For Families and Carers : Health and Well Being

Health and wellbeing

See the links in the menu on the right hand side of the page for information about specific health issues.

Supporting good physical health

We continue to raise awareness of the health conditions that are more common in people with Down’s syndrome via our Journal, social media and our monthly newsletter (for members). To this end, we have produced a selection of health resources including the Health Series and Healthy Living Guides.

It’s important that people with Down’s syndrome are supported by their families and support staff to access healthcare, as and when they need it.

Remember that people with Down’s syndrome should have the chance to take part in national screening programmes (e.g. breast screening) and that anyone who is 14 years and older can ask their GP for an annual health check with their GP. There is further information about Annual Health Checks here.

We have produced a Health Book for people with Down’s syndrome to use at their Annual Health Check and other health appointments. Find out more about the Health Book here.

Our DSActive team have created some nutrition factsheets, including tips for parents to support healthy eating and an easy read version.

For babies and children up to 18 years old, there is a schedule of basic minimum health checks in the insert for the Personal Child Health Record (PCHR). The insert is produced by the UK Down ’s Syndrome Medical Interest Group (UKDSMIG). Find more information about the PCHR here.

You can download easy read booklets about staying healthy, going to the GP and going to the chemist. The Having a Voice groups have helped us to develop these easy read resources.

Make sure you are aware of the legal framework, the Mental Capacity Act 2005, around making everyday decisions post 16 years of age and its relevance to healthcare.

You should always expect health professionals to take your concerns seriously.

We hear of cases, via our Helpline, of diagnostic overshadowing. This is where symptoms of poor health and/or behaviour changes are put down to the fact the person has Down’s syndrome rather than because they are unwell.

Don’t accept symptoms being explained away by the phrase ‘it’s because they have Down’s syndrome’.

You can call our Helpline (0333 1212 300) if you have any questions about health and healthcare.

The relationship between physical health and mental wellbeing

It may seem an obvious point but poor physical health can impact adversely on a person’s mental wellbeing.

People with Down’s syndrome may struggle to verbally express pain or illness and it stands to reason that if you are feeling unwell or in pain for a period of time, but find it hard to express this, you might then start to feel upset, anxious or have low moods.

Those around the person with Down’s syndrome may have to look for other non-verbal clues that indicate that a person is unwell (e.g. changes in mood, routine and behaviour).

Conversely, poor mental wellbeing may impact on someone’s ability to communicate ill health or to maintain their own physical wellbeing.

Mental wellbeing

So often, discussion around mental wellbeing tends to focus on mental health conditions, rather than what constitutes good mental health. Sarah Stewart-Brown, professor of public health at the University of Warwick and a wellbeing expert, describes mental wellbeing as follows:

“Feeling happy is a part of mental wellbeing. But it’s far from the whole. Feelings of contentment, enjoyment, confidence and engagement with the world are all a part of mental wellbeing. Self-esteem and self-confidence are, too. So is a feeling that you can do the things you want to do. And so are good relationships, which bring joy to you and those around you.”

In the past, mental health conditions may have been overlooked as a result of diagnostic overshadowing (e.g. ‘they are behaving like that because they have Down’s syndrome’ rather than a proper and thorough examination taking place).

Poor mental health is not inevitable for people with Down’s syndrome.

Many people with Down’s syndrome experience positive mental wellbeing and do not exhibit signs of poor mental health. However, there are certain factors that may make people with Down’s syndrome more susceptible to poorer mental health. Certain biological differences, as well as everyday stresses that people with Down’s syndrome may find harder to deal with, may make people with the condition more susceptible to mood, emotional and other mental health problems.  As we know this is the case, we can use this knowledge in a positive way to think about the environment around a person with Down’s syndrome and whether or not adjustments can be made to lessen the chance of that person becoming ill.

Developing positive self-esteem

Unsurprisingly, many of the things that contribute towards good mental health for people with Down’s syndrome are exactly the same as those for the general population. We all need to feel good about ourselves; this is no different for people with Down’s syndrome.  Understanding your condition according to individual ability, having positive role models with Down’s syndrome and having friends like yourself and friends who aren’t, will help boost self-esteem and self-worth.

We meet regularly in London and the South West with adults who belong to Having a Voice groups. The groups were set up to support adults with Down’s syndrome to have their say and to help us with our work. The groups have told us, over time and in different ways, the following things are important in their daily lives.

  • family, friends and relationships
  • good support
  • making choices about what we want to do with our lives.
  • having a job
  • having a social life
  • being listened to

An obvious point but one worth making; all of the things listed here, in combination and according to individual preference, support mental wellbeing and boost self esteem.

You can call our Helpline (0333 1212 300) if you have any questions about health and healthcare.

Supporting mental wellbeing – Some practical tips

Here are some tips that can help you to foster good mental wellbeing in someone with Down’s syndrome for whom you care and support:

Focus on the positives.
Change the focus from what the person can’t do to what they can.

Encourage unique interests and talents or relative strengths.

Give the person the opportunity and means to express how they are feeling.

Encourage a healthier lifestyle involving exercise and a balanced diet.
Take a look at our easy read ‘Staying Healthy’ resource here and our tips for weight management here.

Create opportunities for the person to become more independent according to their individual abilities and needs.
This process can start with simple self-help skills and later move on to daily living skills.
We have an easy read resource ‘Learning to be more independent’ here.

Provide opportunities and support for making choices both big and small.
We all want to feel we have choice and some control over our lives. Remember to strike a balance, too many choices all at once can be difficult for a person to cope with.
See our easy read resource ‘Making Choices’ here.

Circles of Support can help with decision making and supporting greater independence.
Find out more about Circles of Support here.

Create opportunities for the person to feel they have accomplished something that is important to them.

Listen to hopes and dreams.
These may sometimes be unrealistic so look for similar realistic opportunities that might fulfil the same needs.

Involve the person in life planning.
See our resource ‘Listen to Me – Growing up – thinking about being an adult 13+ Transition.

Have high, but realistic expectations.
These will be different for each person. Aim high but don’t put the person in a position where they are likely to fail.

Teach new information and skills so they do not have to, and do not, make mistakes.

Like you or me, people with Down’s syndrome want to feel that they are valued part of their communities.
Information about finding out about local activities can be found here.

Make sure the person is getting a good night’s sleep.
See our information about sleep here.

Prepare the person for expected life events and changes.

Keep an eye on self-talk.
Whilst self-talk can be a very helpful, self-soothing strategy for the person, an increase or change in how they talk to themselves or what they are saying (e.g. negative thoughts or anger directed by the person at themselves) may be an early indicator that all is not well for that person.

Be realistic about what you can do
This is a long list of tips and realistically, if you are a busy parent or paid supporter, it is not always going to be possible to proactively ensure that all of these things are happening in a person’s life. Sometimes people will experience poor mental wellbeing even if you have done everything you can to promote their mental wellness and it is important not to blame yourself for it. What is important is that if a person does show signs of poor mental wellbeing, they are able to access professional support if they need it. If you do have concerns about the mental wellbeing of a person with Down’s syndrome, talk to your GP or community learning disability team.

Our Health Series includes resources about depression and about bereavement that you can download from our website.

Don’t forget, you can call our Helpline (0333 1212 300) if you have any questions about health and healthcare.

Further information

  • Early Support – Information about Down’s syndrome
    This booklet contains information about growing up, developing independence, making choices and self-awareness (free download). Please note that any references to the law in this publication are likely to be incorrect as new legislation has been passed since it was last updated.
  • Feeling Down: Looking After My Mental Health
    The Foundation for People with Learning Disabilities has produced this guide for people with learning disabilities to help them look after their mental wellbeing (free download)
  • The Royal College of Psychiatrists website
    They have some useful information about learning disabilities and mental health
  • ‘Mental Wellness in Adults with Down Syndrome’ by Dennis McGuire and Brian Chicoine (Woodbine House, 2006 – available from online book sellers)
    This book clarifies what the common behavioural characteristics of people with Down’s syndrome are, how some could be mistaken for mental illness and what actual mental health problems occur more commonly in people with Down’s syndrome
Growing older

Life expectancy for people with Down’s syndrome has significantly improved over the last few decades and naturally this is something to be celebrated. There are, however, some additional risk factors for adults with Down’s syndrome in older age and increased vigilance to recognise signs of early-onset dementia, for example, are important.

Some health conditions more common in individuals with Down’s syndrome such as sensory impairments, thyroid conditions or reactions to stressful life events can sometimes mimic the signs of dementia and so it is important that an appropriate assessment is made to identify the cause of any decline in older age.

For more information or to discuss any concerns you might have about someone with Down’s syndrome who might be developing dementia please contact one of our Information Officers on 0333 12 12 300. There is further information on growing older with Down’s syndrome here which may also be of interest.

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