For Families and Carers : Mental Well Being

older couple with Down's syndrome

Mental Wellbeing

How can we support people with Down’s syndrome to have good mental health?

What exactly is good mental health?

So often, discussion around mental health tends to focus on mental health conditions, rather than what constitutes good mental health. According to the World Health Organisation, mental health is “a state of well-being in which the individual realizes his or her own abilities, can cope with the normal stresses of life, can work productively and fruitfully and is able to make a contribution to his or her community.”

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 developing poor mental health.

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.  Members of the London Down 2 Earth Group have consistently told us over the years how important family, friends and relationships are to them along with good support to make choices about what they want to do with their lives.

The relationship between physical and mental health

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.   People 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).

As with the rest of the population, prevention is better than cure so we need to continue highlighting the health conditions that are more common in people with Down’s syndrome.  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, in the same way as the rest of the population. Remember that they should have the chance to take part in national screening programmes (e.g. breast screening) and that anyone who is 14 years and older should have an annual health check with their GP. Further information about annual health checks here

Some practical tips

Here are some tips that can help you to foster good mental health 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 their unique interests and talents or relative strengths
  • Give them 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 healthy living guides here and our tips for weight management here
  • Create opportunities for them 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
  • Provide opportunities and support for making choices both big and small. We all want to feel that 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
  • Circles of Support can help with decision making; you can find out more about Circles of Support encouraging independence here
  • Create opportunities for them to feel they have accomplished something that is important to them
  • Listen to their hopes and dreams; these may sometimes be unrealistic so look for similar realistic opportunities that might fulfil their needs
  • Involve them in life planning
  • Have high, but realistic expectations; these will be different for each individual. 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, they want to feel that they are valued part of their communities. Information about finding out about local activities can be found here
  • Make sure they are getting a good night’s sleep. See our recent blog piece about sleep here
  • Prepare them 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) can be an early indicator that all is not well for that person.

Be realistic

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 health 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 experience signs of poor mental health, they are able to access professional support if they need it. If you do have concerns about the mental health and wellbeing of a person with Down’s syndrome, talk to your GP or community learning disability team.

Further information

This booklet contains information about growing up, developing independence, making choices and self-awareness (free download)

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)

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

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