Alzheimer’s caregiving is isolating – alone in a crowd of 16 million

Jim Herlihy, Senior Marketing & Communications Director,
(720-699-9286) or jherlihy@alz.org

Job opening: Position requires you to be on call 24 hours a day. Salary is zero. In fact, you will pay, on average, $11,372 per year out of your own pocket to do a job that will negatively affect your own health and may shorten your life. Average time on the job: 8 to 10 years, although some may hold the position 20 or more years.

That’s the job of a volunteer, unpaid caregiver for a loved one with Alzheimer’s or another form of dementia. In 2020, there are more than a quarter of a million Coloradans working in this job, among the 16.3 million people across the U.S. doing the same work for love, not money.

Following are a few facts about those who are volunteer caregivers for loved ones living with dementia:

• Most are women. About two-thirds of unpaid caregivers are women.

• Women caring for women. Nearly two-thirds of those living with dementia are women.

• 18.6 billion hours. The unpaid hours of caregiving provided in 2019 to persons in the U.S. living with dementia by family and friends.

• $244 billion. The value of the hours of unpaid caregiving (average $13.11/hour) in 2019.
  • That’s a lot of hamburgers. It’s more than 11 times the total revenue of McDonald’s in 2019 ($21.08 billion).

• Depression is common. 30% to 40% of family caregivers for people with dementia suffer from depression versus 5% to 17% of non-caregivers of a similar age.

• A high-stress job. Nearly 60% of caregivers for those with Alzheimer’s and other forms of dementia report “high to very high” levels of emotional stress; 38% report “high to very high” levels of physical stress.

• It could kill you. A Stanford University study said 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.

• “No” is not an option. Survey respondents frequently said that they felt they had no choice in whether they could take on the caregiver role.

• Not highly paid. 41% of caregivers have a household income of $50,000 or less.

• Almost half tout the benefits. Despite the physical, emotional and financial strain, 45% of caregivers surveyed by the Alzheimer’s Association reported the experience was “very rewarding.”

• Most commonly expressed concern: “Nobody gets it.” Alzheimer’s caregivers frequently state that others – particularly those who are not caregivers themselves – do not understand the pressures and challenges facing those who are on duty essentially 24 hours a day due to the unpredictable behaviors and sleeping patterns of the person with dementia.

• The toughest choice. The majority of caregivers admit that the toughest choice they have ever had to make is deciding when they can no longer provide care for a loved one and it is time to move him or her to an assisted living facility.

To learn more about Alzheimer’s disease or the programs and services provided at no charge to Colorado families, call the Alzheimer’s Association’s free Helpline: 800-272-3900.