Dementia support groups developed by professor adopted across globe

A programme started by a UWE Bristol academic to provide emotional and practical support for people with dementia is now being adopted around the world.

The Living Well with Dementia (LivDem) course, for small groups of people who have recently been diagnosed as having a form of dementia, has been introduced in Japan, Italy and Ireland following its success in the UK.

It was set up by Richard Cheston, Professor of Dementia Health, with an NHS colleague in 2010. The LivDem approach of holding group meetings supported by trained facilitators aims to help people to adjust following a recent dementia diagnosis.

The international expansion of this evidence-based, structured programme could reach South America next, with clinicians from Argentina and Chile expressing an interest in implementing the approach.

Professor Cheston said: “LivDem emerged from discussions with a colleague when we were both NHS clinical psychologists. At the time, we were each running groups for people living with dementia that focused on helping them talk about their diagnosis and the changes they were experiencing. We felt strongly that these conversations were important, and that the NHS needed to offer more opportunities for people to discuss their diagnosis openly.

“However, there were very few psychologists available to deliver such groups. This meant we needed to find a way to equip nurses, occupational therapists and social workers to facilitate them instead. LivDem was developed as a way of supporting the wider workforce to deliver psychologically informed group work for people who had recently been diagnosed with dementia.

“A key feature of LivDem is that the groups are only for people living with dementia. Family members and carers only attend a preliminary and follow up meeting. We felt this was important because the voices of people with dementia can easily become overshadowed when others are present. LivDem is designed to give people space to talk freely, in their own right, about their experiences.”

Several studies have been conducted to evaluate the benefits of the LivDem model – an eight-week course attended by groups of between six and eight people – including research examining changes in how participants talk about their diagnosis before and after attending the groups.

Professor Cheston said: “Participants often report that they initially feel hesitant to identify themselves as having dementia. Over time, attending LivDem helps this feel easier. By bringing people together to talk about the diagnosis, this helps people to feel that they are not on their own. This in turn helps them to feel a little less frightened by the diagnosis – and this is why they are able to talk more openly about it. This greater openness seems to have knock on benefits – for instance people are more socially active because they are not so concerned about keeping the diagnosis hidden or making mistakes.

“We think that for many people it makes relationships easier – it reduces the need for secrecy and avoidance. For many LivDem participants, this translates into a better quality of life and greater confidence in thinking about and planning for the future.”

International interest in the LivDem approach has stemmed from practitioners around the world looking for new ways to talk openly about dementia with their clients or patients. They often find out about LivDem through professional networks, conferences, or online searches.

Professor Cheston, from UWE Bristol’s School of Health and Social Wellbeing, said: “It is hugely rewarding to see these ideas being taken up in different countries and contexts. It is encouraging to know that work developed at UWE is having a meaningful impact internationally. On a personal level, I have also greatly valued the opportunity to meet and learn from so many inspiring practitioners and colleagues around the world.

“Although dementia services differ widely across countries, the challenges dementia creates—the sense of uncertainty and existential threat—are universal. People living with dementia everywhere need opportunities to talk about what is happening to them. At its core, that is what LivDem offers – talking openly about dementia does not change the realities people face, but it can make those realities feel less frightening and more manageable.”

Over several years, Professor Cheston has worked with Dr Emily Dodd to further develop LivDem, creating a dedicated website and a structured training package for facilitators. They maintain links with group meeting facilitators in the UK and internationally, both to learn from their experiences and to support high-quality delivery of the intervention. The intervention has also been adapted for different contexts, and a PhD student, Jude McClellan has just started to work with the team to adapt LivDem for younger people (under 65s) who are living with dementia to ensure that it better reflects their life stage and experiences.

In addition, Dr Natasha Woodstoke has led a project – supported by the NIHR (National Institute for Health and Care Research) Applied Research Collaboration West – that applies LivDem principles to couple and family-based work. This has resulted in the development of LivDem-Families, an intervention designed to help families talk more openly about the diagnosis together. This is particularly important for people who cannot attend groups, or who wish to have these conversations within their family. Natasha, working with Dr Karin Buschenfeld, has begun a trial of Families-LivDem in Bristol and Somerset.

Dr Woodstoke, a Research Fellow at UWE Bristol, said: “Dementia profoundly affects both the person who’s been diagnosed, and the people close to them. People react to a dementia diagnosis in different ways. We already know that LivDem can help diagnosed people adjust. Now, with further research and careful implementation, we hope that LivDem-Families will also help people whose loved one has had a diagnosis.”

At the end of last year, people living with dementia and their supporters came together with researchers and charity staff for a celebratory event of the LivDem approach. The event brought together people who had attended a LivDem group, their supporters and facilitators from Mindsong – a Gloucestershire charity that supports people with dementia and their families, and which delivers LivDem groups. Attendees shared their experiences of LivDem, which were captured in a film.

There is more information about LivDem on the website. For enquiries about LivDem, contact Professor Richard Cheston, Dr Emily Dodd and the team on livdem@uwe.ac.uk