Introduction Patient involvement is a critical component of dementia research priority-setting exercises to ensure that research benefits are relevant and acceptable to those who need the most. This systematic review synthesises research priorities and preferences identified by people living with dementia and their caregivers.Methods Guided by Joanna Briggs Institute methodology, and Preferred Reporting Items for Systematic Reviews and Meta-Analyses framework, we conducted a systematic search in five electronic databases: CINAHL, Medline, PsycINFO, Web of Science and Scopus. The reference lists of the included studies were also manually searched. We combined quantitative and qualitative data for synthesis and descriptive thematic analysis.Results Eleven studies were included in this review. Findings are grouped into four main categories: Increase in knowledge, education, and awareness; Determining the cause; Sustainability of care; and Cure of dementia and related conditions.Conclusion There is a need to respond to the stigma associated with dementia, which limits access to care and the quality of life for both people living with dementia and their caregivers. We need to work on changing public, private and workplace attitudes about dementia and encourage supporting and participating in dementia research. Future research should involve people living with dementia and their primary caregivers from culturally and linguistically diverse communities in priority-setting exercises.
机构:
Univ Orebro, Family Med Res Ctr, Sch Hlth & Med Sci, SE-70182 Orebro, SwedenUniv Orebro, Family Med Res Ctr, Sch Hlth & Med Sci, SE-70182 Orebro, Sweden
机构:
Canterbury Christ Church Univ, Fac Hlth & Wellbeing, England Ctr Practice Dev, Canterbury, Kent, EnglandCanterbury Christ Church Univ, Fac Hlth & Wellbeing, England Ctr Practice Dev, Canterbury, Kent, England
O'Connor, Stephen
Jackson, Carolyn
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Canterbury Christ Church Univ, Fac Hlth & Wellbeing, England Ctr Practice Dev, Canterbury, Kent, EnglandCanterbury Christ Church Univ, Fac Hlth & Wellbeing, England Ctr Practice Dev, Canterbury, Kent, England
Jackson, Carolyn
DEMENTIA-INTERNATIONAL JOURNAL OF SOCIAL RESEARCH AND PRACTICE,
2020,
19
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: 2135
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2151
机构:
Sydney Local Hlth Dist, Older Peoples Mental Hlth, Sydney, NSW, AustraliaSydney Local Hlth Dist, Older Peoples Mental Hlth, Sydney, NSW, Australia
Sundakov-Krumins, Tali Elsayed
Lubbe, Sean
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Sydney Local Hlth Dist, Older Peoples Mental Hlth, Sydney, NSW, Australia
Univ Sydney, Fac Med & Hlth, Specialty Psychiat, Sydney, NSW, AustraliaSydney Local Hlth Dist, Older Peoples Mental Hlth, Sydney, NSW, Australia
Lubbe, Sean
Wand, Anne Pamela Frances
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Sydney Local Hlth Dist, Older Peoples Mental Hlth, Sydney, NSW, Australia
Univ Sydney, Fac Med & Hlth, Specialty Psychiat, Sydney, NSW, Australia
Univ New South Wales, Fac Med & Hlth, Discipline Psychiat & Mental Hlth, Sydney, NSW, AustraliaSydney Local Hlth Dist, Older Peoples Mental Hlth, Sydney, NSW, Australia
机构:
Univ Toronto, Dept Med, Div Neurol, Toronto, ON, Canada
Baycrest Ctr Geriatr Hlth, Jeff & Diane Ross Movement Disorders Clin, Toronto, ON, CanadaUniv Appl Sci Groningen, Res Grp Hlth Ageing Allied Hlth Care & Nursing, Groningen, Netherlands
Kleiner, Galit
Hobbelen, Hans
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Univ Appl Sci Groningen, Res Grp Hlth Ageing Allied Hlth Care & Nursing, Groningen, Netherlands
Univ Groningen, Univ Med Ctr Groningen, Dept Gen Practice & Elderly Care Med, Groningen, NetherlandsUniv Appl Sci Groningen, Res Grp Hlth Ageing Allied Hlth Care & Nursing, Groningen, Netherlands