Timely diagnosis of dementia for people with a learning disability

Wednesday 27 September 2017

Emma Killick, MacIntyre’s Director of Adult Services, highlights the challenges of getting a timely diagnosis of dementia for people with a learning disability and how these challenges must be overcome.

Emma Killick MacintyrePeople with a learning disability are at greater risk of developing dementia at a younger age. Did you know that one in ten people with a learning disability develop young onset Alzheimer’s disease between the age of 50 and 65?

However, while this statistic might be known, the challenge of getting a timely diagnosis of dementia for someone with a learning disability remains. Dementia is less likely to be detected in the early stages for people with a learning disability, meaning that either a diagnosis is given much later down the pathway, or sometimes not at all.

Diagnostic overshadowing, when dementia symptoms are mistaken for behaviours related to the person’s learning disability, is one reason for this. Rather than memory loss, people with a learning disability often present behavioural changes in the early stages of dementia. These behavioural changes can be subtle, and therefore often go unnoticed over time, especially by those closest to the individual. Complex health conditions can also complicate a diagnosis and mask some other symptoms being shown.

On the flipside, a person’s learning disability could also lead to assumptions being made; if they are a certain age and have Down’s syndrome, it could be presumed they are on the dementia pathway when in fact it could be another health condition. To overcome this, a baseline assessment is needed to look at changes and rule out the possibilities of other causes. This will ensure that all changes are properly documented and monitored, all causes are explored and that an informed diagnosis can be made as early as possible.

Why is receiving a timely diagnosis important? There are numerous myths that receiving a diagnosis of dementia won’t help the person and there is limited understanding about what can be done once a diagnosis has been given. But in fact, receiving an early diagnosis DOES and CAN make a difference to someone with a learning disability and dementia. It’s not a case of providing someone, their friends and family with a diagnosis and leaving it at that. On going post-diagnostic care in the form of medication, social and emotional support and even environmental changes can make a big difference to someone with a diagnosis and can ensure they are able to live well with dementia.

Alongside the DAA and its Seldom Heard Groups campaign, MacIntyre is working hard as part of the Department of Health funded Dementia Project to ensure more people with a learning disability who are living well with dementia can receive a timely diagnosis. We know that it’s important for not only health professionals to be more aware of the challenges presented and how they can be overcome, but also for families, friends and the staff supporting people with a learning disability and dementia to have the skills and knowledge to spot the early indicators and stop possible diagnostic overshadowing.

More importantly, we know that it’s vital for the person on the dementia pathway to have all the information they need, at the right time, in the right way, so they can be supported to make decisions that make sense to them. Taking clear action to ensure people with a learning disability understand what dementia is, what it could mean for them and their future, is essential to make sure that people’s changing needs are constantly supported.

What happens next? We’re looking forward to the launch of the DAA’s Seldom Heard Groups campaign report this month, which will shed light on how detailed health recording, involving health professionals and families along the way and sharing knowledge and best practice will all contribute to improving the process of gaining a timely diagnosis of dementia for someone with a learning disability.