Dementia

A woman with a learning disability and dementia.

What is dementia?

Dementia is a condition associated with a decline in the brain’s cognitive ability. There are various types of dementia, with two of the most common being Alzheimer’s disease and vascular dementia.

Symptoms to look out for are:

  • loss of memory
  • problems with language and communication
  • behavioral and mood changes.

When it takes the form of Alzheimer’s disease, dementia is progressive, meaning that a person’s condition will degenerate with time.   It is worth noting that not all forms of dementia get worse over time.

Is dementia different for people with learning disabilities?

According to the Alzheimer’s Society, people with a learning disability are at greater risk of developing dementia than the general population.  They also tend to develop it at a younger age and at a faster rate.

If a person with a learning disability develops dementia it is important that they are supported to understand the consequences of the diagnosis.  Family and carers should make sure that only terms familiar to the person are used to explain changes.

No cure has yet been found for dementia.  However, if the type of dementia a person has is progressive, the person may be able to continue with many activities for a long 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, although it is important to find a balance between encouraging independence and ensuring that a person's self-esteem and dignity are not undermined.

Down's syndrome and dementia

People with Down’s syndrome are at a particular risk of developing the disease.  According to the Down’s Syndrome Association, as many as one in three people with the condition develop dementia in their lifetime, usually as a result of Alzheimer’s disease.

Symptoms of dementia in people with Down's syndrome are generally similar to those in the general population, although there are a few differences.  For example, people with Down’s syndrome are more prone to epilepsy, to a younger onset of the disease and to faster progression.

The mid-to-late stages of dementia in people with Down's syndrome are very similar to these stages in the general population.  However, signs of epilepsy in someone with Down's syndrome which start appearing only later in life are almost always a sign of dementia and should be investigated.

For further information, the Down’s Syndrome Association provide a publication entitled ‘Down’s Syndrome and Alzheimer’s Disease: A Guide for Parents and Carers’ (PDF).

What happens if you have a learning disability and your parent or carer develops dementia?

As parents and carers of people with learning disabilities get older they start needing more support themselves. This is particularly true if they develop dementia.

One of the ways of managing this change in support is to develop a routine of mutual caring, whereby the person with a learning disability and the older parent or carer who is displaying early symptoms of dementia are able to look after each other.

This requires new routines and ways of coping to be developed, and can involve the person with a learning disability helping their parent/carer with personal care, such as in taking medication, cooking and cleaning, shopping, or providing companionship should the person with dementia become housebound.

Work in this area by the Foundation for People with Learning Disabilities

Useful links and resources