Dementia Friendly Communities: The Involvement of People Living with Dementia

Background
Dementia Friendly Communities (DFCs) offer an approach to community
engagement to improve the lives of people living with dementia and their
family supporters. The involvement of those living with dementia is key
to creating successful DFCs. This paper examines how people affected
by dementia were involved in developing and designing DFCs in England,
and the impact of their involvement.

Methods
This study used a mixed method case study design in six DFCs in
England. Data collection involved documentary analysis, a survey, and
interviews and focus groups with service providers and people living with
dementia and their supporters.

Findings
All six DFCs aspired to involve people living with dementia and their
family supporters, but often relied on a small number of people living
with dementia. The range of involvement activities in DFCs included
Steering Group meetings, wider public consultations, and enabling
feedback through data collection methods such as surveys and ‘ad hoc’
conversations. Organisations within the DFCs with experience of public
consultation offered structured opportunities for involvement. There was
no evidence of people living with dementia initiating or co-leading the
organisation, its direction and/or the activities of the DFCs.

Conclusion
The involvement of people living with dementia in DFCs went beyond
rhetoric, with some evidence of context sensitive and meaningful
participation. Approaches towards involvement should focus on
involvement in strategic planning, and on harnessing expertise in
delivering different involvement activities to optimise participation of a
greater breadth of people living with dementia. Engagement with local
organisations who work with, and for, people living with dementia, and
dedicating the resources needed for involvement work, are crucial for
creating DFCs. The success of DFCs are determined by how the needs of
people living with dementia are identified, discussed and reviewed by
those within the community who are most affected.