Many of you, like me, know that family caregiving for someone you love can be a source of deep satisfaction and meaning. But caring for a person with dementia, known as dementia caregivers, can exact an especially high emotional, physical and financial toll on family members themselves.
Dementia caregivers commonly experience more emotional upset, distress, isolation, and financial burdens than those caring for people with other illnesses who do not have dementia because daily care needs are progressive, complex, and frequently unpredictable.
More people are living at home with dementia and relying on their family to care for them
Addressing the needs of dementia caregivers is important because of the growing number of older people living at home with dementia who rely primarily on their families for help with basic tasks of daily living. According to a report from the Centers for Disease Control and Prevention (CDC), the proportion of people with dementia dying at home increased significantly between 1999 and 2014, from 13.9 percent in 1999 to 24.9 percent in 2014, underscoring the increasing numbers of people with dementia residing outside of a nursing home setting. This means that more people than ever are caring at home for someone living with dementia often without adequate and affordable support services, exacerbating the stresses all the more.
Part of that stress is the cost to families.
A recent study on the lifetime cost of dementia shows that families incur 70 percent of the total cost of care ($225,140 in 2015 dollars) for a person living with dementia. Medicare ($52,540) and Medicaid ($44,090) accounted for 30 percent of the total cost.
Taking care of dementia caregivers
Targeted care strategies, such as education, skills training, and counseling, can make a real difference in the daily lives of people with dementia and their family caregivers. It is especially important, for example, to have someone to talk to when help is needed to address the behavioral and psychological symptoms of dementia. Successful programs for dementia caregivers begin with the health or social service provider talking with the family caregiver about his or her unique needs, problems, strengths, and resources, in what is known as a caregiver assessment.
Although evidence-based programs hold promise to create more value in the lives of dementia caregivers, these proven services are still not commonplace in communities and available to the families who could benefit from them.
A new AARP Public Policy Institute paper highlights examples of successful dementia caregiver programs and services. The report also identifies several barriers to scaling up evidence-based programs, including health care and social service providers’ lack of knowledge about successful caregiver services, and limited technical assistance to help providers understand how to identify family caregivers who might benefit from such programs and services. Barriers also include a lack of integration of caregiver supports in existing systems of health care and long-term services and supports, and a lack of sufficient funding and payment mechanisms to adopt proven caregiver support services in practice settings.
The forthcoming National Research Summit on Dementia Care aims to shine a light on the need to accelerate the scaling up of evidence-based services for individuals living with dementia and their family caregivers. Advancing these programs to reach families who need them should be a priority at the federal, state and local levels.
Lynn Friss Feinberg is a senior strategic policy adviser for the AARP Public Policy Institute. She has conducted policy analysis and applied research on family caregiving and long-term services and supports for more than 30 years.
Earlier this week, AARP named HomeEXCEPT Inc. the Grand Prize winner of the AARP Innovation Champion Awards competition. The team was awarded $10,000 in cash for designing a homecare sensor that allows caregivers to monitor loved ones by using thermal sensors used to track movement.
The AARP Innovation Champion Awards was created to recognize and celebrate the extraordinary efforts of companies that are aligned with AARP’s core mission – to empower people to choose how they live as they age.
The AARP Innovation Champion Awards also honored six finalists, one in each of six categories: Health and Safety Awareness, Daily Essential Activities, Caregiver Quality of Life, Care Coordination, Social Well-being, Transition Support. Finalists came from Canada, Israel and Korea in addition to the United States and all demonstrated the importance of ageless design with their submissions.
The finalists and Grand Prize winner were selected by AARP’s panel of judges: Bill Horne, Executive Editor, AARP The Magazine; Rich Tehrani, Group Editor in Chief, TMC: Technology Marketing Corp.; Robin Raskin, Founder, Living in Digital Times; Patricia Moore, President, Moore Designs; Amy Goyer, Author and AARP’s Family and Caregiving Expert.
For the full list of winners per category, product descriptions and prizes, log onto www.aarp.org/innovationaward.
When Eric Epstein, 56, a lawyer from New York City, learned that his 83-year-old father, Bill, had fractured his right hip while vacationing in Utah, he was on the next plane. “I wanted to make sure he was getting quality care in an unfamiliar hospital,” Epstein recalls. When the doctors determined a few days later that Bill would need a second surgery, Eric was instrumental in booking the return flights to NYC, arranging for transportation, wheeling his 6’4”, 250-pound father onto the plane, and transferring him carefully from the wheelchair to his seat.
Now that Eric’s father is recovering at a nearby rehab facility, Eric visits at least four days a week (often after a long day at work) to check on his progress, and will help prepare his mother to prepare their apartment when Bill gets the green light to return home in a few weeks.
Eric is one of 16 million male family caregivers in the U.S. Like their female counterparts, male caregivers are often called upon to perform a range of tasks—from managing finances and grocery shopping to housework and meal prep as well as challenging medical and nursing tasks.
When I hear Eric’s story—and when the AARP Public Policy Institute releases research on this important topic—I’m struck by the fact that the male population traditionally isn’t recognized for performing caregiving tasks. Yet there are many of them, and they’re rising to the challenge.
Leading the Way on Male Caregiver Research
Until recently, not much research was available that examined the impact of caregiving on male family caregivers, whether they’re caring for a parent, spouse, other relative, or even a neighbor or friend (also included in the term family caregiver). It’s a topic I’ve long wanted the Public Policy Institute to explore, so that’s what we’ve done. In March we released a report by my colleague Jean Accius, PhD, “Breaking Stereotypes: Spotlight on Male Family Caregivers,” that provides current information about the experiences and challenges facing this important segment of our health care system. A major takeaway from the report is that, contrary to many people’s assumptions, men represent four in 10 family caregivers.
Since the report’s release, Jean, who serves as VP of livable communities and long-term services and supports for the AARP Public Policy Institute, has become a go-to source on the topic for media outlets including Forbes and ESPN’s The Undefeated. And, of course, he’s blogged on the topic for our website.
One statistic that jumped out at me from the research is that nearly two-thirds of male family caregivers indicated that their caregiving experience was stressful, both physically and mentally. Male caregivers also are less likely than women to seek external support to deal with this stress.
Support Is Available
To help alleviate the stress and get the word out that support is available, we produced a series of videos, specifically targeted at the male caregiving community. Two of the videos focus on support groups in various communities that help men realize they’re not alone in their day-to-day struggles to care for loved ones.
With Father’s Day coming this weekend, I hope you’ll take the time to acknowledge any male caregivers in your life, and perhaps offer to take a task or two off of their plates. Running an errand on a relative or friend’s behalf may not seem as significant as a necktie or a set of golf clubs. But chances are, he’ll appreciate the effort as much as any gift you could buy.
Are you a male caregiver, or do you live with one? If so, please share how you (or he) keep(s) stress at bay. I would love to share your tips in a later post.
Last week, U.S. Senators Joni Ernst (R-IA), Michael Bennet (D-CO), Shelley Moore Capito (R-WV), and Elizabeth Warren (D-MA) and U.S. Representatives Tom Reed (R-NY) and Linda Sánchez (D-CA) introduced the bipartisan Credit for Caring Act (S. 1151/H.R. 2505) and AARP endorsed the legislation. The bill would help support America’s family caregivers by offering a federal tax credit for those who qualify.
“One of the biggest stresses of being a family caregiver is the financial strain from taking care of a loved one. As a result, this puts many of us into financial peril,” said Amy Goyer, AARP’s Family and Caregiving Expert and a family caregiver, herself.
Like many family caregivers, Amy takes on huge responsibilities that can be overwhelming, exhausting — and frequently financially challenging.
Much of Amy’s salary goes to caring for her 93-year-old dad with lives with Alzheimer’s. She takes care of everything from mortgage payments to medications. In addition to their basic needs, Amy is also responsible for keeping her father’s service dog Jackson healthy, sometimes she pays a person to keep their home clean and she even hires in-home care to help her father when she travels.
Last year, family caregivers spent roughly $7,000 on average – or nearly 20 percent of their income — on out-of-pocket costs providing care for their loved ones. And on average, long-distance family caregivers spend nearly $12,000 last year to care for their loved ones.
On top of the out-of-pocket costs associated with caregiving, some family caregivers work part-time or quit their jobs altogether to care for their loved ones. Family caregivers are also dipping into their personal savings, cutting back on their personal spending, and saving less for their own retirement to care for others.
Amy thinks, “the Credit for Caring Act could help provide some financial relief to reduce the caregiving costs for millions of eligible family caregivers across the country who work.”
To qualify for the Credit for Caring Act, taxpayers must be: an eligible family caregiver who pays or incurs qualified expenses for providing care to a spouse, child, parent or other qualified individual with long-term care needs and also earn an annual income of more than $7,500.
For more information on AARP’s advocacy to support family caregivers, visit www.aarp.org/supportcaregivers.
In a statement today following the release of the White House proposed budget, AARP Chief Advocacy and Engagement Officer Nancy LeaMond opposed cuts that would harm American families:
“AARP opposes the budget proposed today because it explicitly harms the very people we are counting on the President to protect. Today’s budget proposes to cut Social Security benefits, as well as funding for critical health, hunger, housing, and transportation assistance to low and middle income seniors. This budget sends a powerful message to older Americans and their families that their health and financial security is at risk.”
“We do want to acknowledge the Administration’s paid leave proposal. Although it must be improved so that it addresses the workplace needs of all family caregivers, we hope that it leads to a national conversation about ways to support family caregivers in the workplace.”
AARP is the nation’s largest nonprofit, nonpartisan organization dedicated to empowering Americans 50 and older to choose how they live as they age. To learn more, visit AARP online.
With this being the week of Mother’s Day, it’s a good time to highlight a less-talked about role of many women. As an AARP Public Policy Institute report recently discussed, six out of 10 family caregivers are female. (By “family caregiver,” I mean those who aren’t paid to help an ill or infirmed family member.) Particularly at this time of year when we honor mothers, it’s important to remember that many of these women care for parents or a spouse while simultaneously raising children—a difficult juggling act no matter how good of a multi-tasker you are!
Adding to that, the caregiver’s role has become more challenging over time. While family caregivers once focused mainly on assisting with the activities of daily living and social support, the first nationally representative study of family caregivers providing complex care activities, co-published by AARP Public Policy Institute and the United Hospital Fund with PPI leading the research, found otherwise. The study’s findings revealed that half of caregivers were performing “medical/nursing tasks” including but not limited to the following:
- Administering multiple medications (including injections)
- Providing wound care
- Managing colostomies
- Inserting catheters
- Giving tube feedings
With the pressure to perform tasks typically relegated to health care professionals, it’s no wonder 41 percent of caregivers report high levels of emotional stress.
Fortunately, AARP, working with its state offices and other stakeholders, has advanced state-level legislation that addresses the need to support family caregivers. That support comes primarily from nurses, who offer instruction on medical/nursing tasks as part of a patient’s discharge plan. As part of the legislation—called the Caregiver, Advise, Record, Enable (CARE) Act, which is now the law in 38 states and territories—patients have the right to designate a family caregiver who is named in the patient’s hospital record. Designated caregivers are then directly involved in the discharge planning and are offered instruction in how to perform any complex tasks they’re expected to perform.
The end result: When family caregivers leave the hospital with patients at their side, they will have received any needed information or training. Rather than feeling alone and lacking support and information, they can feel secure knowing that their daily caregiving tasks have been thoroughly explained by a health care professional and any questions have been addressed to their satisfaction.
To further ease caregivers’ concerns once they’ve returned home with the patient, AARP Public Policy Institute has created a new initiative: a Home Alone Alliance of organizations committed to producing resources such as teaching videos, which help with everything from Preparing Your Home for Safe Mobility to What to Do When Someone Falls. (In my next post, I’ll blog more about some new and exciting video releases that we have planned for the coming months.)
Of course, women aren’t the only ones serving in the family caregiving role; millions of men are taking up the task as well. We’ll discuss them in a blog next month, when another day celebrating parents comes around.
But this month it’s time to honor mothers, including those performing family caregiving duties. And as for the rest of the year, it’s good to know that tools like the CARE Act and teaching videos are there to support caregivers year-round.