Including people with dementia in research

More recently efforts have increased to include people with dementia in research on but the research addressing this topic remains limited. In this section you can expect to find any papers addressing strategies for inclusion, specific methodologies, and reflections on both the benefits and barriers when including people with dementia across the trajectory of the condition.

Perception and communication of risk in decision making by persons with dementia

Stevenson, M., Savage, B. and Taylor, T.J.
Dementia: An International Journal of Social Research and Practice in Dementia
This paper by Stevenson, Savage and Taylor (2017) reports on one phase of a multi-stage study focusing on risk communication in dementia care.
The phase reported on here explores the perspectives of people with dementia in relation to ways in which they conceptualise risks, their experiences of risks and how these risks were communicated between these individuals and their families and healthcare providers. Interviews were conducted with 17 community dwelling people with mild to moderate dementia living in NI. A grounded theory approach was used to guide the analysis of interview data. Findings are reported under three thematic headings: defining risk; constructing risk; and risk communication in decision-making processes. In relation to the latter, active and passive models of decision-making were evident and illustrated in communications around driving, medication, social care and general every-day decisions. The paper concludes that taking account of what risk means to the individual and the language used and how it interconnects with emotions is important in communications about risk-taking with a person with dementia. Positive risk-taking is promoted and risk averse approaches avoided when the person with dementia is supported to consider and communicate all aspects of risk.

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

Murphy, K., Jordan, F., Hunter, A., Cooney, A. and Casey, D.
Murphy et al. (2015) aimed to identify key strategies to include people with dementia in qualitative research in a meaningful way. A number of studies were examined to identify strategies previously used or proposed by researchers and a guideline developed.
The four main areas within the guide are gaining COnsent, maximising Responses, Telling the story and Ending on a high. Having developed the CORTE guideline, the authors then searched relevant literature to examine the extent to which the literature articulated these strategies. Of the 30 studies reviewed, few articulated the CORTE strategies and the second part of this paper focuses on their operationalisation within a large national study DARES. The authors describe the process involved in using each of the 4 strategies within this study and some of the points they highlight are the complex and intensive nature of gaining consent, the time required to build relationships that support the development of trust and rapport, and the essential nature of flexibility. They conclude that researchers must be trained and know how to choose and use the right tools and strategies to maximise meaningful involvement of persons with dementia.

Using focus groups to interview persons with moderate and severe dementia

Current Nursing Journal

Casey and Murphy (2014) reviews the use of focus groups in conducting research and people with dementia and describes how focus groups were used with a purposive sample of people with moderate and severe dementia attending a respite centre to explore the attributes that they valu

ed most in professional carers.  Following the CORTE interviewing guide, they found that people with moderate and severe dementia participated and engaged well in the focus groups and stimulated each other’s engagement. They appeared to enjoy the focus groups and were able to offer invaluable information on what they most valued in professional carers - kindness, gentleness, humour, and carers willing to meaningful engage with their preferred activities. The authors conclude that focus groups have potential for use in collecting data from people with moderate and severe dementia.