Adults with Prader-Willi syndrome (PWS) may experience health and functional challenges earlier or differently than people without PWS, making proactive, PWS-informed care especially important as they age.
For families supporting an adult with PWS, knowing what health changes to watch for—and when to seek help—can make a meaningful difference as their loved one gets older.
Dr. Laura de Graaff of Erasmus MC in the Netherlands has studied health and aging in adults with PWS and has extensive experience caring for this population. Her research and clinical experience highlight several areas that deserve particular attention as adults with PWS get older.
Stay on Top of Preventive Health Screenings
Some health problems, including high blood pressure, high cholesterol, and diabetes, become more common as adults with PWS get older. In large cohorts of people with PWS, these issues have been seen at ages 25 to 30 and become more common after age 30.
Regular screening can help identify health concerns early, before they have a significant impact on health and quality of life.
Depending on your loved one's age and individual health needs, routine monitoring may include:
- Blood pressure
- Blood glucose or diabetes screening
- Cholesterol and other metabolic testing
- Bone health
- Thyroid and sex hormone levels
- Weight, mobility, and physical functioning
Talk with your healthcare provider about which screenings are appropriate and how often they should be performed.
Maintain Strength, Mobility, and Physical Activity
Maintaining strength and mobility is especially important as adults with PWS get older. Lower muscle mass and strength can make physical activity more difficult, which can lead to less activity, further loss of strength, and weight gain.
Regular physical activity can help interrupt this cycle and support strength, mobility, and independence.
What should caregivers watch for?
Changes in mobility or activity may be gradual. Pay attention if your loved one:
- Walks less or avoids activities they previously enjoyed
- Has more difficulty with stairs
- Gets tired more easily
- Has changes in balance or strength
- Needs more assistance with everyday activities
These changes shouldn't simply be dismissed as “getting older.” Talk with the healthcare team about what may be contributing to the change and what supports could help.
What can caregivers do?
The goal isn't necessarily intense exercise. The goal is to find sustainable ways to keep your loved one moving.
A successful approach may include:
- Activities adapted to the person's physical and developmental abilities
- Behavioral supports that make participation easier
- A PWS-informed nutrition plan
- A predictable, food-secure environment
- Gradually increasing physical activity when appropriate
Monitor Hormones and Bone Health
Hormone deficiencies are common in PWS and can affect energy, body composition, muscle mass, and bone health.
Talk with your healthcare provider about whether your loved one should be evaluated for:
- Thyroid function
- Sex hormone deficiencies
- Growth hormone treatment
- Bone health
Research shows that growth hormone treatment has many benefits for adults with PWS, including improved body composition, increased energy, and more activity.
Because bone health can be an important concern in PWS, ask whether your loved one needs specific monitoring or evaluation of bone density.
Make Sure Support Matches Your Loved One's Needs
Adults with PWS may have a chronological age that doesn't fully reflect their cognitive or adaptive abilities.
As people age, it can be easy for caregivers and healthcare providers to expect more independence simply because someone is getting older. At the same time, some adults may need more support with certain tasks as they age.
Consider whether expectations, communication, physical activity, and daily routines match your loved one's developmental abilities.
Know Your Loved One's Baseline
Caregivers often know their loved one's usual behavior, energy level, mobility, sleep, and daily functioning better than anyone else. Changes from that baseline can be important to notice and discuss with the healthcare team. A new or worsening change shouldn't automatically be attributed to getting older or to PWS.
If something seems different, ask about it.
Questions to Ask at Your Next Healthcare Visit
You may want to bring these questions to your next appointment:
- Are we up to date on recommended health screenings?
- Should we check thyroid, sex hormones, or other hormone levels?
- How are their strength and mobility compared with last year?
- Are there changes we should make to their physical activity or nutrition plan?
- How is their bone health?
- Is their current level of independence and support appropriate?
- Are there changes in behavior, energy, sleep, or functioning that we should investigate?
Supporting Health as Adults With PWS Age
Aging with PWS doesn't have to mean accepting a decline in health or independence. Proactive screening, attention to strength and mobility, appropriate management of hormone health, regular physical activity, and support that matches an individual's needs can all help adults with PWS maintain their health and quality of life.
Caregivers are often the first to notice when something has changed. Bringing those observations to the healthcare team—and asking questions when something doesn't seem right—can help ensure that changes are identified and addressed early.
Want to Learn More?
Dr. Laura de Graaff's 55-minute recorded presentation on aging and health in adults with PWS draws on her team's experience caring for more than 200 adults with PWS and their research into growth hormone and physical function.