Visiting the Memory Café and other Dementia Care Activities

Activity and engagement are vital to our well-being throughout our lives and this
continues to be just as true of people living with dementia.
This activity book outlines new approaches to person-centred care for people
living with dementia. The activities presented have been designed to provide
meaningful engagement for residents while respecting each individual resident’s
readiness to engage and participate. Drawing on case studies, each chapter
recommends the best way to implement ideas such as Namaste Care and Memory
Cafés, and provide the framework for evaluating whether your approaches support
the people in your care to the fullest extent.
Caroline Baker is Director of Dementia Care at Barchester Healthcare and has
worked in dementia care for the past 30 years. Jason Corrigan-Charlesworth
is Deputy Director of Dementia Care for Barchester Healthcare.
Jessica Kingsley Publishers
EDITED BY CAROLINE BAKER AND JASON CORRIGAN-CHARLESWORTH
‘Visiting the Memory Café is much more than a roster of programs and therapies;
it is a guide to a new way of thinking about how to best serve the individuals in
our communities…practical, compelling and highly readable.’
– Dr G. Allen Power, MD, author of Dementia Beyond
Drugs and Dementia Beyond Disease
VISITING THE MEMORY CAFÉ AND OTHER DEMENTIA CARE ACTIVITIES
‘A very clear and practical guide to delivering support to people living with a range
of dementias… I recommend this book to both family carers and professionals.’
– Professor Martin Green, OBE, Chief Executive of Care England,
DH Independent Sector Dementia Champion
Foreword by
DR G. ALLEN POWER
Visiting the
Memory Café
and other
Dementia Care Activities
Evidence-based Interventions
for Care Homes
CAROLINE BAKER and
JASON CORRIGAN-CHARLESWORTH
EDITED BY
www.jkp.com
Cover design: Black Dog Design
5
Memory Cafés
Educating and Involving Residents,
Relatives and Friends
JASON CORRIGAN-CHARLESWORTH
In this chapter I will explore not only the benefits but
also areas to consider when looking at developing
the role of a Memory Café as part of the care home
environment. I will discuss too how this resource can
be used to support many people, including both those
living within the care home and those living within
the local community, and thus challenge the stigma
around life in a care home whilst also promoting
community relationships. I will also provide advice
and guidance on aspects to take into consideration
when looking at opening a Memory Café.
Are Memory Cafés beneficial?
In the current decade, Memory Cafés are becoming an everpopular resource and are opening up both nationally and
internationally as a way of providing advice and guidance
and supporting relationship building, as well as a way of
informally supporting those living with dementia and their
carers. I would point out at this stage that Memory Cafés in
the United Kingdom are not to be confused with memory
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clinics, which are formal assessment services run by the
National Health Service.
The very first Memory Café was opened in 1997 in the
Netherlands and was the idea of Dr Bère Miesen, a clinical
old-age psychologist (Jones and Redwood 2010).
Dr Miesen chose the name ‘Alzheimer’s Café’ rather
than ‘Dementia’ or ‘Memory’ ‘Café’, as it was felt that most
organisations for people with dementia across the world
were referred to as Alzheimer’s societies, even though
such organisations also provide support and advice for the
many other types of dementias and their related impact
upon an individual. Alzheimer’s disease was, and still is by
far, the most common form of dementia, hence the word
‘Alzheimer’s’ was chosen.
In his contacts with people with dementia and their
families at the time, Miesen had noticed that talking about
the illness, even between partners or within a family,
was often taboo. Miesen stated that making dementia
‘discussable’ and providing information about it and its
consequences were very important for the acceptance of the
illness, so much so that he thought that it would be good if
all those involved could meet each other in a ‘relaxed forum’
to exchange experiences and to talk about dementia. Dr
Miesen was quoted as saying in 1999 that, ‘Dementia is a
complete catastrophe. Both the person with dementia and
their family deserve to be well supported’ (cited in Jones and
Redwood 2010, p.4). Of course no one would argue with
the latter point in this quote; however, the way in which
individuals and their carers are supported still remains
somewhat of a postcode lottery within the United Kingdom.
Brooker (2007) tells us that dementia is the most feared
aspect of ageing. It is misunderstood by many. People with
dementia suffer prejudice both because of their age and
because of mental decline, and though there have been
some improvements in this area, mentioned below, I agree
that even today as a society we still come across many
Memory Cafés
‘isms’ that mean individuals require support and a voice to
continue to fight these.
Various publications, such as the National Dementia
Strategy (Department of Health (DOH) 2009), Department
of Health policy on dementia (DOH 2015) and the
implementation of the Dementia Action Alliance group,
to name but a few, have clearly started to steer us in the
right direction and have given a voice to those living with
dementia and their carers, but there still is a long way to go
to ensure that best practice is implemented and shared.
Background research into identifying if Memory Cafés
can be beneficial has to date produced differing views due to
the variation on how they are organised and run. Toms et al.
(2015) found that two recent systematic reviews undertaken
by the National Institute for Health Research on support
groups for people living with dementia concluded that
whilst there were subjective benefits, no conclusions could
be drawn on whether they promoted positive psychosocial
outcomes. This view would appear to be in line with research
undertaken by the Alzheimer’s Society, released in 2016,
showing that 42 per cent of people mistakenly thought that
once a person living with dementia stopped recognising
loved ones, they didn’t benefit a lot from spending time
with them (Kemsley 2016). A second survey carried out
at the same time found that of 300 people living with
dementia, 64 per cent felt isolated from friends and family
(Kemsley 2016).
Despite the above findings, research undertaken by Dr
Dow (2011) into the benefits of Memory Cafés in Australia
found that they promoted social inclusion, prevented
isolation and improved the social and emotional well-being
of the majority of those who attended. Bryden (2005) tells
us that, ‘We need all the support we can get, after having
what I think is one of the worst diagnoses anyone can get’
(p.131). Therefore one could be confused when trying to
come to a concrete conclusion as to whether attending a
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Visiting the Memory Café and other Dementia Care Activities
Memory Café does actually make a difference to those living
with dementia and their relatives.
That said, I would state that it would be a fair assumption
that Memory Cafés can provide support and benefit to some
individuals, as with any support group, regardless of its client
group, and it would depend on the exact role and remit of
such environments along with the expectations of those
attending as to whether they provide an overall benefit.
As mentioned previously, there are many Memory Cafés
located within different towns, villages and cities all over
the United Kingdom, and that popularity in itself may
identify that they do actually provide a benefit. However,
these Memory Cafés are predominately accessed by those
still living within their own homes, and so access to them
for those who live within care homes and their relatives can
be very limited, as either travelling to such venues can be an
issue. Additionally, as I have experienced from a personal
perspective while caring for a relative living with dementia,
the number of available places can unintentionally create a
selection process or priority may be given to those who are
perceived to be at greater risk of isolation.
Implementation and introduction of
Memory Cafés within care homes
Before we explore the best ways to implement Memory
Cafés within the care home environment, the reader may be
wondering why I chose the expression ‘Memory Café’ rather
than ‘Alzheimer’s Café’. I personally feel this makes it sound
more inclusive, as the word ‘Alzheimer’s’ could indicate that
it is purely for those living with a specific form of dementia;
also, there are still many individuals who have not received
a formal diagnosis and the word ‘Alzheimer’s’ may give the
impression that those individuals would be excluded.
One way of enabling the benefits of Memory Cafés to
become more accessible to all those living with dementia
Memory Cafés
and their relatives, regardless of where they live, is for care
homes to look at how they can best develop this resource
and by so doing also provide a support network for relatives;
this is what our organisation has looked at promoting.
It is important to point out at this stage that Memory Cafés
are not intended to replace other current practices that are
in place, such as residents’ or relatives’ meetings, or to seek
their views of the care provision, as this should be covered
elsewhere. The remit of the Memory Café is to build upon
ways in which care homes can provide an additional resource
not only to further support those they care for but also as a
forum for their relatives. This can be achieved by ensuring
the environment promotes and supports relationship
forming, companionship, inclusiveness, understanding
and fun whilst providing guidance and compassion. The
Memory Café can also be a good way to explore and identify
other ways of meeting current or any future needs in relation
to information giving, educating and training delivery in an
informal, safe and non-judgemental environment.
Within the organisation, we also believe that there is still
a lot of living to do, not only after diagnosis but also after
moving into a care home environment, and Memory Cafés
can be another method to continue to promote and support
this belief.
When I first looked at developing the role of a
Memory Café within the care home environment, my
first consideration was for it initially to be a resource for
those living within the care home as well as their relatives.
I also hoped that a Memory Café within a care home could
broaden its audience by opening its doors to those living
with dementia and their carers in the area. I envisaged the
ultimate role of the Memory Café as being beneficial in some
way to all those who attended, including relatives and carers.
I did not want it to be seen as a place to drop off a loved one,
but a way to enjoy activities and spend time together whilst
enjoying the company of those with common interests and
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common experiences. It was also my intention to provide a
resource where information and relevant training could be
provided when required to further support all those who
attended, and a way of further enhancing community links.
I thought that by developing this opportunity, it could
also be a way to promote the positive role of care homes
within their localities and to be seen as a hub of support
and guidance to all those living with dementia, whilst
disproving some of the articles in the press that suggested
that care homes are not always a good place to live. For many
people living with dementia in the community the reality is
that eventually a move into a care home is inevitable and
therefore promoting those relationships and showing all the
good work care homes actually do could make the eventual
transition somewhat less stressful and provide reassurances
to all those involved when that time came.
I was very mindful that exploring this overall specific
remit of a Memory Café would involve careful consideration
as I did not want to cause distress or impede on those who
actually live within the care home. Ensuring there was
adequate space to run such a resource was crucial whilst
respecting that some people may choose not to attend
and that these individuals should not be asked to change
their routine to accommodate a Memory Café. That said,
however, I do believe that care homes have a place in
promoting community links and feel this was an excellent
method to do so. After all, in 2012 the Prime Minister, in
partnership with the Department of Health, published
the Prime Minister’s Challenge on Dementia (DOH 2012),
part of which discusses the need for more dementiafriendly communities. Promoting the role of Memory Cafés
particularly within care homes can, I believe, be one way of
assisting in promoting this value.
Articles written around the roles of Memory Cafés have
variations in their remit for such environments; however, I
wanted to develop a fluid setting that had variation in what
Memory Cafés
it provided (as previously mentioned), thus ensuring it was
reaching out to everyone who may choose to attend. The first
avenue to explore was in relation to the environment (given
that care homes vary in size and communal spaces available);
this was an area that required careful consideration.
The care home where we initially looked at setting up a
Memory Café had the benefit of a separate communal area
and therefore could be utilised without impeding on the
running of the home or those who lived there who may have
chosen not to attend.
Given that we wanted to look at a Memory Café that
was going to be accessed by both those living in the home
and their relatives, as well as those within the community,
the planning and discussion had to consider all of the
following areas:
• identifying key people (and their specific roles) who
worked in the home who were willing to be involved
in facilitating a Memory Café
• the role of relatives and carers when in attendance
• adequate parking facilities
• access by public transportation whenever possible
• accessibility for people who required wheelchairs
• adequate toilet facilities that could also be accessed by
people with disabilities
• safe and easily accessible fire escape facilities
• comfortable seating and tables
• provision of a first aid kit
• provision of a selection of drinks and snacks
• a selection of games that could be used for sessions,
plus the ability to play music and show films
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• developing a resource list and resource library of local
and national support services, should those attending
require these
• identifying possible professionals/organisations that
would be willing to attend to facilitate discussions,
should those attending choose to learn more about
dementia or specific elements of it
• possibly looking at recruiting volunteers who may
wish to assist
• consideration to monitoring the numbers that may
wish to attend, and exploring registration of an interest
among potential attendees, as over-attendance could
be an area of concern
• marketing plans and advertising the Memory Café
initially for those living in the care home and then
more broadly in the local community.
Once we had explored all of the above, we invited those
living at the home and their relatives to a meeting to explore
with them what they would like to see from the Memory
Café and to share the ideas we had initially come up with.
At the meeting, it became apparent that those in attendance
were very welcoming and supportive of the idea of a
Memory Café being set up at the home. They felt this would
be a great opportunity for promoting relationships, sharing
experiences and spending fun and quality time together.
What also quickly became apparent was that many
relatives in attendance felt they did not know much about
their relatives’ condition and were unaware of many aspects
of best practice in dementia care, for example, that different
types of dementia have different traits or how legislation
like the Mental Capacity Act supported those living with
a dementia. Many relatives also wanted to know how they
could further support staff when they visited, in relation to
Memory Cafés
what to say to their loved one when their reality was different
or why areas like life story work were so important.
Following the first meeting, it became clear that my
initial thoughts on providing a fluid approach in the role of
the Memory Café were accurate. It was clear that the remit
of the Café would need to be dual-faceted: some sessions
would need to be structured to deliver relevant information
and guidance to those who felt they required it, whilst other
sessions needed to be more informal and geared around fun
and meaningful discussions together as a group.
The meeting also highlighted that all sessions, regardless
of their content, would need clear and careful consideration
about what information was delivered to those who
attended. I am not implying here that those living with
dementia should be excluded from potentially sensitive
sessions, but that there needed to be recognition that some
individuals may not wish to discuss or explore certain topics
where others may be willing to; an individualised approach
would need to be taken and, where necessary, best-interest
decisions made. Also acknowledgement was given that
some sessions, depending upon their remit, may not suit all
individual needs and therefore individuals needed to be able
to choose what sessions to attend or not according to their
own beliefs, choices and preferences.
Frequency and times were also discussed and it was
agreed by the group initially that the Memory Café should
be run every second month, and also run at different times
of the day including early evenings, so that it was accessible
to all who may want to attend, and also that it would be no
longer than two hours in duration.
Finally at this initial meeting I discussed my vision about
eventually opening the Café up to members of the local
community living with dementia and their carers.
The group felt that such a resource was greatly needed
and would have been a great benefit to some of them as
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individuals earlier on in their journey, and would have
provided a great support network for them.
Concerns were voiced, however, about the numbers of
people the Café may attract, so we did discuss a system
whereby people would have to contact the home to confirm
attendance prior to attending rather than just arriving, as
this could have a major impact upon the size of the room
and facilities available.
One area that I did not initially envisage any concerns
with, however, was that of staff confidence in taking a lead in
running such sessions. On discussing the role of the Memory
Café with the staff group at the home, although they were all
supportive of the idea and felt confident in running various
meaningful activities, they felt that facilitating other aspects
of the Café would be challenging as this was a completely
new concept to them, and for some it took them out of their
comfort zone.
Within our organisation, we do have a small dedicated
dementia team that supports all of its care homes. However,
I did not want the Memory Cafés to be purely run by us as a
team but to work in partnership with care homes and support
dedicated sessions where more specialist information was
to be provided. Realistically, it would be extremely difficult
for us to be at each session, particularly if we were going
to look at rolling the idea out to more homes across the
business. I also wanted to empower the homes to take the
lead in running these Cafés as staff would have already built
up trusting and empathic relationships with the residents
and relatives they already supported. I also felt that those
who attended would find this approach less stressful and
that they were more likely to attend if there were familiar
faces present.
Memory Cafés
Moving forward
At the time of writing this chapter, the home where we were
looking at developing this initial concept has run its very
first Memory Café session, which has been successful; both
residents and relatives who attended found it beneficial and
enjoyable and this resource will continue to be provided
so we can ensure we are truly supporting and providing a
holistic approach to care for both those who live in the care
home and their relatives.
Another home within the organisation has developed a
Memory Café, but this is run by a local support group and
is open to both the community and residents alike. Though
this is excellent, unfortunately not all homes have such
groups available to them and therefore we wanted to look
at other opportunities to ensure this resource was available
to all.
With this vision in mind, as an organisation we are
currently working on developing guidelines for all our
care homes that provide dementia care for setting up a
Memory Café. This will include areas for consideration
that both management and staff will need take into account
when looking at developing Memory Cafés, including
examples of good practice. These will incorporate how to
best run/facilitate such groups from their initial setting up,
to advertising such a facility, to planning a structured yet
flexible programme and also how to work alongside carers
and relatives to ensure that it is an inclusive setting.
We are also exploring the introduction of some kind of
evaluation format that can be completed periodically for all
those who are attending to ensure that current and future
needs can be considered, and to allow homes to continue
to develop and discuss the contents of the Memory Café
format to meet any change in need or expectation of the
group who attend.
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One way we are also considering to support the
development and success of the Memory Cafés is to align the
objectives of the Cafés to the seven domains of well‑being
introduced by Power (2014). Each of these domains could
support sessions by ensuring that all those who attend
acknowledge the domain, and would give the format some
clear aims and objectives. Each of these domains would fit
well and, as an example, could look something like this:
• Identity: All those who attend each session regardless
of its contents are to be included, encouraged and
supported in conversations that revolve around them
as unique individuals.
• Connectedness: Those who facilitate and attend each
session ensure they are known by everyone by way of
initial informal introductions and sharing similarities,
and promote meaningful experiences including joint
interactions and discussions.
• Security: A safe non-judgemental environment is
provided where everyone is respected for who they are
and any anxieties are acknowledged and supported.
If people have moments of uncertainty then this is
recognised and supported, and reassurance provided.
• Autonomy: Independence, choice and respect
are constantly provided and promoted and any
involvement, regardless of what it is, is recognised.
• Meaning: All contributions are recognised, supported
and valued even if they differ from our own.
• Growth: Different opportunities are provided that
promote a sense of pride and achievement, along with
provisions not only to support existing skills but also
to learn new ones.
• Joy: Supporting fun and celebrating achievements
and successes.
Memory Cafés
Summary
What is quite clear from the literature and from looking at
the role of Memory Cafés is that they can be an excellent
opportunity to provide further support to both those living
with dementia and their relatives.
Additionally, they also an excellent resource for promoting
relationships whilst providing meaningful engagement and
activities, and also for identifying and delivering guidance
and information to an audience that otherwise may not
have access to such support.
Developing and delivering such a resource clearly
requires careful thought, consideration and preparation,
both initially and ongoing. I truly believe, however, that
by supporting care homes to look at this approach we
are one more step forward in ensuring that, regardless of
where someone may be on their journey with dementia
and regardless of where they may be residing, everyone has
an opportunity to continue to learn and to live life to the
fullest potential.
Suggestions and ideas for implementation
• Look at the suitability of the environment and when
choosing a space ensure it does not impede on the
residents’ home.
• Discuss with those living at the home as well as their
relatives the purpose of the Memory Café and what
they would like such a resource to provide for them.
• Develop in-depth best-practice guidelines to provide
ideas and suggestions for developing Memory Lane
Cafés, incorporating all areas.
• Identify key staff who feel confident and supported in
delivering such a resource.
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• Look at what services, whether internal or external,
can provide information and give support.
• Ensure there are adequate resources to promote
meaningful activities.
• Regularly seek the views and opinions of those
attending to ensure it is continuing to meet all needs.
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