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 Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Univ Piemonte Orientale, Dept Translat Med, I-28100 Novara, ItalyUniv Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Conti, Andrea
Valente, Martina
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Univ Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Univ Piemonte Orientale, Dept Sustainable Dev & Ecol Transit, I-13100 Vercelli, ItalyUniv Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Valente, Martina
Paganini, Matteo
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Univ Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, ItalyUniv Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Paganini, Matteo
Farsoni, Marco
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Univ Piemonte Orientale, Dept Translat Med, I-28100 Novara, ItalyUniv Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Farsoni, Marco
Ragazzoni, Luca
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Univ Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Univ Piemonte Orientale, Dept Sustainable Dev & Ecol Transit, I-13100 Vercelli, ItalyUniv Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Ragazzoni, Luca
Barone-Adesi, Francesco
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Univ Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
Univ Piemonte Orientale, Dept Translat Med, I-28100 Novara, ItalyUniv Piemonte Orientale, CRIMEDIM Ctr Res & Training Disaster Med Humanita, I-28100 Novara, Italy
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Columbia Univ, Dept Neurol, New York, NY USAColumbia Univ, Dept Neurol, New York, NY USA
Shah, Hirai
Albanese, Emiliano
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Univ Geneva, Dept Psychiat, Geneva, SwitzerlandColumbia Univ, Dept Neurol, New York, NY USA
Albanese, Emiliano
Duggan, Cynthia
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Washington Univ, Sch Med, Dept Neurol, St Louis, MO 63110 USAColumbia Univ, Dept Neurol, New York, NY USA
Duggan, Cynthia
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Rudan, Igor
Langa, Kenneth M.
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Univ Michigan, VA Ctr Clin Management Res, Inst Healthcare Policy & Innovat, Dept Internal Med,Inst Social Res, Ann Arbor, MI 48109 USAColumbia Univ, Dept Neurol, New York, NY USA
Langa, Kenneth M.
Carrillo, Maria C.
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Alzheimers Assoc, Med & Sci Relat Div, Chicago, IL USAColumbia Univ, Dept Neurol, New York, NY USA
Carrillo, Maria C.
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Chan, Kit Yee
Joanette, Yves
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Canadian Inst Hlth Res, Inst Aging, Montreal, PQ, Canada
World Dementia Council, London, EnglandColumbia Univ, Dept Neurol, New York, NY USA
Joanette, Yves
Prince, Martin
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h-index: 0
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Kings Coll London, Ctr Global Mental Hlth, Hlth Serv & Populat Res Dept, London, EnglandColumbia Univ, Dept Neurol, New York, NY USA
Prince, Martin
Rossor, Martin
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UCL Inst Neurol, Dementia Res Ctr, Dept Neurodegenerat, London, EnglandColumbia Univ, Dept Neurol, New York, NY USA
Rossor, Martin
Saxena, Shekhar
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WHO, Dept Mental Hlth & Subst Abuse, Geneva, SwitzerlandColumbia Univ, Dept Neurol, New York, NY USA
Saxena, Shekhar
Snyder, Heather M.
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Alzheimers Assoc, Med & Sci Relat Div, Chicago, IL USAColumbia Univ, Dept Neurol, New York, NY USA
Snyder, Heather M.
Sperling, Reisa
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h-index: 0
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Harvard Med Sch, Brigham & Womens Hosp, Massachusetts Gen Hosp, Ctr Alzheimer Res & Treatment, Boston, MA USAColumbia Univ, Dept Neurol, New York, NY USA
Sperling, Reisa
Varghese, Mathew
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Natl Inst Mental Hlth & Neurosci, Dept Psychiat, Bangalore, Karnataka, IndiaColumbia Univ, Dept Neurol, New York, NY USA
Varghese, Mathew
Wang, Huali
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Peking Univ, Beijing Municipal Key Lab Translat Res Diag & Tre, Natl Clin Res Ctr Mental Disorders, Dementia Care & Res Ctr,Inst Mental Hlth,Hosp 6, Beijing, Peoples R ChinaColumbia Univ, Dept Neurol, New York, NY USA
Wang, Huali
Wortmann, Marc
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Alzheimers Dis Int, London, EnglandColumbia Univ, Dept Neurol, New York, NY USA
Wortmann, Marc
Dua, Tarun
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WHO, Dept Mental Hlth & Subst Abuse, Geneva, SwitzerlandColumbia Univ, Dept Neurol, New York, NY USA
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Univ Manitoba, Dept Family Social Sci, Fac Human Ecol, Winnipeg, MB, CanadaUniv Manitoba, Dept Family Social Sci, Fac Human Ecol, Winnipeg, MB, Canada
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Univ Hlth Network, Toronto Rehabil Inst, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Bethell, Jennifer
Pringle, Dorothy
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Univ Toronto, Lawrence S Bloomberg Fac Nursing, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Pringle, Dorothy
Chambers, Larry W.
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Alzheimer Soc Canada, Toronto, ON, Canada
McMaster Univ, Dept Hlth Res Methods Evidence & Impact, Hamilton, ON, Canada
Bruyere Res Inst, Ottawa, ON, Canada
York Univ, Fac Hlth, Hlth Nursing & Environm Studies, Toronto, ON, Canada
Univ Toronto, Inst Clin Evaluat Sci, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Chambers, Larry W.
Cohen, Carole
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Univ Toronto, Sunnybrook Hlth Sci Ctr, Toronto, ON, Canada
Univ Toronto, Dept Psychiat, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Cohen, Carole
Commisso, Elana
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Univ Hlth Network, Toronto Rehabil Inst, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Commisso, Elana
Cowan, Katherine
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Univ Southampton, Natl Inst Hlth Res Evaluat Trials & Studies Coord, James Lind Alliance, Southampton, Hants, EnglandUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Cowan, Katherine
Fehr, Phyllis
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Ontario Dementia Advisory Grp, Ottawa, ON, Canada
Dementia Alliance Int, Ankeny, IA USAUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Fehr, Phyllis
Laupacis, Andreas
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St Michaels Hosp, Li Ka Shing Knowledge Inst, Toronto, ON, Canada
Univ Toronto, Inst Hlth Policy Management & Evaluat, Toronto, ON, Canada
Univ Toronto, Dept Med, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Laupacis, Andreas
Szeto, Paula
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Univ Hlth Network, Toronto Rehabil Inst, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Szeto, Paula
McGilton, Katherine S.
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Univ Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada
Univ Toronto, Lawrence S Bloomberg Fac Nursing, Toronto, ON, CanadaUniv Hlth Network, Toronto Rehabil Inst, Toronto, ON, Canada