Learning Disability Today
Supporting professionals working in learning disability and autism services

Dementia and learning disability: common conditions made complex

Dementia is a progressive condition that affects mental processes such as memory and problem-solving, as well as mood or behaviour.1 There are almost 100,000 people currently living with dementia in the UK and this is projected to rise to 1.4 million in 2040.2

People with learning disabilities are more likely to develop dementia and it is particularly common in those with Down’s syndrome with an early and more rapid onset in this group.

For people with more complex learning disabilities, the initial symptoms are also likely to be less obvious so can go unrecognised, impacting on their quality of life, life chances, life expectancy and experience of services.3

Estimates of the prevalence of dementia in people with learning disabilities vary, in part because there has not always been good recognition, assessment and diagnosis.4 However, some analysis suggests that people with a learning disability are five times more likely to develop dementia as they get older compared to the general population.5

Further reading: Common conditions made complex: dysphagia

What is dementia?

According to the Alzheimer’s Society, the word ‘dementia’ describes a set of symptoms that over time can affect memory, problem-solving, language and behaviour. Alzheimer’s disease is the most common type of dementia.6

Common symptoms include difficulty remembering recent events or following conversations and feeling confused and disoriented even in familiar places.1

It can also be split into reversible and irreversible causes. It is important to rule out the reversible causes before making a diagnosis of dementia. Reversible causes include acute confusional state, which could be due to underlying illness or infection, hypothyroidism, vitamin B12 deficiency, depression, drug induced cognitive impairment and normal pressure hydrocephalus. Forms of irreversible causes may include normal ageing, other subtypes of dementia, and Parkinson’s disease.7

Currently there is no cure for dementia and the aim of management is to provide symptom control. There are both pharmacological and non-pharmacological treatments available for this.

Acetylecholinesterase inhibitors are the mainstay of pharmacological management, and a multidisciplinary team is essential for the long-term management of symptoms. The multidisciplinary team involves, doctors, nurses, occupational and physiotherapists, social workers, dietitians and all other specialties involved in the patient’s care.7

Why is dementia more common in people with a learning disability?

The reasons why more people with learning disabilities develop dementia are not fully known. The protein that causes brain cell damage in Alzheimer’s disease is produced from a gene on chromosome 21 and as people with Down’s syndrome have an extra copy of this chromosome, this may largely explain their increased risk of developing Alzheimer’s disease.8

Further research is needed, however, to identify causes in other people with learning disabilities. Genetic factors may be involved, or a particular type of brain damage associated with a learning disability could be a cause.8

Box 1. Types of dementia3

There are different types of dementia for which symptoms and progression may be different:

  • Alzheimer’s disease is the most common form of dementia which develops slowly. Early signs include difficulty forming new memories.
  • Vascular dementia can occur when blood flow to the brain becomes reduced (e.g. after a stroke). Signs include communication or movement problems, disorientation, memory loss and problems with communication. Vascular dementia can occur with Alzheimer’s disease in the same person.
  • Lewy Body Dementia – Lewy bodies are tiny deposits of protein in nerve cells. Symptoms can include changes in alertness, hallucinations, fainting and Parkinson’s disease type symptoms.
  • Frontal Temporal Dementia (Pick’s disease) is a rare form of dementia caused by damage to brain cells. Symptoms include lack of personal or social awareness, personality or behaviour changes, and changes in food preference.

Diagnosing dementia in people with a learning disability

The Confidential Inquiry into Premature Deaths of People with Learning Disabilities (CIPOLD) found that dementia care pathways were often reactive rather than proactive and that health and social care staff didn’t always have adequate dementia training.1

A lack of reasonable adjustments can also be a barrier to accessing healthcare settings and to equal healthcare.

Early recognition of signs that a person may be developing dementia offers an important opportunity to investigate and, if appropriate, seek a diagnosis. Recognition can be complicated because:

  • signs of other health problems (such as depression, sensory loss, or hypothyroidism) or reactions to a recent major life event may be wrongly interpreted as the onset of dementia
  • early signs of dementia may be missed (perhaps masked by other health problems) or attributed to the person’s learning disability or ‘challenging behaviour’
  • people with learning disabilities who do not understand what dementia is may be less likely to seek advice if they notice their memory is not working as well as it used to.4

It is therefore important therefore that:

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  • people who know a person with learning disabilities well are confident about noticing changes in the person’s health and behaviour and about seeking help if they are concerned
  • people with learning disabilities have full annual health checks that cover physical and mental health, vision, hearing and medication review, with action taken on any health problems discovered
  • people with learning disabilities showing signs suggestive of dementia should have the normal recommended investigations to identify any treatable causes of cognitive decline.

It is also recommended to assess every adult with Down syndrome by the age of 30 to establish a baseline against which to compare future suspected changes in functioning. It is worth considering screening all adults with Down syndrome over 40 regularly because of the increased risk of dementia and the prevalence of undetected but treatable illnesses. This should link to the person’s health action plan.9

In addition, People with Down’s syndrome are more prone to epilepsy (fits) than others. However, if a person with Down’s syndrome starts to develop epilepsy later in life, it is almost always a sign of dementia and should be investigated thoroughly. Up to three-quarters of people with Down’s syndrome and dementia develop fits. More severe seizures are linked to a more rapid decline in health.8

Screening tools for dementia

A simple clinical assessment asking carers if there have been any changes in behaviour suggesting a deterioration of memory, communication skills, disorientation, decline in level of self-care, difficulties in following routine, epilepsy, dysphagia or falls should be sufficient to consider an assessment to exclude dementia.9

There is no single test to diagnose dementia. However, there are a range of screening tools designed to help healthcare professionals. The Dementia Questionnaire for People with Learning Disabilities (DLD) and the Dementia Screening Questionnaire for Individuals with Intellectual Disabilities (DSQIID) are commonly used assessments.

There is also the Quality Outcome Measure for Individuals with Dementia (QOMID), which can be used with anyone with dementia and is staged for the three main stages of dementia – suspected/early, mid and late stage. There are 17 domains and although the domains are the same for each stage, the description of quality outcome may change across the stages to reflect the different requirements as dementia progresses.

Karen Watchman, Professor of Ageing, Frailty and Dementia at the University of Stirling, Scotland, UK and Adjunct Professor at the University of Limerick, said it is important to not to make assumptions that changes mean the onset of a type of dementia.

She added: “We know that there is an increased risk of dementia for people with Down’s syndrome at an earlier age, but changes may instead be associated with menopause, depression, sight, hearing difficulties, or an increase in pain or a physical condition (to name just a few). The difficulty in making a diagnosis of dementia in people with a learning disability reinforces the importance of knowing the person before these changes happen. Knowing how pain is communicated, whether verbal or not, knowing typical communication, and knowing an individuals usual and preferred routine is important to be able to monitor any change – anyone can do this, often family or consistent staff members will know the person best.”

How to manage dementia in patients with a learning disability

Someone with a learning disability may not fully understand a diagnosis of dementia or what it will mean for them, but it is still their right to know if they wish to. The explanation should be planned and shared with the person carefully, using language familiar to them.

According to the Alzheimer’s Society, information about the diagnosis is best broken down into small chunks and tailored to their ability to understand the past, present and future, as well as to their individual communication needs.10

They add that the person will already have their own ways of communicating so professionals and carers should continue to communicate in a way that suits them. However, dementia can make verbal communication more difficult so it can help to use a range of non-verbal communication. This includes gestures, body language and tone of voice. Consider using pictures or photos as prompts for conversation or to help the person understand what is being said.11

In addition, encouraging independence can also help the person’s confidence and sense of identity so supporting the person’s friendships and social activities is important.

Other top tips include having a familiar routine and making sure activities happen in the same order. Also, as far as it is possible, this should include consistency with carers, their routine and where they live. The environment can also have a big effect on someone’s behaviour, so it’s important to keep things as calming and familiar as possible.11


Additional resources


References

  1. https://www.bristol.ac.uk/media-library/sites/sps/leder/2095_Dementia_PDF.pdf
  2. https://www.alzheimers.org.uk/about-us/policy-and-influencing/local-dementia-statistics
  3. https://www.bristol.ac.uk/media-library/sites/sps/leder/2095_Dementia_PDF.pdf
  4. https://www.gov.uk/government/publications/people-with-dementia-and-learning-disabilities-reasonable-adjustments/dementia-and-people-with-learning-disabilities
  5. Strydom, T. Chan, M. King, A. Hassiotis, and G. Livingston, “Incidence of dementia in older adults with intellectual disabilities.,” Research in developmental disabilities, vol. 34, no. 6, pp. 1881–5, Jun. 2013.
  6. https://www.alzheimers.org.uk/about-dementia/types-dementia/what-is-dementia
  7. https://pavilionhealthtoday.com/gm/alzheimers-disease/
  8. https://www.pkc.gov.uk/media/31423/Alzheimer-s-Society-Factsheet-Learning-Disabilities-and-Dementia/pdf/Factsheet_LD_and_Dementia.pdf?m=636106787796670000
  9. https://www.england.nhs.uk/north/wp-content/uploads/sites/5/2018/12/IDD-GP-Guide-short-v1.9.pdf
  10. https://www.alzheimers.org.uk/sites/default/files/migrate/downloads/factsheet_learning_disabilities_and_dementia.pdf
  11. https://www.alzheimers.org.uk/about-dementia/types-dementia/learning-disabilities-dementia/support
author avatar
Alison Bloomer
Alison Bloomer is Editor of Learning Disability Today. She has over 25 years of experience writing for medical journals and trade publications. Subjects include healthcare, pharmaceuticals, disability, insurance, stock market and emerging technologies. She is also a mother to a gorgeous 13-year-old boy who has a learning disability.

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