components located in the living room or meter
cupboard’ (van Hoof et al., 2011, p. 312). This system is different from telecare technology as
individuals do not have to carry any device with them. The sensors installed in the home help
detect falls. Qualitative interviews with clients of the provider SZBS (StichtingZorgpaletBaarnSoest) were conducted prior to installing the technology and again sometime later. A large
variety of individuals was selected, although a common characteristic among the selected
individuals was the need for 24 hours surveillance. Out of the 18 individuals of the first round,
12 were interviewed in the second round. The other 6 died, were institutionalised or could not
participate for other reasons. There are clear advantages of the UAS system in giving users a
greater sense of security and safety as their activity is monitored, which can help to protect them
in case of a health emergency or the threat of burglary. Another benefit expressed by the users
is the 24-hour care provided by the system. Almost all had some emergency response systems
such as a neck-worn pendant, wristband or an audio-voice. However, after the introduction
of the new ambient technology they stopped using it. Furthermore, privacy issues were not a
major concern except for one person in the study. Overall, the results of the UAS technology
show positive outcomes for maintaining individuals’ independence in their home and avoiding
institutionalisation. Familiarisation has been found to be very important to instill confidence
and trust in users about ambient intelligence technology. Although some individuals expressed
reserves about the installation in their home, the second round of interviews showed more
positive responses and overall support of the ambient technology. Some users of the UASsystem had concerns, for example being troubled by the number of false alarms and other
sounds but others regarded false alarms as a sign that the system was fully operational.
Another interesting finding from the van Hoof et al. (2011) research study is the conclusion that
individuals with cognitive impairments need a different approach when using technologies.
This is particularly important as it highlights the difficulties individuals might have to face in
their everyday life with other technological devices that might create confusion and fear. Thus,
technological literacy is a very important aspect to take into consideration when applying
technologies. Similarly, acknowledging extra difficulties that some individuals, especially
those who are cognitively impaired, might face is necessary. Whatever the benefits of ambient
technologies, they are best seen as complementary to care by humans.
A major problem of assessing smart homes is the lack of comparable results. This is due to
the low supply of smart home technologies and the fact that the large majority of projects
are still in an experimental phase (Chan et al., 2008). There is very little research on smart
homes and very few evaluations of the impact of smart homes on individuals’ health and wellbeing. A review of literature on smart home projects internationally (a total of 21) by Demiris
and Hensel (2008) raised some concerns and challenges but none of the projects showed
evidence of the impact of these technologies on health outcomes. A number of technological
challenges have been distinguished in the literature. Ethical considerations include issues of
privacy, informed consent, autonomy, lack of touch and obtrusiveness. The lack of human
touch is linked to the use of telecare technologies (Cheek et al., 2005). There are fears that
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human interactions might be severely reduced as healthcare professionals are remote. Thus,
the subject becomes objectified as the body is reformulated into a series of alarms, figures and
graphs. Also, smart homes devices are distributed around the home of the user. These objects
or devices (sensors, tv-top-box, etc.) are visible to external individuals (relatives, friends, etc.)
and therefore might lead to stigmatization of individuals as frail or vulnerable (Demiris and
Hensel, 2009).
Another major challenge related to incorporating technologies in the day to day activities
concerns individuals’ desires and preferences. The solutions that technologies offer might not
be in accordance with individuals’ needs or preferences (Demiris, et al., 2008). Efforts must be
made to match individuals’ needs and available technology in a harmonious and comfortable
fashion. A pilot study on attitudes, opinions and preferences of older adults and the use
of technologies to age in place found that older adults have very positive attitudes toward
the use of technologies because of the perceived benefits on their safety, social interaction
and support (Mahmood et al., 2008). Thus, in conclusion, older people’s motivations to use
technologies as a resource to feel safe and prolong independence are crucial in accepting and
using technologies. These differences stem from personal and social circumstances such as
health condition(s) or social support possibilities. Moreover, individuals’ preferences vary and
there is more or less strong opposition towards the use of technology-based assistive devices.
Possibilities to use technologies are highly correlated with health and cognitive conditions.
Individuals must be familiarised with the technology and sometimes might need to learn how
to use it. This might turn into a challenge and produce greater stress on individuals.
Experiences of smart homes or Ambient Assisted Living (AAL) technologies in Europe
Smart homes initiatives are still in an early stage in European countries. The fragmented
provision and social care models to provide and pay for smart home technologies remain as
barriers for the mainstream development of smart homes in Europe. Nonetheless, several
countries have already initiated pilot projects, but no peer-reviewed studies have been
published yet.
The sparse and tentative development of smart homes are reflected in Germany where
some projects such as SerCho or SmartHome Paderborn have introduced smart home
technologies but not targeted at older people. On the other hand, OFFIS project is running two
apartments equipped with smart technologies designed for older people. More pilot projects
can be found such as the Das MedialeHaus or the Smart Living in Hattingen that assists
54 people in areas such as health, safety and security or comfort. The lack of mainstream
smart homes might be explained by the lack of systematic funding and regulations regarding
who pays what. However, the Dutch government has recently started a programme to fund
smart home solutions for older people with dementia; Smartwohnenis is a smart home pilot
project for dependent older individuals to help maintain independence at home for as long
as possible. In cities across Germany, 65 projects have been launched, although results
of users’ experiences have not been reported yet. Smart technologies in Denmark have
been developing at a fast pace in the last year, with private providers being much more
common than in other countries in Europe. This, together with public investment, has created
a dynamic atmosphere for smart home technologies. Various projects such as the Vaer Tryg
project, the Projeck tDet Gode Aeldreliv or the Intellicare Innovations Consortium have been
created to identify and develop equipment and systems to improve the quality of life and
independence of older individuals. Sweden has a very similar development of smart homes
and assistive technologies. County Councils and Municipalities are in charge of funding and
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providing services for individuals with disabilities. Rules of eligibility and funding are decided
by County Councils and Municipalities, which leads to a great variety across the country.
SmartBo is a smart house for people with disabilities such mobility or cognitive impairments in
Sweden (see references - website Deafblind international). The aim is to maintain individuals’
independence for as long as possible in their home through using ICTs. This study is embedded
within the SmartBo project, a home-based technology project aimed at older individuals with
mobility impairments and cognitive disabilities. By contrast, in Spain the implementation of
smart technologies is very low, although there are options available. Public provision and
funding is not available, which puts barriers to the development and implementation of these
technologies. Smart homes and assistive technologies have recently been promoted in Italy.
Public support has been growing and examples of public funding can be found in the Province
of Trento where smart homes are subsidised. Other projects implemented are the Domus
Project (apartments with smart technologies for older individuals in the province of Arezzo) or
the Progetto Domotica (a project for the development of smart buildings). France has a much
larger participation of private providers, local authorities and housing organisations in smart
homes and AAL innovation than South Mediterranean countries. However, the implementation
is still low and reaches a low number of older individuals. The main pilots in practice are
the HIS project in Grenoble and a pilot project called Vill’Age (MEDeTIC, 2012) in Alsace.
TIISSAD is a French project to monitor and follow-up home patients with chronic diseases or
elderly individuals. It aims at preventing falls and decline in health status. But lack of public
funding jeopardizes a wider installation of smart home technologies. In the Netherlands,
contrary to the lack of public involvement in developing telecare services, smart homes and
assistive technologies are largely promoted by public authorities. Already in 1994 a model
house was built in Eindhoven. Smart homes and assistive technologies in Poland have been
little developed. Although it is now a partner in the European Programme Ambient Assisted
Living Joint Programme, pilot projects and implementation of these technologies for older
individuals are practically non-existent.
In the last decade the European Union through the 7th Framework Programme has boosted
a wide range of programmes aimed at promoting independent lifestyles through using
technologies. The i2010 initiative document called for Member States to facilitate the uptake
of technologies for ageing well at home. Among the projects recently developed are: ENABLE
(assistive technology aimed at improving quality of life of individuals with mild to moderate
dementia), SOCIABLE (see references) is a computing programme for ICT assisted cognitive
training and social activation targeting individuals who have no cognitive impairments to
individuals suffering from mild Alzheimer’s disease) or the Ambient Assisted Living-Joint
Programme: this is an ambient assisted living project aimed at promoting national research
activities to build projects for the future long-term care. The funding is national and European.
There have been four calls for research proposals with a large number of projects in each call.
d. Services working together
The Department of Health (DH) paper Interim measures for Patient Experience at the Interfaces
between NHS services (DH, 2012b) says ‘Numerous recent studies and external reports, such
as the Future Forum King’s fund, Nuffield Trust and the Health Select Committee 14th report
on social care, have demonstrated there is currently much interest in integration. They have
highlighted how fragmented care is a concern for many people in health and social care,
especially those who have multiple, chronic conditions and long-term needs who need care
from a myriad of NHS and social care services’ (DH, 2012b, p. 5).
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There has long been a practice (in theory at least) of health and social services providers
working together and endless research on how this may be accomplished in different situations
and with different groups. A recent systematic review of the effectiveness of inter-professional
working for older people living in the community found that, while there is policy commitment
to closer working between professionals to improve health and social care the benefits were
poorly understood (Trivedi et al., 2012). It did, however, find that more than half reported
improved health/functional/clinical and process outcomes while only a few reported favourable
carer outcomes.
It is easy to look at current patterns of care and organisations. However this can date many
recommendations. The current planned arrangements are an example of this. The abolition
of Strategic Health Authorities and Primary Care Trusts and their replacement with Clinical
Commissioning Groups (led by GPs) will mean new groupings for social services (and of
course housing) to link with. In addition there is the new local authorities’ responsibility for
Public Health. In addition there will be Health and Wellbeing Boards, Local Joint Strategic
Needs Assessment and Joint Health and Wellbeing Strategies. This pattern in late 2012
shows how the policy landscape can change. A co-ordinated approach has been adopted by
Torbay where front line teams have been aligned with those in General Practice (Morris, 2012,
p. 262).
More helpful probably is to look at the simpler mechanisms. These can be summed up as: joint
use of pooled budgets; joint staff appointments; joint committees; merging of departments;
merging of organisations; sharing premises; the growth of multidisciplinary teams; dignity
champions; single assessment of clients/patients. However, there has been much less attention
paid to the need for housing to be brought in to these links (see Tinker, 2012 and section 9).
A geriatrician, Jackie Morris, in ‘Integrated care for frail older people 2012: a clinical overview’
argues that ‘The key components of effective integrated care are shared knowledge,
understanding, training and support. Equally important are shared objectives, leadership
and governance’ (Morris, 2012, p.257). While ‘no single element by itself has been shown
to be effective, but the strongest predictors of success have been the active involvement of
physicians, the use of multidisciplinary care and case management with access to a range of
health and social care’ (ibid, p. 257). It is important to change the perceptions of services for
older people and those working with them. Many professionals working with older people have
poor working conditions, low status and little training.
11. The special cases of people with dementia, other forms of cognitive impairment and those who are dying
a. Cognitive decline and dementia
Progressive cognitive disorders are linked to loss of ability to carry out everyday tasks,
problems with memory and communications. People are likely to need help with these tasks
and to be kept safe i.e. not to wander.
The Department of Health say that the total annual costs of dementia are £17 billion. 41% of
this was accommodation, the estimated costs for informal care support and lost employment
36%, social care services 15% and 8% was for healthcare. Numbers with dementia are
predicted to rise from 680,000 in 2007 to 1.01 million by 2051. The cost of ‘Long term care for
older people with cognitive impairment in England could rise from £5.4 billion to £16.7 billion
between 2002 and 2031’ (DH, 2011b, p. 19).
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Diagnosis is key. The All-Party Parliamentary Group on Dementia ‘Unlocking diagnosis’ in July
2012 quotes earlier evidence from the Department of Health in 2009 showing the benefits of
early diagnosis to individuals and families (DH, 2009b). And another study showed the financial
benefits of early diagnosis in delaying admission to hospital and to care homes (DH, 2009a).
‘Evidence from animal studies, observational research, and randomised trials show that
exercise can reduce cognitive decline, and the change in activity need not be great. A Swedish
study found that leisure time physical activity at least twice weekly in midlife was associated
with a 50% reduction in dementia. Yet in England only 40% of middle aged people have taken
30 minutes of moderate exercise in the previous month. A well conducted meta-analysis also
found that smoking is associated with dementia. Evidence that social engagement delays
cognitive decline is promising but as yet inconclusive. However, a recent study indicates that
delayed retirement may defer the onset of dementia’ (Doyle et al., 2009).
When people have dementia research shows that special housing is successful and this has
been known for a long time (see Tinker, 1999). Extra care housing where the older person
has their own accommodation but meals and 24 hour help is provided can enable them to live
a dignified life. In addition technology can help. A review ‘Assistive technology as a means
of supporting people with dementia’ (Bonner & Idris, ed. Porteus, 2012) shows that it can
help with reminders and prompts, for safety, reminiscence and entertainment. It can also
reduce stress on carers. The publication gives many examples of interventions which look
very promising. Among them are ones under the Design Council challenge – ‘Living Well with
Dementia Technology Innovation Challenge’. These include ‘Dementia Dog’ which provides
companionship but also prompts the owner to do certain things such as take medication.
Another was ‘Buddi - Band’ which is a wristband which enables the person to be located and
to call for help. These await evaluation as do a number of other examples.
Technology can have a role for people with dementia. Devices to ensure safety such as turning
off dangerous devices such as cookers and monitors by surveillance are useful although there
are ethical issues to do with the latter.
b. People who are dying
Care at the end of life is becoming of increasing importance and one which the Government is
paying more attention to. In 2008 the National Audit Office (NAO) on end of life care found that
the majority of people would prefer not to die in hospital but that there was a lack of alternative
provision (NAO, 2008). DH produced End of Life Care Strategy which was intended to change
the culture and experience of dying (DH, 2008).
A recent study on people who are dying, including those with dementia, showed a clear
preference for dying at home. The key role of home care, either to support family care or to
provide direct care, would ensure that more patients with advanced non-malignant conditions
die at home (Gott, 2004).
Specific advice on End of Life Care in Extra Housing has been produced and this shows
how managers and care and support workers in extra care housing can talk about end of
life care with residents to ensure that their wishes and preferences are met (Kneale, ed.
Henry & Porteus, 2012). The report concluded ‘Dying at home is a realistic option for extra
care residents if that is their choice. However, achieving this ambition for many individuals
requires sensitive discussion, good care and support planning and effective communication
between support staff and the individual and their family. It also means working closely with
all the professionals and organisations involved in their care and support’ (Kneale, ed. Henry
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& Porteus, 2012, p. 3). While another study has found that residents may have to move on,
especially those who develop dementia (Dutton, 2012) although another study claimed that
this was more of a funding issues than a care one (Pannell and Blood, 2011). The value of
learning resources for end of life care in extra care settings has shown the value of improving
commissioning and care planning and the coordination of care as well as the importance of
training for staff (Jones et al., 2011).
12. Legal and ethical issues
a. Legal issues including human rights
There are many influences on social policy including increasingly supranational and global
institutions. It is most apparent in the European Union. In 1988 the European Social Charter
had a section (4) ‘The rights of elderly persons for social protection’. This included rights to
remain full members of society and to choose their life styles and lead independent lives in
their familiar surroundings for as long as they wish and are able, and the provision of housing
suited to their needs and support for adapting it. At the heart of the actions of the European
Commission have been anti-discrimination laws. Based on the European Convention on Human
Rights, the Human Rights Act in the UK dates from 1998. Nevertheless age discrimination still
exists as does elder abuse and mistreatment. How the Human Rights Act can affect policy
is shown in recent High Court judgments. For example, Shared Lives are protected so that
no-one can be moved from their family home against their wishes, without a Mental Capacity
Act assessment. Another example is over Personalisation policies. These, while aiming to
enhance choice and control, place onerous legal responsibilities on older people who use a
Direct Payment to employ a personal care assistant. These include complying with all the legal
obligations of an employer, including dealing correctly with National Insurance contributions
and tax matters; also with the employee’s rights to sickness, maternity or annual leave and
ensuring safe working conditions. Having Direct Payments could also open up new possibilities
for financial abuse of the older person.
While the law may provide some help to older people, we argue that many of the issues we
have raised such as the need for more training of staff would go a long way to help support
the human rights of older people.
b. Ethical issues
This report raises many ethical issues, some of which are beyond the scope of this limited
study. One is intergenerational equity. It may be held that we have argued for more resources
for older people and in some circumstances this is true. However the tenor of our report is that
in the long run money will be saved.
There are specific ethical issues to do with technology. These include consent, data protection
and stigma. The International Longevity Centre (ILC) report details ethical issues on increased
use of technology in care homes which are equally applicable to care at home (ILC, 2012,
see also Tinker, 2011). There are also many ethical issues to do with people with dementia
but again these are also relevant to all older people. These issues have been thoroughly
examined by the Nuffield Council on Bioethics in Dementia: Ethical issues (Nuffield Council,
2009). At the heart of the issue is ‘balancing safety with freedom, deciding what is in the
best interests of the person with dementia and recognising that the needs of the person with
dementia may sometimes conflict with the needs of others’. They have a special section on
the use of assistive technologies in which they point to the advantages in promoting a person’s
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autonomy and wellbeing by enabling them to live more freely and independently for longer.
But they also point to ‘possible detrimental effects such as the intrusion on privacy, stigma
(particularly with reference to tracking devices) and the risk of reduced human contact. There
is also the dilemma over whether the person has the capacity to make decision themselves
and, if not, the criteria for giving them technology.
13. What can be done?
a. Changing public attitudes
Although it is of course desirable for staff to know about services and practical things like
handling people, something more radical is needed. A radical shift in society is needed that
no longer sees older people as recipients of care but recognises their great contributions
such as to families, neighbours and society. Part of this is bound up with the low status that is
connected to services for older people (Cornwell, 2012). Some argue that there is a need for
a change in the expectations of what the state should provide (Corry, 2012).
b. Drawing on the strengths of older people themselves
Discussing long term conditions, DH discusses self-care/shared decision making. ‘Empowering
patients to maximize self-management and choice, through shared decision making and
motivational interviewing. This includes ensuring that: (1) patients engage in shared decision
making to co-produce a care plan, (2) both patients and their carers have access to the
appropriate information about how to manage their condition, (3) patients are active participants
in all decisions about their care (‘no decision about me without me’) and (4) that patients have
access to their medical records. This requires a cultural shift for both patients and clinicians,
whereby the importance and value of self care and patient education are truly understood and
where shared decision making and supported self care are seen as integral elements of LTC
management’ (DH, 2012a, p, 21).
A relatively new concept is that of ‘Living Labs’ which can involve of the involvement of people
in all stages of a service. For example Jeremy Porteus (Porteus, 2010) has argued the case for
this approach with extra care housing. Not only will full engagement with older people and their
families offer ‘a tailored personal service and creating a smarter and more dynamic customerto business relationship. In the economic climate, we are operating in, this must make good
business sense too’ (ibid, p. 1). A previous study on sheltered housing had highlighted that
resident satisfaction and well-being increased as a result of effective involvement and led to a
greater sense of ownership by residents and staff, job satisfaction had increased and listening
to residents feedback had improved services and the planning of future needs. (Hasler et al.,
2010). Porteus quotes the European Network of Living Labs as ‘A living lab is a real-life test and
experimentation environment where users and producers co-create innovations. Living Labs
have been characterised by the European Commission as Public-Private-People- Partnerships
for user-driven innovations. It says that a ‘Living Lab’ is involved in four main activities: Co
–creation: co-design by users and producers; Exploration: discovering emerging users,
behaviours and market opportunities; Experimentation: implementing the scenarios within
communities of users; evaluation: assessments of concepts, products and services according
to socio-ergonomic, socio- cognitive and socio-economic criteria’ (Best and Porteus, 2012, p. 2).
At a basic level, older people make a great and growing contribution financially to the economy
and through later working. Many in this generation have been able to save and may have
considerable financial resources. A study ‘Gold Age Pensioners: Valuing the Socio-economic
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contribution of older people in the UK’ (WRVS, 2011) produced evidence to support this. Apart
from contributions to taxes the research found that older people provided valuable and increasing
financial contributions to society including by their considerable spending power (it is estimated
that older consumers aged 65 and over spend on average around £100bn p.a (AgeUk quoted
in Silcock and Sinclair, 2012, p. 6), the provision of social care to other older people, the added
value of their volunteering and their contribution to charity and other donations.
c. Changing policies
i. Looking for leaders
We need leaders/agents of change. Perhaps the new emphasis on Public Health may have an
effect. At the top is Public Health England which is a new body which will be established in the
DH to set the overall objective for public health. It will be accountable to the Secretary of State
for Health. Public mental health has been defined by DH as ‘The art and science of promoting
wellbeing and equality and preventing mental ill health through population based interventions
to reduce risk and promote protective, evidence based interventions to improve physical and
mental wellbeing and create flourishing, connected individuals (DH, 2011a, p. 89).
ii. Age discrimination
There has long been advice about not discriminating on the basis of age in health services
(see for example the DH ‘National Service Framework for Older People’) and provisions
forbidding age discrimination in the field of employment are already in force (since October
2008). However, from 1 October 2012 the Government will fully implement the ban on age
discrimination enshrined in the Equality Act 2010 giving protection against age discrimination
in services provided by public, private and third sectors, clubs and associations in the exercise
of their public functions. The Equality Act 2010 states that ‘chronological age must not be used
as a substitute for an individual assessment of a person’s needs’.
iii. Improving health
Measures to improve health would keep some people out of institutions. ‘Both epidemiological
and biological research shows that the pace at which people age (as determined by physiology)
can be modified. Many of the actions necessary are those that would form part of any broadly
based strategy to promote population health, such as measures to reduce smoking, improve diet
and increase physical activity. The resulting healthier lifestyles can slow the processes involved
in many common disorders of old age such as ischaemic heart disease’ (Doyle et al., 2009).
For many older people an event like a fall can prove catastrophic and be the forerunner to
hospitalisation and a steady decline in physical and mental abilities. Measures to prevent such
an event are urgently needed. However, prevention is not always an exciting policy when more
high profile actions are more appealing. There is plenty of evidence that lead to this being a
priority in the future. For example many examples are given in a research paper ‘Pathways
to prevention’ that include hospital discharge schemes that have helped speed up patients’
release which have saved social care budgets at least £120 per day, adaptations that can
reduce the need for daily visits and reduced or removed the needs for home care (savings
range from £1,200 to £29,000 per year) and a rapid responses adaptation scheme that saved
the NHS £7.50 for every £1 spent (quoted in Stirling, 2011, p, 5).
Some government initiatives are small scale though well intentioned. For example local
authorities have been invited to apply for a total of £20 million for a fund to make the homes of
older people warmer (DH, 2009a).
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There are many other examples of preventive services such as schemes to prevent hospital
admission and readmission and falls prevention services all of which would save money
and help older people. It is also important to recognise mental health problems such as
depression and dementia.
iv. A higher profile for housing
We have pointed to the neglect of housing and would like to make the case for more attention
to be paid to this important service both nationally and locally. There is extensive research
which shows that simple measures such as housing adaptations, practical housing related
support and re-ablement can play a major role in preventing entry to an institution (e.g.
University of Birmingham 2010). One encouraging recent initiative is the setting up of new
public health functions in local government. ‘From April 2013 local authorities will have a
key role in improving the health of their local population, working in partnership with clinical
commissioning groups, and others, through health and wellbeing boards in their localities.
They will be responsible for commissioning and collaborating on a range of public health
services and for advising the commissioners of local NHS services. Health and wellbeing
boards are being established by LAs in partnership with NHS clinical commissioning groups
and others. The boards will be responsible for preparing comprehensive joint strategy needs
assessments and joint health and wellbeing strategies, and will have a role in commissioning
plans to take those assessments and strategies properly into account’ (DH, 2012c, p. 1). The
encouraging thing is that they go on to state the clear link with housing ‘These important new
responsibilities in local government will join existing roles that substantially influence the health
of local people, for example environment, housing, economic development and regeneration,
education and care services’ (ibid).
There is a strong link between physical long term conditions and psychological distress/disorder
(DH, 2012a, p. 23). The latter are much more common than physical problems. People with
these conditions are more likely to develop other long term conditions. Untreated depression
leads to worse health outcomes and increased health care spending (ibid). Therefore preventing
and/or treating mental health problems would be a good investment.
d. Encouraging new providers
With a change in emphasis of the welfare state there is need for a rethink about the respective
roles of organisations. With the voluntary sector taking over some roles, such as housing
associations from local authorities, the private sector can have a role to play too. This has already
happened for extra care housing and a recent study stated that ‘Policy makers should recognise
and encourage private sector development of extra care housing’ (Kneale, 2011, p. 133). There
has already been a large expansion of private home care. However, it is important that small
providers have acceptable standards. Older people choosing from private providers with more
of their own resources such as personal budgets presents a challenge to society in maintaining
standards as well as to families. An interesting case for not for profit providers was made by an
individual in Hull Telecare who felt that there was a need for a High Street presence of ‘not for
profit shops with a social conscience’. He maintains that once a device becomes a ‘health’ or
‘care’ device companies can ‘add a couple of zeros’ to the price (Best and Porteus, 2012, p. 11).
e.Changing practice including new ways of doing things
An interesting approach has been recommended for people with mental health problems in
a DH (2011b, p. 12) publication which is based on the economic case for policies. It included
‘the acute care pathway’ which highlights all the steps/interventions that can be taken before
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anyone is admitted to an institution. Similarly care pathways and ways of navigating them
are one of the means identified for the housing sector in delivering the National Dementia
Strategy (Garwood, 2008).
f. Staff - changing attitudes and training
A group of experts have recently claimed that ‘The majority of staff providing the physical and
emotional care for older people in hospital and at home have few qualifications, are on low pay
and have poor working conditions’ (Cornwell, 2012, p. 1).
In addition many health professionals were educated and trained for a different era. A geriatrician
writing about staff in all types of employment working with older people has recently said ‘Staff
recruitment must select for candidates who can demonstrate their ability to deliver humane
and compassionate care. Once appointed they require support, understanding and training.
Treating them with dignity, kindness and respect will make it easier for them to do the same
for their clients’ (Morris, 2012, p. 262).
There is need for strong professional and clinical leadership and workforce development
to deliver both old and new services. A group of experts have argued that ‘The quality of
interactions and relationships between frail older people and professional caregivers is shaped
by the team and the organisational ‘climate’ of care. Effective managers and staff working
in a supportive organisational context could remedy many of the problems encountered by
patients and carers in both their own homes and hospital. Actions can be taken at different
levels of the system to deal with this issue, but we believe that the responsibility for quality of
care and outcomes for patients is firmly located at the level of the team. The main purpose of
decisions and decisions taken at other levels of the system should be to enable frontline staff
do their work’ (Cornwell, 2012, p. 1). The workforce at all levels needs to be suitably equipped
and trained. They ‘need to be supported to deliver more personalised care and to understand
the culture change needed to support people to understand their condition and to feel more in
control. This means changing part of their role from being expert ‘fixers’ to becoming coaches
and enablers’ (DH, 2012a, p. 32).
It is important to promote the recruitment, training and retention of workers including recruitment
and retention strategies, professionalisation and qualifications and the role of migrant workers (see
Rostgaard, 2011, p. 27 for home care workers). A change of role may be necessary. For example
home carers in Sweden were originally housewives (many of whom were entering the labour
market rather than staying at home) but became more professional (Larsson et al., 2005).
Staffing issues also need to be addressed by professional bodies. The expert group that met in
2011 recommended that ‘professional bodies and those bodies responsible for education and
training, revalidation and appraisal develop strategies to change their perceptions of older people’s
services and to create the future workforce that older people need’ (Cornwell, 2012, p. 7).
g. Paying for services and products
Although our focus is not on the economic case for a change in long term care we cannot
ignore the financial aspects. If services, whether publicly or privately, are provided they have
to be paid for. Many people have, of course, paid privately such as for care in a nursing home
or private domiciliary care. If the service is good then people will want to use it. We would like
to see more encouragement for this. However, for many others they will not have the resources
and will need some help from the state. We believe that the electorate would be prepared to
pay for a service such as Long Term Care if it is seen to deliver one of high quality. There
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are advantages too with a uniform service being delivered that ensures a certain standard.
However, the increasing use of money being given directly to the users can have advantages.
It enables personal choice rather than a ‘one size fits all’ approach.
Grants to enable providers to work together are not new. For example pooled budgets have
been in existence for many years. They allow local and health authorities to pool their budgets
and then make joint decisions about how a service may be provided. Some of the newer grants
have potential for allowing the payment for services. Under the last Government ‘Total Place: a
whole area approach to public services’ HM Treasury and the Department of Communities and
Local Government (DCLG) in March 2010 announced the results of 13 pilot projects which they
claim have demonstrated ‘real service improvements and savings to be made’ (HM Treasury
and DCLG p.5). This was through special grants for specific areas of work including services for
older people. But amounts are often small and for pilot projects only. ‘Total Place’ requires ‘the
active engagement of Government and all local service delivery bodies. I present a series of
commitments that will give greater freedom and flexibility to support a new relationship between
Government and places. The features of this new relationship will include: Freedom from central
performance and financial controls; freedoms and incentives for local collaboration; Freedom
to invest in prevention; and Freedom to drive growth’ (ibid, p.5). Budget decisions following this
included a loosening of central control such as de-ring fencing of £1.3 billion of local authority
grants from 2011 – 2012 and the removal of a number of national indicators. Under the current
Government there has been an emphasis on Community Budgets with a similar emphasis
on local involvement with Whole Place budgets at a more strategic level and Neighbourhood
budgets at a more local level. Both are designed to bring together service providers.
At a personal level there are ways of obtaining services without payment, for example by
swapping services. These are called Timebanks. They can be used for individuals who offer
a service and bank the time and then use another service in the Timebank. For example
an elderly person may offer to baby sit in return for help with ‘do it yourself’. Timebanks
can be used by organisations who can offer a service and then exchange them for others.
DH say that ‘Developing social capital through projects that build community capacity can
benefit the community at large, as well as individual, recipients and providers involved in
such initiatives’, (DH, 2011b, p. 8). They also quote some research by Knapp et al. (2007).
Separate economic modelling by the LSE found that the cost of each time bank member
would average less than £450 per year, but a conservative estimate of the contribution of
each member would exceed £1,300 (ibid).
h. Giving more information
Research shows the lack of information which professionals, families and older people have
about services. For example research on technology for the home showed a striking lack of
knowledge (Wright et al., 2005). Publicity about, for example, Disabled Facilities Grants, might
enable more awareness of what can be done.
i. Measuring outcomes and the need for more research
Many of the examples that we originally found had not been evaluated. While descriptions are,
of course, valuable, there is need for some kind of evaluation. This does not always have to
be a full cost benefit exercise but it does need to go beyond the simple description. The NHS
Outcomes Framework will help but there is also need to look more carefully at small local
initiatives to see what can be learnt.
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j. Using institutional care more creatively for non residents
Residential care homes have many facilities, such as laundry rooms and dining rooms which
could be used by people from outside. But a note of caution needs to be made here. Research
has shown that this has to be done very carefully for the building is the home to the residents
and the presence of people from outside may be resented (Wright, 1995). However if simple
steps are adopted such as a separate entrance and the rooms are not necessarily used at
the same time as the residents then it can work very well. For example, non-residents can be
asked to come in for certain social events.
The ILC 2012 report argues that the care home of the future must become a community hub
delivering a range of services under one roof or in closely integrated neighbourhoods. A Welsh
study suggested that community hospitals might act as a centre for co-ordination of services
and possibly equipment (Warner et al 2003).
k. The role of industry
In the UK there is great potential in the housing market to expand building both for life time
homes and for specialist housing such as extra care schemes. In the USA, after a period
when the housing market collapsed, demand is now outstripping supply for retirement and
assisted living property (New York Times, 3.8.11). There is also great potential for investment
in refurbishment (including repairs and adaptations) and in technology products. The large
study Sus- IT on IT use has produced helpful information on how to stimulate new product
development for the older market in their paper (see references – website Sus-IT).
Investment in pharmacy could also help. For example the School of Pharmacy, University
College London (UCL) recommends better use of community pharmacies to educate
communities about preventative health and healthy lifestyles (Gill and Taylor, 2012).
As the population ages across the globe there is an expanding worldwide market for housing
related technologies that can extend independent living at home. While Japan has been at
the forefront of innovation to date, there is a massive potential export market, particularly for
adaptations and equipment for homes. More certainty about future policies would help future
investment. While changes create opportunities, a long term plan would help stimulate more
external investment.
14. Changing institutional care
Research shows that some care homes can be successfully remodelled to become extra
care housing (Tinker et al., 2007). While not a cheap option, and not always possible, this is
something that should be seriously considered as it gives people more independence and
autonomy than a care home.
In a few cases we have found positive evidence following the closure of a care home. For
example in Birmingham an evaluation following the closure of some residential care homes
and linked day centres and their replacement with new special care centres, new housing
services and in other forms of residential care (Glasby, 2011). Birmingham plan to close all 29
residential care homes in the next five years. They plan to develop eight Special Care Centres
with half of the beds in each centre providing long-term stay. The centres will also provide
intermediate care and rehabilitation. Extra care housing will be expanded, with enhancements
made to existing provision and new development schemes undertaken.
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Interviews with a sample of the older people after the closures showed that 42% from each
setting suggested that life had got better following the resettlement programme, a further
35% suggested life had stayed the same and 19% suggested life had got worse (ibid, p. 4).
However, half of the latter suggested that this had been due to deterioration in their health
rather that the services of their current care home.
While our focus is on alternatives to institutional care we acknowledge that, for some people,
especially where nursing care is needed, it will remain the best option for the point of view
of the older person and carers. However, we feel that much could be done to improve this
form of care.
15. Next steps including the need for more research
Our evidence comes from evaluations. We strongly suggest that some of the other initiatives
we refer to are evaluated. These include some of the very promising ones on technology and
dementia listed in the Housing LIN 2012 report (Bonner & Idris, ed. Porteus, 2012). Many
reports, including the HAPPI one and that by the National Housing Federation ‘On the Pulse’
(Leng, 2012) contain fascinating descriptions of schemes but it would be helpful if they were
to be fully evaluated. A good example of the benefit of evaluation of projects is that of the
test sites commissioned to facilitate the implementation of the National End of Life Care
Programme (Jones et al., 2012). It would also help to be able to do more research on the
costs of initiatives. For our part we would like to explore in more detail some examples from
the Netherlands (a case study) especially of their housing and technology. We also feel that
there is more to learn about cohousing. There is little known about the trajectories of older
people and how well different settings of housing with care are able to cope with changes in
care needs. The extent of unmet need over time and place needs monitoring.
16.Conclusions
Institutional care and aspects of long term home care have persistently been found wanting
by older people and their families, although residential options will remain necessary where
24 hour support and help is required. A continuing issue in long term care as been the low
status, lack of training and excessive workloads of formal carers, preventing them from giving
care in the way that older people would prefer. In particular, research with older people has
shown they appreciate kindness and respect as well as practical help. As this report argues,
the forms and practices that have become entrenched in long term care must be improved if
older people’s autonomy, quality of life and identity as individuals with particular histories and
hopes are to be maintained.
This report has therefore explored radical alternatives to institutional care that enable older
disabled people to take the lead in shaping their own care solutions, breaking with previous
long term care patterns. We describe a range of small scale ‘housing-with-care’ ventures
across Europe and North America, developed over the last two decades, that offer attractive
choices for older people with care needs in their final years. Many of these schemes operate
in a socially inclusive way, maintaining self-hood, even where inputs have to be quite intensive
for very frail people. Outside the UK, substantial numbers of older people have experienced
new arrangements and mainly reported satisfaction. Financing care for greater numbers
of older people has always been a problem but innovations in housing-with-care could
reduce costs. For example, Nordic cohousing schemes are very popular, with waiting lists
and Homesharing in Australia is evaluated as successful and cost effective. In the UK such
© Housing Learning & Improvement Network – www.housinglin.org.uk
50
new configurations have not yet become widespread and may still be confined to a property
owning ‘elite’. Technological innovations are promising, but evaluation shows they need to
be much better attuned to older people’s preferences and requirements. Innovations such as
personal budgets and direct payments have not been received with any enthusiasm by older
people; the research indicates that most want more choice and consultation within the Local
Authority service provision; moreover cash-for-care is not cost effective in the case of older
people. A significant constraint on LA care provision is budget restrictions, limiting the support
that social workers can give in planning care, reducing the amount and quality of agency
care that can be given to older people, undermining their choices and preferences and, by
excluding many from assistance, placing intolerable burdens on informal carers whose own
health is thereby compromised.
Underlying our report is a consideration of what is best for older people and their carers. It
is argued that many of the issues we have discussed would not only lead to this but also, in
many cases, to cost savings. Not only would some people not have to go into institutional care
but the emphasis on e.g. prevention and building on the strengths of older people themselves
would improve health and well-being.
We have given more weight to some initiatives that seem innovative and underdeveloped.
These are extra care housing, home modifications/aids/adaptations, technology and housing
in general. All would be prime topics for the Technology Strategy Board and for industry to
invest in. In addition the role of some other options such as co-housing and the fundamental
plank of informal care (especially co-resident /spouse care) need to be urgently addressed.
In particular we have provided evidence that the Technology Strategy Board through its role
in grant giving can contribute added value to stimulate innovation around long term care for
population ageing in both private enterprises and statutory sector. Our examples of innovations
and promising schemes have come from the statutory, private and not for profit organisations.
We also feel that harnessing the strengths of older people themselves, not only in the provision
of services but at the start and throughout the research process, would bring about better
focused solutions. Older people are resourceful and their expertise should be brought in to
both the design of services and research.
We hope that our findings will provide the basis for stakeholder interest, engagement, and
support in finding new and innovative ways of addressing cost effectiveness of social care
provision, choice and improved quality of life and provide the basis for the next phase of the
Technology Strategy Board’s investment into developing the programme.
© Housing Learning & Improvement Network – www.housinglin.org.uk
51
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Methodology
We are a multidisciplinary team covering Gerontology, Social Policy, Anthropology, Political
Science, Economics and Sociology with expertise in both quantitative and qualitative methods.
Apart from our individual contributions we have jointly brainstormed on the more complex
issues. This is based on a vision of 2020 but also 2050 (desk research based on the UK and
mainly Europe. Please note that this is not a systematic search of the literature).
We have searched the literature (through both acknowledged data bases such as Ageinfo,
Google Scholar, Web of Knowledge) and the grey literature and have had regular team
meetings to put together a coherent picture to answer the issues posed above. This has been
shared with colleagues both in IoG and other appropriate experts to build on this to revise and
improve the findings.
Note
The views expressed in this report are those of the authors and are not necessarily those of the
Technology Strategy Board or the HealthTech and Medicines Knowledge Transfer Network,
who were the funders of this research, or the Housing Learning and Improvement Network
who have kindly agreed to publish this report.
About the Institute of Gerontology, Department of Social Science, Health and
Medicine, King’s College London
The Institute of Gerontology at King’s College London is one of the leading gerontological
research and teaching centres world-wide. Founded in 1986, the Institute is at the vanguard
of multi-disciplinary research and teaching, acting as a bridge between the social and clinical
sciences. The Institute has many long-standing research and teaching collaborations including
the Institute of Psychiatry, the School of Medicine, the School of Nursing and Midwifery and
the School of Biomedical Sciences. The objectives of the Institute are to;
•
Engage in state of the art research in the demographic, sociological, psychological,
financial and institutional processes of ageing.
•
Provide multidisciplinary research led education and research training for both clinical
and social scientists, including practitioners in health, social care, government and the
voluntary sector.
•
Engage critically with social policy issues for the benefit of older people both internationally
and nationally.
The Institute’s interdisciplinary nature is reflected in its broad research sponsorship base; it
has received funding from UK Research Councils (i.e. ESRC, MRC, EPSRC and AHRC), from
numerous charities concerned with the welfare of older people, and from government (including
the Department of Health, the Department of Communities and Local Government and the
Department of Work and Pensions). The Institute’s recent research has included a study of
elder abuse; pensions and poverty; housing and technology; the health and social concerns of
‘new’ ageing population, end of life care and bereavement; the demography of informal care;
and the biology of natural ageing. Current research is focussed on three core areas: (i) ageing
policy, health and healthcare; (ii) ageing policy and family life; and (iii) global ageing.
© Housing Learning & Improvement Network – www.housinglin.org.uk
63
About the Housing LIN
Previously responsible for managing the Department of Health’s Extra Care Housing Fund, the
Housing Learning and Improvement Network (LIN) is the leading ‘learning lab’ for a growing
network of housing, health and social care professionals in England involved in planning,
commissioning, designing, funding, building and managing housing, care and support services
for older people and vulnerable adults with long term conditions.
For further information about the Housing LIN’s comprehensive list of online resources and
shared learning and service improvement networking opportunities, including site visits and
network meetings in your region, visit www.housinglin.org.uk
The Housing LIN welcomes contributions on a range of issues pertinent to housing with care
for older and vulnerable adults. If there is a subject that you feel should be addressed, please
contact us.
Housing Learning & Improvement Network
c/o EAC,
3rd Floor, 89 Albert Embankment
London SE1 7TP
Tel: 020 7820 8077
Email: info@housinglin.org.uk
Web: www.housinglin.org.uk
Twitter: @HousingLIN
Published by King’s College London, 2012
Reproduced in this format by the Housing Learning and Improvement Network
© Anthea Tinker, Leonie Kellaher, Jay Ginn and Eloi Ribe
ISBN 978-1-908951-03-8
© Housing Learning & Improvement Network – www.housinglin.org.uk
© Housing Learning & Improvement Network
64
www.housinglin.org.uk
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