Tips for Taking Care of Angelman Syndrome Caregivers

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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As a parent or caregiver of a child with Angelman syndrome (a rare neurological disease characterized by delayed physical and mental development), it is easy to feel overwhelmed. It can also be hard for friends and family members to know how to help. Caregivers may feel “burnt out” or isolated, and the support of friends and family can make a big difference.

Here are some tips for caring for caregivers:

Learn about Angelman syndrome

Knowing that a friend or loved one’s child has been diagnosed with a rare disease can make it difficult to know how to begin conversations. Learning about Angelman syndrome can make it easier to start conversations and help caregivers feel comfortable discussing the child’s condition.

We regularly publish news about research and potential new treatments for Angelman syndrome as well as resource pages about the disease on our webs’ite. Mary Kay, a parent of a child with Angelman syndrome, writes a column called “Raising an Angel.”

Keep in touch

It’s easy for caregivers to feel isolated — it’s important for friends and family to keep in touch and make plans, even if it’s just to catch up over a cup of coffee.

Offer to help

Even small things can help caregivers feel less stressed — offer to bring over a meal or run a small errand.

Watch for warning signs of depression

Depression is very common in caregivers — it’s important to watch for signs of depression so that caregivers can get the care they need in a timely fashion.

Be understanding

Caregivers are under stress; be understanding about changes in plans.

 

Last updated: Aug. 7, 2019

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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.