Support for people with Down syndrome: how exercise, physio and dietetics can help
On March 21, World Down Syndrome Day (WDSD) aims to raise awareness about people living with Down syndrome and advocate for their rights. In recognition of the day, the team at Active Ability take a look at Down syndrome, and how allied health therapies including physiotherapy, dietetics and exercise physiology can support people with the condition to achieve greater independence, good health and the best possible quality of life.
Understanding Down syndrome
Down syndrome is a genetic condition, which means that it starts at conception and continues throughout life. It is not a disease or an illness, and therefore it cannot be ‘cured’.
People living with Down syndrome are just like everybody else – they have particular tastes and preferences, a range of hobbies and interests, things they’re good at, and things they find more difficult to do.
People with Down syndrome can lead full, rich lives that include getting an education, finding meaningful work, and participating in their families and communities.
Down syndrome affects about 1 in every 1100 babies born in Australia each year[i]. People with Down syndrome have an extra chromosome 21[ii], so they have three copies of this chromosome instead of two. This is why Down syndrome is also known as trisomy 21, and why the 21/3 was chosen for WDSD.
People with Down syndrome usually have some level of developmental delay and intellectual disability (ID). They often need some extra support and help from various health professionals to achieve and maintain the best possible developmental outcomes, good health, and optimal function and independence.
Down syndrome and health
People with Down syndrome are also at higher risk for some health conditions[iii], including heart defects, coeliac disease, loose joints and lower immunity. And because Down syndrome is associated with intellectual disability, it also makes people with the condition vulnerable to a range of other health issues.
Down Syndrome Australia, in their March 2020 submission to the Disability Royal Commission Health Issues paper[iv], explain that, compared to the general population, people with intellectual disability (including Down syndrome) experience:
- more than twice the rate of avoidable deaths
- higher rates of physical and mental health conditions
- lower rates of preventative healthcare
- under-diagnosis of chronic health conditions, and
- a lack of active management of risk factors.
Many of these risk factors and health issues are treatable – or even preventable – with lifestyle measures such as a healthy diet, weight management, regular physical activity and timely review of any health concerns such as illness or injury.
This makes it important for people with Down syndrome to have ready access to health services that assist them to achieve and maintain physical and mental wellbeing.
However, a report by the University of New South Wales[v] points out that people with ID not only tend to have a poor health status, but they also face barriers to accessing “timely, affordable and appropriately equipped health services”. The mismatch between health needs and accessible services has a major impact.
At Active Ability, we focus on supporting people with intellectual disability to achieve optimal health, independence and quality of life.
We have no waiting lists or travel charges, so you can receive support that makes the best use of your NIDS funding, right when you need it.
Down syndrome and diet
As we noted above, people with Down syndrome are at a higher risk for developing some health conditions. Research has shown, for example, that people with intellectual disability have higher rates of the risk factors linked with cardiovascular diseases such as heart disease and stroke (known as ‘cardiometabolic’ risk factors) than the rest of the population[vi].
These risk factors include higher rates of obesity, polypharmacy (being on several medications), taking psychotropic medications, and lower rates of physical activity.
Furthermore, adolescents with Down Syndrome don’t go through the same rapid growth spurt as those in the general population and have a 10-15 per cent lower resting metabolic rate, which can predispose them to gaining weight.[vii]
A healthy diet that’s high in nutrients and low on empty calories is a key way to help combat the effects of these risk factors.
A qualified dietitian will work with you to:
- assess your dietary needs, including any preferences, allergies and health conditions that need to be taken into consideration
- create an eating plan to support optimal physical and mental wellbeing, including achieving a healthy weight
- support you, and your support people if relevant, with advice on grocery shopping and reading food labels
- find tasty alternatives to salty and sugary foods
- manage food allergies and intolerances
- eat for better mood.
Coeliac disease, diabetes and structural problems of the gut are also more common in people with Down syndrome[viii]. A dietitian can provide expert dietary interventions for managing these conditions.
Furthermore, some infants and young children with Down syndrome have difficulties with feeding and drinking. Parents of a child with Down Syndrome might enlist the help of a dietitian for concerns such as poor weight gain, weaning advice and feeding challenges.
Exercise and Down syndrome
Regular physical activity is important for everyone, as it’s associated with a wide range of physical, emotional, intellectual and social health benefits[ix].
Importantly, along with higher cardiometabolic risk factors, people with Down syndrome also tend to have lower aerobic capacity, peak heart rates, muscle strength, agility and balance than people in the general population[x].
For all these reasons, starting or maintaining an exercise program is vitally important for anyone with an intellectual disability such as Down syndrome.
Looking at things from the opposite perspective, studies have indicated that in people with Down syndrome, regular physical activity is beneficial for improving aerobic capacity and muscle strength[xi]. It can also help to prevent the processes that lead to damage of artery walls.
The right exercise program can help you to:
- lose weight or maintain a healthy weight
- develop greater strength and endurance
- improve your overall fitness and breathing capacity
- enhance your quality of life and mental health
- improve your balance and gait
- create opportunities for social interaction
- increase bone strength
- improve cardiometabolic risk factors.
It’s also worth noting that because people with Down syndrome are more prone to health conditions including heart defects, low thyroid function and low muscle tone, exercise may need to be tailored to suit. An accredited exercise physiologist can create a program that considers your unique health needs, goals and exercise preferences.
Types of exercise for people with Down syndrome
People with Down syndrome should aim to achieve the physical activity levels recommended for their age group under the Australian Physical Activity and Sedentary Behaviour or 24-Hour Movement Guidelines[xii].
This includes a mix of:
- moderate to vigorous aerobic activities, such as walking, swimming, cycling, boxing, dancing and rowing
- light physical activities, such as housework, gardening, or light aerobic exercises
- muscle and bone strengthening exercises, such as resistance training with bands, medicine balls, body weight or dumbbells.
An exercise physiologist might also prescribe specific exercises to address functional goals, such as balance training to improve your stability or functional lower limb strength and endurance training to improve your gait speed and walking endurance.
Exercises may be completed individually, or in a group setting to encourage socialisation and motivation. An exercise physiologist will always tailor a program to suit your goals, make sure it’s something you enjoy so it’s easier to stick with, and modify it as you make progress.
Physiotherapy and Down syndrome
A physiotherapist will often be involved in supporting someone with Down syndrome throughout their lifespan. Children with Down syndrome commonly have low muscle tone and balance problems, and many experience delays in reaching developmental milestones such as sitting, crawling, standing and walking[xiii].
Physiotherapy can help through an individualised assessment of your or your child’s needs and current level of function, and creating a program to address any identified challenges. For Down syndrome, common physiotherapy interventions include mobility assessments and treatment programs, sensory integration therapy, neurodevelopment treatment, and perceptual-motor therapy.
Physiotherapists also use exercise, manual therapy, and education to help people take control over their health, always with a goal of supporting them to become as independent as possible.
Training of support people is another important aspect of encouraging self-management and ensuring health-promoting activities are continued in the long term.
A tailored physiotherapy program can assist with improving:
- fine and gross motor skills
- sensory integration
- gait, balance and co-ordination
- recovery from illness or injury
- posture and balanced muscle development
- preventing or managing contractures.
Some final words about good health for people living with Down syndrome
The good news is that in Australia, people with Down syndrome are now living much healthier, longer lives than they have in the past. In fact, the life expectancy for people with Down syndrome has increased significantly over the last 50 years, and is now approximately 60 years of age.
However, a lot more needs to be done to ensure people living with Down syndrome have ready access to high-quality, evidence-based and tailored preventative health care.
At Active Ability, we are committed to supporting people with disability to achieve optimal independence, health and quality of life.
We are NDIS registered providers and offer mobile therapy services – with no waiting lists or travel charges – throughout Sydney, Wollongong and the Sunshine Coast.
[i] https://www.downsyndrome.org.au/about-down-syndrome/statistics/ Accessed 16.3.2021
[ii] https://www.downsyndrome.org.au/about-down-syndrome/what-is-down-syndrome/ Accessed 16.3.3021
[x] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6852506/ Accessed 3.3.2021
[xi] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6852506/ Accessed 3.3.2021
[xiii] https://www.physio-pedia.com/Down_Syndrome_(Trisomy_21) Accessed 3.3.2021