Respite Care for Fabry Disease

Respite Care for Fabry Disease
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Being a primary caregiver for a patient with a rare disorder like Fabry disease can be physically, mentally, and emotionally draining. As this disease progresses, patients also tend to become more and more dependent on care.

Respite care offers caregivers time in which to take a break, relax, and recharge, so they can continue to help those in their care.

What is respite care?

Respite care is an opportunity for caregivers to have someone else take care of a patient’s needs so they can have a break. The time given can range from a few hours to a few weeks. Respite care can also be a regular, or one-off, occurrence.

A friend, family member, or a healthcare worker such as a nurse, nursing assistant, or home health aid can provide respite care, depending on the level of care the patient needs. This care can be given in the patient’s home for a familiar setting, or at another facility. Alternatively, a respite caregiver could take the patient out on an excursion, offering the caregiver some time at home.

How can respite care help?

Caring for a patient with a chronic and progressive disease such as Fabry can be stressful, and promote feelings of depression. Family caregivers are estimated to be twice as likely to have depression than the general public, based largely on the stresses and the emotional and physical tolls of regular caregiving — not the act of being a caregiver itself.

Respite care can help primary caregivers by giving them time to themselves, or to socialize with friends or other family members. Taking a break can help caregivers rejuvenate physically and mentally, helping in the longer run not only caregiver but also the patient and the rest of the family.

Once the respite caregiver and patient feel comfortable, the caregiver might also consider more frequent or longer breaks to do things like exercise, enjoy a meal with friends, take an overnight stay for more restful sleep, or go on a vacation.

Finding respite care

Depending on the health needs of the patient, friends or family may be available to provide care. The patient’s physician or medical team may also be able to suggest a referral to particular respite care service providers.

A Fabry support group may also be able to recommend a service. Caregivers of patients in the U.S. and Canada can locate respite care providers through the ARCH National Respite Network and Resource Center.

Paying for care

Most private insurance companies in the U.S. do not cover the costs of professional respite care workers. However, financial assistance programs may be available. These can include government programs, scholarships, or a modified fee schedule with a provider company, depending on your income level.

One program, offered by the National Organization for Rare Disorders (NORD), is called the Rare Caregiver Respite Program. It can provide up to $500 a year toward the cost of professional respite care services.

 

Last updated: Feb. 5, 2021

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Fabry Disease 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. 

Brian holds a Ph.D. in Biomedical Engineering from Case Western Reserve University and a Bachelors of Science in Biomedical Engineering from Georgia Institute of Technology. He has co-authored numerous scientific articles based on his previous research in the field of brain-computer interfaces and functional electrical stimulation. He is also passionate about making scientific advances easily accessible to the public.
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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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Brian holds a Ph.D. in Biomedical Engineering from Case Western Reserve University and a Bachelors of Science in Biomedical Engineering from Georgia Institute of Technology. He has co-authored numerous scientific articles based on his previous research in the field of brain-computer interfaces and functional electrical stimulation. He is also passionate about making scientific advances easily accessible to the public.
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