The Experiences of Caring for Someone With Dementia and a Learning Disability: A Qualitative Systematic Review

Dementia

Hughes, M., Hanna, K., et al. (2024).

Dementia, 23(5), 817-849.

<div>This qualitative systematic review explores the experiences individuals providing care to people with both dementia and learning disabilities. This article summary reports care partner perspectives of provided services.</div>

National Institute for Health and Care Research Applied Research Collaboration North West Coast (United Kingdom)

2000 to July 2023

<div>Qualitative and mixed method studies</div>

14

<div>Care partners of individuals with a dual diagnosis of dementia and learning disability reported the following needs regarding training, education, learning, and development:</div> <div> <div> <ul> <li>They wished to have improved knowledge and skills of care partners, especially in regards to dementia. Primary areas of interest included understanding the condition, the various types of dementia, how dementia progresses, and how to support the changing needs of the care recipient as they progress through their dementia journey.</li> <li>They wanted to receive dementia training tailored to individuals with learning disabilities.</li> <li>They requested education regarding dementia and physical health, pain detection, and pain management.&nbsp;</li> </ul> <div>Reduced knowledge led to the use of inappropriate strategies for escalating behaviors, increased emotional burden, and the employment of staff that lack the ability to meet the needs of individuals with a dual diagnosis of dementia and learning disability. Benefits of education/training included enhanced care partner understanding, improved care provision, sharing of knowledge and expertise on how to best support these individuals, and increasing access to external healthcare support.&nbsp;</div> </div> </div>

<div>Care partners of individuals with a dual diagnosis of dementia and learning disability reported having to advocate for concerns to be taken seriously when providers disregarded behavioral changes or attributed these changes to their learning disability.</div>

<div>Care partners of individuals with a dual diagnosis of dementia and learning disability reported mixed experiences with accessing and utilizing services:</div> <div> <ul> <li>When support was available, some individuals reported positive experiences including faster diagnoses, access to tailored information, and access to needed medications.&nbsp;</li> <li>Others reported disparity in accessing professional and external services, with difficulty navigating social care organizations, a lack of awareness of the available support/services, not knowing when to request help, and having requests for support being ignored/denied.&nbsp;</li> <li>Some families reported having to advocate for professionals to listen to their concerns and implement needed supports, while others reported being overwhelmed with the number of professionals involved in the care plan.</li> <li>Many families reported a lack of confidence in health care professionals and social service providers and their ability to provide needed care for their loved ones with a dual diagnosis.&nbsp;</li> </ul> </div>