Chris Roberts’ plan to set up a dementia café: persons with dementia driving decision-making

There’s been a persistent concern amongst many academics and amongst many persons with dementia themselves that persons with dementia are not at the heart of decision-making in dementia-friendly communities.

The notion of ‘no dementia about me without me’ has not been rigorously applied to dementia-friendly communities, with directors of strategy in corporates seeking to consider how to make their organisations dementia-friendly as part of a corporate social responsibility or marketing strategy.

Such directors are obviously fluent in how to present such a strategy as elegant marketing, to secure competitive advantage, to make money, so it makes absolute sense for them.

It also makes sense for the Department of Health and the Alzheimer’s Society, who are seeing through the policy of ‘Dementia Friends’ through a sustainable financial arrangement, to see this policy plank politically flourish. With every single newspaper article on dementia now mentioning ‘Dementia Friends’, it is hard to see how this campaign cannot succeed.

Norman McNamara, an individual campaigning successfully and living with dementia of Lewy Body type, reported yesterday on Facebook local success around the Brixham community area.


Chris Roberts, another person in his 50s living with a dementia, also mooted the idea of setting up cafés himself.

“Since being diagnosed, i’ve noticed that there isn’t a lot for people in the mild to moderate stage. There are dementia cafes of course, but these seem to suit carers more than the people with dementia, we just sit there smiling when looked at while our carers and spouses chat away to each other, sharing there experiences and so on.”

“There are 100s of thousands of us in the same positition with nowhere to go or nowhere to be left! We could popin for an hour or for the day. We could practically run the place our selves, some where we could chat and share, watch tv, play cards, draw , we would arrange our own activities not led by someone who thinks they know what we want!”

“Yes we can live with dementia, yes we could even live well ! Yes we could live even better !”

The “living well with dementia” philosophy is all about enabling people to pursue what they can do rather what they cannot do. There’s a chapter on activities in my thesis on living well with dementia, reflecting the fact that activities are not only promoted in the current National Dementia Strategy but also in NICE Quality Standard 30 ‘Supporting people living with dementia’.

The National Dementia Strategy makes reference to such activities being ‘purposeful‘:


And this gets away from the concept of persons with dementia sitting around calmly doing knitting when they might have been, for example, proficient motorcycle bikers:


When one criticises that persons with dementia are often not at the heart of decision-making, these days I get a standard reply saying, ‘we always take serious note of the opinions of people with dementia; in fact there are two representatives on our board.’

Yet personal feedback which I receive is that persons with dementia resent this “tokenism”.

Having persons with dementia at the heart of decision-making I feel is important in the campaign to overcome stigma and discrimination against persons living with dementia. Persons with dementia running businesses of their own dispels the notion that persons with dementia are incapable of doing anything at all.

As a Fellow of the RSA, I intend to apply for a RSA Catalyst grant, as well as to the Wellcome Trust (who funded my own Ph.D. in decision-making in dementia fewer than 15 years ago now), to investigate collective decision by people in earlier stages of living with dementia to see how they in fact shape their community.

I am hoping that this will be in the context of their ongoing research work with the RSA Social Brain project, and I am hoping to hear from other Fellows about their work there, shortly. I will be putting my grant in with various people who are genuinely interested in this project.

How Gustavo and Ethel have so much to teach people about living with dementia

pasta bake

Gustavo is not his real name. But he is a man who came to the UK in the 1950s to seek work. He had been living in a village in South America, but had managed to fund himself through an accountancy degree. When I asked him why he had done this degree, he explained education for him was the best way to get out of poverty. He also explained how he was determined to help the U.K. with its economy after the Second World War.

I was talking to Gustavo over quite a nice plate of a tune pasta bake. As I quite like cheese and sweetcorn, I loved this nice simple dish. I had a glass of orange squash too. Gustavo had the same.

Gustavo was great company. I would say that wouldn’t I, as he laughed at my poor jokes? When I accidentally dropped my fork on the floor, he kindly picked it up for me.

We were both having lunch at the Healthy Living Club in Stockwell. It was quite a dreary morning in November, but I had decided to spend all Wednesday there. Wednesdays are a day when people living with dementia can come to spend some time in each other’s company.

I was invited to take part in their sedentary ‘exercise sessions’. I couldn’t do the exercise requiring you to catch a ball, as I am physically disabled. Gustavo was though quite good at it. His eyesight is excellent, and he explained that as a young boy he loved playing football.

Doris (not her real name either) was asked by the group leader to make up a gesture and to show it to the rest of the group. I thought Doris’ gesture was some sort of weird salute, but we all copied it anyway, and Doris was delighted.

We then all played charades over lunch. Ethel kept on winning (not her real name either). I don’t know how Ethel did it really, but her long term memory for film titles is clearly amazing.

It was an amazing day, for people with very different backgrounds simply appearing to enjoy each other’s company. That in this day and age is relatively rare in itself, with everybody rushing around in society, appearing to do a lot but in fact doing very little.

Gustavo and Ethel are remarkable also as they are good examples of “Ribot’s law”. Ribot’s Law was first postulated by the French psychologist Théodule Ribot (1839 -1916), who is recognised as one of the pioneer 19th century advocates for cognition. Ribot was particularly interested in case studies which helped to shape theories of psychological function.

Ribot’s Law was hugely influential in theories of memory and learning: the observation that functions acquired most recently are the first to be affected is one which held massive truck for ages, and shaped other academic lines of enquiry. Gustavo can remember clearly what happened in the 1950s, as if it were yesterday. Ethel can remember her film titles. A large body of research, in addition to Gustavo and Ethel, supports the predictions of Ribot’s Law. That Gustavo and Ethel were happy at the Healthy Living Club would have made Ribot happy I am quite sure too.

Leisure activities: reminiscence

keep calm and write poetry


Reminiscence therapy is a biographical intervention that involves either group reminiscence work, where the past is discussed generally, or the use of stimuli such as music or pictures. Although closely related to reminiscence therapy, life story work tends to focus on putting together a life story album for an individual.

Reminiscence work was, in fact, introduced to dementia care over 20 years ago, and has taken a variety of forms. At its most basic, it involves the discussion of past activities, events and experiences, usually with the aid of tangible prompts (e.g. photographs, household and other familiar items from the past, music and archive sound recordings).

The essence of reminiscence therapy is described elegantly by Sarah Reed (twitter details below), who has helped to popularise reminiscence approaches through various approaches. Reminiscence can be very beneficial. What a person with dementia has to say about their life experiences is a great way of demonstrating their value as a person – both to them and you, and even when their memory storage system is inconsistent, to really engage with them while they remember happy times is therapeutic and valuable to you both. Old photographs are a great way to get going and since home and family (assuming it was relatively happy) is so central to all our lives, this may be a good place to start.

The development of reminiscence work is usually traced to Butler’s early work (Butler, 1963) on “Life Review”. Butler described “Life Review” as a naturally occurring process where the person looks back on his/her life and reflects on past experiences, including unresolved difficulties and conflicts. This concept was incorporated into psychotherapy for older people, which emphasises that life review can be helpful in promoting a sense of integrity and adjustment. Butler’s seminal work contributed to the change in professional perspectives on reminiscence. Rather than being viewed as a problem, with the older person ’living in the past’, reminiscence was now seen as a dynamic process of adjustment.

Reminiscence work also has a cognitive rationale. People with dementia often appear able to recall events from their childhood, but not from earlier the same day. Accordingly a promising strategy appeared to be to tap into the apparently preserved store of remote memories. By linking with the person’s cognitive strengths in this way, it was thought that the person’s level of communication might be enhanced, allowing the person to talk confidently of their earlier life and experiences. In fact, studies of remote memory suggest that recall for specific events is not relatively preserved; performance across the lifespan is impaired but people with dementia, like all older people, recall more memories from earlier life. Some of the memories represent well-rehearsed, much practised items or anecdotes. The almost complete absence of autobiographical memories from the person’s middle years could lead to a disconnection of past and present, which could contribute to the person’s difficulty in retaining a clear sense of personal identity. From a cognitive standpoint, autobiographical memory and level of communication appear key outcomes.

Evidence suggests that reminiscence therapy can lead to overall improvements in depression and loneliness and promote psychological wellbeing. Research also supports the view that reminiscence therapy, including life story work, can improve relationships between people with dementia and their carers and thereby ‘benefits both’. Other reported benefits include enhancing the opportunity to provide personal and individualised care and assisting the individual move between different care environments such as home to care home, or between care homes.

However, Clarke and colleagues (Clarke et al., 2003) revealed an expressed concern of care staff that psychological types of therapy involving discussion and personal interaction are often not viewed as ‘real work’. Another view explored by Kerr and colleagues (Kerr et al., 2005) suggests that depression in older people is viewed as somehow natural, even when evidence indicates that a range of interventions, many of them psychotherapeutic, can be effective. If reminiscence therapy and life story work are to be used as effective treatments for those with mild to medium cognitive impairment, it is important that the potential value of these psychotherapeutic approaches is understood by care staff and endorsed by those in managerial positions.

The research evidence on reminiscence therapy has examined its impact on older people with dementia and those without the disease. Research by Chiang and colleagues (Chiang et al., 2010) among older people without dementia in institutions in Taiwan, found that there was a positive effect amongst research subjects involved in reminiscence therapy that was not found in the control group. The study found that those participants involved in reminiscence therapy were more sociable, less depressed and showed stronger signs of wellbeing than control group members. The relatively small sample size, its composition (all male) and short-term nature of the study (three months) mean that the results, although favourable, cannot be generalised to the whole population.

The effect of reading poetry on some individuals with dementia can be remarkable.

For example, the Guardian reported that:

“Reading aloud to groups of people with dementia has been found to stimulate memories and imagination – and a new anthology, compiled by Liverpool-based The Reader charity, provides inspiration.

Working in care homes can be challenging, says Katie Clark who runs Reader groups with dementia patients. “There was one woman called Flo who was very frustrated and aggressive. She used to sit in the lounge all scrunched up and tense, leaning forward in her chair, ready to throw her juice at the next passerby. The staff said, ‘Don’t sit with her – she’ll probably try to hit you.’

“So I sat down a safe distance away and said, ‘I’m just going to try reading this poem. If you don’t like it that’s fine, but let’s see what you think of it.’

“And I read the poem through. She relaxed back in her chair, went very quiet, and at the end she said, straight away, ‘read another’.””




Where to find out more

A good place to start on ‘reminiscence therapy’ is following on Twitter @SarahReed_MHR



Further reading

Butler, R.N. (1963) The life review: an interpretation of reminiscence in the aged. Psychiatry, 26, pp. 65–76.

Chiang, K.J., Chu, H., Chang, H.J., Chung, M.H., Chen, C.H., Chiou, H.Y., Chou, K.R. (2010) The effects of reminiscence therapy on psychological wellbeing, depression, and loneliness among the institutionalised aged, International Journal of Geriatric Psychiatry, 25, 380-388

Clarke, A., Hanson, E.J. and Ross H (2003) Seeing the person behind the patient: enhancing the care of older people using a biographical approach, Journal of Clinical Nursing, 12, 697-706.

Kerr, B., MacDonald, C., Gordon, J. and Stalker, K.  (2005) Effective social work with 0lder people, Edinburgh: Scottish Executive Social Research.

Kiernat, J.M. (1979) The Use of Life Review Activity with Confused Nursing home residents, American Journal of Occupational Therapy, 33, pp. 306–10.