Job opening: Position requires you to be on call 24 hours a day. Salary is zero. In fact, you will pay, on average, $10,697 per year 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 hold the position 20 or more years.
Sound too good to be true? That’s the job of an unpaid caregiver for a loved one with Alzheimer’s or another form of dementia. In 2018, there are nearly a quarter of a million Coloradans working in this job, among the 16 million people in the U.S. doing the same work for love, not for money.
November is National Alzheimer’s Disease Awareness and Family Caregivers Month, as proclaimed by President Ronald Reagan, whose wife, Nancy, became his caregiver when he was diagnosed with Alzheimer’s disease in 1994.
Following are a few interesting 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.
- 4 billion hours. That’s how many unpaid hours of caregiving were provided in 2017 to persons in the U.S. living with dementia by family and friends.
- $232 billion. That’s the value of the hours of unpaid caregiving (average $12.61/hour).
- That’s a lot of hamburgers. That unpaid caregiving value is more than 10 times the total revenue of McDonald’s in 2017 ($22.8 billion).
- Depression is common. Between 30 and 40 percent of family caregivers for people with dementia suffer from depression compared with 5 to 17 percent of non-caregivers of a similar age.
- A high-stress job. Nearly 60 percent of caregivers for those living with Alzheimer’s and other forms of dementia report “high to very high” levels of emotional stress, while 38 percent report “high to very high” levels of physical stress.
- It could kill you. A Stanford University study reported that caregivers have a 63 percent higher mortality rate than non-caregivers, and 40 percent of Alzheimer’s caregivers die from stress-related disorders before the person for whom they are caring.
- Double trouble. One in four respondents are “sandwich generation” caregivers, meaning they care for children under age 18 as well as an aging parent.
- Experience not required. Half of all dementia caregivers (51 percent) report having no prior experience performing medical/nursing-related tasks, and often lack the information or resources necessary to manage complex medication regimens.
- “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.
- Highly educated. About 40 percent of dementia caregivers have at least a college degree, if not more education.
- Not highly paid. 41 percent of caregivers have a household income of $50,000 or less.
- Almost half tout the benefits. Despite the physical, emotional and financial strain, 45 percent 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.
Colorado-specific caregiving statistics
- Nearly 250,000 unpaid caregivers in 2017 for 71,000 people living with dementia.
- 282 million hours of unpaid care provided, valued at nearly $3.6 billion.
“Caring for a loved one with dementia is, in many ways, the most challenging job a family member or friend will ever undertake,” said Danelle Hubbard, director of Family Services for the Colorado Chapter of the Alzheimer’s Association. “For that reason, caregivers are the focus of a sizable portion of the services that our Association provides.”
Information, programs and services that the Alzheimer’s Association provides – all at no charge – to Colorado families include:
- Educational classes on topics including (click here to find a class near you):
- Know the 10 Signs: Early Detection Matters – If you or someone you know is experiencing memory loss or behavioral changes, it’s time to learn the facts. Early detection of Alzheimer’s disease gives you a chance to begin drug therapy, enroll in clinical studies and plan for the future. This interactive workshop features video clips of people with Alzheimer’s disease as a way to highlight the challenges they face every day.
- Dementia Conversations – A workshop that offers tips on how to have honest and caring conversations with family members about going to the doctor, deciding when to stop driving, and making financial and legal plans
- Effective Communication Strategies – Learn to decode verbal and behavioral communication with a loved one with Alzheimer’s or other dementias. Participants leave with strategies for meaningful connection with people in early-, middle- and late-stage dementia.
- Healthy Living for your Brain and Body: Tips from the Latest Research – Learn about research in the areas of diet and nutrition, exercise, cognitive activity and social engagement, and use hands-on tools to help you incorporate these recommendations into a plan for healthy aging.
- Legal and Financial Planning for Alzheimer’s Disease – This workshop, presented by an attorney who is a volunteer for the Alzheimer’s Association, is for anyone who would like to know more about what legal and financial issues to consider and how to put a plan in place.
- Other classes include:
- Understanding Alzheimer’s and Dementia
- Living with Alzheimer’s for people with Early Stage Alzheimer’s and Care Partners
- Living with Alzheimer’s: for Middle Stage Caregivers
- Living with Alzheimer’s: for Late-Stage Caregivers
- Living with Alzheimer’s: for People with Younger Onset Alzheimer’s
- Understanding & Responding to Dementia-Related Behavior
- Support groups composed of other caregivers.
- Family care consultations.
- The Association’s free 24/7 Helpline (800-272-3900), staffed by trained professional counselors available to answer questions, refer people to resources in their community, deal with issues that are vexing to the caregiver, and more. The Helpline is staffed by bilingual English/Spanish counselors, and translation services are available in more than 200 languages and dialects.
- The Association’s website: alz.org/co offers a wide variety of information and resources.
To learn more about caregiving, find care resources and support, click here.