Respite Care for Families Affected by Angelman Syndrome

Respite Care for Families Affected by Angelman Syndrome
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Providing constant care to a person with a chronic disease like Angelman syndrome can drain you mentally, physically, and spiritually. At some point, you must recharge, and respite care can provide you with that opportunity to rest, relax, and restore.

What is Angelman syndrome?

Angelman syndrome is a rare genetic disorder that affects the nervous system and leads to intellectual and physical disabilities. It develops due to the malfunction or absence of the UBE3A gene. Most patients receive a diagnosis between ages 9 months and 6 years.

What is respite care?

Respite care is when someone looks after your loved one for a period of time. This can be anything from a few hours during the day or overnight to longer periods. You might use such care occasionally or regularly.

Your loved one can be cared for in the home or elsewhere. With in-home respite, the caregiver might stay in your home while providing support and care. Alternatively, the respite caregiver might take the patient on an excursion, perhaps to a park or for a drive.

Center-based respite care is when your loved one goes to a center on given days to be cared for as part of a group. Such centers often provide opportunities for activities and outings.

There are also after-school programs that offer fun and inclusive activities for the siblings of the patient. These programs give youngsters time away from what may be a somewhat stressful home environment when a family member has Angelman syndrome.

How can respite care help?

A recent study published in Neurology found that the most challenging symptoms for caregivers of those with Angelman syndrome include the patients’ inability to express physical or emotional pain, acts of physical aggression and potential harm to themselves or others, and sleep issues.

More generally, the National Alliance for Caregiving states that nearly four in 10 caregivers consider their situation highly stressful, and 28% of survey respondents report moderate emotional stress.

While it can be complicated to take a break from caring for a loved one, doing so is good for you, your family, and your loved one with Angelman syndrome. It gives you a chance to rejuvenate and take care of yourself. Ultimately, this will allow you to be a better caregiver.

You could catch up with friends, exercise, take a vacation, visit a restaurant, or simply enjoy a full night’s sleep. If you have other children, you could use this time to focus on them. Be sure to find something that helps you relax, even if it’s just going for a walk or finding time to take a few deep breaths and clear your mind.

Respite care could also be a break for your child with Angelman syndrome. Their usual routine can be relaxed, giving them the opportunity to do something different. This promotes new skill development and independence. Remember that the child may be prone to separation anxiety, so take measures to help alleviate that, such as having the same respite carer look after them if possible.

Where can I find respite care?

Perhaps the patient’s clinician or a support organization such as the Angelman Syndrome Foundation can help with a referral for respite care. In the U.S. and Canada, you can also locate private respite care programs via the ARCH National Respite Network and Resource Center.

You may choose to arrange care informally with family and friends while you go out for the evening or attend an appointment. You also may wish to look into community recreational offerings at local libraries or clubs.

Sometimes a home health worker who visits during the day and has established a good relationship with your loved one with Angelman syndrome can supply respite care for longer periods. This can allow you to travel or maintain your own health.

Your options depend largely on where you live, the patient’s age and needs, and what you hope to gain from respite care. Because formal services often have waiting lists, it’s a good idea to plan ahead.

You may also consider applying to the Rare Caregiver Respite Program of the National Organization for Rare Disorders. Eligible applicants can get up to $500 annually to secure respite caregiving from a nurse, nursing assistant, or home health aide.

 

Last updated: Jan. 25, 2021

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Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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Özge has a MSc. in Molecular Genetics from the University of Leicester and a PhD in Developmental Biology from Queen Mary University of London. She worked as a Post-doctoral Research Associate at the University of Leicester for six years in the field of Behavioural Neurology before moving into science communication. She worked as the Research Communication Officer at a London based charity for almost two years.
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Mary M. Chapman began her professional career at United Press International, running both print and broadcast desks. She then became a Michigan correspondent for what is now Bloomberg BNA, where she mainly covered the automotive industry plus legal, tax and regulatory issues. A member of the Automotive Press Association and one of a relatively small number of women on the car beat, Chapman has discussed the automotive industry multiple times of National Public Radio, and in 2014 was selected as an honorary judge at the prestigious Cobble Beach Concours d’Elegance. She has written for numerous national outlets including Time, People, Al-Jazeera America, Fortune, Daily Beast, MSN.com, Newsweek, The Detroit News and Detroit Free Press. The winner of the Society of Professional Journalists award for outstanding reporting, Chapman has had dozens of articles in The New York Times, including two on the coveted front page. She has completed a manuscript about centenarian car enthusiast Margaret Dunning, titled “Belle of the Concours.”
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