Dementia Centred

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By Gayle Henry

November 16th, 2021

Learning Disabilities and Dementia

Other than Down’s syndrome there is limited research around learning disabilities and dementia. With an increasing life expectancy of people with learning disabilities there is likely to be an increase in dementia prevalence for this group too. This could become a significant economic and health issue if the area remains under researched and the sector under prepared.

Life expectancy for people with learning disabilities has increased for several reasons, including: better health care, nutrition, pre/post-natal care; better social attitudes; and increased access to education. There remain some significant health inequalities which can impact diagnosis of dementia, these include: failure to recognise someone is unwell / their cognitive abilities have changed, and lack of joint working from different care providers.

The rate of dementia is particularly high in people with Down’s syndrome, with symptoms occurring as young as 35. However diagnosis rates are higher for all people with a learning disability:

  • The prevalence rate for people with a learning disability aged 55-64 was 4.3%, compared to 0.3% of those with no learning disability.
  • For ages 65-74 it was 5.9% for people with a learning disability, compared to 1.1% for those with no learning disability.
  • For those aged 75 and over it was 11.2% for people with a learning disability, compared to 8.7% for of those with no learning disability.

(NIHS, 2019)

Although both result from dysfunctions of the cerebral cortex, dementia needs to be distinguished from learning disabilities. Learning disabilities are usually diagnosed during the developmental years whereas dementia is a clinical syndrome in adulthood. But it’s worth keeping in mind that both can be genetic, acquired, or multifactorial.

While all UK dementia strategies highlight the importance of early diagnosis, it is quite a challenge to diagnose within this group as many of the signs and symptoms of dementia overlap not only with delirium and depression, but also some learning disabilities symptoms or behavioural presentations.

Much of the literature advises on the importance of a robust baseline assessment of abilities and behavioural symptoms, which will allow comparison and indicate changes. When the baseline is established, regular two yearly screening is desirable for individuals with Down’s syndrome over the age of 40. There are diagnostic tools available online specifically for people who also have learning disabilities which vary in complexity.

It is also important to remember that while having learning disabilities, with or without dementia, there are other conditions of ageing which will affect this group, as it does the general population. For example, changes in pain, vision, hearing etc and these cannot always be communicated in their usual manner, but may manifest as behavioural or psychological symptoms. 

There is a high prevalence of behavioural and psychological symptoms of dementia in the general population and, although there are limitations of studies in the learning disability population, it is evident that they are present. Possibly up to 90% of people experience behavioural / psychological symptoms, with aggression, apathy and sleep disturbances being reported as the most common (Devshi et al, 2015). The same principles around managing behavioural and physiological symptoms of dementia (BPSD) generally apply in learning disabilities; many of the displayed behaviours require interpretation and action as they are often the result of an unmet need whether physical, psychological or emotional. 

Medication management and review is important in learning disabilities as some of the medications prescribed to manage BPSD may interact with current medication. They may also exacerbate symptoms depending on the type of dementia they have, for example neuroleptics and anxiolytics can make symptoms worse in some instances.

An interesting discussion point regarding this topic may be whether an individual moves from their current residence to an aged care facility; which type of facility is best suited to their needs – a learning disability or aged care facility?  Ageing in place is the preferred option for everyone, however, sometimes due to circumstances consideration may be required for moving into a facility which begs the question should this be an aged care facility or one which specialises in learning disabilities.

The DSDC is able to provide learning disabilities and dementia training for your organisation and the Best Practice Programme is also being updated to include additional information on the area. For more information, contact us at dementia@stir.ac.uk

 

References:

Devshi, R., Shaw, S., Elliott-King, J. and Hogervorst, E.; et.al. (2015) Prevalence of behavioural and psychological symptoms of dementia in individuals with learning disabilities. Diagnostics, 5, 06/10/2021. doi: 10.3390/diagnostics5040564.

 

NIHS Digital (2019) Learning Disability - Health Inequalities Research | Mencap

World Health Statistics 2021: A visual summary (who.int)

Life expectancy of people with learning disabilities | Research projects | Scottish Learning Disabilities Observatory (sldo.ac.uk)

Categories: Diagnosis