En español | A new AARP study of American family caregivers reveals that 26 percent are looking after relatives with Alzheimer's disease and dementia, a significant boost from 22 percent five years ago. And, in general, the care they provide is growing more complex as recipients grow older and suffer more health problems, the study shows.
The report, “Caregiving in the U.S. 2020,” which AARP developed in conjunction with the National Alliance for Caregiving (NAC), found that the number of relatives caring for adults age 50 and older jumped significantly, with nearly 42 million adult Americans providing that care, up from 34 million in 2015.
More family caregivers (32 percent) are tending to someone with memory problems, compared with five years ago, when the figure was 26 percent. Further, 27 percent are caring for people with mental health issues (up from 21 percent).
Many older Americans — 63 percent (an increase from 59 percent) — need care because of long-term physical conditions, such as those with mobility problems that may mean they have to use a walker or a wheelchair and may be recovering from a stroke, surgery or cancer treatment.
All this can equal added burdens for family caregivers, as many juggle day jobs and other family responsibilities with the demands of caregiving, said Susan C. Reinhard, AARP senior vice president and director of the AARP Public Policy Institute, who played a key role in the report, which is based on online surveys conducted in 2019 of more than 1,392 Americans age 18 and older who provided care for an adult in the past year.
"I hold family caregivers in great esteem, and I've started to see them as a scarcity,” Reinhard said in a telephone interview.
Those caregivers help with a panoply of needs of those they care for:
- 99 percent help with instrumental activities of daily living, such as paying bills and dealing with insurance companies.
- 60 percent help with activities of daily living, including bathing, dressing and eating.
- 58 percent perform medical and nursing tasks, such as wound care and managing multiple medications.
- 71 percent monitor their care recipient's condition.
- 65 percent communicate with health care providers about the recipient's care.
- 56 percent advocate for the recipient with care providers, community services or government agencies (up from 50 percent in 2015).
Feeling our way
Joel Johnson, 60, of Auburn, Washington, knows that routine well. Seven years ago his wife, Nancy, then 52, was diagnosed with early-onset Alzheimer's disease, radically changing their lives.
"We were just feeling our way,” Johnson recalls. “The neurologist comes in the room and says, ‘You've got Alzheimer's, and here are a few pamphlets,’ and you're on your own."
Johnson owned a physical therapy business, with three clinics, and both he and his wife were physical therapists. But with Nancy's illness, he had to cut back his work, hour by hour. Finally, in March 2019, he sold his company to a larger firm, although he has continued to do some physical therapy work, now interrupted by COVID-19 restrictions.
He estimates that his and his wife's revenue has been reduced by close to $1 million because of Alzheimer's, adding that they are fortunate to have sufficient savings.
That's in contrast to the 45 percent of caregivers in the AARP report who said they had experienced at least one financial impact, including taking on more debt and leaving some bills unpaid.
Early on in her illness, Nancy Johnson read books to schoolchildren and was interviewed about Alzheimer's on NBC's Today Show. But she has deteriorated over the years, and Joel has hired a part-time caregiver. She gets confused when the couple go to their cabin, close to the crest of the nearby Cascade Mountains. She can't keep straight the names of their two 32-year-old twin sons and frequently repeats the same story over and over.
Joel Johnson reports that his physical condition has worsened. He used to work out at the gym three days a week. “I had to cut way back because I had to be at home,” he said. That also means less time hiking in the woods and the nearby Cascades foothills.
"She never leaves my mind,” he said.
Multiple health problems
The report found that care recipients now have 1.7 conditions, up from 1.5 percent in 2015, reflecting the increased complexity of their health problems. They include:
- "Old Age” — 16 percent
- Mobility issues — 12 percent
- Alzheimer's, dementia — 11 percent
- Surgery, wounds — 6 percent
- Cancer — 6 percent
- Mental/emotional illness — 5 percent
- Back problems — 5 percent
- Stroke — 5 percent
- Diabetes — 4 percent
- Heart disease — 4 percent
Jeanne Wintz of Seattle, 72, can attest to the challenges of looking after a relative with multiple health conditions. She is the caregiver for her husband, 89, who suffers from dementia as well as congestive heart failure and kidney problems.
Wintz's life has grown more difficult as her husband's condition has worsened. While he retains his pleasant mood, his innate sense of responsibility can sometimes make him agitated.
Years ago they paid a housekeeper to clean their former home. Now they live in an independent living facility, where a housekeeper comes once a week to vacuum their unit and change the sheets. Her husband gets upset, thinking he needs to pay her.
Recently, Wintz stepped away to get coffee on another floor while the housekeeper worked, only to learn that her husband had scrambled downstairs with his walker to the lobby, looking for an ATM to get cash for payment. “I just can't leave him alone,” she said. “Anything can happen.”
Along with the demands of the physical care — dressing, bathing, medication management — nearly 4 in 10 caregivers describe feeling high levels of emotional stress. And 21 percent feel alone, a number that rises to 32 percent among those who have been caregivers for five years or more.
Johnson said he had depression as he cared for his wife, an experience new to him.
"It's one of those things that creeps up on you,” he said. He sought out counseling and also has received help from other caregivers in his Alzheimer's Foundation support group.
And on days when his hired caregiver can stay with his wife, Johnson gets a break by helping his sons with projects, such as building a fence for a play gym for his granddaughters.