Caring for older adults with Intellectual Disability: some NICE advice
John Starr is Professor of Health & Ageing and Director of the Alzheimer Scotland Dementia Research Centre at the University of Edinburgh. In the accompanying Editorial he comments on the recent NICE Guideline NG96, Care and support of people growing older with Learning Disabilities.
About fifteen years ago I had a ‘conversion’ experience. I was jointly running a regional memory clinic set up shortly after cholinesterase inhibitors were licensed, and I realised that one section of the population were being left out: people who in those days were labelled as having a Learning Disability, now relabelled Intellectual Disability. So I got some stakeholders together, set up a care pathway, and off I went seeing these people. I thought all would be fine: such adults would have cognitive problems, sensory impairments, lots of diseases, but hey, I was a geriatrician, it was what I did. Did I have a shock!
I was OK, but I realised I wasn’t doing as well as I would set as a standard for myself. So I read around to find out how I could improve this area of my practice and I found – very little indeed. So little that I took time out, with the support of a Health Foundation Leading Practice Through Research Fellowship, to find out what I should be doing. The help of people with Intellectual Disabilities, themselves, in leading this process, telling me what they thought it was to be healthy, was invaluable.
Now, fifteen years on, it is heartening that NICE have produced guidelines for this area of healthcare. And it’s important too because the life expectancy of people with Intellectual Disabilities has increased so that we will be seeing many more reaching late adulthood. But when I say seeing, this will only happen if we are looking out for them, because up to half of adults with a mild Intellectual Disability are unrecognised by healthcare professionals. Luckily for those people coming into older adult services in hospital, this can be done fairly easily because everyone should have some assessment of cognition. The concern is that most older adults in hospital are not under the care of geriatricians: our task is to encourage more wide cognitive assessment in other specialties – this needn’t be done by doctors, of course – and to include consideration of unrecognised Intellectual Disability as part of this. Though maybe this will require some of our colleagues to have ‘conversion’ experiences too!