Honoring 11.2 million Alzheimer’s caregivers

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By Jim Herlihy
Alzheimer’s Association

November is a time to publicly honor the millions of Americans who perform a very private and selfless act: caring for more than 6 million people in the U.S. living with Alzheimer’s disease. 

More than 11.2 million people — an estimated 3.3 percent of the U.S. population — are currently serving as volunteer, unpaid caregivers for their loved ones living with Alzheimer’s disease. And 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, it later was expanded by President Bill Clinton to honor our nation’s caregivers: National Family Caregivers Month.

“Many of these people don’t even consider themselves to be caregivers,” said Jeff Bird, executive director of the Alzheimer’s Association of Colorado. “That’s my mom … that’s my husband … that’s my friend … Caregivers act out of love and loyalty for this special person and give of themselves without expecting anything in return. The act of giving is its own reward.”

The enormous impact
of caregiving

While caregiving is an individual act, often given by the hour or the day, the collective impact is enormous. 

• More than 26 hours per week: In 2020, volunteer caregivers in the U.S. provided an estimated 26.3 hours per week each of unpaid care for a loved one living with Alzheimer’s disease.

• The average caregiver provided 1,369 hours of care per year. That equaled 15.3 billion hours across the U.S. in 2020.

• In Colorado, 158,000 caregivers provided 184 million hours of unpaid care in 2020.

• More than $11,000 per year: Volunteer caregivers give more than their time. On average, in 2020 dementia caregivers reported spending $11,535 each for medical, personal care and household expenses for the person with dementia.

• Four years or more: More than half (57 percent) of family caregivers of people with Alzheimer’s or other dementias have provided care for four or more years. Some provide care for up to 20 years.

• Double duty: One in four caregivers report they are “sandwich generation” caregivers, meaning they care for children under age 18 as well as an aging parent.

“There is much more than meets the eye to being a caregiver for a loved one with Alzheimer’s disease,” said Bird. “For many, it is putting the person they love ahead of themselves.”

In fact, one research study reported that 74 percent of caregivers were “somewhat concerned” to “very concerned” about maintaining their own health since becoming a caregiver. A 2017 poll found that 27 percent of dementia caregivers delayed or did not do things they should in order to maintain their own health. And 18 percent of Alzheimer’s caregivers die before the person for whom they are caring.

Big numbers

While caregivers often act individually or in a small team, when you add up the numbers, the totals are staggering: Based on an average value of $12.64 per hour, the 15.3 billion hours of unpaid Alzheimer’s care provided in 2020 was valued at $256.7 billion — more than 13 times the total revenue of McDonald’s ($19.21 billion). 

Caring for caregivers

Perhaps the greatest source of support available to Alzheimer’s caregivers is other caregivers. The Alzheimer’s Association offers scores of support groups around the state to help these individuals get advice, counsel and a friendly ear from people like themselves who are living the challenge of caregiving. 

To register, or for more information about monthly support groups, call the Alzheimer’s Association free 24/7 Helpline at (800) 272-3900 or go to www.alz.org/crf, click on Alzheimer’s Association Programs and Events, and then on Support Groups. 

About the Alzheimer’s Association

The Alzheimer’s Association of Colorado is the premier source of information and support for the more than 76,000 Coloradans with Alzheimer’s disease, their families and caregivers. The Alzheimer’s Association offers information, educational programs, counseling and support groups at no cost to families. Contributions help fund advancements in research to prevent, treat and eventually conquer this disease. The Alzheimer’s Association advocates for those living with Alzheimer’s and their families on related legislative issues, and with health and long-term care providers. For information, call the Alzheimer’s Association free 24/7 bilingual Helpline at (800) 272-3900 or visit www.alz.org.