By Marina Renton
A high-stress job that requires a full-time commitment for no pay.
What kind of work fits that description? The answer should resonate with more than 43 million Americans: unpaid family caregiving.
As the population ages and more people need care, the ratio of available family caregivers to care recipients is declining, and efforts to support family caregivers are beginning to make headway in the political sphere.
Among those who need that support most: “higher-hour” caregivers, who spend more than 21 hours a week on caregiving, according to Caregiving in the U.S. 2015, a report released this summer by the National Alliance for Caregiving and the AARP Public Policy Institute.
Ask Massachusetts resident Diane Gwynne, 56. After her mother’s sudden death this past December, Gwynne found herself trying to balance her career and household responsibilities with caring for her 92-year-old father, who has dementia.
“I was so overwhelmed,” Gwynne said of when she first started caring for her father. “It was so sudden. I didn’t even know where to turn.”
Last year, Gwynne’s mother had an intuition that the Christmas of 2014 would be the family’s last. Gwynne’s mother was in her eighties and her father was seven years older, in his nineties. Both were feeling the effects of age.
“My mother said, ‘I want to put all the decorations up, because I think this is going to be our last year all together,’” Gwynne recalls. Her mother, it turned out, was unknowingly predicting her own death: She passed away just before the New Year.
Suddenly, her bereaved children found themselves managing the estate, taking their father to medical appointments, and making arrangements for his day-to-day care.
Caregivers by the numbers
Caregiving in the U.S. 2015, a report that comes out every few years and aims to profile the nation’s family caregivers, looks at the demographics of family caregivers, along with the emotional, physical, and financial challenges they face.
Based on the results of online interviews with 1,248 adult caregivers who provide care to adults, the report offers a quantitative snapshot of the country’s caregivers. Among its findings:
• Approximately 43.5 million adults in the country have provided some form of unpaid care to an adult or child with special needs in the past year.
• About 39.8 million Americans have cared for an adult (over 18 years old), and 34.2 million an adult over 50, in the past year. In other words, about 18 percent of U.S. adults have shouldered some unpaid caregiving responsibilities in the past year.
• The average caregiver is a 49-year-old woman caring for a relative. (Eighty-five percent of caregivers look after a relative, 49 percent a parent or in-law.)
The average caregiver is a 49-year-old woman caring for a parent or parent-in-law.
• Less than a third of unpaid caregivers retain some kind of paid help.
While she had helped out both her parents in recent years, it wasn’t until her mother’s death that Gwynne and her sister became the primary caregivers for their father.
“For many caregivers, they’re thrust into this job through some crisis,” said Gail Gibson Hunt, president of the National Alliance for Caregiving. “We need to provide resources for the caregiver who’s going to be facing an enormous amount of stress and responsibilities…They’re going to be faced with all kinds of decisions, and we need to support them when they’re first starting out.”
Gwynne’s childhood home in Andover, Massachusetts, where her parents had lived for nearly half a century, was not adapted to senior living — it had multiple sets of stairs, required upkeep, and the bathrooms weren’t handicapped-accessible.
Plus, her father needed 24/7 help to ensure that his personal care needs — like shaving and showering — were taken care of, he got his meals and medications, and he didn’t wander out at night. So, his children had to make the “heart-wrenching” decision to move him into a nursing home, Gwynne said.
Being a caregiver is often a major time commitment, requiring an average of about 24 hours a week. (Twenty-three percent of caregivers spend 41 or more hours a week on caregiving, Caregiving in the U.S. 2015 found.)
Caregivers who provide care for more than 20 hours a week are classified as “higher-hour caregivers,” Hunt said, and tend to face more challenges.
“You could see the difference in how the stress levels, for example, were greater among those caregivers who were doing more hours of caregiving,” she said. “There was a greater impact on their work. There was a greater impact on their health. Financially, there were greater impacts with those people. And, if you were one of the higher-hour caregivers, you were doing more intense caregiving, as in personal care: bathing, dressing, feeding, toileting, transferring.”
Gwynne fits into that higher-hour category, estimating that her caregiving responsibilities take up at least 20 hours a week. She helps her father with his finances, brings him to church and the Senior Center or arranges for his transportation, and takes him to and from his medical appointments.
“We make sure that he feels like he has a life, and we make sure that he’s cared for,” she said.
Even though her father’s personal care needs are managed by his nursing home, Gwynne finds herself responsible for making sure they are all consistently met.
“Even if they are in a facility, you still have to be their advocate,” she said. “If somebody were to go into a hospital or somebody were to go into a nursing home — even if it’s the Ritz-Carlton of nursing homes — the only person who’s going to make sure he has his nails cut and that he’s showered frequently and that his hair is cut is someone who’s a family member. You have to watch them.”
“Now that I think about it, 20 hours per week is probably too short,” Gwynne said.
The sorts of tasks seniors need help with can be broadly classed into two categories: personal care tasks like feeding, dressing, and bathing, and tasks that support independent living, like balancing a checkbook, driving, and grocery shopping.
More than half of all caregivers help with at least one personal-care task, and all help with at least one independent-living task. Plus, like Gwynne, they often act as advocates for the care recipient, keeping an eye on their medical condition and interfacing with health professionals.
Nearly 60 percent of caregivers also help with “medical/nursing tasks,” jobs that are traditionally the responsibility of a nurse, like giving injections, providing wound care, or working equipment like a hospital bed.
“The higher-hour caregiver group are doing many more hours of medical/nursing tasks,” Hunt said. “And that’s also a stressor.”
Career and money
When she started caring for her father, one of Gwynne’s first thoughts was, “Should I quit my job?” She works full-time in Boston as a finance director, and her career has “absolutely” been affected by her added family responsibilities, she said, although her workplace has made efforts to accommodate her.
“When I used to be always on top of stuff, I feel like I’m just holding it together, and I’ve had to learn to deal with that,” she said.
Gwynne’s experience is typical, according to Caregiving in the U.S. 2015. A majority of caregivers reported making changes to their work schedule — taking a leave of absence, decreasing their hours, retiring early — to balance their caregiving responsibilities.
A 2011 study found that, on average, the total amount of lost wages, lost Social Security benefits, and lost pension for a caregiver who alters his or her work schedule is more than $300,000.
So being a caregiver can bring physical, emotional, and financial strain, Caregiving in the U.S. 2015 found. Thirty-eight percent of all caregivers reported high levels of emotional stress, and around 20 percent reported significant physical strain. Nearly 20 percent of caregivers reported major financial challenges stemming from caregiving.
In this, Gwynne counts herself lucky, because her parents saved in preparation for their retirement years. “As a caregiver, I think I have it pretty easy compared to some other people,” she said. “The financial issue is big.”
Joy and choice
This snapshot may be looking pretty grim so far, but there are upsides for caregivers as well. Studies have found that caregivers might live longer, and some caregivers report having an overall positive experience.
Gwynne has had the opportunity to deepen her relationship with her father by caring for him, she said: “He really is a total joy. He always says thank you; he enjoys your presence; he’s never grumpy; he never complains.”
About half of caregivers reported that they did not have a choice in whether or not to become a caregiver, according to Caregiving in the U.S. 2015.
For Gwynne, it was a question of duty.
“I love my dad,” she said. “And I have been blessed with two great parents. So there was not really a choice.”
The lack of choice can be challenging for caregivers, Hunt said. “They had greater stress; they feel psychologically like this is more of a burden for them.” Other stressful circumstances include living with the care recipient and caring for someone with dementia, she added.
Even though it’s very stressful, “I feel good because I’m doing my job,” Gwynne said.
Where to turn (in Massachusetts)
There are resources available for caregivers “if you know where to turn,” Gwynne said. The Center at Punchard, Andover’s senior center, has been “a great resource…The more you get into it, the more you learn.”
Her father frequently visits the center, where he is able to spend time and socialize.
Gwynne knows there are support groups out there for family caregivers, which she said she should go to, “but I have no time.”
That’s a challenge that the Massachusetts Executive Office of Elder Affairs is trying to combat.
“We certainly want more people to be able to be at home and living and aging in their own communities, but that’s a burden on caregivers if we don’t have the right resources in the community to support caregiving,” said Alice Bonner, secretary of the Executive Office of Elder Affairs.
“Massachusetts’ network of aging services is anchored by Aging Services Access Points, which offer a range of programs, including some for caregivers, Bonner said. Massachusetts is the only state in the nation with these access points.
It might be hard for a caregiver to access services like support groups because it would mean leaving the care recipient home alone, Bonner said. So certain programs encourage the caregiver and recipient to attend together.
When caring for someone with dementia, it can be challenging to communicate and keep your cool, Bonner said. How do you help manage the mood of someone with Alzheimer’s or dementia who becomes agitated or distressed?
“If you haven’t trained as a health-care professional, families can very often benefit from some sort of formal training,” Bonner said. Some programs are designed to help build communication skills, while others might help caregivers with medical tasks.
While the training can be web-based, in-person training tends to be particularly effective, Bonner said, because “you get a group of folks who can be a sort of support group for one another.”
Community members are also vital to caregivers.
“Sometimes people get very isolated because their friends and neighbors stop coming, Bonner said. “That isolation is a real problem for caregivers…Even if it’s just for half an hour, go have a cup of coffee, offer to go buy groceries, or go for a walk with the caregiver. These are simple things and they can really make a big difference.”
There’s room to do more to support family caregivers, Bonner said. Respite care could use expansion, along with building ties with community organizations not devoted to aging, like schools or the clergy.
“There’s not really a one-size-fits-all model,” she said.
Fewer caregivers, doing more
Caregiver demographics are evolving, Hunt said. “It appears that there are fewer family caregivers, but they are doing more intense caregiving.”
Almost 10 percent of caregivers are 75 years old or older, according to Caregiving in the U.S. 2015.
“You think of the physical strain that caregiving could put on the 75-to-80-year-old caregiver who’s trying to lift someone, or transfer them, or just deal with all the day-to-day issues,” Hunt said.
Gwynne’s mother was one of those older caregivers, Gwynne said, and she had to manage her usual household responsibilities while taking on her husband’s. “It was very, very hard. She was exhausted all the time.”
“She was having to make sure he shaved, make sure he showered,” Gwynne said. “That changes everything in a relationship.”
Caregiving in the U.S. 2015 found that about 40 percent of caregivers are male, a significant increase from previous decades.
“When I first started working in caregiving, the rule of thumb which you always heard in surveys was 25/75 [male/female]. As we move closer to a 50/50 split, caregiving becomes somewhat less of a ‘women’s issue,’ and it becomes an issue for everybody. And that could have political consequences.” [[who said this??]]
Indeed, there is some legislative movement on supporting family caregivers. In July, the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act was introduced in the U.S. House of Representatives.
It would require the federal Department of Health and Human Services to create a National Family Caregiving Strategy and a Family Caregiving Advisory Council. (The AARP support statement for the act is here.)
Caregiving in the U.S. 2015 also made several recommendations to improve the caregiver experience:
• Target the caregivers with the highest risk of burning out.
• Help family caregivers who are struggling with balancing work and family – “Employers need to play a greater role in offering caregiver support to employed caregivers,” Hunt said.
• Give caregivers resources when they’re first starting out and struggling with the transition.
• Increase training available for caregivers. “An alarming number of people who are doing these medical/nursing tasks never had any training at all,” Hunt said. “We need to give caregivers training in in specific tasks like wound care, but also tasks around behavioral issues.”
• Encourage families to make plans for what happens if the caregiver stops being able to provide care
“Caregivers typically don’t self-identify,” Hunt said. “They’re just doing what every good daughter would do, or what every good husband would do. It’s not easy to identify then and reach them.”
When Gwynne tells friends and co-workers that she cares for her father, many of them say they don’t know if they could do what she does.
“But you never think you’re going to have to, or that you could,” she said. “Then all of a sudden you might have to give your father a shower.”
Resources for family caregivers – A starting point:
If you live in Massachusetts, consult your local Council on Aging, Area Agency on Aging, Senior Center, or ASAP.
The Mass. Executive Office of Elder Affairs would like to hear from family caregivers statewide. If you have questions or suggestions, contact the office via its website.