Live Well With Dementia Programme: adaptation with people living with dementia

Purpose

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

Preparation

Facilitator training included a specific involvement segment to ensure key messages about feedback, working together and getting involved are rooted in the course.

The facilitator connected with colleagues to obtain information about opportunities for participants to get involved, if they want, with helping Alzheimer's Society and local organisations. 

How was the experience of people with dementia gathered:

The programme was directed by people living with dementia through what they said about their experience during the programme and what they shared about what mattered to them. In total this was about 80 people living with early to moderate stage dementia

• After each session the facilitators used group discussion to evaluate the participants' experience. The feedback then informed the programme itself.

The experience of people with dementia in year one's pilot programme, identified areas for development. These were explored with people with dementia in years two and three.

What happened as a result of the activity:

Learning from the experience of people with dementia, enabled a generic programme to be adapted to become a dementia-specific person-centred self-management programme, able to meet the needs of a wide range of people, to help them adjust to living with a diagnosis of early stage dementia.

Further improvements, learning from more people with dementia: organisers decided to look at

• Increasing the opportunities that programme participants have to influence its development further.
• Potential opportunities for people living with dementia to be involved in supporting  the delivery of the programme.
• Live Well with dementia programme was made business as usual at Alzheimer's Society in 2015. It continues to be delivered in areas where funded.

What changed for people with dementia:

People with dementia fedback that they benefiting from being involved as well as from learning from the course, for example ‘It’s been good for me to know that in helping myself I have also been leading the path for others’.

Learning points:

• 'LISTEN and LEARN from the widest range of people affected at the earliest stage possible – engage at all points – test and iterate based of their feedback and from the perspective of their lived experience!' (Beverley Page-Banks)

Key contact:

Service Development Team, Alzheimer's Society