6. Treatment and support
Living well with dementia requires a range of treatment, support and activities. For a person with a learning disability and dementia, getting the best outcome may mean seeing a psychiatrist who specialises in learning disabilities, as well as staff from the learning disability services. Treatments may include drug and non-drug approaches.
At present, there is no cure for dementia. Anti-dementia medications aim to temporarily improve symptoms.
It is not clear whether the drugs that are routinely offered to people with Alzheimer's disease (eg donepezil) are of more or less benefit to people with Down's syndrome and Alzheimer's. Few studies have been done and the results are not consistent. Feedback from day-to-day use of these drugs is that they benefit many people. Drugs like donepezil can cause side effects, but may still be offered to a person with Down's syndrome and dementia, unless they have medical conditions (eg heart problems) that rule this out.
The other anti-dementia drug that is increasingly used in the general population is called memantine. A recent trial of memantine given to people with dementia and Down's syndrome showed no benefit.
A person with a learning disability may already behave in ways that others find difficult or challenging (eg agitation or aggression) and this can worsen if they develop dementia. The person may have a different sense of reality because of the dementia. By understanding this, carers can begin to be aware of what they might be feeling, and be able to interpret their behaviour. Carers and professionals should work together to understand the reasons or triggers for the person's behaviour and find ways of preventing it.
Changes in behaviour are often caused by the environment, undiagnosed pain or the actions of others. If the living environment is too busy or too noisy (eg because of television or conversations), this can trigger agitation or increased confusion. Mirrors and reflections in windows and shiny surfaces can cause confusion or lead to misperceptions. The environment should be calming and familiar.
See 'Tips for carers' below for further information about how to adapt communication and activities for someone with learning disability and dementia. Antipsychotic medication and sedatives should only be used after everything else has been tried.
A person with a learning disability and dementia may be able to continue with many activities for some time if they are given the right support. They should be encouraged to maintain their independence for as long as possible, if this is what they want. However, the experience of failure can be frustrating and upsetting, so it is important to find a balance between encouraging independence and ensuring that a person's self-esteem and dignity are not undermined. For more about this see 'Tips for carers' below.
Treatment and support for other conditions more common in people with Down's syndrome (eg hearing loss, depression, seizures, underactive thyroid) may be made more complicated by the person's dementia. It is usually best to start with their GP or community learning disability nurse if there are any concerns.
Tips for carers
There are many practical strategies that can be put in place to support people with a learning disability and dementia and their carers. These should all be based on the principles of person-centred care, taking into account the individual's current and past interests, preferences and needs. Here are some ideas:
- Dementia affects a person's ability to communicate, so individuals may need to develop alternative ways of expressing themselves. For anyone communicating with the person, non-verbal communication, including body language and tone of voice, will become increasingly important.
- Simplify sentences and instructions so that you are not asking too much in one statement, listen carefully, and give plenty of time for the person to respond.
- Maintain and nurture the person's friendships and social relationships. This may require the active involvement of staff or family. Enable the person to have as much control over their life as possible. Use prompts and reassurance during tasks that the person finds more difficult.
- Help the person by using visual or pictorial cues and planners to structure their day. Someone with a learning disability may already be familiar with pictorial cues (eg a sign of a toilet on a bathroom door).
- 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' or 'memory box' of photos and mementos from the person's past may be a useful way to help the person interact and reminisce. Long-term memory becomes increasingly important.
- Relaxation techniques such as massage and aromatherapy, as well as familiar music, can be effective and enjoyable. Someone with dementia may be able to sing or hum a favourite tune even after they have lost the ability to speak.