Articulating the strategies for maximising the inclusion of people with dementia in qualitative research studies

Abstract

It is essential to understand the experience of living with dementia from the perspective of the person with dementia so that services can be appropriately constructed. This review paper, drawing on prior work, identifies key strategies for the meaningful inclusion of persons with dementia within qualitative research studies, it examines the articulation of these strategies and shares how these strategies were operationalised within one national research study in Ireland. Strategies within the literature were categorised and then synthesized into a guide consisting of four main areas; gaining COnsent, maximizing Responses, Telling the story, and Ending on a high (CORTE). The CORTE guideline was used to as a tool for analysing relevant research reports. CORTE is a synthesized account of grouped strategies that could be used to maximize the meaningful involvement of persons with dementia and can also provide a guide for reporting the strategies used so that researchers can learn from each other.

What next? Experiences of social support and signposting after a diagnosis of dementia

“…The article's purpose is to report on how those diagnosed with dementia related the diagnostic event to subsequent involvement in their empowerment groups. Previously, much research has relied on caregivers rather than people with dementia (Murphy et al, ; Werner, Karnielli‐Miller & Eidelman, ), though inclusion of the voices of those diagnosed is now increasing. To contribute to this international body of knowledge, this study focuses solely on the views of 13 participants who attend dementia empowerment groups in four locations in NI.…”

“…Early diagnoses of dementia occur when the first signs of neurological and cognitive changes are observed but where clinical symptoms may be less apparent (Brayne & Kelly, ; Watson, Bryant, Samson‐Fisher, Mansfield & Evans, ). Those with early stage dementia contradict stereotypes about incompetence and incapacity (Murphy, Jordan, Hunter, Cooney, & Casey, ) as those diagnosed largely retain capacity and usually clearly understand the implications of diagnosis (Milne, ). An early diagnosis occurs when individuals retain autonomy to self‐manage their health (Mountain & Craig, ; Read, Toye & Wynaden, ) and, post‐diagnosis, most continue to reside in the community, leading active lives (Briggs, McHale, Fitzhenry, O’Neill & Kennedy, ) and making their own decisions (Read, Toye, & Wynaden, ; Watson, Bryant, Sanson‐Fisher, Mansfield, & Evans, ).…”

Does Digital Gaming Enable Healthy Aging for Community-Dwelling People With Dementia?

“…This approach reflects the emphasis in the literature of including the voices of people with dementia in research, (Cowdell 2008;Dewing 2008;Downs 1997;Goldsmith 1996;McKeown et al 2010;Murphy et al 2014;Wilkinson 2002), with the aim of working collaboratively with participants (Bradbury and Reason 2003) in a way that responds to individual personalities, needs and values as advocated by person centred approaches (McCormack 2004;Brooker 2004). This project followed principles of participatory action research (Chevalier and Buckles 2013) by adapting sessions to meet the interests of the participants.…”

What People with Dementia Want: Designing MARIO an Acceptable Robot Companion

“…Focus group interviews were conducted and involved people with mild to moderate dementia (n=22) and nursing staff (n= 49) in long stay care residential nursing homes and their relatives (n=6). The CORTE framework [40] was used to guide the interviews with people with dementia. This guide consists of four main areas; gaining COnsent, maximizing Responses, Telling the story, and Ending on a high (CORTE guide).…”