Learning disability and dementia: signs to watch and getting an assessment

The reason for the higher risk with Down syndrome lies in the extra copy of chromosome 21. The Alzheimer's Society explains that it leads to a build-up of a protein which forms plaques on the brain, and those plaques are a feature of Alzheimer's disease. It also says that almost everyone with Down syndrome will develop some of these changes in the brain as they get older, but that not everyone goes on to be diagnosed with dementia. The risk is high, and it is still a risk rather than a certainty.

Because the risk rises from the forties onward, the signs can appear while the parents who have cared for decades are in their seventies or eighties themselves. That is one reason to put the groundwork below in place early, and Down syndrome in adulthood covers the other health changes that come with getting older. For everything else about support for an adult with a learning disability, the family guide to learning disability is the place to start, and the disability care pages cover the wider picture.

For people with a learning disability who do not have Down syndrome, the NHS England guide says the overall rate is similar to the rest of the population, with age as the strongest risk factor. The advice on this page about noticing change and ruling out other causes applies to everyone, whatever the cause of the learning disability.

The Alzheimer's Society recommends that every adult with Down syndrome is assessed by the time they are 30, to give a baseline that later assessments can be compared with. NICE guideline NG54 on mental health problems in people with learning disabilities says to complete a baseline assessment of adaptive behaviour with all adults with Down syndrome, and the NHS England guide for GPs suggests screening adults with Down syndrome over 40 regularly. If your son or daughter is older than 30 and has never had one, ask for it now.

The annual health check is the natural place to keep the baseline up to date. Anyone aged 14 or over on their GP's learning disability register can have one each year, and NICE says that at the check for an adult with Down syndrome, the GP should ask about any change in behaviour, any loss of skills including self-care, and a need for more prompting in the past few months. The annual health check explains how to get on the register and what to ask for.

Where the baseline is kept matters as much as having one. Ask for a copy, keep it with the person's health records at home, and mention it in their hospital passport so that a doctor who has never met them can see what is usual for them.

Two signs are more particular to Down syndrome. The Alzheimer's Society says that if a person with Down syndrome begins to have fits in later life, or has them more than usual, this could be a sign of dementia, and the NHS England guide adds that problems with swallowing and choking may appear early. If seizures start, epilepsy care at home covers what to put in place, and eating and swallowing in later dementia covers the swallowing assessment.

Keep the notes plain and dated. A line such as "Tuesday: could not remember how to make her tea, which she has done on her own for years" tells a GP more than "she seems more confused". Ask everyone who supports the person to add to the same record, including a day service, a college or a support worker, because they see different parts of the week.

NICE guideline NG97 on dementia says the GP should refer a person to a specialist diagnostic service once reversible causes, including delirium, depression, sight or hearing loss and some medicines, have been investigated and dementia is still suspected. The NHS page on diagnosing dementia describes the same order: a physical examination, blood and urine tests, and then a referral if nothing else explains the change.

Pain can also look like a change in behaviour. A person who cannot easily say that something hurts may show it through behaviour, sleep or a refusal to do something they used to enjoy. Writing down in the hospital passport how this person shows pain is one of the most useful things a family can do.

1. 1

   Book a longer GP appointment

   This week

   Say that you are worried about dementia and ask for a longer appointment as a reasonable adjustment. Take the baseline, your dated notes and someone who knows the person well.
2. 2

   Ask for the other causes to be checked

   First visit

   Blood tests including thyroid, a hearing and sight check, a medicines review, and questions about mood, sleep and anything that has changed at home.
3. 3

   Ask for a referral

   If the change is still unexplained

   To the community learning disability team or to the local memory service. Ask the GP which one covers people with a learning disability in your area.
4. 4

   The assessment itself

   Usually more than one visit

   The team talks to the person and to those who know them, and may use questionnaires written for people with a learning disability, such as the DLD, the DSDS or the DSQIID. Change over time is what counts, so they may want to see the person again.
5. 5

   The result and what follows

   After the diagnosis

   Ask what the diagnosis means for the person, what support the team offers, who to ring when things change, and whether any treatment would help.

The person should take part in the assessment as far as they can, with information in a form they understand. NICE NG96 asks professionals to explain the link between learning disability and dementia early, particularly to people with Down syndrome and their families, and to give printed information and the chance to talk it through with a professional. Getting a dementia diagnosis covers the general process, and the dementia care guides cover what follows. The Down's Syndrome Association publishes information and a workbook on ageing and dementia, and Mencap gives advice to families.

The home may need small changes as well: clearer lighting, fewer trip hazards, and signs or pictures on cupboards and doors. Making the home dementia-friendly covers the changes that help. Ask the council for a new assessment of the person's needs when things change, because the support agreed years ago may no longer be enough, and ask for a carer's assessment for whoever is caring now. The care needs assessment explains how to ask.

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A lasting power of attorney can only be made while the person has the mental capacity to make it, so if your son or daughter could understand one, now is the time to talk about it. Lasting power of attorney and dementia covers how it works, and making decisions for a grown-up son or daughter covers what happens where they cannot make one. The person can also say what matters to them in an advance statement: the people, food, music and routines they want kept. If you are a parent, this is also the point to look at your own plans, and when the parents can no longer cope sets out what to put in place.

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For someone who relies on routine and a familiar face, the choice of who supports them matters more as dementia progresses. PrimeCarers is an introductory service: we introduce self-employed carers and do not provide or manage care. The family, or the person themselves, chooses the carer, interviews them first, and agrees the hours and routine directly with them, and they can keep working with the same person for as long as it suits both of them. When you are ready, you can search for carers near you and compare their rates. Carers on PrimeCarers charge £18 to £25 an hour with our fee included, against £28 to £35 at an agency, and a council direct payment can be used for support the person chooses, as personal assistants and direct payments explains.

There is no way to search for carers by experience of learning disability or dementia. What a carer says about it is their own account on their profile, so ask at interview what they have done and for how long. Before a carer appears in a search we check their identity and right to work, confirm an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and interview them online. We do not check qualifications, training or references. Carers are insured while they work. If seizure medication or other clinical tasks become part of the day, training and delegation are arranged with the person's clinical team, and what carers are not allowed to do explains where the line sits.