Barriers to Qualitative Dementia Research

Abstract

As our population is aging, the global prevalence of dementia is rising. Recent extensive reviews of the dementia literature highlight a clear need for additional qualitative research to address the experiences of people with dementia and their carers. To date, the vast majority of published dementia research is quantitative in nature and, perhaps not surprisingly, attracts the bulk of government funding. In contrast, qualitative dementia research is poorly resourced and less frequently published. Although a myriad of factors are responsible for this dichotomy, we propose that inadequate funding represents the "elephant in the room" of dementia research. In this article, we describe and emphasize the need for qualitative dementia research, highlight existing barriers, and outline potential solutions. Examples of barriers are provided and theoretical underpinnings are proposed.

The Impact of the Physical Home Environment for Family Carers of People with Dementia: A Qualitative Study

“…As studies in private homes are very limited, more qualitative studies are needed to elicit the experiences and preferences of people with dementia and their carers at managing dementia at home (Carmody, Traynor, & Marchetti, 2014;Prince, Prina, & Guerchet, 2013). capture possible changes over time and bring more insight to the importance of home and environmental interventions for dementia care.…”

Needs of people with dementia and their spousal carers: A study of those living in the community

“…Contemporary Australian research literature reporting the needs of people with dementia and their carers has considered a broad range of caring situations and focused on carers’ experiences . Views of people with dementia are commonly not included in research; however, inclusion of people with dementia in qualitative research is important in developing personalised and responsive services . Research concerning dementia and services in the Australian context has focussed on experiences of carers who use services and reasons for service use (or non‐use) but has not explored how the needs of carers and the people with dementia change as dementia progresses .…”

Design Probes for People with Dementia

“…The majority of research published about dementia and their caregivers is quantitative in nature while in particular qualitative research has the potential to provide meaningful insights into experiences and values of people with dementia. (Carmody, Traynor, & Marchetti, 2015). Persons with dementia themselves are often excluded from research with the result that their perspectives remain underexposed (Carmody et al, 2015).…”