Health Challenges for Aging Persons with Down Syndrome
I
t’s no secret that individuals with Down Syndrome are an absolute delight to be around. Because they are such amazing persons, it’s especially distressing for family members and caregivers to witness their decline in physical and cognitive functioning as they age.
It can feel isolating when previous services that were in place no longer provide services. Family physicians may feel ill-equipped to deal with the health problems individuals with developmental disabilities face as they age as they present differently than the rest of the population. The Down Syndrome Clinic in Edmonton, Alberta does not see clients past the age of 20. There are a variety of pediatric programs, but very few programs for seniors with Down Syndrome. Waiting to see a neurologist may take several months, and a physiatrist is even longer.
Family and caregivers may seem overwhelmed with the rapid deterioration in physical health and mental processing in persons with Down Syndrome who are aging. Individuals with Down Syndrome often acquire a rapidly-progressing form of dementia as early as their 40s and 50s. In a matter of months, some individuals are no longer able to follow simple instructions and require assistance for basic activities such as eating and walking.
To help family members and caregivers know where to turn for resources, this article focuses on three main challenges faced by persons with Down Syndrome as they age: 1) Advocating for appropriate physician assessment and investigation, 2) swallowing difficulties (dysphagia), and 3) mobility issues.
Advocating for Appropriate Medical Treatment of Health Conditions
It is important to remember that a gradual decline in cognitive function and mobility is a part of the aging process for persons with Down Syndrome. A sudden onset of an altered level of understanding, inability to follow instructions, changes in speech, inability to urinate, inability to get out of bed, or inability to walk is not. These instant changes are medical emergencies, and the individual needs to be assessed by a physician as soon as possible. The individual will need blood work and a medication review. A CAT scan may also be helpful in ruling out any serious acute medical issues. Be sure to emphasize to the physician that this is not normal behavior for the individual, and that the symptoms happened suddenly.
Even if the individual does not have any acute medical problems, it is important that the individual is seen by their family physician for yearly blood work and medication reviews.
Dysphagia
As individuals with Down Syndrome age, it is important to be vigilant for swallowing difficulties. As the individual ages, muscles get weaker, and they are likely to develop a swallowing impairment. Health professionals are very concerned about aspiration. Aspiration means food and liquid are going into the airway and down to the lungs. Individuals may have difficulty sealing off their airway from liquids and food during the swallow. A huge red flag for a swallowing problem is a history of pneumonia. If you observe anything like coughing/choking during meals, wet or gurgling voice when speaking, tears or a red face when eating, or avoidance of foods once previously enjoyed, request a clinical dysphagia assessment. This will be done by a local occupational therapist (OT), registered dietician (RD), or speech language pathologist (SLP).
The health care professional will perform an oral-mechanism exam of the individual’s anatomical structures to determine strength, sensation, and abnormalities. The healthcare professional may provide diet or texture/fluid modifications, compensatory strategies, or exercises to improve swallowing. This assessment can be done as an outpatient (requiring a physician’s referral), in hospital, or in the individual’s home as a service provided by home care. If the individual needs to be seen at home, they will need to be registered for home care but will not require a physician referral. Contact your local health centre with questions.
It is also important to note that sometimes individuals aspirate silently. This means that there are no visible warning signs, but the individual may have a history of pneumonia. If this is the case, the individual will need to be seen by the local dysphagia team for a Video Fluoroscopy Swallowing Study (VFSS). This determines the exact nature of the impairment and which strategies are effective. Essentially, the individual will have X-ray video taken of their swallow while they try a variety of fluids and textures made visible with barium. If the individual cannot follow directions or becomes very anxious in the X-ray suite, they are not appropriate for this procedure. Physicians or community dysphagia therapists can refer to this service.
Mobility Issues
Much like any person with dementia, an individual with Down Syndrome who is aging will gradually lose function of their mobility. When the individual begins to have difficulty doing transfers (such as getting in and out of the tub, on and off the toilet, in and out of bed, etc.) it is crucial to connect with your local home care occupational therapist (OT) and physical therapist (PT). The PT will recommend exercises to keep the individual as mobile as possible for as long as possible. The OT may recommend adaptive devices for eating (such as special utensils) or optimal positioning (such as palm protectors for constantly clenched fists, wedges in bed, etc.). It is necessary to tell the PT and OT what the individual is having trouble with.
Most importantly, the OT or PT will perform a home assessment and recommend a variety of transfer and mobility equipment. The OT or PT will assist the individual with procuring a custom-fit wheelchair and cushion, bath-seat, hoyer lift, sling, raised toilet seat, etc.
Alberta Aids to Daily Living (AADL) will cover 75%-100% of the cost of the equipment on their approved product list as per their eligibility criteria and frequency limits. The assessment and documentation from the OT or PT is needed for approval and funding. The OT or PT acts as the mediator between the government and medical equipment supply vendors. In other provinces, the individual may need to access private insurance or NIHB to cover the cost of the equipment. Your local home care OT or PT will know the process. It takes a very long time to procure the equipment, so don’t hesitate to call home care!
Conclusion
Remember, despite the challenges individuals with Down Syndrome face as they age, they are still amazing additions to the lives of their family and caregivers. It doesn’t hurt to ask for help! Remember, when in doubt, contact home care or liaise with the family physician. There is no shame in being an advocate, and don’t wait until things get too difficult.
—By Sara Conrad, M.Sc.OT, Behaviour Consultant, WJS Canada