The Impact of Being a Rare Disease Caregiver

Being a caregiver to someone with ALS can be rewarding, but it also takes a toll both physically and mentally. As National Family Caregiver Month comes to a close and we enter the holiday season, the year-round efforts of caregivers for people with rare diseases, including ALS, continue on. Families with ALS should know they are not alone in their struggles and sacrifices—so many people across the country are forced to readjust their lives in response to this disease. Here are some statistics that show the impact it can have on caregivers.

General Information

  • Nearly 90% of rare disease caregivers are the primary caregiver, with most being immediate relatives.
  • Roughly one in ten assist some other relative or a non-relative with their rare disease or condition (9%).
  • More than one in ten rare disease caregivers are providing care to an adult age 50 or older (13%).
  • Most care for a spouse/partner (63%) or parent (27%).

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Health Care

  • More than eight in ten rare disease caregivers rely on medical professionals for information, while 68% turn to condition-specific websites or organizations.
  • Three in five rare disease caregivers help with at least one Activity of Daily Living and more than half feel a sense of purpose due to their caregiving role.
  • Nearly all rare disease caregivers (94%) monitor the severity of their care recipient’s condition, advocate for them, and communicate with care providers.
  • More than eight in ten rare disease caregivers help their care recipient with medical nursing tasks.

Personal Care

  • Two out of three rare disease caregivers find it difficult to maintain their own health and one out of three rate their physical health as only fair or poor.
  • Long-term rare caregivers – those who have been providing care for 10 years or
    longer – are more likely to be in fair or poor health (36%) than shorter-term
    caregivers (26%).
  • About 50% of rare disease caregivers have difficulty maintaining friendships and 53% report feeling alone.
  • Sixty-seven percent of rare disease caregivers say providing care to their care recipient is emotionally stressful, two times as high as general caregivers.

Lifestyle Changes

  • Rare disease caregivers of adults spend an average of 37 hours a week providing care—about 12 more hours a week than general caregivers.
  • Two out of three rare disease caregivers work while providing care and 91% have gone in late or left work early to provide care.
  • Among rare caregivers of an adult, help is most often provided with housework (90%), grocery or other shopping (89%), meal preparation (85%) and transportation (84%).
  • Eighty-six percent of rare disease caregivers have experienced financial hardship because of their caregiving role.

Although caregivers may sacrifice so much to do what’s required for the emotional and physical health of their loved ones, the majority wouldn’t want it any other way.  Thank you caregivers for everything you do for people with ALS! The Chapter has resources for caregivers available on our website:

Source: RARE DISEASE CAREGIVING IN AMERICA, National Alliance for Caregiving, February 2018

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