The involvement of people with dementia in advocacy: a systematic narrative review

Abstract

Objectives This Prospero-registered review sought to answer three questions concerning people with dementia involved in speaking out on behalf of themselves and others as dementia advocates. First, what are the views and motivations of the people involved? Second, what impact does this have upon them and others? Third, what are the future policy and research implications?

Methods

A systematic search and narrative synthesis of original research was conducted. Searches in Pubmed, Web of Science, PsychINFO and CINAHL followed PRISMA Guidelines. The review focused on people with dementia involved in advocacy. There were no restrictions based on study design or date. Language was limited to English.

Results

Seven papers were identified, with predominantly qualitative methodologies. Four overarching themes were identified: threats, fighting back, evolving identities and making a difference. Threats ranged from those arising from dementia as an illness, to exposure to stigma. Fighting back represented advocates’ response to these threats, often described using martial metaphors. Evolving identities captured advocates’ journeys through diagnosis to involvement in advocacy and subsequent impact upon identity. Making a difference represented the impact of dementia advocacy at an individual, community and societal level.

Conclusions

This review confirms that the threats associated with dementia extend beyond the symptoms of illness. Dementia advocacy offers potential improvements in well-being for those involved, through the activity itself and via extended social networks. There is little research on broader aspects of advocates’ identity, including ethnicity, gender, and age. There has been little attempt to quantify the impact of dementia advocacy.

Keywords:

• Alzheimer's disease
• dementia and cognitive disorders
• advocacy
• activism
• campaign

Acknowledgements

This report is independent research supported by the National Institute for Health Research Applied Research Collaboration South West Peninsula. The views expressed in this publication are those of the author(s) and not necessarily those of the National Institute for Health Research or the Department of Health and Social Care. The authors wish to thank Rachael Litherland of Innovations in Dementia for supporting this work.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Additional information

Funding

This work was carried out at the University of Exeter Medical School, supported by an Alzheimer’s Society clinical training fellowship for CMA (Grant number AS-CP-17-001).