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.

“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.”

“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. “