Learning Disabilities and Dementia

Learning disabilities and dementia

Advances in medical and social care have led to a significant increase in the life expectancy of peoplewith learning disabilities. The effect of ageing on people with learning disabilities – including therisk of developing dementia – has, therefore, become increasingly important. This information sheetoutlines some of the issues concerning people with a learning disability who develop dementia.

The causes of learning disability are diverse. They include genetic disorders such as Down’s syndrome, pre- or post-natal infections, brain injury, and general individual differences.

What is dementia?

Dementia is a general term used to describe a group of diseases that affect the brain. Alzheimer’s disease is the most common form of dementia. The damage caused by all types of dementia leads to a progressive loss of brain tissue. As brain tissue cannot be replaced, symptoms become worse over time.

Symptoms may include:
Loss of memory
An inability to concentrate
Difficulty in finding the right words or understanding what other people are saying
A poor sense of time and place
Difficulty in completing self-care and domestic tasks and solving minor problems
Mood changes
Behavioural changes
There is no evidence that dementia has a different effect on people with learning disabilities than it does on other people. However, the early stages are more likely to be missed or misinterpreted, particularly if several professionals are involved in the person’s care. The person may find it hard to express how they feel that their abilities have deteriorated, and problems with communication may make it more difficult for others to assess change.

What are the risks?
Down’s syndrome and Alzheimer’s diseaseAbout 20 per cent of people with a learning disability have Down’s syndrome. People with Down’s syndrome are at particular risk of developing dementia.
Figures from one study (Prasher, 1995) suggest that the following percentages of people with Down’s syndrome have dementia:
30-39 years - 2 per cent40-49 years - 9.4 per cent50-59 years - 36.1 per cent60-69 years - 54.5 per cent
Studies have also shown that virtually all people with Down’s syndrome develop the plaques and tangles in the brain associated with Alzheimer’s disease, although not all will develop the symptoms of Alzheimer’s disease. The reason for this has not been fully explained. However, research has shown that amyloid protein found in these plaques and tangles is linked to a gene on chromosome 21. People with Down’s syndrome have an extra copy of chromosome 21, which may explain their increased risk of developing Alzheimer’s disease.
Other learning disabilities and dementiaThe prevalence of dementia in people with other forms of learning disability is also higher than in the general population. Some studies (Cooper, 1997; Lund, 1985; Moss and Patel, 1993) suggest that the following percentages of people with learning disabilities not due to Down’s syndrome have dementia:
50 years + - 13 per cent65 years + - 22 per cent
This is about four times higher than in the general population. At present, we do not know why this is the case. Further research is needed. People with learning disabilities are vulnerable to the same risk factors as anyone else. Genetic factors may be involved, or a particular type of brain damage associated with a learning disability may be implicated.
How can you tell if someone is developing dementia?Carers play an important part in helping to identify dementia by recognising changes in behaviour or personality. It is not possible to diagnose dementia definitely from a simple assessment. A diagnosis is made by excluding other possible causes and comparing a person’s performance over time. The process should include:
A detailed personal historyThis is vital to establish the nature of any changes that have taken place. It will almost certainly include a discussion with the main carer and any care service staff.
A full health assessmentIt is important to exclude any physical causes that could account for changes taking place. There are a number of other conditions that have similar symptoms to dementia but are treatable: for example, hypothyroidism and depression. It is important not to assume that a person has dementia simply because they fall into a high risk group. A review of medication, vision andhearing should also be included.

Psychological and mental state assessmentIt is equally important to exclude any other psychological or psychiatric causes of memory loss. Standard tests that measure cognitive ability are not generally applicable as people with learning disabilities already have cognitive impairment and the tests are not designed for people without verbal language skills. New tests are being developed for people with learning disabilities.
Special investigationsBrain scans are not essential in the diagnosis of dementia, although they can be useful in excluding other conditions or in aiding diagnosis when other ssessments have been inconclusive.
What can be done if it is dementia?Although dementia is a progressive condition, the person will be able to continue with many activities for some time. It is important that the person’s skills and abilities are maintained and supported for as long as possible, and that they are given the opportunity to fulfil their potential. However, the experience of failure can be frustrating and upsetting, so it is important to find a balance between encouraging independence and ensuring that the person’s self-esteem and dignity are not undermined.
At present there is no cure for dementia. People progress from mild to moderate to more severe dementia over a period of years. New drug treatments seek to slow down or delay the progression of the disease and it is hoped that treatments will become more effective in the future. See the Society’s information sheet Drug treatments for Alzheimer’s disease – Aricept, Exelon, Reminyl and Ebixa.
Strategies for supporting the person with dementia People who develop dementia are, first and foremost, human beings with individual personalities, life histories, likes and dislikes. Dementia affects a person’s ability to communicate, so they may develop alternative ways of expressing their feelings. By understanding something of a person’s past and personality we can begin to understand what they might be feeling and why they respond in the way they do.
Many practical strategies have been developed to support people with dementia and their carers. Here are some ideas:
Enable individuals to have as much control over their life as possible. Use prompts and reassurance during tasks they now find more difficult.
Help the person by using visual clues and planners to structure the day.
Use visual labels on doors to help people find their way around their home in the early stages.
Try to structure the day so that activities happen in the same order. Routines should be individual and allow for flexibility.
A ‘life story book’ comprising photos and mementos from the person’s past may be a useful way to help the person interact and reminisce.
If speech is a problem make use of body language. Simplify sentences and instructions, listen carefully and give plenty of time for the person to respond.
If someone is agitated, the environment might be too busy or noisy.
Relaxation techniques such as massage, aromatherapy and music can be effective and enjoyable.
If someone becomes aggressive, carers and professionals should work together to try to establish reasons for the person’s frustration and find ways of preventing the behaviour or coping with the situation should it arise.
Medication may be used if someone is experiencing high levels of agitation, psychotic symptoms or depression. It is important that any prescribed medicine is monitored closely and that other ways of dealing with the situation are thoroughly explored.