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.
This week, the U.S. Senate began its consideration of the RAISE (Recognize, Assist, Include, Support and Engage) Family Caregivers Act – an important piece of legislation that would start a national conversation about ways to aid American’s greatest support system – family caregivers. Thanks to the leadership and support of Senators Susan Collins (R-ME), Tammy Baldwin (D-WI), Lisa Murkowski (R-AK), and Michael Bennet (D-CO) and Chairman Lamar Alexander (R-TN) and Ranking Member Patty Murray (D-WA) the bill was quickly approved by the Senate Health, Education, Labor and Pension Committee (which goes by the very appropriate acronym . . .HELP).
Every day, more than 40 million Americans across the country are caring for parents, spouses, children and adults with disabilities and other loved ones so they can live independently in their homes and communities for as long as possible. They manage medications, help a loved one with bathing and dressing, prepare and feed meals, arrange transportation to medical appointments (or do the driving themselves), handle financial and legal matters and much, much more. Many do all of this while working full-time and raising families.
The unpaid care family caregivers provide — a staggering 37 billion hours valued at about $470 billion annually — helps delay or prevent more costly care and unnecessary hospitalizations, saving taxpayer dollars.
I know from firsthand experience that caring for a loved one is a tremendous responsibility. As my two millennial sons and I care for my husband, their father, who has ALS, I know that, while my experience may be in some ways unique, I have much in common with my fellow caregivers. Every family caregiver I encounter – including the thousands who have shared their stories on AARP’s I Heart Caregivers – expresses a need for support, whether that means help at home, training, workplace flexibility, or the opportunity to get some relief from their caregiving responsibilities.
The RAISE Act Family Caregivers Act recognizes this tremendous need and calls for the development of a national strategy to support family caregivers, bringing together stakeholders from the private and public sectors to identify specific actions communities, providers, government, employers and others can take to make it easier to coordinate care for a loved one, get information, referrals and resources, and improve respite options so family caregivers can reset and recharge.
AARP commends the sponsors of the RAISE Family Caregivers Act — as well as the co-chairs of the bicameral, bipartisan Assisting Caregivers Today (ACT) Caucus — for their leadership on this important issue. They understand that family caregiving is not a Democratic or a Republican issue, or even an older or younger person’s issue. Recent research shows that a surprising one-quarter of Millennials are family caregivers. And, according to a poll we conducted, four-in-ten Millennials say that they are already worried about taking care of their parents on a day-to-day basis.
In fact, this is a family issue that touches us all. We are either family caregivers now, were in the past, will be in the future — or will need care ourselves one day.
Last year, we made tremendous progress on this important piece of legislation. This year, we look forward to working with the bill’s Senate and House champions – as well as other organizations that advocate for and support family caregivers as well as family caregivers themselves – to push this bill over the finish line.
Nancy LeaMond, chief advocacy and engagement officer and executive vice president of AARP for community, state and national affairs, leads government relations, advocacy and public education for AARP’s social change agenda. LeaMond also has responsibility for AARP’s state operation, which includes offices in all 50 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands.
You can follow her on Twitter @NancyLeaMond.
Photos: iStock/BraunS, iStock/ktaylorg, AARP
Photo courtesy of iStock
Being a family caregiver—that is, providing unpaid care to a parent, spouse, friend or other adult loved one—is hard work. It can also be rewarding work. The struggles, frustrations and stress associated with this caregiving journey cross gender lines. While the “typical” family caregiver is a 49-year-old woman who takes care of a relative, 4 out of 10 caregivers are men.[i]
Men, often due to societal perceptions, have been less likely to talk about the emotional and economic challenges of caregiving. For example, a male family caregiver in a recent focus group summed it up well: “My dad taught me that men don’t cry. I don’t want to be crying on somebody’s shoulder.” From the playgrounds to the basketball court, from television images to song lyrics, the stereotypical drumbeat of manhood is reinforced: Man-up. Be strong. Men are not supposed to cry. Do these sentiments—sometimes spoken, sometimes implied—sound familiar?
Such beliefs can have a lasting impact on the individual who must decide whether to conform to or combat these societal perceptions. They also have implications for industries and workers like health professionals and other service providers, who may not understand the multidimensional role men are playing in what society typically views as predominantly a woman’s role.
The role of family caregiver is one example. There are 40 million family caregivers in the United States helping with everyday activities and personal tasks ranging from bathing, dressing, wound care, and medication management to transportation and finance and more.
A recent AARP Public Policy Institute report found that men represent 40 percent of all family caregivers; that’s 16 million male family caregivers.
A diverse group in many respects, these husbands, brothers, sons, sons-in-law, partners, friends, and neighbors are joining—either by choice, obligation, or necessity—the army of family caregivers providing care across the country. They are breaking stereotypes and misconceptions. Contrary to popular belief, male family caregivers are not just managing finances or helping with housework. They are also assisting with dressing, bathing, and toileting as well as performing medical and nursing tasks such as injections, tube feedings and wound care.
Many men feel unprepared or uncomfortable taking on these tasks. Although most male caregivers agree that caregiving is stressful, very few reach out for help; they often avoid talking about their situation with others and don’t feel comfortable discussing the emotional challenges of caregiving.
In many cases, male family caregivers are caring for a spouse or partner. The PPI report shows that spousal caregivers in general face unique challenges, in part because they may lack an adequate support network.
However, there were differences between males caring for a spouse and those caring for a parent.
- They provide more hours of care, and are more likely to be primary caregivers with little to no support from other family members, compared to male family caregivers taking care of a parent or other relative.
- Men caring for a spouse reported having been a caregiver for a longer period of time than other unpaid male family caregivers (5.1 years compared to 3.9).
Caregiving is not easy for any caregiver, men included. A recently released series of videos highlight the unique experiences of male caregivers: a millennial caring for his wife and their young daughter, a partner sharing the challenges and triumphs of caring for a terminally ill partner, a traditional-style support group for African-American male family caregivers, and an organization that support a group of male family caregivers of partners with a terminal illness.
By seeing and then understanding these diverse experiences, challenges, and needs, we can develop tools and resources to meet this sizable and growing group of family caregivers where they are. Caregiving is an issue where men and women can work together to support one another along this important yet challenging path.
Jean Accius is vice president of livable communities and long-term services and supports for the AARP Public Policy Institute. He works on Medicaid and long-term care issues.