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How do we meaningfully engage stakeholders in developing a best practice approach to post-diagnostic dementia support?

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



This is the authors' accepted manuscript of an article that has been published in its final definitive form by Dementia Publishing Community Benefit Society, 2022.

For re-use rights please refer to the publisher's terms and conditions.


The involvement of people living with dementia and their carers in research is growing. We established a mixed stakeholder group, the ‘Dementia Care Community’, to inform a research programme focused on improving post-diagnostic dementia support. The group includes people living with dementia, carers, and professionals involved in providing dementia care and support. We have used a range of approaches to establish and facilitate the involvement of a diverse group of stakeholders in our research. A number of factors have been important in enabling and maintaining meaningful involvement, including time and resources, having a lead facilitator, and offering a flexible approach. Our experiences so far suggest that there are multiple advantages of involving a mix of stakeholders, with reciprocal benefits for the research and contributors. We reflect on our experiences and share key learning to support others planning for involvement in dementia research.

Publication metadata

Author(s): Brunskill G, Wheatley A, Bamford C, Booi L, Costello J, Herbert J, Tucker S, Robinson L

Publication type: Article

Publication status: Published

Journal: Journal of Dementia Care

Year: 2022

Issue: March/April 2022

Print publication date: 01/03/2022

Acceptance date: 27/10/2021

Date deposited: 16/12/2021

ISSN (print): 1351-8372

Publisher: Dementia Publishing Community Benefit Society