Top Priorities in the Health Support of People with Down syndrome

Physicians

Try to develop a consistent, long-term relationship with a physician or group of doctors who will take interest in the young person with Down syndrome. If the person with Down syndrome requires specialist care, it is good to keep the specialists’ contact details on hand for years, in case follow up care or additional referrals are required.

Parents / Guardians’ Expertise

Educate yourself and be ready appropriately deploy your expertise. Physicians may not always have the time to stay current about all the disabilities they encounter, so your knowledge, administered gently, can be influential.

Health Records

Even a cheap notebook, used faithfully, can be an important tool in the maintenance of a person’s health. Days, weeks and months melt into one another, and a question like, “When did she first start complaining that her back hurt?” can be bewildering without scribbled notes to refer to. The health record should also be used to record physicians’ suggestions for future action, i.e. “Let’s discuss a sleep study next time you visit”, which are easily forgotten without concrete reminders.

Food and Nutrition

The early establishment of good habits around food and nutrition is essential to the health of people with Down syndrome. Because of food sensitivities, they may restrict their own diets, but the other possibility is that food may take on too much importance in their lives. Food rewards should never be allowed, fast food should not be linked to healthier activities (“After swimming, we always go for burgers!”), and where possible, diets should be as balanced as possible. Because obesity is such a problem for people with Down syndrome, early efforts to avoid it are particularly important.

Movement and Exercise

People with Down syndrome tend to have lower muscle tone than many members of the general population. From the toddler years, they may avoid walking and other physical activities, and efforts to incorporate movement and exercise into their lives may be resisted. It is important to experiment until they identify activities they truly enjoy (circus school? snowshoeing? walking the dog?). Independent living can make it more challenging to get motivated to move and exercise – planning for this in advance can head off later health issues.

Hygiene, Grooming and Self Care

People with Down syndrome are often lovingly cared for by others, but they should also develop the ability to keep their own bodies, clothes and belongings clean and healthy. When they present themselves well, their life options open up and social connections grow, so hygiene, grooming and self care are actually integral to their overall health.

Teeth, Eyes and Ears

The development of early good habits, along with vigilance and appropriately timed doctors’ appointments can mean that these vulnerabilities, which very often accompany Down syndrome, can be managed without undue effort.

Serious Illness

While no one wants to imagine any loved one becoming sick, it is important to know that the symptoms of serious illnesses are the same for people with Down syndrome as they are for other people. If parents or guardians notice worrying signs, or if the people with Down syndrome describe symptoms, these can be reliably reported to and followed up on by a medical team, so that appropriate treatment can be administered in a timely fashion.

Mental Health

Anyone can experience a dip in their mental health, and people with Down syndrome may become mentally unhealthy in reaction to life changes, loneliness, biochemical disruptions or any number of other factors. These situations can and should receive immediate attention, and there are many reports of promising therapeutic options for people with Down syndrome in the scientific literature.

Physicians

Few people are fortunate to have the same doctor or collection of doctors for their whole lives. As people with Down syndrome age, they may require a change of medical personnel as their physicians retire or move. Addressing the need for a new physician or team of physicians is difficult but necessary if the person with Down syndrome is to receive uninterrupted and consistent care.

Parents / Guardians’ Expertise

Every family is different, but often parents and guardians  have a greater understanding of the health situation of the person with Down  syndrome than siblings, relatives, or concerned friends. Deciding when to transfer the parents’/guardians’ accumulated knowledge and oversight responsibility to the next generation of caregivers is a sensitive but important task. Ideally, the transfer would be done gradually and in a detailed manner, so that the full picture of the health status of the person with Down syndrome can be communicated. Parents’ and guardians’ insights (“He told me once he’d like to take up golf”) and hunches (“I’ve been worrying about  her varicose veins”) are also significant.  

Health Records

When the responsibility for supporting the health of a person with Down syndrome is transferred to the next generation of carers,  access to their health records should also be shared. These informal records are more difficult to maintain when the person with Down syndrome lives in a different location from the newly responsible family member or guardian, but the importance of having a clear picture of their evolving health cannot be overstated.  

Food and Nutrition

As they age, people with Down syndrome can fall into  “grooves” of behaviour which can enhance or detract from their health. When their less healthy “grooves” are rigidly embraced (“I always meet my friends at Tim Horton’s”), it can have negative food and nutrition impacts. Attempts to continue to expand healthy food choices (“Try this kiwi: it’s  delicious!”) and shape positive food behaviours (“Let’s share a sub”) must continue. If weight gain comes on suddenly, the circumstances that contributed to it can be addressed and altered. Even modest weight losses can have significant  positive health effects.

Movement and Exercise

A recent study from Arizona State University affirmed that physical activity is linked to the improvement of cognitive functioning in persons with Down syndrome.[1] This correlation may take on extra importance as people age and encounter other risk factors. It is good to remember that people with Down syndrome can be accommodated in community movement and exercise opportunities, such as Tai Chi classes and walking groups. Continuing with exercise options (i.e., Special Olympics) and searching out new ones (i.e., Aquafit) are good complementary strategies.

Hygiene, Grooming and Self Care

As people with Down syndrome move into new, more independent living opportunities, it can become more difficult for them to maintain their health, grooming and self care standards. Even going to bed at an appropriate hour can be challenging without parental reminders. It is important to set up new routines (“The alarm on my iPad tells me to start getting ready for bed”), and sometimes it is helpful when services can be combined (“When I get my hair cut, they also trim my fingernails”).

Teeth, Eyes and Ears

It happens to us all as we get older: our glasses prescriptions, hearing aid requirements and dental health status can change. But in the case of people with Down syndrome, these changes won’t be noted if they are not monitored routinely. It can also be difficult to get attentive service when one is receiving only modest benefits from provincial health  schemes. The people who are supporting people with Down syndrome should be vigilant to the possibility that they may  be offered only the cheapest options in these areas, and that their guardians may need to push for more comprehensive coverage.

Serious Illness

The chances of encountering serious illness grow with advancing age, and this is a sobering fact to deal with. People with Down syndrome are living longer, healthier lives than at any time in history and the improvement in their collective health status has been dramatic and exciting. Nevertheless, they are vulnerable to an assortment of cardiac, pulmonary and chronic conditions (i.e., diabetes and arthritis) that have the potential to reduce  their enjoyment and quality of life.  Early detection and treatment of these illnesses is important, and the guardians and friends of people with Down syndrome can contribute to this by their ongoing awareness of health changes, maintenance of accurate informal health records and support to attend health appointments. The spectre of Alzheimer’s haunts this group, and monitoring for the condition, for most people with Down syndrome, can begin as early as their late 30’s.

Mental Health

 Loneliness, grief and the narrowing of social options are factors that can negatively affect the mental health of people with Down  syndrome. There are numerous examples of wonderful interventions which successfully address some of these issues, such as the Intergenerational Choir Project in London, Ontario which is a cooperative effort of Medway High School, the Alzheimers’ Society and the  Sisters of St. Joseph. Innovative work is being done in this sector, and your geographical area may offer excellent  supports. If not, this may be an opportunity to start a much-needed project to support the mental health of  adults with Down syndrome in the second half of their lives.