There is a 'pressing' need to develop evidence-based research on ageing well and dying well with intellectual disabilities given the huge impact Covid-19 has had upon those living in generic care homes, according to a new study.

Older people with intellectual disabilities are a relatively small population dispersed across numerous care settings, but better ways of identifying this population are needed as there is still much unknown the oldest old people with intellectual disabilities who reside in long-term care settings.

The study, Hidden lives and deaths: the last months of life of people with intellectual disabilities living in long-term, generic care settings in the UK, was published in the Journal of Applied Research in Intellectual Disabilities and aimed to examine the mortality and needs for end-of-life care for this population group.

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With increasing age, more and more adults with intellectual disabilities will live in service-based settings, the majority of which are provided exclusively for adults with intellectual disabilities. However, it is recognised that a significant but often unquantifiable proportion of people with intellectual disabilities will be living in generic care homes and nursing homes for older adults.

People with intellectual disability in generic care homes

The authors said that the mortality and end-of-life care needs of adults with intellectual disabilities in generic care settings have largely been overlooked by both intellectual disability and end-of-life care researchers. There is some support for the idea that the population of adults with intellectual disabilities within these services may be distinct both from others in intellectual disability services and from those in care homes for older adults. 

In the study, various sampling strategies were used to identify the difficult to find population of people. Demographic and health data were obtained for 132 people with intellectual disability. 

Data were collected between April and June 2017 (T1). Then 12 months later (April to June 2018; T2), participants were contacted again and asked to complete the same questionnaire for each of the people with intellectual disabilities identified at T1.

The researchers found that the average age of generic care home residents was 68.6 years, and the majority were women (55.3%). Their health was typically rated as good or better. When asked the Surprise Question, (“Would you be surprised if this person was to die within six months?), responses indicated that 23.3% respondents might need end of life care.

At T2, 18.0% of this population had died. The average of death was 72.2 years. The majority died within the care setting (62.9%).

The researchers concluded: "To develop the evidence-base on ageing well and dying well with intellectual disabilities better ways of identifying this population are needed. This is all the more pressing now given the huge impact Covid-19 has had upon those living in generic care homes, a population that will include significant numbers of older adults with intellectual disabilities."