The short answer
- Some checks are needed every yearAn annual health check with the GP, a thyroid blood test and an eye test with an optician, with hearing tested every year from 35.
- A change is a reason to look for a causeLost skills, low mood or a change in behaviour can come from hearing, sight, the thyroid or poor sleep, and they should never be put down to Down's syndrome alone.
- Ageing and dementia can come earlierA baseline assessment by the age of 30 gives the GP something to compare against later, so that a later change can be recognised early.
- Plan while you can do it togetherBring another regular person into your son or daughter's week now, and write down what only you know.
This page is written for the family, and for the adult with Down's syndrome if they are reading it. The NHS and the Down's Syndrome Association write Down's syndrome with an apostrophe, and the law, the Down Syndrome Act 2022, writes it without. Both mean the same thing.
Health to watch
The health conditions that are more common in adult life
Down's syndrome is caused by an extra copy of chromosome 21, and it comes with some level of learning disability. It also makes a handful of health conditions more likely. None of them is certain, and most can be treated once somebody notices them.
Adults with Down's syndrome do not always say when something hurts or has changed, so the family and anyone who supports them are often the first to see it. The NHS page on other health conditions linked to Down's syndrome and the Down's Syndrome Association's health pages cover each one in more depth. These are the ones to know about. If you are new to this part of the site, the family guide to learning disability covers the wider picture.
What to know about, in plain words
- Underactive thyroid
- Common in Down's syndrome. It causes tiredness, weight gain, dry skin and feeling cold, which are easy to mistake for low mood or ageing. A blood test finds it, and a daily tablet treats it.
- The heart
- About half of children with Down's syndrome are born with a heart condition. Problems can also appear later, including in adults who had surgery as children. Breathlessness, tiredness, dizziness, fainting or chest pain need a doctor.
- Hearing
- Ear wax that blocks the ear is very common, and hearing loss with age tends to come earlier than usual. Poor hearing can look like confusion or not paying attention.
- Eyesight
- The Down's Syndrome Association says about six in ten people with Down's syndrome need glasses. Sight can change without the person being able to say so.
- Sleep and breathing
- At least half of people with Down's syndrome have difficulties with sleep. Loud snoring, pauses in breathing, or waking tired can mean sleep apnoea, which the NHS can treat.
- Weight and diabetes
- Weight can be harder to manage. Type 1 diabetes is more common, and type 2 becomes more likely with age and weight. Tell the GP about thirst, tiredness or needing the toilet more often.
- Epilepsy
- Around one in ten people with Down's syndrome develop epilepsy at some point, compared with around one in a hundred without it. Seizures need a medical assessment at any age.
- The neck
- Neck instability is more common. See a doctor about a change in walking, clumsier hands, or difficulty turning or nodding the head.
- Mood
- Depression is at least as common as in anyone else and can look like withdrawal or lost skills. The thyroid, sleep apnoea, coeliac disease, low vitamin B12, and hearing or sight loss can all contribute.
Checklist by age
A health checklist for each stage of adult life
The regular checks stay the same through adult life. What changes is what to look out for between them. The checklist below puts both on one page, so you can print it and take it to the GP.
Every year, at every age
These are the regular checks. They carry on through every stage below.
Annual health check with the GP
Free from age 14 for anyone on the GP learning disability register.
Thyroid blood test
Every year for life, or more often if the doctor wants.
Full eye test with an optician
Every year for adults with Down's syndrome, as well as the GP check.
Hearing test
Every two years, then every year from the age of 35.
- 20s
In the twenties
Leaving school, and perhaps leaving home. Routines change, and some health problems show first as a change in mood or behaviour.
Weight and activity
Weight can go up after moving out of the family home. A regular routine of meals and activity helps.
Snoring, or stopping breathing in sleep
With tiredness in the day, it can mean sleep apnoea. Ask the GP about a sleep study.
Lost skills or withdrawal
Ask the GP to look for a cause, such as depression, thyroid or hearing, before anything is put down to Down's syndrome.
The heart
Ask whether heart follow-up from childhood should continue. Breathlessness, dizziness or chest pain need a doctor.
Seizures
Epilepsy can start in the teens or early adult years and needs a medical assessment.
- 30s and 40s
In the thirties and forties
The years to write down how things are now, so that any change later can be measured against it.
A baseline assessment by 30
A record of memory, skills and daily routine while things are settled. Ask the GP or the learning disability team.
Hearing every year from 35
Hearing loss with age often comes earlier. Ear wax is common and easy to treat.
Bones, joints and menopause
Osteoporosis, arthritis and the menopause can come earlier. Ask about bone health at the health check.
Blood sugar
Type 2 diabetes becomes more likely with age and weight. Thirst and tiredness can be early signs.
- 50s and on
From the fifties
Ageing tends to come earlier, and the risk of dementia rises. Most changes still deserve a proper look before anyone assumes the cause.
Changes in personality or behaviour
Often the first sign of dementia, before memory. Check hearing, sight, thyroid, mood and sleep first.
New seizures
Seizures starting in later life, or becoming more frequent, can be a sign of dementia. Tell the GP.
A memory assessment
Compared against the baseline. The GP can refer to the community learning disability team.
The support around them
Parents are older too. Review the care plan and your own carer's assessment.
Keep a short note of anything you notice between checks: the date, what changed, and anything that seemed to set it off. Write it with your son or daughter where you can, in their words. A note like that carries weight in a ten-minute appointment, and it becomes part of the record that tells a doctor what is normal for them. If a seizure plan becomes part of the week, epilepsy care at home explains who can give rescue medication and how they are trained.
The annual health check
The annual health check, and how to get the most from it
Anyone aged 14 or over who is on their GP's learning disability register can have a free health check once a year. It is the main way the checks in the list above get done, and it only happens if the person is on the register.
The NHS describes the check on its annual health checks page: weight, heart rate and blood pressure, blood or urine tests, a review of medicines and vaccinations, and questions about things that are more common with a learning disability. For Down's syndrome that should include the thyroid, the heart, hearing and sight. Our guide to the annual health check covers the register and what to do if the practice has not been in touch.
Before, during and after the appointment
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Before
During
After
A hospital passport is a short document that goes into hospital with the person and tells staff how they communicate, how they show pain, and what they need. Hospital passports and hospital stays explains how to write one and what to ask for on the ward.
Ageing and dementia
Ageing earlier, and the higher risk of dementia
Adults with Down's syndrome tend to show some signs of ageing earlier than other people, such as hearing loss, thinner bones and an earlier menopause. The largest of these changes is a higher risk of dementia than in the rest of the population.
The extra copy of chromosome 21 leads to a build-up of a protein that forms plaques in the brain, which is the change seen in Alzheimer's disease. Alzheimer's Society says that about two in three people with Down's syndrome over the age of 60 develop dementia, usually Alzheimer's disease. That also means it is not certain, and the age at which it starts varies from one person to another.
Dementia can look different in someone with Down's syndrome. Alzheimer's Society says the first signs are often changes in behaviour or personality rather than memory: less willing to cooperate, more stubborn or irritable, or withdrawing from people. Memory problems can be missed because short-term memory may already be harder. Seizures that start in later life, or become more frequent, can also be a sign.
The difficulty for families is that several treatable conditions look the same. Before anyone talks about dementia, these should be checked.
| How it can look | What to ask for | |
|---|---|---|
| Hearing loss | Not answering, not following instructions, seeming confused or withdrawn | A hearing test, and the ears checked for wax |
| Changes in sight | Trips and bumps, reluctance on stairs or in unfamiliar places, giving up hobbies | A full eye test with an optician |
| Underactive thyroid | Slowing down, tiredness, low mood, weight gain | A thyroid blood test, even if one was done this year |
| Depression or grief | Losing interest, losing skills, sleeping badly, withdrawing | A mental health assessment, through the GP or the community learning disability team |
| Poor sleep | Daytime sleepiness, irritability, poor concentration | A sleep assessment for sleep apnoea |
Hearing loss
- How it can look
- Not answering, not following instructions, seeming confused or withdrawn
- What to ask for
- A hearing test, and the ears checked for wax
Changes in sight
- How it can look
- Trips and bumps, reluctance on stairs or in unfamiliar places, giving up hobbies
- What to ask for
- A full eye test with an optician
Underactive thyroid
- How it can look
- Slowing down, tiredness, low mood, weight gain
- What to ask for
- A thyroid blood test, even if one was done this year
Depression or grief
- How it can look
- Losing interest, losing skills, sleeping badly, withdrawing
- What to ask for
- A mental health assessment, through the GP or the community learning disability team
Poor sleep
- How it can look
- Daytime sleepiness, irritability, poor concentration
- What to ask for
- A sleep assessment for sleep apnoea
From Alzheimer's Society and the Down's Syndrome Association. A baseline assessment made by the age of 30 is what later changes are measured against.
This is why Alzheimer's Society and the draft statutory guidance under the Down Syndrome Act both recommend a baseline assessment by the age of 30: a record of the person's memory, skills and daily life while things are settled. If a change comes years later, it can be measured against the record rather than against somebody's memory of how things used to be. The Down's Syndrome Association has resources on ageing and dementia, and learning disability and dementia covers diagnosis, support at home, and how routines can be adapted as needs change.
Work, home and friends
Independence: work, a home of their own and relationships
Adult life with Down's syndrome can include a job, a place of one's own, friends and a partner. The support needed varies widely between people, and the aim is the same as for anyone: the life the person wants, with help for the parts they find hard.
Work and volunteering
Paid jobs, training, a job coach
Where to live
Family home, own tenancy, shared house
Friends and relationships
Their own choices
Support at home
Prompting rather than doing
The NHS page on support for adults with Down's syndrome lists the everyday things an adult might want help with, such as cooking, cleaning, shopping and getting to appointments, and says that help can come from family, friends, carers or personal assistants. The Down's Syndrome Association runs a helpline and has advice on health, work and getting active.
Decisions belong to the adult as far as they can make them. The Mental Capacity Act starts from the assumption that a person can decide, and a learning disability on its own says nothing about whether they can make a particular choice. Being a parent does not give you legal authority to decide for a grown-up son or daughter. Making decisions for a grown-up son or daughter explains what does.
Planning ahead
Planning ahead as you get older
The draft statutory guidance under the Down Syndrome Act 2022 notes that a growing number of people with Down's syndrome are expected to outlive their parents. Planning for that is easier while you can do it together, and while there is time to let new people settle in.
If you have cared for your son or daughter for decades, the thought of handing any of it over is hard. The larger decisions, such as where they might live, wills and trusts, and the role of brothers and sisters, are covered in when you can no longer be your son or daughter's carer. The steps below can start this year.
- 1
Ask the council for both assessments
FreeYour son or daughter has a right to a Care Act needs assessment of their own, and each parent who provides care can ask for a carer's assessment. Ask for the care you give now to be written down, so the council knows the size of the gap before it opens. - 2
Bring in another regular person now
A few hours a weekSomeone who gets to know your son or daughter while you are still there learns their routine, how they communicate and what a bad day looks like. Start with something they enjoy rather than a task they resent. - 3
Write down what only you know
Over a few weeksTheir health history, medicines, the baseline assessment, how they show pain, what calms them, and the names of every professional involved. Write it with them, in their words where you can. - 4
Keep the health routine going
Every yearPut the annual health check and the yearly tests in a shared calendar, so they carry on if you are unwell or unable to go.
Choosing someone to support themSection titled Choosing%20someone%20to%20support%20them
When your son or daughter is ready for a regular support worker, you can search for carers near you and compare their rates, read profiles together, and message the people who sound right. Your son or daughter should be at the interview and have the final say where they can. Because the family chooses the carer and agrees the hours and routine with them directly, the same person can keep coming for as long as it suits both sides, which matters to someone who relies on a familiar face.
PrimeCarers is an introductory service. We introduce self-employed carers and do not provide, arrange or manage care. Before a carer's profile appears we carry out an ID check, a right to work check, an enhanced DBS check (or PVG in Scotland, Access NI in Northern Ireland) issued within the last 18 months, and an online interview. Carers are insured while they work. We do not check qualifications, training or references, and there is no way to search for carers by experience with Down's syndrome or learning disability. What a carer says about that experience is their own account on their profile, so ask them what they have done, for how long and with whom. Questions to ask at interview has a list to work from.
Questions
Questions families ask about Down's syndrome in adulthood
An annual health check with the GP from the age of 14, a thyroid blood test every year, a full eye test with an optician every year, and a hearing test every two years, then every year from 35. Alzheimer's Society and the draft guidance under the Down Syndrome Act also recommend a baseline assessment of memory and skills by the age of 30.
No. The risk is much higher than for other people, and Alzheimer's Society says about two in three people with Down's syndrome over 60 develop dementia, but it is not certain and the age it starts varies. Many changes that look like dementia turn out to be hearing loss, sight problems, an underactive thyroid, depression or poor sleep, and those are treatable.
There are many possible reasons, and the Down's Syndrome Association says a change should never be put down to Down's syndrome alone. Pain, hearing or sight loss, an underactive thyroid, poor sleep, depression, or a change at home such as a friend moving away can all show up as behaviour. Ask the GP to look for a cause, and bring a note of when the change started and what you have seen.
Both are used and they mean the same thing. The NHS and the Down's Syndrome Association mostly write Down's syndrome, and the Down Syndrome Act 2022 writes it without the apostrophe.
Carers can, and some describe that kind of experience on their profile, but we do not check training or qualifications, and there is no way to search by that experience. Read profiles with your son or daughter, interview the people who sound right, and ask what they have done before. Every carer has an ID check, a right to work check, an enhanced DBS check issued within the last 18 months, and an online interview before their profile appears.
The council should reassess your son or daughter's needs, and it goes more smoothly if it already knows the family and another regular person already knows them. Ask for a needs assessment and a carer's assessment now, and read planning for when parents can no longer care for the legal and housing side.