The following is a summary of “‘Practice what you preach’. Perspectives on the involvement of people with dementia and carers in community-based dementia friendly initiatives, a qualitative study,” published in the May 2024 issue of Psychiatry by Thijssen et al.

People with dementia and their carers face social stigma, limiting their social engagement. Dementia-friendly communities (DFCs) aim to address this through Dementia-Friendly initiatives (DFIs), often developed without adequate input from those directly affected.

Researchers conducted a prospective study to understand stakeholder perspectives, including health and social care professionals, volunteers, people with dementia, and their carers, on involving individuals with dementia and their carers in developing and sustaining DFIs. 

They conducted a descriptive qualitative study using a co-research approach in which a carer participated as a co-researcher. About 19 semi-structured interviews were conducted with stakeholders, including people with dementia and their carers. Inductive content analysis was performed using Atlas Ti. 

The results identified four themes: Involving people with dementia and their carers is crucial for all stakeholders and carers; personal traits, life experiences, and emotions drive the need for involvement; engagement requires openness, responsiveness, and relationship-building; and Views on involvement are shaped by perceptions of one’s and others’ capabilities. “Practice what you preach” means actively adopting an open, responsive approach and valuing the unique abilities and backgrounds of people with dementia and their carers. 

Investigators concluded that involving people with dementia and their carers requires a relational approach, not just service-driven participation. Creative methods and communication skills are essential for inclusive, person-centered DFI development. 

Source: frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2024.1387536/full