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

Aging Ment Health. 2021 Sep;25(9):1595-1604. doi: 10.1080/13607863.2020.1783512. Epub 2020 Jun 24.


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; activism; advocacy; campaign; dementia and cognitive disorders.

Publication types

  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Dementia*
  • Humans