SCIE Practice guide 11: The participation of adult service users, including older people, in developing social care

Practice - People with dementia

• Although there is a considerable amount of research highlighting that only a very small minority of people with dementia cannot express their views, people with dementia are seriously under represented in the majority of systems for participation (Cayton, 2004).
• There is a lack of systems to support participatory practice so that care managers and social workers are often asked to make life changing decisions on behalf of a person with dementia, such as deciding whether or not to recommend a move into a care home, without having had time to build up a personal relationship with him or her (Brannelly, 2006).
• There are now several research-based resources which highlight the multiplicity of methods that have been used with people with dementia including:
  • questionnaires;
  • interviews;
  • observation;
  • advocacy; and
  • focus groups.
    (Wilkinson, 2002)
• Even with questionnaires, a method that might be seen as among the least suitable, better results can be obtained if they are completed with a volunteer or helper rather than through self-completion (Cheston et al., 2000).
• The work of Cantley and colleagues (2005) provides detailed practical advice on involving people with dementia in different service settings and also summarises what research has shown.
• Other advice includes:
  • spending time before collecting any information so that the person with dementia feels more relaxed (Stalker, 1998);
  • using photographs as a prompt for discussion (Allan, 2001; Bamford & Bruce, 2000);
  • using several techniques and supplementing formal discussions with informal conversations (Bamford & Bruce, 2000).
• It is also possible to give feedback to people with dementia about the results of discussions. Proctor (2001) found that when she talked to women with dementia about her analyses of her interviews with them, they did not remember her or the interview but they were still able to comment on the content of what was said.