A project to capture the experiences of people living with dementia in Scotland.

The Life Changes Trust commissioned Community Catalysts to talk to and learn from people and their families who have experience of self-directed support. The aim of this exercise was to help improve understanding of how self-directed support (SDS) works in Scotland for people living with dementia.

People living with dementia and their carers who had experience of SDS were invited to make contact using the following questions:

• Are you living with dementia or care for someone who is?
• Do you have experience of self-directed support?
• Would you be willing to share your experiences – face to face or by completing a short questionnaire?

In depth interviews with five people were undertaken and their experiences of SDS recorded. The stories form the backbone of the final report. In addition, an electronic survey was developed, promoted and used to capture the experiences of 12 people who wanted to contribute in a less intensive way.

The five people whose detailed stories were captured lived in five different local authority areas. Overall, contributions were made by people from nine different areas including North Lanarkshire, Glasgow, Perth and Kinross, East Lothian, East Renfrewshire, South Ayrshire, Aberdeenshire, Argyll and Bute and Inverclyde.

All the people we spoke to or heard from, had used option 1 or option 2 to direct their own support.

Learning and recommendations

The report details the learning from the interviews and stories, and provides national and regional recommendations for strategic decision makers.