Peer support for people living with rare or young onset dementia: An integrative review

Mary Pat Sullivan, Veronika Williams, Adetola Grillo, Roberta Mackee-Jackson, Paul Camic, Gill Windle, Joshua Stott, Emilie Brotherhood, Sebastian Crutch

Research output: Contribution to journalArticlepeer-review

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Abstract

Objectives
The aim of this integrative review was to identify and synthesize the literature on peer support interventions for people living with or caring for someone with a rare or young onset dementia.
Design
A literature search of articles was performed using the Nipissing University Primo search system, a central index that enables simultaneous searches across databases which included MEDLINE (PubMed), Web of Science, PsycINFO, CINAHL, Sociological Abstracts, Cochrane Library.
Results
The eleven papers that met the inclusion criteria spanned eighteen years and from five countries. Studies reported on peer support programs that were either hospital-based (n = 6) or community-based (n = 4), and were predominantly led by disciplines in the health sciences. Only one study did not involve delivering services. There was a range of methodological quality within the studies included in the review. Further analysis and synthesis led to the identification of three overarching peer support themes. These included: (1) peers as necessarily part of social support interventions; (2) a theoretical portmanteau; and (3) dementia spaces and relationality.
Conclusion
Consistent with a much larger body of work examining peer involvement in social interventions, this review reinforced the valuable contribution of peers. A full understanding of the mechanisms of change was not achieved. Notwithstanding, the issue of studies neglecting to sufficiently conceptualize and describe interventions is an important one – drawing attention to the need to continue to explore varied delivery, including co-produced models, and more effective evaluation strategies to inform the dementia care sector.
Original languageEnglish
Pages (from-to)2700–2726
Number of pages27
JournalDementia: the international journal of social research and practice
Volume21
Issue number8
Early online date16 Sept 2022
Publication statusPublished - Nov 2022

Keywords

  • rare dementia
  • young onset dementia
  • peer support
  • integrative review
  • Relationality

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