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Down Syndrome Person Centred Care & Support

Down syndrome is a genetic condition where a person is born with an extra chromosome. No two people with Down syndrome will be the same. Although they may have a mild to moderate intellectual disability, abilities vary from person to person.

Someone with Down syndrome still has the potential to achieve. Take Florence Garrett, gold medal-winning swimmer and advocate for people with the condition, or Madeline Stuart, an Australian model who has appeared at New York and Paris Fashion Weeks.

Although not everyone will achieve the same things as these two women, supporting someone with Down syndrome requires understanding their needs, aspirations, communication style and, ultimately, their right to lead a meaningful and fulfilling life.

In adult social care, there’s a risk that even with the best intentions, we focus on what a person cannot do easily rather than what they can achieve with the right support. It’s possible for someone to have a paid or voluntary job, live independently or semi-independently and actively enjoy activities in their community. Many people with Down syndrome enjoy the same activities as anyone else, including sports, crafts, socialising and making friends.

How common is it?

There are around 40,000 people in the UK diagnosed with Down syndrome, and around 1 in 1,000 babies are born with the condition every year in this country.

Is it always associated with a learning disability?

Most people with Down syndrome have some degree of intellectual disability, although this varies widely between individuals.

Do all people with Down syndrome have the same features?

People with Down syndrome resemble their own families as much as, or more than, they resemble one another. Some physical characteristics associated with Down syndrome include almond-shaped eyes, reduced growth, low muscle tone, a small mouth and small hands and feet. However, everyone is different.

Are there health problems linked to the condition?

Health issues associated with the condition include heart defects and breathing problems. Thyroid problems and Type 1 diabetes are also linked. Hypertension is rarer than in the general population. Low muscle tone is thought to contribute to hip instability in some cases, which can lead to arthritis and mobility problems.

Do people with Down syndrome have problems with speech?

Some people with Down syndrome experience speech difficulties, including stammers, rapid speech or difficulty pronouncing words. People often understand more than they are easily able to express verbally.

Hearing problems are also common and can result from infections or a build-up of fluid in the ears. Sight can be affected by conditions including squints, cataracts and glaucoma, with treatment or glasses helping in some cases.

Do people with Down syndrome live shorter lives?

In the 1980s, average life expectancy was around 25 years. Today, many people with Down syndrome live well into their 60s.

What about dementia?

People with Down syndrome have an increased risk of developing dementia as they age. Studies have found that more than half of people with the condition are affected by dementia by the age of 60.

Are people with Down syndrome always happy?

No more so than anyone else. People with Down syndrome experience the same range of emotions and moods as everyone else.

How can I support someone with Down syndrome?

Each person is unique, with their own personality, preferences and goals. The principles of supporting someone with Down syndrome are the same as for anyone else: getting to know them, respecting their individuality and providing person-centred support that helps them live the life they choose.