New Research Study: Older Carers

On Wednesday 20 November, Julian Hallett, DSA Services Development Manager, was delighted to be involved in an event launching the findings of an important research study which looked at the experiences of older parents of adults with a learning disability. The research was commissioned by New Forest Mencap and was funded by the Big Lottery Awards for All grant. The researcher was eminent social scientist Professor Rachel Forrester-Jones, recently appointed head of The Centre for the Analysis of Social Policy(CASP) at Bath University. The study involved 20 family-carers of adults with a learning disability, a number of whom had Down’s syndrome.

There was much celebration of the fact that people with Down’s syndrome are now enjoying  a much improved life expectancy, greater opportunities for inclusion in society and in many cases had been at the forefront of mainstream education, when they were children.

However, against that backdrop, the researcher found families often encountered services that were unresponsive to their changing needs and did not seem to be planning ahead for when support needs might increase. Austerity measures had increased the pressures on local authority budgets meaning that services were either unavailable, or only focused on those with critical needs. This is unacceptable and the research calls for improvement in policy to ensure that older people with a learning disability receive the coordinated care to which they are entitled. It was also interesting to note the mutuality of caring, where older individuals with a learning disability had a reciprocal caring relationship with an ageing parent. The lack of joined-up commissioning often meant that the families reached a crisis point, for the want of some (relatively) small-scale support at an earlier stage.

The event was chaired by Baroness Jolly and attended by numerous families, professionals and local service providers.

You can watch the BBC’s coverage below and you can read more about the research here.

We hope to feature an article from the researcher in an upcoming journal and will use this important research to inform our policy work and response to relevant Government consultations.

For information about getting older with Down’s syndrome, do call our Information Team on 0333 12 12 300 or  take a look at this section of our website.