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.
A couple of weeks back, we unveiled our new caregiving ad – starring a unique caregiver. You may recognize him as the antihero from Machete or Breaking Bad, but you would never assume he’s just like you. That’s right, actor Danny Trejo is a caregiver and he is showing just how tough male caregivers are.
Although the typical family caregiver is a 49-year-old woman, there is a silent army of husbands, brothers, sons and friends – about 16 million– caring for their spouses, parents and other loved ones.
As family sizes shrink and the population ages, the number of male caregivers is only expected to rise, but they are often ignored in the caregiving conversation.
AARP, in conjunction with, the Ad Council is spotlighting this overlooked group through its new PSA campaign. The ad features Trejo performing the tough guy feats he is known for in films, alongside the everyday tough jobs a typical caregiver performs.
AARP’s new data profile on male caregivers shares insights on the level and type of care men provide, the challenges they face and more. Some of the key findings include:
- More than half of male caregivers (63%) are the primary caregiver for their loved one.
- Male family caregivers are helping their loved ones with personal care activities and more than half (54%) of male family caregivers perform medical and nursing tasks, such as injections, tube feedings, and wound care.
- Many men say they feel unprepared for these tasks and express discomfort providing intimate personal care (e.g. bathing, dressing, toileting).
- Men are less likely than women to reach out for help and feel uncomfortable discussing the emotional challenges of caregiving.
- More than one-third (37%) of male caregivers don’t tell their employers that they are juggling caregiving responsibilities at home.
In addition, AARP sharing stories of men rising to the challenge and offering their lesson’s learned with others.
Caregivers can find helpful tools, like the Prepare to Care guides and more at aarp.org/caregiving.
In 2016, an estimated 5.4 million Americans had Alzheimer’s disease, the most common form of dementia. And while people of all ages can have dementia, 8.8 percent of adults age 65 and over have the disease.
With greater longevity and rapidly increasing numbers of individuals with dementia, we are all likely to encounter a person living with dementia as we go about our lives. We may witness a person living with the disease facing any number of challenges in navigating the community. Given the stigma around dementia in our society, people with the disease may be uncomfortable asking for help, or they may avoid venturing out in public at all — resulting in their suffering still further, from isolation.
To address these challenges, Dementia Friendly America (DFA) has launched a new tool that we can use to educate ourselves about how each of us as individuals can best interact with and support people living with dementia. We can take a few very simple and quick steps to become Dementia Friends. According to Ron Grant, who lives with dementia and is cochair of DFA, “Since there is no cure for dementia diseases and disorders, being a Dementia Friend will help those of us living with dementia to continue to live well in community.”
Dementia Friendly America, a multisector collaborative that includes AARP and a number of other leading national organizations and funding partners, is catalyzing a movement to more effectively support and serve those across America who are living with dementia and their family and friend care partners. While DFA catalyzes community-wide efforts, the Dementia Friends initiative enables each of us as individuals to play our part.
Dementia Friends U.S. is modeled after an effort that began in the United Kingdom as a way to help people learn more about what it is like to live with dementia and turn that understanding into action. DFA is the Dementia Friends U.S. licensee and has collaborated closely with the U.K. to bring the best aspects of the program to the U.S.
The first step in becoming a Dementia Friend is learning to recognize the signs of dementia (or other cognitive impairment), which could include any of the following signs:
- Difficulty communicating
- Getting lost
- Becoming frustrated
- Repeating words or phrases
- Poor judgment
- Unusual or inappropriate behavior
It doesn’t matter if a person exhibiting these signs actually has dementia; what matters is that all people are equipped to respond appropriately and in a supportive manner. A series of short online training videos depicts situations where you may encounter someone living with dementia in a variety of community settings including a restaurant, grocery store, library or bank or on a public transit system — and provides information on how you can help in such situations. After viewing the videos, you can become a Dementia Friend by committing to an activity that will help someone in your community with dementia.
Take just a few minutes to become a Dementia Friend at DementiaFriendsUSA.org. You can also check out Dementia Friendly America to learn how DFA is fostering “dementia friendly” communities across the country and how your community can become a safe and respectful place for individuals and families that are addressing this disease.
As we say at Dementia Friendly America: Living with value and purpose in the community is a human right.
Stephanie K. Firestone is a senior strategic policy advisor, health and age-friendly communities, AARP International, and a member of the Dementia Friendly America National Council.