Supporting the physical and mental wellbeing of people with Down’s syndrome

By Stuart Mills, Information Officer, Down’s Syndrome Association

Mental wellbeing

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.”

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.

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.

This is a long list 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.

Supporting physical wellbeing

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.

We continue to raise awareness of the health conditions that are more common in people with Down’s syndrome. To this end, you will find lots of information about health issues, including the DSA’s Health Series, on our website.

Remember, 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 on our website.

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). You can find more information about the PCHR insert on our website.

You will find easy read booklets about going to the GP and going to the chemist here.

The Having a Voice groups have been involved in the development of all easy read resources referred to in this blog.

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.

A final note

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’.