Dementia and Down's syndrome

Almost all people with Down’s syndrome will develop changes in the frontal lobe of their brain as they get older. This can cause similar symptoms to dementia, such as difficulties with decision making and planning, and changes in behaviour. However, not all people with Down’s syndrome will go on to develop dementia.

The reasons why people with Down’s syndrome are at a higher risk of Alzheimer’s disease are not well-understood. It is thought to be due to chromosome 21, which most people with Down’s syndrome have an extra copy of. This leads to a build-up of a protein, which forms plaques on the brain. These plaques are a feature of Alzheimer’s disease.

Dementia symptoms in someone with Down's syndrome

People with Down’s syndrome may have similar symptoms as people without Down's syndrome. However, there may be some differences, such as changes in the person’s behaviour and personality.

They might become less willing to co-operate (for example, with daily tasks around the home). Or they might become stubborn, irritable or withdrawn.

The most common sign of dementia in older people is memory loss. As a person with Down’s syndrome may already have difficulties with their short-term memory, this symptom of dementia can easily be missed.

People with Down’s syndrome may experience epilepsy or fits. If a person with Down’s syndrome in later life begins to have fits, or experiences them more than usual, this could be a sign of dementia. Speak to the GP straightaway if you have any concerns about the person you care for. If the person has serious fits or seizures, it’s possible their health will get worse more quickly.

If the person you care for has Down’s syndrome, they are also more likely to have sight or hearing loss, depression, and an underactive thyroid. Dementia can complicate all of these conditions. If you have any concerns or worries, speak to their GP or community learning disability nurse.

Annual health checks for people with Down's syndrome

Everyone who has Down’s syndrome should have a baseline test by the age of 30. This test is important because, as the person gets older, it establishes their level of functioning. This includes their skills, abilities and personality. Having a baseline makes it easier to spot possible health changes, including dementia, in the future.

An adult with Down’s syndrome should have a health check with their GP once a year, unless changes are noted sooner. The GP checks:

• physical health (weight, heart rate and blood pressure, as well as blood and urine tests)
• vision and hearing
• medication
• communication
• lifestyle and mental health (including checking for depression)
• for any changes that may suggest they have dementia.

Following this, their GP might make a referral to a specialist.

As part of the health check, the person should have an agreed health action plan. This will give you advice on how you can help them to stay healthy.