Supporting a person with a learning disability and dementia

For a person to live well with dementia they need a range of appropriate treatments, support and activities. A person with a learning disability and dementia may see a psychiatrist specialising in learning disabilities, as part of their treatment.

They may also get support from staff from the learning disability services. As well as medicines, the person’s treatment may involve other types of therapies.

Treating the symptoms of dementia

At present, there is no cure for dementia. However, there are medicines for certain types, such as dementia caused by Alzheimer’s disease. These medicines may ease symptoms or prevent them from getting worse for a time for some people.

The medicines don’t slow down or stop the underlying disease from causing damage to the brain. They also will not increase a person’s life expectancy.

People with a learning disability and dementia may be prescribed one of these medicines. Donepezil (also known as Aricept) is one of the most common.

While medicines will not be effective for everyone, there is some evidence that they may improve the quality of life for some people and for those supporting them. Medicines, like donepezil, can cause side effects.

If the person has health conditions such as heart or stomach problems, this medicine may not be offered. Memantine is another medicine used to treat dementia symptoms.

This can be effective for people with learning disabilities and dementia. For people with Down’s syndrome and dementia, the current evidence suggests it will not work, although the doctor might suggest trying this.

Coping with changes in behaviour

The person you care for may begin to behave in ways that are distressing to you and others. Their dementia may also affect the way they perceive the world around them. Understanding this can help you to recognise what the person is feeling and to interpret their behaviour.

Caring for someone who has a learning disability and dementia

With the right support, the person you care for may be able to continue with their daily routines, activities and hobbies for some time. Think about their personality, their likes and dislikes, as well as their current and past interests and needs.

Communicating effectively

The person you care for will already have their own ways of communicating. You should continue to communicate in a way that suits them. Dementia can make verbal communication more difficult.

• It can help to use a range of non-verbal communication. This includes gestures, body language and tone of voice.
• Keep sentences short and simple.
• Avoid asking too many questions or giving too much information at once.
• Listen to the person carefully and give them lots of time to respond.
• Consider using pictures or photos as prompts for conversation or to help the person understand what is being said.

Maintaining independence and routines

Routines are really important for people with dementia, just as they are for people with learning disabilities. Encouraging independence can also help the person’s confidence and sense of identity.

• Support the person’s friendships and social activities. It can also help if you give their friends tips on how to support them.
• Encourage the person to stay as independent as possible. Let them do things in their own way (as long as they are safe). It can help to use prompts and reassurance when they are doing tasks or activities that they may find difficult. Adapting tasks can also help.
• Picture cues (such as an image of a toilet on the bathroom door) can be helpful and the person may already use these. Photos of carers and their names can also be helpful to have in the home.
• Having a familiar routine and making sure activities happen in the same order can really help a person with a learning disability and dementia. It’s also important to be flexible and adapt the routine to meet their needs if necessary.

Maintaining consistency

It’s important for people with learning disabilities and dementia to have consistency. As far as it is possible, this should include consistency with carers, their routine and where they live.

Working together will make it easier to understand the person’s behaviour, and what makes them feel better or worse. For example, they might feel distressed or confused if:

• there are lots of things going on around them
• they are in pain or discomfort
• other people’s actions are affecting them
• they live somewhere too busy or too noisy, for example because of television or loud conversations

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.

Antipsychotic medication

Sometimes, people with dementia who are experiencing changes in behaviour are prescribed antipsychotic medicine. They should be used with caution and only considered after all other options have been tried.

Some people with learning disabilities may already be taking antipsychotic medicine for their behaviour. If this is the case, they should have regular reviews. The medicine should only be continued where it is having a proven benefit.

If you have any questions about the medicine the person you care for is taking, or if a new medicine for one condition is making another worse, speak to the learning disability team or their GP.

Recognising and managing pain

As with anyone, recognising and managing pain is important in people with a learning disability and dementia. Pain or discomfort can be caused by an injury, an illness or a medical condition.

Both dementia and learning disabilities can mean that the person finds it hard to say that they are in pain, so it’s important be aware of signs.

You are likely to know what might suggest the person you care for is in pain or feeling uncomfortable, and the best ways to support them. This may include looking at how the person is sitting, making sure they have enough to eat and drink, or using pain medication (unless you have been advised against this).

Sometimes, when a person is in pain, it can also lead to changes in their behaviour. Speak with the GP if you have any concerns as they can investigate whether there is a physical or medical cause for any discomfort or pain.

Support from other people

The person you care for may enjoy being with other people with a learning disability and dementia. As a carer, you may also find that talking to other people in a similar situation is helpful, and that it can provide you with support and ideas to help the person.