Learning Disabilities and Dementia

Information for carers, who are supporting a person with Learning Disabilities, who may be experiencing dementia.

In the same way that anyone can develop dementia, a person who has a Learning Disability may also start to show the same signs and symptoms.

This section gives you more information about the subject of learning disabilities and dementia and some useful contact names and addresses.

When a person has a learning disability, they have a much lower than average level of intellectual, social and functional ability (in the bottom 2% of the population). This implies that people with a 'Leaning Disability' will generally need extra help from others throughout the course of their lives, to remain safe and have their needs met. This is a lifelong condition which is apparent in people in childhood and which should not be confused with 'Learning Difficulties', such as dyslexia, which disadvantage people in relation to education, reading and learning.

The most common symptoms of dementia in people with a learning disability are:

Problems remembering things that happened a short while ago, whilst being able to remember things that happened in their youth.
Difficulty recognising people or remembering names.
Repeating conversations, asking the same questions in a short space of time.
Loss of skills in self care, and community use, such as washing, dressing, shopping, cooking and eating.
Increased tiredness and general slowing down.
Changes in mood, personality and behaviour such as becoming more possessive, scared, losing inhibitions, or getting more emotional or withdrawn.
Becoming disorientated and confused with time, places, people and objects such as wandering, getting up in the middle of the night.
Starting to have epileptic seizures.

When you work with a person who have a learning disability and dementia, it is important to think carefully about their likes, dislikes, daily routine and life history. It is also best to help the person keep the skills they still have and give them assistance only when they really need it.

These are practical things that may help, for example;-

Structuring the day so that activities happen in the same order, providing the person with a routine.
Outings should be to familiar places and with familiar people.
Providing the person with labels and picture aids around the home to help them to find their way.
Encouraging the person to do as much as possible for themselves. Using prompts and reassurance during tasks that they now find more difficult.
Trying to keep the environment calm with minimal disruption, maintaining a familiar layout to help the person to find their way around.
Keeping the person involved in activities for as much of the day as possible to avoid boredom and to reduce the likelihood of wandering, but making sure they don't get too tired .
During the later stages of dementia trying to use good non-verbal communication such as gestures (pointing, waving) and signs (e.g. Makaton).
Trying to remain calm and speak to the person clearly and gently.
Simplifying sentences and instructions by using shorter phrases and sentences.
Listening carefully and give the person time to respond.
Considering making a 'Life Story Book' such as a photograph album or a book filled with drawings, certificates, letters and anything that is special or significant for the person. It can also include their likes and dislikes. A Life Story Book can be used to jog memory and as a communication tool which can be added to over time.
It is important to review the person's general health regularly. Other conditions such as infections could make the person more confused.

Down's Syndrome and Dementia

Unfortunately people with Down's Syndrome are at risk of developing Alzheimer's Disease at a much earlier age than the general population (30+ compared with 70+).

Currently, research has found that three of the genes associated with Alzheimer's disease are found on chromosome 21. The majority of people with Down's syndrome have an extra copy of chromosome 21.

At present there is no single conclusive test for dementia, so diagnosis is complex and relies on establishing a change in function from a known baseline. It is important for carers to be aware of what is usual for the person they care for and be aware of the possibility of change. This may indicate that a person is struggling with things they used to be able to do well.

There are many conditions that can trigger changes in behaviour which are easily confused with dementia.

These include thyroid problems, urinary tract infections, sensory loss (hearing and sight difficulties), depression and other mental health problems as well as side effects of some medications.

Many of the common symptoms of dementia described may be present but this does not necessarily mean the person has dementia.

Family, carers and staff are very important in helping to identify whether someone has dementia by recognising change and deterioration.

If you have concerns that a person you support may be showing symptoms of dementia it is important to do two things. First of all it is a good idea for them to see their GP so that he or she can make sure that the person's health is good and that they are not suffering from any physical conditions which can be confused with the signs of dementia.

The second thing that people can do is to talk to the local Community Learning Disability Team. They can help by;-

Seeing the individual and offering an assessment to help reach a diagnosis. This is done by using a range of methods including discussions with carers.
Generally, the person with the learning disability is also seen and a variety of simple tests are carried out, which they will often find fun and enjoyable.
Suggesting medication where appropriate.
Supporting the individual's general health needs.
Supporting communication, eating and drinking.
Providing advice on suitable environments and equipment.
Providing advice on structure and management of daily routines.
Providing practical support in all aspects of mobility.
Assessing, giving advice and managing changes in behaviour.