For Caregivers

Caregiving is willingly undertaken out of love and devotion to the person with ALS and can be a source of great personal satisfaction. Yet, over time, caregiving exacts an enormous emotional toll, and can adversely affect the caregiver’s physical and psychological health, threatening their ability to continue providing care. Concern for the person with ALS often causes the caregiver to overlook her/his own needs such as eating properly, getting enough rest, or taking time to pursue one’s own interests.

Family Caregiving

Primarily, caregiving is provided by family members.  Family caregivers provide care day and night, over weekends and on demand. Caregiving can include personal care, assistance with mobility in the home, transportation, housework, and grocery shopping, along with looking after other family members’ needs. Caregivers are often employed outside the home and may be the primary source of household income which adds even more demands, responsibilities and stress.  The family caregiver spouse, partner, adult child, parent, brother, sister — needs acknowledgement and support in the process of starting and maintaining the care-providing relationship.

Caregiving Statistics

  • Nearly 53 million people in the United States provide care to a chronically ill, disabled, or aging family member or friend during any given year.
  • Caregivers spend an average of 24 hours per week providing care for their loved one.
  • 61% of all caregivers in the United States are female, and the average age of a caregiver is 49.
  • 51% of caregivers feel their role has given them a sense of purpose or meaning.
  • One in 5 caregivers report high financial strain as a result of caregiving (18 percent). Four in 10 have experienced at least one financial impact as a result of their caregiving (45 percent).

All data, unless otherwise cited, is from the National Alliance for Caregiving and AARP’s 2020 Caregiving in the US Survey.

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November is National Family Caregivers Month, a time to recognize and honor the tremendous contributions of family caregivers. Caregiving for someone living with ALS has a broad and lasting impact, in both daily life and long-term well-being.