Live Well With Dementia: adaptation for people living with dementia

Purpose

The Live Well with dementia programme was initiated to fill a gap in Alzheimer's Society services. It would offer a structured, peer group programme for people living with dementia, based on self-management principles.

Understanding the experiences of people with dementia

The programme was guided by people living with dementia through what they shared about their experiences during the programme and what mattered most to them. In total, around 80 people living with early to moderate stage dementia took part.

After each session, facilitators used group discussions to evaluate participants’ experiences. The feedback was then used to inform and shape the ongoing development of the programme.

Experiences shared by people with dementia during the first year’s pilot programme helped identify areas for development. These areas were then explored further with people with dementia during years two and three.

What happened as a result of the programme

Learning from the experiences of people with dementia enabled a generic programme to be adapted into a dementia-specific, person-centred self-management programme. The programme was designed to meet the needs of a wide range of people and to help them adjust to living with a diagnosis of early-stage dementia.

As further learning was gained from more people living with dementia, organisers decided to focus on:

• Increasing opportunities for programme participants to influence the programme’s ongoing development.
• Exploring potential opportunities for people living with dementia to be involved in supporting the delivery of the programme.

The Live Well with Dementia programme became part of business as usual at the Alzheimer's Society in 2015.

What changed for people with dementia:

People with dementia reported to us that they benefited from being involved in shaping the course. 

It’s been good for me to know that in helping myself I have also been leading the path for others.

Learning points

It's important for us to listen to and learn from the widest range of people affected by dementia, and at the earliest stage possible. By engaging with people at all points in the dementia journey, we can thoroughly test the programme from the perspective of their lived experience.

Key contact:

Service Development Team, Alzheimer's Society