Involvement of people with dementia in raising awareness and changing attitudes in a dementia friendly community pilot project

Abstract

Low levels of public understanding can contribute to the fear, stigma and social exclusion associated with living with dementia. Dementia friendly communities aim to address this by empowering people with dementia and increasing their social inclusion. As a part of a Community Based Participatory Action Research (CBPAR) process, a multicomponent dementia friendly community intervention supported: research; the establishment of a Dementia Advisory Group and Alliance; an awareness campaign and education in community organisations. Educational events were co-designed and co-facilitated by people with dementia and their care partners. To assess project reach and changes in attitudes of community members, two cross sectional surveys were conducted with adults (aged over 18 years) using validated scales. Independent samples t-tests compared responses to the surveys prior to the commencement of the project (2014) and two years later (2016). In 2016, respondents showed increased agreement with the statements: 'People with dementia participate in a wide variety of activities and interests,' and, 'It is easy to find out about dementia friendly services or organisations in Kiama'. Respondents who attended an educational event reported less negative views about how they themselves would feel if they were diagnosed with dementia compared with respondents who did not attend an event. CBPAR appears useful to support the involvement of people with dementia and the engagement of the community to improve awareness of dementia services. The direct involvement of people living with dementia as spokespeople and educators was an effective way to improve positive attitudes and reduce the negative stereotypes associated with living with dementia. Further research is needed to compare different approaches to the creation of dementia friendly communities in different locations, and to establish the extent to which local interventions are useful to complement efforts to raise awareness of dementia at a national level.

Dementia Friendly Communities in England: A scoping study

“…2 This ranges from studies on what it means to be a citizen with dementia 16,17 to evaluations of communities' activities 18 and evaluations of dementia-sensitive infrastructure such as transport and the design of public and commercial buildings. [21][22][23] With DFCs now supported by national policy, there is a need to know how they are configured and characterised and how they prioritise activities. [21][22][23] With DFCs now supported by national policy, there is a need to know how they are configured and characterised and how they prioritise activities.…”

“…19,20 Most published evaluations of DFCs were completed within the first few years of the initiatives having been set up. [21][22][23] With DFCs now supported by national policy, there is a need to know how they are configured and characterised and how they prioritise activities. This paper presents early findings from the National Evaluation of The DemCom Study adopted a broad working definition of DFCs so as to capture the range of possible approaches and encompass groups or organisations that self-identified as DFCs:…”

What you say and what I want: Priorities for public health campaigning and initiatives in relation to dementia

“…The place of dementia in the public domain is becoming increasingly important with (a) more people living with dementia as a consequence of rising numbers of older people; (b) a shift towards care in the community which has made dementia more visible; (c) stigmatising attitudes to ageing and to dementia affecting older people's sense of confidence, social engagement and positive or negative identity; (d) dementia becoming associated with the rising costs of health and social care provision, both nationally and internationally; and (e) people with dementia and carers finding their individual political voices to reduce the dominance of professional voices as the foremost perspective determining service systems and wider public attitudes…”

“…Past campaigns, it is argued, have succeeded in framing dementia as a serious, risky condition to fear, but the appeal for taking positive action has been underplayed . While changes are taking place at national and local levels, the relationship between the priorities of the sender and recipient of messaging has not been fully researched.…”

Equity of people with dementia in research, why does this issue remain?

“…Recent initiatives to work with people with dementia in research have supported their involvement beyond participation to guide the development, direction and focus of research in dementia, as collaborators, co‐researchers and through co‐production (Gregory et al, ; Phillipson et al, ; Shilling & Gerhardus, ). A contemporary review of the literature identified 54 studies where people with dementia influenced an element of the design of the research (Bethell et al, ).…”