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Dementia and Down’s syndrome

The lived experience of dementia for people with Down’s syndrome.
Down's syndrome

This three-year longitudinal study involved three adults who have Downs syndrome and dementia. The sample size prevents generalisations about the needs of people with Downs who have dementia, however important findings were made.

Two themes emerged: acknowledgement of the sense of self and implications for post-diagnostic support.

The researcher found that despite the progression of dementia, the sense of self was still evident in each of the participants over a prolonged time. This was observed by the person making choices and engaging in things they enjoyed. It was still evident in all participants, even when verbal communication had diminished.

Autonomy

With post-diagnostic support, it was found that the individual diagnoses were not consistently discussed with participants, which was a source of distress. Furthermore, the participants became withdrawn and excluded from social activities, also causing them to feel confused and upset.

The research reveals areas

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This three-year longitudinal study involved three adults who have Down’s syndrome and dementia. The sample size prevents generalisations about the needs of people with Down’s who have dementia, however important findings were made.

Two themes emerged: acknowledgement of the sense of self and implications for post-diagnostic support.

The researcher found that despite the progression of dementia, the sense of self was still evident in each of the participants over a prolonged time. This was observed by the person making choices and engaging in things they enjoyed. It was still evident in all participants, even when verbal communication had diminished.

Autonomy

With post-diagnostic support, it was found that the individual diagnoses were not consistently discussed with participants, which was a source of distress. Furthermore, the participants became withdrawn and excluded from social activities, also causing them to feel confused and upset.  

The research reveals areas where learning disability practitioners can provide support by educating carers to be aware that the sense of self remains even when dementia is progressing. The person’s usual activities and choices should continue and it is important that they are made aware of what is happening to them. They should be encouraged to remain autonomous for as long as possible.

Watchman K (2016) Investigating the lived experience of people with Down syndrome with dementia: overcoming methodological and ethical challenges. Journal of Policy and Practice in Intellectual Disabilities. 13, 2, 190-198. doi: 10.1111/jppi.12167. 

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