Time to change the narrative? Ageing with a learning disability and dementia

• Written by: Karen Watchman — The University of Stirling — Senior Lecturer
• Published: 15th January 2019

Karen from the University of Stirling calls for an increased awareness of how people with a learning disability would like to age.

2019 sees an increased awareness among the UK and international media that people with a learning disability are living for longer. Whilst we see longevity celebrated among older people who do not have a learning disability, this has not routinely extended to people with a learning disability. On the contrary, the headlines instead focus on the increased costs of providing social care over a longer period of time.

When we consider that even as recently as the 1980s the life expectancy for people with Down’s syndrome was 25 years and today people are living to 60 and beyond, this is surely a cause for celebration?

Isn’t it about time we changed the rhetoric? Instead of asking ‘How are we going to pay to care for this person as they get older?’ why are we not asking the person with a learning disability ‘How can we help you to live well as you get older?’

We know of the increased risk of dementia for some people with a learning disability, particularly individuals with Down’s syndrome, and the tendency for this to overshadow other conditions of ageing.

Two key questions to ask the person are:

• What would you like to achieve that dementia/ageing may mean is more difficult?
• When did you last have a medication review?

The second question may not be an obvious one, but ongoing research (this link will take you away from our website) at the University of Stirling has not only highlighted ways to support people with a learning disability and dementia that do not involve medication, it identified that participants with a learning disability and dementia were taking between 3-10 different medicines each, often on a long-term basis. Sometimes learning disability support staff attributed changes in behaviour to dementia rather than side effects of medicines. The research has also demonstrated the success of non-drug supports for people with a learning disability and dementia. Social care staff are turning to music playlists, therapy pets, aromatherapy, environmental changes to the home, or a range of other individually selected activities in response to distress or agitation in people with a learning disability. Whilst medication should never be changed or stopped without consulting a GP, this approach is providing a complementary or alternative (often low or no cost) response to ‘as required’ anti-psychotic medication.

So surely it is time to change the narrative as we age alongside people with a learning disability? Knowing individual wishes and preferences is crucial. But so is having a social care staff team who are appropriately trained in supporting people with a learning disability as they age, whether with dementia, or other comorbidities associated with getting older. Let’s move away from seeing ageing as a problem and reinventing the wheel each time we see a diagnosis of dementia. In 2019, we need to see more effective planning and staff training that involves greater knowledge of individual wishes, better understanding of the complexities of healthy ageing with a learning disability and most importantly, an increased awareness of how people with a learning disability themselves want to age.

Karen Watchman is a Senior Lecturer in the Faculty of Health Sciences and Sport at the University of Stirling. She has developed resources for people with a learning disability and dementia including Jenny’s Diary (this link will take you away from our website) and Supporting Derek (this link will take you away from our website) (updated and re-launched in 2018). Her one-day course Post-diagnostic support for people with a learning disability and dementia (this link will take you away from our website) is delivered from the University of Stirling, or locally within health or social care provider organisations on request.

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