Down Syndrome and Dementia: A Care Staff Guide

Adults with Down syndrome are more likely than the general population to develop dementia, and to develop it at a younger age. For staff in supported living, residential care, day services and primary care, this makes knowing the early signs, and how to tell them apart from treatable conditions, an essential skill. This guide draws on NHS information and a support guide from Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust (CNTW). It is general information, not clinical advice.

Why age 30 matters

The NHS advises that adults with Down syndrome should have regular check-ups from about the age of 30 for signs of dementia, because they can develop it younger than other adults. That does not mean everyone will develop dementia in their thirties, but it does mean services should start watching for change early, keep records and arrange review. The NHS also recommends yearly GP check-ups for people with Down syndrome, which fit alongside the annual health checks offered to people with a learning disability.

Early signs to look out for

The CNTW guide lists changes that may be early signs of dementia. They include disorientation and confusion, problems with making decisions, losing interest in activities, being unable to learn new things, seizures, short-term memory loss, changes in communication, loss of social skills, agitation, mood changes, altered sleep patterns and changes in food preferences. The NHS also notes memory problems, confusion and communication difficulties as warning signs. In adults with Down syndrome, early dementia often shows up first as changes in personality, behaviour or everyday skills rather than obvious forgetfulness. A person who was always sociable may withdraw, or a person who was independent in personal care may start needing prompts.

Rule out treatable causes first

The most important message from the CNTW guide is that any treatable condition should be ruled out before assuming that a person has dementia. It explains that adults with Down syndrome are more susceptible to several conditions whose effects can look like dementia: vision problems, hearing loss, constipation, thyroid problems, urinary tract infections, depression, heart abnormalities and diabetes. The NHS adds that people with Down syndrome have a weakened immune system and are more vulnerable to serious infections such as pneumonia and flu, and that about half of children with Down syndrome are born with a heart condition. If a person's behaviour or abilities change, staff should therefore:

• ask for a full physical health review, including hearing, vision, thyroid function, infection screening and medicines review;
• check for pain and constipation, which can cause distress and behaviour change; a structured pain tool such as the Abbey Pain Scale can help when words are hard to find;
• consider depression and life events such as bereavement or a change in home or staff;
• ask about any new seizures, since seizures can be a sign of dementia in people with Down syndrome; see our guide to epilepsy awareness training.

Why baselines matter

A baseline is a record of what a person can do and how they usually behave, written when they are well. Without a baseline, it is very hard for clinicians to say what has changed. The CNTW guide recommends monitoring and documenting changes between appointments, and regular health checks and screening. A good baseline records daily living skills, memory and orientation, communication, mood, sleep, eating and drinking, mobility, and what the person enjoys. Review and update it at least yearly, and take a copy to every appointment. Where the person already has a learning disability health action plan, the baseline should sit alongside it.

Getting an assessment

Dementia in adults with Down syndrome needs specialist assessment, usually involving a learning disability psychiatry or psychology team, with input from nurses, therapists and the GP. Assessments should use tools designed for people with a learning disability, and should take account of the person's baseline. Staff should present the written baseline, a timeline of changes, and any information from family and previous services. They should also attend with the person, supporting them to understand what is happening. For general guidance on dementia that starts earlier than usual, see our guide to young-onset dementia.

Everyday support after a diagnosis

• Keep routines familiar. Consistent staff, places and timetables reduce confusion.
• Use accessible communication. Simple words, photographs, objects of reference and Makaton or other signs if the person already uses them.
• Keep skills going. Break tasks into steps, offer prompts, and avoid taking over too early.
• Plan for the environment. Good lighting, clear signage and a safe, uncluttered layout help.
• Respect choices. Involve the person in decisions as far as possible and follow the Mental Capacity Act where capacity is in question.
• Plan ahead. Talk about future care, end-of-life wishes and who knows the person best.

Training and legal duties

Staff supporting people with a learning disability need training that reflects the person's needs and rights. The principles in Oliver McGowan mandatory training apply to dementia care for people with Down syndrome too, especially listening to the person and their family and recognising how health problems present differently.

Frequently asked questions

Does every adult with Down syndrome develop dementia?

No. The risk is higher than in the general population and onset can be earlier, but not everyone is affected. Staff should avoid assuming that any change is dementia.

Who should be told about changes?

The GP, the learning disability team, family or advocates, and the person's care coordinator should all be informed, with the person's involvement and consent where possible.

What CPD helps staff?

Dementia awareness, learning disability training, recognising deterioration and pain assessment all help. Browse the Learnsignal CPD hub for healthcare compliance courses.

Sources: NHS, Down's syndrome: other health conditions; CNTW NHS Foundation Trust, Down's syndrome and dementia support guide. This article is general information, not clinical advice.