Myth busting: the importance of receiving a timely diagnosis of dementia

by Emma Killick

Figures now show one in ten people with a learning disability develop young onset Alzheimer’s disease between the age of 50 and 65 and the risk is higher and the age much younger than for the general population. We also know people with a learning disability are dying 20 years younger than the general population, so while they are living longer huge health inequalities are still very visible. It does not need to be this way.

More people with a learning disability are developing dementia, so the challenge now is to ensure that it is detected and an accurate and timely diagnosis is given. Unfortunately, dementia is less likely to be detected in the early stages for people with a learning disability, meaning that a diagnosis happens much later down the pathway.

This is partly due to diagnostic overshadowing, when dementia symptoms are attributed to another known health condition or simply put down to their learning disability. It is also in part because early signs and symptoms are not so obviously noticeable for a person with a learning disability. If someone has always been prompted with certain tasks it will be less easy to spot that they are starting to forget things. If someone has limited literacy or numeracy skills then perhaps they never managed their own money independently, so we would not notice they were failing to recognise coins or not paying bills on time.

In short, we are picking things up much later and by then their dementia will have progressed.

Add to all this the risk of a person’s learning disability potentially resulting in an inaccurate diagnosis being given – because a person with Downs Syndrome and of a certain age could be presumed on the dementia pathway when their symptoms are caused by a different health condition. We can see why timely diagnosis is such a challenge.

Baseline assessment

Ensuring timely diagnosis of dementia, or indeed any health condition, begins with a personalised baseline assessment that identifies what is normal for someone.

This needs to be a living document, used to actively monitor and record how someone is in relation to their own version of normal, specifically looking at changes to their health needs or behaviour, which at times can be subtle. Written records need to be accurately kept without archiving away important historical information. With accurate recording comes the opportunity to identify changes, spot patterns and an informed diagnosis can be made as early as possible.

Sadly many people still feel the need to ask why receiving a timely diagnosis is important for people with a learning disability. Perhaps they think receiving a diagnosis of dementia is just another label that won’t help them. However that simply illustrates a limited understanding of what can be done once a diagnosis has been given.

Challenge myths

It is important to challenge myths, because receiving a timely diagnosis does make a significant difference to someone with a learning disability and dementia.

Having an early enough diagnosis means plans can be put in place. It means a person may still be able to make informed choices about important aspects of their life and future, particularly in relation to their increasing care needs and of course about their wishes in respect of End of Life Care. It also enables someone to link with appropriate care and health services, accessing and benefiting from support from the right professionals.

People with a learning disability do not exist in isolation. They have friends, families and partners – all relationships which will be fundamentally altered by their dementia. Timely diagnosis enables all involved to be included and supported.

Up skilling and sharing knowledge with social and health care staff and professionals, families, friends, partners and anyone else involved, is vital in spotting the early indicators and signs, and to prevent possible diagnostic overshadowing. More importantly, it is essential for the person concerned to have all the information they need, provided at the right time and in the right way, to ensure they can make decisions which make sense to them.

This means information needs to be shared using their own preferred style. Tthose around them, including all the various social and health care professionals, must seek to ensure the person understands as much as they can in a way that makes sense for them.

Diagnosis not the end point

Getting a diagnosis of dementia, or any health condition, cannot be a case of providing an individual (whether they are a person with a learning disability or not) or a person in their support network with a verbal diagnosis – or worse a piece of paper – and leaving it at that.

Providing a diagnosis is one step on the pathway and is certainly not ever the end. There are conversations to be had and decisions to be made in relation to an individual’s on-going post-diagnostic care, whether in the form of medication or other treatments, or about the social and emotional support that must be provided to ensure someone can live as well as possible, for as long as possible with dementia.

Taking clear action to ensure people with a learning disability understand what dementia is and what it could mean for them is essential to make sure that people’s changing needs are picked up on and constantly supported.

Fundamentally professionals have a responsibility to consider the emotional impact of the diagnosis on the person concerned, as well as on those around them. Everyone concerned needs support and a timely diagnosis is integral to that.

None of this is easy but it isn’t impossible. Together we can play our part in challenging the attitudes and inequalities that still exist, and in championing the importance of people with a learning disability receiving a timely diagnosis of dementia.

Emma Killick is director of adult services at MacIntyre