Respite Care for Sanfilippo Syndrome Caregivers

Respite care — time off for caregivers who tend to people with diseases, medical problems, and other disabilities — offers an opportunity for primary carers to take necessary breaks and tend to their own physical and mental health needs.

Children with Sanfilippo syndrome require increasing levels of care as their disease progresses. Providing constant care can be physically, mentally, and emotionally draining for caregivers.

Taking advantage of respite care opportunities can allow primary caregivers to get away and refuel so that they can continue to provide the care the patient needs.

How having a child with Sanfilippo affects a caregiver’s mental health

Caring for a child with Sanfilippo syndrome can be very stressful. The physical burden of taking care of the child’s needs, together with the mental and emotional burden of handling their behavioral issues, including hyperactivity and sleep disturbances, can lead to anxiety and depression in caregivers.

A study of parents whose children have Sanfilippo found that anxiety was 50% more frequent for the mothers of children with the disorder than those whose sons and daughters did not have the disease. Similarly, depression was 34.6% more frequent in Sanfilippo mothers than among those with unaffected children.

Fathers of children with Sanfilippo syndrome also had a 36.8% increase in the frequency of depression, compared with those whose children did not have the disorder.

What is respite care?

Respite care involves someone else watching a patient so that the regular caregiver can have the chance to take a break for a period of time. The time off can vary, and be anywhere from a few hours to a few weeks. It can be a regular occurrence or could be a one-time event.

Depending on the level of care the patient needs, respite care may be provided by a friend or family member. Sometimes a healthcare worker such as a nurse or home health aid can help. The patient may be cared for in his or her own home or at a separate facility that might provide access to fun activities and excursions.

How can respite care help?

Respite care can give caregivers a chance to relax, recharge, and take care of themselves.

Taking time to socialize with friends or other family members, watch a movie, exercise, or take a trip can help to avoid caregiver burnout. Such burnout is physical, emotional, and mental exhaustion that the caregivers of chronically ill patients frequently experience.

As the patient and regular caregiver become more comfortable with alternate arrangements, respite care may become more regular.

Where can I find respite care?

Referrals from your child’s physician are one place to start when looking for a respite care provider. Any social service agency with whom you deal on a regular basis also might be able to provide recommendations for providers.

Friends or other family members may be able to watch the patient depending on the level of disability. Perhaps a religious or social organization to which you belong may be able to suggest respite care providers.

Patient organizations and support networks also may be able to help provide assistance in finding respite care.

The ARCH National Respite Network and Resource Center can help locate respite caregivers for patients in the U.S. and Canada.

How do I  pay for it?

Private insurance companies in the U.S. do not usually cover the cost of respite care. Financial assistance through scholarships, government programs, or a modified fee schedule with the caregiver company may be available, however.

The National Organization for Rare Disorders (NORD) offers a program called the Rare Caregiver Respite Program to help ease the financial burden of respite care. The program offers up to $500 a year for services from nurses, nursing assistants, or home health aides to qualifying individuals.

Last updated: Feb. 23, 2021

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Sanfilippo 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.