Title: Co-Developing a Peer-to-Peer Mentorship Program (P2MP) for People Living with Dementia
Funder: Economic and Social Research Council

Abstract: The P2MP will fill the gap in post-diagnostic support for social inclusion by offering meaningful social activity, training and empowerment for PLWD and their carers. The overarching aim of this project is to improve the QoL and social inclusion of PLWD and their carers, by co-developing, piloting and assessing the acceptability and feasibility of a P2MP over VCT. Providing PLWD and their carer with an opportunity to support themselves and others in need through education, awareness, and social interactions will ultimately reduce the post-diagnostic cost that the NHS experience by offering a viable, inexpensive solution to increasing QoL and reducing social isolation. The P2MP will also offer guidance for experimental learning so that the PLWD/carer will be better educated and equipped to support themselves and each other through the care pathway. The desirability, feasibility and viability of the P2MP has already been reviewed by several national and international dementia advocacy groups (North East Dementia Alliance, UK Dementia Society, 3Nations Dementia Working Group, and Dementia Alliance International). Under-representation of marginalized populations in research has typically been attributed by the research community to such sub-groups being naturally 'hard to reach' and more challenging to involve. To remedy this, a PPI Advisory Group will be developed with members of marginalized populations who are PLWD or carers. Members of this group will be recruited through VOICE from the National Innovation Centre on Ageing (NICA) and with VCSE who work with marginalized populations. This project will utilize the lived experience of the PPI Advisory Group to co-develop the P2MP. The overall expected outcome of this project is the development of the P2MP , and its training and supervision package. Health care providers will offer the P2MP as an option for social prescribing to PLWD in the community.

Lay 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.

Research activity codes: 7.1 INDIVIDUAL CARE NEEDS
Health categories: NEUROLOGICAL