Building a Family Caregiving Strategy to Align with the Real Needs of Families

Building a Family Caregiving Strategy to Align with the Real Needs of Families


Photo Courtesy of iStock

In workplaces and at kitchen tables across the country, Americans are grappling with a growing issue that touches so many of us: the enormous struggles we face when caring for relatives and friends who need ongoing help because of a chronic illness, disability, or a serious health condition.

Although family caregiving is an intensely personal issue, it also has become a critical public policy matter that can no longer be ignored. It touches just about every family in every state across party lines. That’s why a national conversation about the health, economic, and social issues facing family caregivers has never been more important. Equally important is finding public policy and private-sector solutions to effectively support caregiving families. We cannot afford to wait because the care gap is growing.  In just eight years (2026) baby boomers begin to turn 80 years old—the age when people are most likely to need long-term services and supports (LTSS).

Fortunately, policymakers are at last hearing the call.  Acknowledging the growing urgency to promote the well-being of caregiving families, Congress just passed the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act.

Rising Complexity, Greater Costs

Family caregiving in the U.S. is complex and characterized by many challenges.  An estimated 40 million family caregivers provide about $470 billion annually in unpaid care to their adult relatives, partners, or friends with limitations in daily activities; 60 percent of these family caregivers hold jobs on top of providing and coordinating care. Almost half (46 percent) perform complex medical/nursing tasks, including managing multiple medications, with little guidance or support. According to Caregiving in the U.S. 2015, another 3.7 million family caregivers provide care to a child under age 18 because of a medical, behavioral, or other condition or disability, and 6.5 million family caregivers care for both adults and children.

Research shows that family caregivers of persons with high care needs are at risk of financial hardships.  Family caregivers who cut back on work hours or leave the labor force due to caregiving demands may lose income, career opportunities, Social Security, and other retirement benefits.

A Policy Roadmap to Set Priorities

The RAISE Family Caregivers Act requires the Secretary of Health and Human Services to form a family caregiving advisory council to advise and work with the Secretary to develop a coordinated family caregiving strategy.  The strategy will recommend actions that communities, health and social service providers, government, employers, and others can take to address the increasing challenges facing America’s families in their caregiving role. Through the advisory council and mechanisms for public input, an array of stakeholders in the public and private sectors will build a foundation for new thinking and meaningful change.

The Act would implement the federal Commission on Long-Term Care’s recommendation that Congress require the development and implementation of a national strategy to support family caregivers. A National Academies’ Consensus Committee has also called for a family caregiving strategy that explicitly and systematically addresses the roles and needs of family caregivers in the nation’s health care and LTSS systems, and in workplaces.

Core Elements of a Family Caregiving Strategy

The RAISE Family Caregivers Act aims to promote greater adoption of person- and family-centered care, taking into account both the individual and the family caregiver in all health and LTSS settings.  It will also result in recommendations on assessment and service planning for persons receiving care and their family caregivers, address financial security and workplace issues, and identify education and training supports and respite options, among other issues. In addition, the strategy could assist state and community efforts in recognizing and supporting caregiving families.

A Call to Heightened Action

With strong leadership and vision, the forthcoming strategy will recognize the centrality of family caregivers in American life.  In that strategy lies the opportunity to shift policy and practice toward the fundamental principle that support for family caregivers should be an integral part of our nation’s collective responsibility to help people with complex care needs—ultimately resulting in a more humane and caring society.

It’s been a long time coming.  Our voices are being heard.

 

Lynn Friss Feinberg, MSW, is a senior strategic policy advisor for the AARP Public Policy Institute.  She has conducted policy analysis and applied research on family caregiving and long-term services and supports issues for more than 30 years.

 

 

 

 



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Building a Family Caregiving Strategy to Align with the Real Needs of Families

Building a Family Caregiving Strategy to Align with the Real Needs of Families


Photo Courtesy of iStock

In workplaces and at kitchen tables across the country, Americans are grappling with a growing issue that touches so many of us: the enormous struggles we face when caring for relatives and friends who need ongoing help because of a chronic illness, disability, or a serious health condition.

Although family caregiving is an intensely personal issue, it also has become a critical public policy matter that can no longer be ignored. It touches just about every family in every state across party lines. That’s why a national conversation about the health, economic, and social issues facing family caregivers has never been more important. Equally important is finding public policy and private-sector solutions to effectively support caregiving families. We cannot afford to wait because the care gap is growing.  In just eight years (2026) baby boomers begin to turn 80 years old—the age when people are most likely to need long-term services and supports (LTSS).

Fortunately, policymakers are at last hearing the call.  Acknowledging the growing urgency to promote the well-being of caregiving families, Congress just passed the bipartisan Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act.

Rising Complexity, Greater Costs

Family caregiving in the U.S. is complex and characterized by many challenges.  An estimated 40 million family caregivers provide about $470 billion annually in unpaid care to their adult relatives, partners, or friends with limitations in daily activities; 60 percent of these family caregivers hold jobs on top of providing and coordinating care. Almost half (46 percent) perform complex medical/nursing tasks, including managing multiple medications, with little guidance or support. According to Caregiving in the U.S. 2015, another 3.7 million family caregivers provide care to a child under age 18 because of a medical, behavioral, or other condition or disability, and 6.5 million family caregivers care for both adults and children.

Research shows that family caregivers of persons with high care needs are at risk of financial hardships.  Family caregivers who cut back on work hours or leave the labor force due to caregiving demands may lose income, career opportunities, Social Security, and other retirement benefits.

A Policy Roadmap to Set Priorities

The RAISE Family Caregivers Act requires the Secretary of Health and Human Services to form a family caregiving advisory council to advise and work with the Secretary to develop a coordinated family caregiving strategy.  The strategy will recommend actions that communities, health and social service providers, government, employers, and others can take to address the increasing challenges facing America’s families in their caregiving role. Through the advisory council and mechanisms for public input, an array of stakeholders in the public and private sectors will build a foundation for new thinking and meaningful change.

The Act would implement the federal Commission on Long-Term Care’s recommendation that Congress require the development and implementation of a national strategy to support family caregivers. A National Academies’ Consensus Committee has also called for a family caregiving strategy that explicitly and systematically addresses the roles and needs of family caregivers in the nation’s health care and LTSS systems, and in workplaces.

Core Elements of a Family Caregiving Strategy

The RAISE Family Caregivers Act aims to promote greater adoption of person- and family-centered care, taking into account both the individual and the family caregiver in all health and LTSS settings.  It will also result in recommendations on assessment and service planning for persons receiving care and their family caregivers, address financial security and workplace issues, and identify education and training supports and respite options, among other issues. In addition, the strategy could assist state and community efforts in recognizing and supporting caregiving families.

A Call to Heightened Action

With strong leadership and vision, the forthcoming strategy will recognize the centrality of family caregivers in American life.  In that strategy lies the opportunity to shift policy and practice toward the fundamental principle that support for family caregivers should be an integral part of our nation’s collective responsibility to help people with complex care needs—ultimately resulting in a more humane and caring society.

It’s been a long time coming.  Our voices are being heard.

 

Lynn Friss Feinberg, MSW, is a senior strategic policy advisor for the AARP Public Policy Institute.  She has conducted policy analysis and applied research on family caregiving and long-term services and supports issues for more than 30 years.

 

 

 

 



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Moving Dementia Caregiver Support Services into the Mainstream

Moving Dementia Caregiver Support Services into the Mainstream


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.

 

 

 



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