I spotted the work of the Healthy Living Club on Twitter and was intrigued. The club has a bit of everything – effective community development, peer support, reciprocal collaboration with other local organisations… This was just the kind of small project with BIG ideas that I wanted to include in this “in my shoes” series, looking at dementia from different perspectives. I invited Simona, the project Co-ordinator to tell us more… and I was not disappointed!
Simona came back with loads of fab material about what they are doing, how they have co-produced their approach, how they have moved away from concepts of “service users and staff”; “us and them”. I simply love it – but I wondered how to do the project justice as there was too much detail for the blog.
So… a cunning plan… I have included as much as I can here and, with Simona’s permission, will see if my good friends at Governance International would like to develop this as one of their popular in-depth case studies. Here, I have concentrated on Simona’s ‘story’ – her vision and what has been achieved.
In a nutshell…
The Healthy Living Club is a self-directed community group promoting the wellbeing of its members—people with dementia, their carers and friends—by giving them a strong sense of belonging, but also a sense of purpose: all members contribute to the functioning of the Club to the extent that they are able. The Club meets weekly at Lingham Court around a programme of activities designed to alleviate the symptoms of dementia and/or to help arrest, or reverse, cognitive decline.
How it all began – over to Simona…
I came to “social care” from a different field, and spent a few years studying for an Advanced Diploma in Therapeutic (Person-Centred) Counselling, while helping manage a small chain of coffee shops. It was a very rewarding period of my life as I loved both my course and my job. Whilst I wanted to work with older adults, I also wanted to carry on doing what I really, really, enjoyed doing at the coffee shops: I wanted to carry on helping create a fabulous, joyful, atmosphere for the “customers” —something we were very good at where I worked.
My previous job taught me that the most successful coffee shops are not necessarily those with the longest menus, or the ones that serve the best latte: they are the ones whose staff may only serve “good enough” lattes, but do so with a genuine smile: they are the ones whose staff are good listeners, and love being part of the communities that inevitably spring up around the positive relationships they build with customers. So I considered that, as long as I recruited a team of volunteers and sessional workers who shared my passion for forming and triggering “feel-good” relationships, and producing good vibes, the dementia project would be a success. This was more important than deciding what activities it would offer.
The decision to develop the “product” collaboratively with the people for whom it was intended was wise in that the process of choosing the activities —with everybody expressing their likes and dislikes— turned out to be a community-building exercise in its own right, as it endowed participants with a strong sense of ownership. None of us refers to the people with dementia and the carers who participate as “users” of a “service” provided for them. It is experienced by all of us as our community. The fact that some of us have job or role descriptions (e.g. coordinator, workshop leader, support volunteer) does not necessarily mean that our input is greater than anybody else’s and this is not just because the so called “service users” also contribute to the group’s functioning to the extent they are able (e.g. by helping serve lunch, fetching chairs, reciting poems and singing songs to the group). It is especially because our members with dementia and their carers contribute in ways we can’t: they provide each other with peer support, and us with their insight into the disease. Through sharing their stories they very often also provide us with a source of inspiration, while improving our understanding of people from other generations, and of the past.
In other words, our community produces relationships of exchange, with everybody being a giver as well as a beneficiary, and the currency which is exchanged the most is warmth. As a result, I can say, very confidently, that our meetings on Wednesdays are equally enjoyed by all.
The following comment, offered by a volunteer who joined us some two years ago, expresses this point particularly well:
“Everybody who works & volunteers at the Club does so because they want to be there, and everybody who comes – along with their families – knows this, which is why they are so comfortable there.
I never know how to describe the people who come along because I don’t see them as using a service, or people in need of help: since my first week there I have felt like I arrived in a weekly gathering of friends“
– Nida Thamenah, February 2012
In summary, the community at the Healthy Living Club is not dissimilar to any other group or association of people who meet regularly to pursue a common interest, or to engage in their chosen leisure activity. Its only peculiarity is that 30 or so of our members (the majority) have dementia, and that the activities we engage in are designed to meet their needs. However, this does not prevent the rest of us from joining in the activities, and enjoying them too —and that’s why I keep saying that we are a “dementia-centred community”.
Relationships within the community
The “co-production” represented by this Club operates both within it— among the participants— and in the wider locality. Picture the scene… Wednesday meetings… I am joined by… 30 people living with dementia at various stages…paid sessional workers leading activities such as art, drama, various kinds of music-making, chair-based exercise, but who often stay the whole day, enjoying the other activities… carers, volunteers, most of whom have been regulars for months or years and some of whom had previously been carers for relations with dementia, but also students preparing for careers in care professions.
Perhaps the most distinctive feature of the Club is the variety of roles most of us play and the range of benefits we get from each other. It is normal to find people with dementia telling stories of a Caribbean childhood, proposing the next song or showing a friend a craft skill. A sessional musician and a number of carers and volunteers serve the lunch. Some volunteers and sessional workers also double as escorts, helping other participants negotiate their journeys home. People in similar situations gain a lot of peer support; younger people gain insights into living conditions in post-war London and the long work histories of older people; some older people listen to the problems experienced by young Londoners. In all of this, stereotypes dissolve and friendships form. Perhaps most important of all, stigma attaching to dementia is absent so people who normally feel inhibited in socialising are at home here.
The Club meets in the common rooms of Lingham Court, an extra care home in Stockwell, Lambeth, thanks to the owners (Metropolitan Housing) and the managers of the care services (Allied Healthcare) and its staff and residents. Some of the residents are themselves members of the Club and some of the building’s staff also take part, gaining valuable experience of working with dementia.
Two crucial outcomes of the relationships inside the Club are the sense of wellbeing and the ability to adapt. Wellbeing flows from the warmth and reciprocity among participants, a warmth which is sustained partly by the slow turnover of members: almost all of the same people come, week after week and the rhythm of activities is largely constant, excepting special events and guests. The abilities and needs of people with dementia can change unpredictably; the flexible co-production approach enables the mix of activities to adjust and for new needs to be met through one-to-one interactions or small-group sessions in separate rooms.
The Club’s wider relationships
This is the part that has been most heavily edited and will be used for a more in-depth case study but suffice to say the project has EXCEPTIONAL links with the local community… indeed Langham Court is a veritable community hub!
Volunteer hours are credited as part of a wonderfully imaginative local time-banking scheme. The reciprocity is fantastic – for example the Time Bank arranges insurance and CRB checks for Langham Court volunteers; the extensive range of opportunities at Langham Court benefit other time-bank members, many of whom have had mental health problems.
Further local relationships arise through membership of the local currency, the Brixton Pound (B£); Project Dirt, a local gardening, food and sustainability network; Loughborough Junction U and UCL/ the North-East London NHS Trust (free training, and the opportunity to run Cognitive Stimulation Therapy groups!)
There are inter-generational links with a teenager charity fund-raising for the club and treating members to a party on Dementia Awareness Day this Saturday, 15 Sept! There are relationships with health policy and funding bodies, including a productive visit from Local MP, Kate Hoey; links with the College of Medicine and joining the college’s Innovation Network.
Simona is rightly proud of what they have achieved and concludes..
“I believe that ours is a case of a group of people with dementia, their carers and friends who produced a successful (simple!) model of self-care that could be used as a model by others —the beauty is that it’s nothing more than a system of mutual exchange, within which everybody’s input is valued equally.
We welcome a stream of professional or other visitors from local, national and other organisations and projects (people from 3 continents so far). These visitors bring us valuable suggestions and comments, news of relevant research and experiments elsewhere. In turn our visitors take away their impressions from what they see and help to spread our ideas. This is all reinforced by social media activity:
All in all, a fantastic project – an innovative approach to helping people who are living with dementia! Thank you, Simona – keep up the good work!
Footnote: Great to see the Healthy Living Club also featured by the College of Medicine Innovations Network.