Unsung heroes: 16.2 million Alzheimer’s caregivers

An estimated 5% of the U.S. population – 16.2 million people – is currently serving as volunteer, unpaid caregivers for their nearly 6 million loved ones living with Alzheimer’s disease.

This veritable army of spouses, children, siblings, grandchildren, friends and neighbors is giving its time – and often its own money – to care for loved ones living with Alzheimer’s, the last major disease without a prevention, treatment or cure.

November is a special month to honor this unique, dedicated group of people. Originally designated as National Alzheimer’s Disease Awareness Month by President Ronald Reagan in 1983, the event later was expanded by President Bill Clinton to honor our nation’s caregivers: National Family Caregivers Month.

“Providing one-on-one care for a loved one is a very personal experience,” said Amelia Schafer, executive director of the Colorado Chapter of the Alzheimer’s Association. “For some, it’s a way to show their love for a family member or friend. For others, it may be a way to give back and show their appreciation.”

The reality is that these volunteer caregivers are generally inexperienced in the tasks facing them. Half (51%) report having no prior experience performing medical/nursing-related tasks. But, despite the physical, emotional and financial strain, 45% of caregivers surveyed by the Alzheimer’s Association reported the experience was “very rewarding.”

Alzheimer’s caregiving by the numbers

The statistics surrounding Alzheimer’s caregiving are as startling as the disease itself. The sixth-leading cause of death in the United States and the only leading disease without a prevention, treatment or cure, Alzheimer’s poses a massive healthcare challenge that could not be met without the selfless acts of volunteer caregivers. Here’s a statistical look at the disease and the caregivers:

  • Alzheimer’s caregivers across the U.S.: 16.2 million in 2018
  • Duration of care: more than half (57%) of family caregivers of people with Alzheimer’s or other dementias have provided care for 4 or more years. Some provide care for up to 20 byears.
  • Number of hours: In 2018, volunteer caregivers in the U.S. provided an estimated 18.5 billion hours of unpaid care.
    • An average of 21.9 hours of care per caregiver per week.
  • Value of care: Based on an average of $12.64 per hour, the unpaid Alzheimer’s care provided in 2018 was valued at $233.9 billion.
    • That is more than 11 times the total revenue of McDonald’s in 2018 ($21.03 billion).
  • Out-of-pocket costs: The contributions made by volunteer caregivers go behind their time. On average, in 2018 dementia caregivers reported spending $11,233 each for medical, personal care and household expenses for the person with dementia.
  • Personal toll: A Stanford University study reported that caregivers have a 63% higher mortality rate than non-caregivers, and 40% of Alzheimer’s caregivers die from stress-related disorders before the person for whom they are caring.
  • Double responsibilities: One in four caregivers report they are “sandwich generation” caregivers, meaning they care for children under age 18 as well as an aging parent.

In Colorado

There are more than 73,000 Coloradans living with Alzheimer’s disease. Supporting them are more than a quarter of a million volunteer caregivers.

Caregiver training/education

The Alzheimer’s Association offers a wide range of educational programs and services – all at no charge – for caregivers of persons living with Alzheimer’s disease. To learn more, go to www.alz.org/co or call the Association’s free 24/7 Helpline at 800-272-3900.

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