Caring for Rare Disease Caregivers

A Guide for Family Caregivers of Loved Ones with Rare Diseases

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    Technology Can Help Caregivers

    Family caregiving can be a full-time job. Your role includes so many important activities. You manage medications, provide transportation, and handle doctor appointments – to name just a few of the vital tasks that family caregivers perform on a daily basis.

     

    If your loved one’s room already looks like a hospital room, you probably have already been exposed to one type of technology – medical devices in the home. But there are other types of technology that can help you with your caregiving responsibilities. Any number of companies are leaping into the market to give caregivers like you a much-needed helping hand – some at a cost; some for free.

     

    Could you use technology to help you track medications? Use a GPS locator if your loved one wanders off? Maybe even a medical robot in the home? Well, these technology solutions all exist today. And more are being offered every month.

     

    Caregivers are much more likely than non-caregivers to pursue online resources for health information, support, care and advice. According to the Pew Research Center, 59% of caregivers say that online resources have been helpful to their ability to provide care and, significantly, 52% say that online resources have been helpful to their ability to cope with the stress of being a caregiver.

     

    Technology can help you be an active, engaged participant in your loved one’s care. Patients with chronic conditions (such as rare diseases), or their caregivers, who are "highly engaged in own their care" report fewer health problems, have a lower hospital re-admission rate, and are less likely to experience a medical error.

     

    There are apps, gadgets, and websites that can help you:

    • Manage complex medication regimens

    • Gather and report health data such as blood pressure and blood sugar

    • Alert you to a seizure

    • Learn more about your loved one's disease or condition

    • And even bring together caregivers and volunteers through online communities

    • In the case of genetic rare disease, there are also apps to help map the family tree

     

    Sure, the world of technology may be changing faster than any of us can keep up with, but that’s actually good news: newer and better technologies are constantly being developed to help family caregivers and their loved ones manage complex care for rare diseases and promote their health and well-being. You may want to consider using some of these technologies to keep you and your loved ones healthy!

    Caregiving Right Now
    Learning to Think Like a Care Manager
    Patient File Checklist
    Going to The Doctor
    Medication List
    How to Communicate Symptoms​
    Crisis Symptom Reporting Guide
    Technology Can Help Caregivers

    When Keeping Your Loved One at Home Means Bringing In Help

    What Is Home Care?
    Getting Started with Home Care
    Questions for Home Care Providers

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