Work programme 3

Developing a core outcome set for people living with dementia at home

Work programme 3 focused on developing a core outcome set for people living with dementia at home in their neighbourhoods and communities.

• We established what areas of everyday life are the most important to people living with dementia
• The views of people living with dementia and care partners are important when planning and designing care and services. However, their views are often not sought or reflected in this area or when evaluating interventions.
• Our ‘core outcome set’ for evaluating community-based interventions, was produced through extensive consultation with people living with dementia, and enabled us to devise a framework of domains of importance.
• The 13 areas are an agreed standardised core outcome set for use when evaluating community-based interventions for people with dementia living at home. They are also indicators of how community health and social care services and other social activities can best support people living with dementia to live meaningful, valued and independent lives.
• This study involved people living with dementia and care partners throughout the course of five years.

Achievements

• The research achieved agreement from over 300 people (people living with dementia, care partners, health and social care professionals, policymakers and researchers) on 13 of the most important and core areas of everyday life.
• We facilitated and included the views of people living with dementia at every stage of the research process – from involvement in determining what outcomes are important; consultation on the development of innovative, inclusive research tools; and participation in an accessible Delphi survey and consensus workshop approach.
• The final 13 core outcome areas are indicators of how community health and social care services and other social activities can best support people living with dementia to live meaningful, valued and independent lives.

What next?

 We are disseminating the 13 areas of importance through a range of accessible resources and materials:

• An image-based infographic.
• A ‘key message’ postcard for distribution via networks, conferences and meetings.
• A small booklet of quotes, photographs and cartoons by Tony Husband. Tony worked with the study team to illustrate each of the 13 areas of importance.

There is potential for the 13 outcome areas to be disseminated by different organisations via their own websites. If you are interested in doing this, please contact the Principal Investigator, Siobhan Reilly at s.reilly@lancaster.ac.uk.