As people with Down syndrome age, understanding possible signs of dementia, encouraging healthy routines, seeking medical advice early can help a person with Down syndrome continue to live well.
What is dementia?
Dementia describes a range of conditions that cause symptoms associated with a decline in memory. The changes can affect a person’s memory, thinking, communication, mood, behaviour, social skills and ability to complete everyday activities.
Everyone’s experience is different. Some people may notice small changes at first and continue living independently, while others may need increasing support over time.
Dementia is rare for people with Down syndrome under the age of 40, but the likelihood increases with age.
People with Down syndrome have a higher prevalence of dementia because the amyloid precursor protein (APP) is generated on chromosome 21. People with Down syndrome have three copies of chromosome 21, resulting in extra copies of APP.
Research indicates that by the age of 40, most individuals with Down syndrome have plaques in their brain that are associated with dementia. However, not all individuals with Down syndrome go on to develop dementia.
How to monitor and assess signs of dementia
It is important for adults with Down syndrome to have regular health checks and baseline assessments so changes in health, memory, thinking, communication and daily functioning can be noticed early.
Annual health checks with a GP are recommended from 18 years of age, and a baseline cognitive assessment is recommended from around 30 years of age. These assessments can help build a clear picture of what is usual for the person, making it easier to identify any changes over time.
For a full outline of best practice for monitoring and assessing signs of dementia in adults with Down syndrome, refer to the Down syndrome and dementia care pathway resources linked at the bottom of this page. This resource provides a guide on which assessments may be needed, why they are useful, when they should be completed, who should complete them and how often they should be reviewed.
Supporting healthy ageing for adults with Down syndrome
While we can’t change a person’s chromosomes, we can support adults with Down syndrome to age well by encouraging healthy habits throughout life. This includes eating well, staying physically active, staying socially connected, working or taking part in meaningful activities, and keeping the brain active.
For information about supporting healthy ageing, look at our ageing well resource at the bottom of this page. It includes information, practical tips and strategies that adults with Down syndrome, families and supporters can use to promote wellbeing throughout life.
What to do if there are signs of decline?
1. See a GP
Book in to see a GP to discuss your concerns.
2. Rule out other conditions or causes of decline
Diagnosis of dementia for people with Down syndrome can be difficult. It is important that a GP rules out other health issues or concerns that could be contributing to the decline.
3. Get referrals to specialists
A GP can provide referrals to specialists who can help with further assessments or diagnoses. Specialists may include psychologists, psychiatrists, a memory clinic or a specialist intellectual disability health clinic.
Helpful resources
For parents and carers: visit our Resource Hub.
For adults with Down syndrome: we have an Easy Read document about dementia.
For health professionals: video about improving brain health, presented by Dr Madeleine Healy.
If you would like to read about our project partners who assisted us and collaborated with us to develop these new resources, you can read about that on our News page.