Co-Developing a Peer-to-Peer Mentorship Program (P2MP) for People Living with Dementia

Lead Research Organisation: Leeds Beckett University
Department Name: School of Health and Community Studies

Abstract

In the UK there are 850,000 people living with dementia (PLWD). Half of all PLWD receive insufficient post-diagnostic support, suffering from high rates of social isolation, loneliness, and low quality of life. With increasing rates of dementia, PLWD have highlighted a need for opportunities to support one another, for sharing information and to foster a sense of hope and resilience. Marginalized and socially disadvantaged individuals, such as members of Black, Asian and Ethnic Minority groups and the LGBTQ community, have both higher risks of developing dementia and then greater difficulties accessing and receiving support post diagnoses.

The proposed project is to co-develop a peer-to-peer mentorship program (P2MP), utilising video-conference technology, with PLWD and their care partners, where appropriate. There will be an emphasis on including those who are experiencing compound marginalization, both living with dementia, as well as being a member of a marginalized group. Collaborations with Volunteer, Community and Social Enterprises will be incorporated into the project design to maximize adoption from marginalized populations. The P2MP will benefit health care providers by offering another option for social prescribing post-dementia diagnoses.

The desirability, feasibility and viability of the P2MP has already been reviewed and is enthusiastically supported by national and international dementia advocacy groups. Led by Dr Laura Booi, a social gerontologist with over a decade of experience co-developing ventures with PLWD and care partners, this project will also work in collaboration with the National Innovation Centre for Ageing and in conjunction with Dementia Alliance International.

Publications

10 25 50
 
Title Co-developed 6 videos to promote the experience of living with Lewy Body Dementia 
Description Funded by a UKRI Catalyst Award, and in collaboration with international Lewy Body Disease patient advocacy groups, and Lewy Body Society, this project co-developed 6 videos to promote the experience of living with Lewy Body. 
Type Of Art Film/Video/Animation 
Year Produced 2023 
Impact These videos were shared on the Leeds Beckett University website (https://www.leedsbeckett.ac.uk/research/centre-for-dementia-research/dementia-assessment-diagnosis-and-post-diagnostic-support/living-with-lewy-body-disease) and with our 'lived experience pannel' of experts. 
 
Description In the allotted time frame (Sep. 2021-July 2022) I successfully established strong networks with academic and clinical networks supporting people living with Lewy Body Disease, and patient advocacy groups of people living with Lewy Body Disease. I have conducted international Patient and Public Involvement meetings with people living with Lewy Body Disease and have developed the preliminary curriculum for the peer-mentorship program. I have also completed the program of support from Zinc that ran alongside the duration of this grant. In August 2022 I requested a four-month extension which takes me to December 31st 2022. Since this time, it have completed the following: (i) received ethical approval; (ii) recruited five people living with DLB, five care-partners and three expert clinicians; (iii) established recruitment relationships with Tea Time with Lewy, Dementia Ireland, and the International Lewy Body Association. I have also developed a short video to support my recruitment of this project: https://www.youtube.com/watch?v=AsOwm-o2A4w . This month (November, 2022) I presented my work at the UK Dementia Congress where I shared a poster with the preliminary results of the findings and requests for future participants.
First Year Of Impact 2022
Sector Communities and Social Services/Policy,Healthcare
Impact Types Cultural

Societal

Policy & public services