Research project | Perspectives of older couples with a learning disability when one partner has dementia: identifying support needs of carer dyads.

Project

Perspectives of older couples with a learning disability when one partner has dementia: identifying support needs of carer dyads.

01/04/2021–04/05/2023

Funded by .

Collaboration with Key and University of Edinburgh.

People with a learning disability are enjoying longer lives, this means that more often than ever individuals are enjoying a long-term relationship with a partner and are often married. However, this population are at higher risk of developing dementia at a younger age. For example, at least one third of individuals with Down’s syndrome in their 50s will develop dementia, with more than half affected over age 60.

No known studies have been conducted with couples who have a learning disability when one partner has a diagnosis of dementia. The overall aim of this study is to understand the new research landscape of older couples with a learning disability when one partner has dementia. We will do so by gaining insight into existing relationships among couples, and by working alongside stakeholders/service providers to identify factors that may support sustainability in relationships as dementia progresses.

Participants will be 10 carer dyads of older people with a learning disability where one partner has a diagnosis of dementia (n=20) and 16 staff from social care service providers.

The study will use a qualitative and exploratory design to ensure that the perspectives of people with a learning disability and service providers are gathered within an overarching framework of social relationships and support. Biographical and empirical data will be gathered from ten carer dyads using focused conversations, supplemented by semi-structured interviews with sixteen staff from four service provider organisations. Analysis begins with individuals, followed by cross analysis with dyads and wider services.

Total award value ?138,190.00

People (2)

Professor Karen Watchman

Professor, Health Sciences

Dr Louise Hoyle

Senior Lecturer in Nursing, Health Sciences 麻豆传媒AV

Outputs (5)

Technical Report

Autism, aging, and dementia: A consensus report of the Autism/Dementia Work Group of the 2nd International Summit on Intellectual Disability and Dementia.

Esralew L, Janicki MP, Jokinen N, Kibsgaard Larsen F, Marsack-Topolewski C, McCallion P, Torres-Mughai D, Palanisamy V, Santos FH, Service KP, Shooshtari S, Thakur A, Tiziano G & Watchman K (2024) Autism, aging, and dementia: A consensus report of the Autism/Dementia Work Group of the 2nd International Summit on Intellectual Disability and Dementia.. International Summit on Intellectual Disability and Dementia. Toronto, Canada. https://www.the-ntg.org/_files/ugd/8c1d0a_35e8665e8ee549beaa536aa7a7eeb4c8.pdf

Article

“How will we cope?” Couples with intellectual disability where one partner has a diagnosis of dementia.

Watchman K, Jacobs P, Boustead L, Doyle A, Doyle L, Murdoch J, Carson J, Hoyle L & Wilkinson H (2024) “How will we cope?” Couples with intellectual disability where one partner has a diagnosis of dementia.. The Gerontologist, Art. No.: gnae030. https://doi.org/10.1093/geront/gnae030

Article

New guidance to support people with a learning disability and advancing dementia to move into a care home setting

Flannigan L, Mitchell-Ward S, Carson J & Watchman K (2023) New guidance to support people with a learning disability and advancing dementia to move into a care home setting. Journal of Dementia Care, 31 (4), pp. 32-34. https://journalofdementiacare.co.uk/issue/july-august-2023

Article

Couples with intellectual disability where one partner has dementia – a scoping review exploring relationships in the context of dementia and intellectual disability

Jacobs P, Watchman K, Wilkinson H & Hoyle L (2023) Couples with intellectual disability where one partner has dementia – a scoping review exploring relationships in the context of dementia and intellectual disability. Ageing and Society, 44 (11), pp. 2530 - 2569. https://doi.org/10.1017/s0144686x22001416

Article

Experiences of people with intellectual disability and dementia: A systematic review

Jacobs P, Watchman K, Wilkinson H, Hoyle L & McGenily L (2022) Experiences of people with intellectual disability and dementia: A systematic review. Journal of Applied Research in Intellectual Disabilities. https://doi.org/10.1111/jar.13063

麻豆传媒AV

Perspectives of older couples with a learning disability when one partner has dementia: identifying support needs of carer dyads.

People (2)

Outputs (5)

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