Perspectives on Personal Outcomes of Early Stage Support for People with Dementia and their Carers
Gabrielle Colston
Big Lottery Pilot started 2006
Change Fund development 2011
- supports people with early stage dementia and their carers
- variety of groups, learning opportunities and activities
- personalised
- evolved naturally in response to the needs and interests of those accessing the service
What did carers say?
- I remember Wendy telling me about the Men's Group. It was music to my ears because Joe's friends, he'd lost. He didn't have male company....I can see how keen he is to go and how much he wants to go. It means the world to him. He was never a man for the 'clubbie' but he's doing manly things with men. Diane, Joe's wife
- He loves the Fairmuir Clubbie- has a couple of wee malt whiskies and a chat with the boys. He needs to socialise and get on these outings.
What did people with dementia say about peer support?
- In the group there's different personalities, we get close to each other- plus that's what keeps us going. I'm not frightened anymore...the ability to mix, didn't happen when I was diagnosed- didn't want to see anyone. Joe, 62
- Out and about meeting different people that was something, rather than sitting here all day. Meeting other people is the best part of it...Different people you to talk to, about different subjects you know. Otherwise it would be a long week looking out the window. George, 70
Talking Points Outcomes
Implications for Policy and Practice
Unexpected outcome of peer support
MAINTENANCE OR QUALITY OF LIFE OUTCOMES- including being as well as you can
CHANGE OUTCOMES- focus on short term removal of barriers to quality of life or improving well-being
PROCESS OUTCOMES- focus on how services are delivered/ how people feel they have been treated
I lost John after 4 weeks (of starting the Men's Group). I really liked him and I realised that I can't get so attached. Joe 62
God when I see other folk go downhill. I hope I never get that. Other than that.... Graeme 76
Two staff noted this too,
If another service user has a rapid deterioration this can impact on the rest of the group
Another negative part is changes which result in individuals progressing in their dementia stage and requiring further support...Individual have discussed actual situations where people have moved on form the Early Stage Service into day care and home support services.
Community Connections
Positive Change
- stated eating again
- learned to dance- the confidence I got was unbelievable
- I'm not frightened any more
- I'm now very, very positive. Dementia- I have put that to the side now.
read, read, read
plan, adapt, plan, go with flow...
design
qualitative research
to hear the voice and perspective of people with dementia, their carers and the staff
semi-structured interviews
narrative analysis using 5 Pillars and Talking Points
1000% more than expected, over the past year things he's been involved with, places he's been and the friends. It's taken us from a very dark place to having a future to look forward to
Key Findings
Peer support and community connections are the key pillars people with dementia identify as important- vital that people are provided with opportunities for on-going activities and peer support
People with dementia, carers and staff were all able to identify positive change
Need to look at supporting transition more effectively
- for people moving on
- for people who remain within the group
- the people we support
- relationships develop and fourish
- seeing confidence grow
- putting a spotlight on this model of support
I need your help...
- can you think of ways to ease the transition for the person moving onto other forms of support?
- how can we make it less upsetting for the people who remain in the group
Background