MacIntyre was established in 1966 by Kenneth Newton Wright, the parent of a disabled child. It has grown to become a leading national charity, highly respected and committed to setting standards and increasing choice. MacIntyre provides learning, support and care for more than 1,500 children, young people and adults who have a learning disability and/or autism, at more than 150 services across England and Wales. Our diverse range of services includes registered care homes, supported living, outreach, accredited training schemes and lifelong learning services, as well as a residential special school and further education provision.
The figures now show that one in ten people with a learning disability develop young onset Alzheimer’s disease between the age of 50 and 65. We also know that people with a learning disability are dying 20 years younger than the general population, even though people with a learning disability are living longer. However inequalities are visible, but it does not need to be this way.
With more people with a learning disability developing dementia, the challenge now is to ensure that it is detected and an accurate and timely diagnosis is given. However, dementia is less likely to be detected in the early stages for people with a learning disability due to 'diagnostic overshadowing', meaning that a diagnosis is either given much later down the pathway, or even not at all.
However, a person’s learning disability could also lead to an inaccurate diagnosis being given; a person could be presumed to be on the dementia pathway if they are of a certain age and have Down’s Syndrome, when in fact their symptoms could be another health condition.
The way to overcome this and to ensure a timely diagnosis of any health condition can be given, a baseline assessment is needed to identify what is normal for that person, we then need to regularly monitor and record specifically looking at changes to a person’s health needs (which at times can be subtle) and rule out the possibility of other causes or health conditions. This recording needs to be well documented and written records accurately kept, without archiving important information; this will ensure that all the necessary information is recorded, patterns can be spotted and reported on, and as a result an informed diagnosis can be made as early as possible.
Many people still ask why receiving a timely diagnosis is important. Some people say that receiving a diagnosis of dementia won’t help a person and that there is limited understanding of what can be done once a diagnosis has been given. These are myths, as in fact receiving a timely diagnosis can and does make a difference to someone with a learning disability and dementia. Having a diagnosis means that plans can be put in place; it means, if the diagnosis is given early enough, that a person may still be in a position to make their own, informed choices about important aspects of their life and their future, especially in regards to End of Life Care, but also it gives the person the right support needed by professionals to access the right services.
Upskilling and sharing knowledge with staff, family, health professionals and anyone else involved is vital to spot the early indicators, signs and symptoms and stop possible diagnostic overshadowing. More importantly, it’s essential for the person on the dementia pathway to have all the information they need, at the right time, in the right way in a way that makes sense to them, to ensure they can make decisions that make sense to them. The person must be explained information using their own preferred style, and staff and professionals must make sure that the person understands. Easy Read, or sequencing, or objects of references are some of the ways that you might be able to explain dementia and the impact of it, to someone with a learning disability.
Getting a diagnosis of dementia, or any health condition, should not be a case of providing a person and their support network with a piece of paper and leaving it at that. It’s about the on-going post-diagnostic care in the form of medication, social and emotional support that must be provided in order to ensure the person can live as well as they can with dementia. 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. We also have a responsibility to consider the emotional impact of the diagnosis on the person, but also importantly on the people around them – whether that is their housemates, families, friends etc. And support is needed for all of these people, and the person.
Want further information? Each Friday, the MacIntyre dementia team release a new resource - for free! - on learning disability and dementia here or you can visit their website here.
MacIntyre tweet regularly via @DementiaLD and @HealthLD
Written by Sarah Ormston, Health, Dementia and Wellbeing Manager, MacIntyre
You will find a collection of young onset dementia / learning disabilities research studies collated by the Young Demerntia Network here.