Adult Down Syndrome Center

Do you have questions about how to support an individual with Down syndrome in becoming more independent with personal hygiene tasks?

Check out the recording of our webinar featuring Katie Frank, PhD, OTR/L, occupational therapist at the Adult Down Syndrome Center. Katie shares tips and strategies for a wide variety of tasks including:
🚽 toilet hygiene
🛁 bathing/showering
🦷 brushing teeth
🧴 caring for skin and nails
➕ and more!

The recording and slides are available at the link below.
🔗https://adultdownsyndrome.org/resources/personal-hygiene-webinar-12-12-2024/

Some people with Down syndrome have difficulty going up and down stairs. There are a variety of factors to consider including (but not limited to):
▪️Aging
▪️Vision problems and differences in depth perception
▪️Unsteady gait
▪️Fear of heights
▪️Pain
▪️And others

Our Resource Library has a list of tips compiled by our occupational therapist Katie Frank, PhD, OTR/L, and our former licensed clinical social worker Abby Rowley, LCSW. The tips include environmental changes that can increase safety as well as in-the-moment strategies for reassuring an individual and decreasing anxiety.

See the article linked below for the full list.
🔗 https://adultdownsyndrome.org/resources/stair-safety/

Incorporating shorter periods of physical activity throughout the day can be more manageable than doing longer periods of exercise all at one time.

During our Healthy Lifestyles group for individuals with Down syndrome, we brainstorm ways to be more active such as:
🧘‍♀️ stretching when we wake up in the morning
🛗 taking the stairs instead of the elevator/escalator
💪🏾 doing jumping jacks, arm punches, or squats during commercial breaks
📱 setting reminders to take movement breaks

A ten-minute walk in the morning ➕ a three-song dance break in the afternoon ➕ a ten-minute yoga video in the evening 🟰 the recommended 30 minutes of physical activity for the day!

Our Resource Library has a visual and template that can be used to make a plan for being active throughout the day. They are available for free at the link below.
🔗 https://adultdownsyndrome.org/resources/be-active-throughout-the-day-visual/

A serving size is a recommended amount of food or drink. While measuring every piece of food or ounce of liquid we consume is unrealistic and unnecessary for many of us, we can get a general sense of serving sizes by using the size of our hand.

For example, a 1 cup serving of vegetables 🥦 is about the size of a fist ✊🏼. A 3-ounce serving of meat 🥩, fish 🍣, or poultry 🍗 is about the size of a palm 🖐.
These are general guidelines. Each person has unique nutritional needs. A registered dietician or other healthcare professional can help determine individual dietary needs.

Our Resource Library has a visual and video that share tips for eating appropriate amounts of foods and how the size of our hand can be used to estimate serving sizes. They are available for free at the link below.

🔗 https://adultdownsyndrome.org/resources/serving-sizes-video/

Thank you to Avenues to Independence for providing a filming location and assisting with coordination and filming of the video!

🫁 Pneumonia is an infection that causes inflammation of the air sacs of one or both lungs. It is more common in people with Down syndrome compared to people without Down syndrome. People with Down syndrome are also more likely to have a severe case of pneumonia.

There are several conditions that can increase risk for pneumonia and/or a more severe case including:
▪️Abnormal swallowing
▪️Gastroesophageal reflux disease (GERD, heartburn)
▪️Sleep apnea
▪️Immune dysfunction
▪️Tooth and gum disease
▪️Seizures
▪️Alzheimer's disease
▪️And others

In the article linked below, Brian Chicoine, MD, provides more information about pneumonia in adults with Down syndrome including why it is more common, tips for preventing pneumonia, and treatments that may be recommended.

🔗 https://adultdownsyndrome.org/resources/pneumonia/

Folliculitis and boils are two skin conditions that are more common in people with Down syndrome.

Folliculitis is an infection or inflammation of the hair follicles (the tiny openings from which hairs grow). Small red bumps or white pimples may appear on the skin. When the infection spreads deeper, boils can occur. These painful, pus-filled bumps commonly appear in the armpits, groin area, buttocks, thighs, and along the waist band or bra line.

The physicians at the Adult Down Syndrome Center share their typical recommendations for preventing and treating these conditions in the article from our Resource Library linked below.

🔗 https://adultdownsyndrome.org/resources/folliculitis-and-boils/

*A condition that is similar, but is usually more severe, is hidradenitis suppurativa. Some experts have written that they are separate conditions with different causes and different severities. Other experts think folliculitis/boils and hidradenitis suppurativa are parts of the same condition with hidradenitis suppurativa being the most severe form.

For people with and without Down syndrome, our needs may change as we age and/or develop health issues. We may need to make challenging decisions about where we live. Some questions that we may need to consider include:
▪ Should we stay in our current home?
▪ Should we seek in-home support?
▪ Should we move to an assisted living setting or nursing home?
▪ When is the optimal time to move?

In the article linked below, Brian Chicoine, MD, shares information that individuals with Down syndrome and their families may want to consider when answering these questions.
🔗 https://adultdownsyndrome.org/resources/increased-need-for-services-and-support/

Change can bring a lot of emotions. Whether it's starting a new job, moving to a new home, welcoming a new staff member, or facing another life transition, it's normal to feel uncertain. The good news is that having a plan can help us feel more prepared, supported, and confident.

We're excited to share My Change Plan, a new free resource in our online library. Developed by our occupational therapist, Katie Frank, PhD, OTR/L, this worksheet helps individuals with Down syndrome think through upcoming changes and identify ways to navigate them successfully.

The worksheet encourages us to:
✅ Identify what is changing
✅ Explore how we feel about the change
✅ Think about who can support us
✅ Choose one thing we can do to help us feel better
✅ Remember the things that will stay the same

Access My Change Plan for free: https://adultdownsyndrome.org/resources/my-change-plan/

Birth control includes a wide range of strategies and medications. Women with and without Down syndrome may use forms of birth control to:
➡ to treat common symptoms of menstruation such as heavy and very painful periods and/or
➡ prevent pregnancy

There are some factors that are unique to women with Down syndrome that are important to consider in discussions about birth control to ensure that women with Down syndrome receive individualized and optimal care.

In the article linked below, Hannah Graham, MD, discusses different forms of birth control and the benefits and risks associated with each form. The article also includes links to resources on other women's health topics.
🔗 https://adultdownsyndrome.org/resources/birth-control/

Health passports are documents that individuals with Down syndrome and their families can fill out to share information with healthcare professionals. Health passports can include:
🗣 how a person communicates,
😧 signs that they are in pain or stressed,
😌 what they do to calm down,
👍 likes/dislikes,
➕ and more

Our Resource Library has a list of links to health passport templates that have been created by several organizations. There are versions in English and Spanish as well as versions for different types of visits such as appointments at a doctor's office vs. dentist's office.

Access the list at the link below.
🔗 https://adultdownsyndrome.org/resources/health-passports/