Positive aspects of living with dementia: an exploratory qualitative multiple-case study

Abstract

SUMMARY

Background: Dementia is a disease that is feared amongst older people. A lot of this fear is due to research and media creating a stigma by often only discussing the negative aspects of the disease. In order to reduce this stigma and to contribute to a dementia-friendly society, there is a need to extend dementia research to examine positive aspects of the disease. Aim: To explore any positive aspects of living with dementia, from the perspectives of persons diagnosed with dementia, their informal caregivers and professionals. Methods: This research was conducted using an exploratory multiple-case design, involving four cases. Each case consisted of a person diagnosed with dementia, his or her informal caregiver and professional. Data collection consisted of semi-structured interviews and cultural probes methods. During cultural probe, the informal caregiver was asked to make photos of positive moments. A within-case analysis of resulting transcripts was performed followed by a cross-case analysis. The study was conducted between February and May 2016. Results: Three themes regarding the positive aspects of dementia were identified: (1) It’s the little things that matter, (2) being surrounded by loved ones, and (3) life is what you make of it. Conclusion and implications of key findings: Although informal caregivers seem to experience the least positive aspects, this study shows that living with dementia is not only characterized by a range of difficulties. Findings from this study may contribute to people having a more positive attitude towards dementia. It is recommended to use the insights from this study in educational interventions and articles for newspapers or on the web, in order to reduce the negative image of dementia that people have and to further support the development of a dementia-friendly society.