TY - JOUR

T1 - Peer support for people living with rare or young onset dementia: An integrative review

AU - Sullivan, Mary Pat

AU - Williams, Veronika

AU - Grillo, Adetola

AU - Mackee-Jackson, Roberta

AU - Camic, Paul

AU - Windle, Gill

AU - Stott, Joshua

AU - Brotherhood, Emilie

AU - Crutch, Sebastian

PY - 2022/11

Y1 - 2022/11

N2 - ObjectivesThe 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.DesignA 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.ResultsThe 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.ConclusionConsistent 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.

AB - ObjectivesThe 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.DesignA 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.ResultsThe 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.ConclusionConsistent 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.

KW - rare dementia

KW - young onset dementia

KW - peer support

KW - integrative review

KW - Relationality

M3 - Article

VL - 21

SP - 2700

EP - 2726

JO - Dementia: the international journal of social research and practice

JF - Dementia: the international journal of social research and practice

SN - 1471-3012

IS - 8

ER -