Transition to Adulthood with Downs Syndrome

While the transition from school into adulthood is daunting for any teenager, it is more complex for those with a learning disability such as Downs Syndrome. There is a lot of decisions to be made; where to live, where to work and meeting new people outside of school life for example. This means early planning is essential to make this transition easier.

During their time in school, Downs syndrome children have an Individualized Education Programme (IEP) which includes transition planning.¹ The main aim of this is to think of the future and the skills and aims required for when they become adults. Making a solid plan for the future with help from teachers and healthcare providers such as doctors can make life less stressful.

As the end of school life approaches, this can cause teenagers with Downs syndrome to have mood swings or not preform as well in school. This is due to school being more than a place to learn, it is a place where they can regularly socialise with a good support system eg) IEP. Leaving this structured environment can be hard to accept and get used to. However, the school or GP can provide additional help and support to overcome this.

Living Arrangements:

Depending on their individual needs, adults with Downs syndrome have a variety of options of where they would like to live. These include;

• Living at home with family.
• Supported Living – on their own with the correct support.
• Residential Care – in a home with others with disabilities.²

Jobs and Higher Education:

More adults with Downs syndrome are going onto further education such as college and university, while others are getting jobs. For those that decide to go straight into the workplace, there is three main type of jobs they can look for with the option of Volunteering. These are:

• Competitive – goals can be reached with limited job support.
• Supported – the same as competitive only with long-term or ongoing support to be successful. This is the most common type of job.
• Sheltered – a setting where people with disabilities can attend on a daily basis and carry out subcontract work eg) assembling packaged goods.
• Volunteer – for those who want to gain additional job training.³

Relationships and Social Well – Being:

Quality of life is considered a crucial component to the well-being of patients with Downs syndrome.⁴ The strength of quality care through stable social and psychological interactions has built a framework for a positive well-being for patients with Downs syndrome, improving their quality of life.⁵ This means that although working is important, it is essential for people with Down syndrome to take part in sport, hobbies and other interests they may have.

People with Downs syndrome also like to date, form loving relationships and some even get married. However, they may need additional support when it comes to things like birth control and STD’s. Some couples may even consider starting a family although the fertility rate for men and woman with Downs syndrome tends to be lower. This doesn’t mean they can’t have children, but it does tend to make it more difficult. It is also worth noting that if one partner in a couple has Downs Syndrome, there is a 1 in 2 chance of their children having Downs syndrome too. There is also an increased risk of miscarriage and premature birth within women with Downs syndrome. In addition to this, becoming a new parent is hard for anyone, and even more so for people with Down syndrome, so extra help, support and specialist guidance will be usually be required in order to cope with the demands of a new baby.⁶

Health Issues:

Adults with Down Syndrome are now living longer – the average life expectancy is now between 50 and 60 years old with some people even reaching their 70s. As they get older, people with Down syndrome are more likely to suffer from mental health issues, like depression. This can be triggered by a variety of reasons, most commonly loss, like the death of a parent. In other instances, there are medical reasons.

In comparison to the general population there is an increased risk with early ageing and age-related health problems at an earlier stage of life. This includes dementia, memory loss, and changes in personality that are similar traits of Alzheimer’s disease.

• Depression

Depression is just as common in the general population in comparison to those with Down Syndrome and both are affected in exactly the same way. It is the most commonly diagnosed mental health issue for those with Down Syndrome. Depression is much more than feeling sad or low for a short while. Symptoms usually persist for at least two weeks, and often much longer. Dr Kerim Munir (Boston Children’s Hospital) has written that children and adults with Downs syndrome and symptoms of depression often lose the ability to enjoy many activities they used to love, they lose skills and they become very withdrawn. Depression may have appeared relatively quick or may have developed gradually over the course of many months.⁷

When mental health doctors meet with a patient to provide a diagnosis and treatment plan, they rely on standard diagnostic criteria which has been developed by the American Psychiatric Association.⁸ Many of these criteria are based on the patient being able to self- report subjective feelings eg) feelings of worthlessness. This means diagnosing depression in a person with Downs Syndrome is extremely complicated, due to limited verbal communication and conceptual thinking which affect the individual’s participation in the psychiatric interview.⁹ In addition to this, diagnosis may be further complicated by medical conditions such as hypothyroidism, vitamin B12 deficiency and Alzheimer’s dementia, all of which have symptoms that can mimic depression.¹⁰

Treatment for depression includes;

• Counselling
• Medication
• Treatment of any underlying associated medical conditions
• Encouraging exercise and getting involved in activities that help build self-esteem

• Dementia

Chromosome 21 carries the APP gene, which produces a specific protein called Amyloid Precursor Protein (APP). An excess amount of this protein causes a buildup of protein clumps (beta-amyloid plaques) in the brain.¹¹ As someone with Down Syndrome has an extra copy of chromosome 21, by the age of 40 they will have these plaques, and as a result, there is increased problems with how the brain cells function and therefore an increased risk of dementia.

It is important to note that not everyone with Down Syndrome will develop Alzheimer’s. However, for those that do, the signs and symptoms usual start to show around 40 – 50 years old. The most common early signs are changes in overall function, personality and behaviour compared to the usual symptoms of memory loss and forgetfulness. Examples of these signs include;

• Reduced interest in being sociable, conversing or expressing thoughts.

• Decreased enthusiasm for usual activities.
• Decline in ability to pay attention.
• Sadness, fearfulness or anxiety.
• Irritability, uncooperativeness or aggression.¹²

Diagnosis of dementia is difficult in a person with down syndrome due to the challenges associated with an intellectual learning disability. Diagnosis usually takes a long time and can only be confirmed after consideration of a number of factors, including; detailed history, performance on assessments over an extended period of time and exclusion of all other possible reasons for change.¹³

Although there is no cure for Alzheimer’s dementia, drugs such as donepezil (an anti-cholinesterase inhibitors) have been shown to be effective in alleviating symptoms and slowing progression. 

Other health issues adults with Down syndrome tend to face include:

• Being overweight
• Diabetes
• Cataracts and other problems seeing
• Early menopause
• High cholesterol

To help someone with Down syndrome remain healthy as they grow older, it is vital ensure they get regular check-ups and stay on top of any medical issues they have.¹⁴

1. https://www.webmd.com/a-to-z-guides/tips-adults-down-syndrome#1
2. https://www.downs-syndrome.org.uk/for-families-and-carers/supported-living-2/
3. https://www.ndss.org/resources/employment-and-volunteer-work/
4. Goodman MJ, Brixner DI. New therapies for treating Down syndrome require quality of life measurements. Am J Med Genet A. 2013 Apr;161A(4):639-41
5. Felce D, Perry J. Quality of life: the scope of the term and its breadth of measurement. In: Brown RI, editor. Quality of life for people with disabilities: models, research and practice. Cheltenham (UK): Stanley Thornes; 1997. p. 56-71.
6. https://www.nhs.uk/conditions/downs-syndrome/living-with/
7. https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/getting-older/alzheimers-disease/
8. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition. Washington, DC: American Psychiatric Association, 1995.
9. https://www.advocatehealth.com/assets/documents/subsites/luth/downsyndrome/mcguir.pdf
10. Szymanski LS. Diagnosis of mental disorders in retarded persons. In Stark JA, Menolascino FJ, Albarelli MH, Grey VC (eds), Mental Retardation and Mental Health: Classification, Diagnosis, Treatment Services. New York: Springer Verlag, 1988.
11. https://www.nia.nih.gov/health/alzheimers-disease-people-down-syndrome
12. https://www.alz.org/alzheimers-dementia/what-is-dementia/types-of-dementia/down-syndrome
13. https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/getting-older/alzheimers-disease/
14. https://www.webmd.com/a-to-z-guides/tips-adults-down-syndrome#3