Perspectives on the care of the person with a learning disability and dementia

Abstract

This study was undertaken with people who have a learning disability and dementia and their carers. The overall aim of this research was to gain insight into the perspective of the person with a learning disability who had developed dementia, alongside that of their carer, with the anticipation that this would influence the development of practice and service delivery accordingly.

People with a learning disability are two to three times more likely to develop dementia than the general population, but historically, dementia care policy has rarely made specific reference to this group of people. In order to ensure that the needs of people with a learning disability and dementia are met, their voices need to be heard regarding their views and perceptions on what their needs are and what health and social care support services are required in order to meet those needs. Very few studies relating to this group of people can be found, one of the main reasons appearing to be the ethical and methodological challenges involved in carrying out research with people who have a learning disability.

This qualitative study involved 11 people who had a learning disability and dementia, along side a nominated carer participant for each person. Semi-structured interviews were used and the transcriptions were analysed using Interpretative Phenomenological Analysis, whereby themes were identified.

The findings illustrated that services experienced difficulties in providing person centred care, particularly the poor communication between service providers working with each individual, and the general lack of person centred approaches to care. The data indicated that people with a learning disability and dementia wanted improved communication between service providers; improved understanding of dementia by those with the illness, and by family, paid and professional carers; to stay as well as possible; continue living in their home; and to have good access to a range of activities, services and support as deemed necessary.

In conclusion, this research goes someway to exploring and overcoming the barriers to including people with a learning disability and dementia in research studies. It found ways of listening to and interpreting the views of people with a learning disability and dementia about their lives and circumstances and has made it possible to produce recommendations in relation to practice and policy development. These include ways of ensuring person centred approaches to care, and suggestions on the effective implementation of policy documents key to this group of people.

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