Toggle Main Menu Toggle Search

Open Access padlockePrints

Outcomes valued by people living with dementia and their care partners: Protocol for a qualitative systematic review and synthesis

Lookup NU author(s): Dr Laura Booi, Dr Alison WheatleyORCiD, Dr Greta BrunskillORCiD, Mrs Silpi Dutta Banerjee, Professor Dame Louise Robinson, Claire BamfordORCiD



This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


Introduction: Growing numbers of interventions are being developed to support people and families living with dementia, but the extent to which they address the areas of most importance to the intended recipients is unclear. This qualitative review will synthesise outcomes identified as important from the perspectives of people living with dementia and their care partners, both for themselves and each other. Methods and analysis: The review will employ thematic synthesis methodology. Studies from 1990 or later will be eligible if they include qualitative data on the views of people living with dementia or their care partners on valued outcomes or the lived experience of dementia. Databases to be searched include MEDLINE, CINAHL, PsycInfo and Social Sciences Premium Collection, in addition to systematically gathered grey literature. Rayyan QCRI software will be used to manage the screening processes and NVivo software will be used to manage data extraction and analysis. The review will also critically evaluate the extent to which international recommendations address the areas of importance to people living with dementia and their families. The findings will be of relevance to researchers, policy makers, and providers and commissioners of dementia services. The protocol is written in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analysis Protocols guidelines. Ethics and dissemination: As the methodology of this study consists of collecting data from publicly available articles, it does not require ethical approval. We will share the results through conference presentations and an open access publication in a peer-reviewed journal. Our mixed stakeholder involvement group will advise on dissemination to non-academic audiences. Systematic review registration: PROSPERO CRD42020219274

Publication metadata

Author(s): Booi L, Wheatley A, Brunskill G, Banerjee S, Manthorpe J, Robinson AL, Bamford C

Publication type: Article

Publication status: Published

Journal: BMJ Open

Year: 2021

Volume: 11

Online publication date: 19/08/2021

Acceptance date: 03/08/2021

Date deposited: 03/08/2021

ISSN (electronic): 2044-6055

Publisher: BMJ Publishing Group


DOI: 10.1136/bmjopen-2021-050909


Altmetrics provided by Altmetric


Funder referenceFunder name
331Alzheimer`s Society