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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New Year’s Resolution: Have Those Hard Conversations about Long-Term Care

New Year’s Resolution: Have Those Hard Conversations about Long-Term Care


The New Year offers us the opportunity to start anew. We make plans to hit the gym, sleep more, and eat healthier. We commit to spending more time with family and friends rather than merely clicking likes and posting comments on Facebook or sending emojis via text. We resolve to save more and stress less.  Many of us even create plans with specific strategies to increase the odds we’ll be successful in reaching our goals.

Yet there are those areas of our lives we prefer not to think about. For millions of people, planning for the possibility of long-term care—that is, help with basic life functions like eating, bathing, dressing, managing medications and finances—is one thing we tend to avoid. In fact, we avoid even discussing the topic, and that goes both for care for ourselves as well as for loved ones. According to a survey by The AP-NORC Center, more than two-thirds of older adults have done little to no planning for their long-term care needs. In short, we are in denial, so we’re not preparing.

I know how hard broaching the topic can be. Some months ago, I was chatting with my aunt while watching one of her favorite TV shows. My aunt has been by my side and has borne witness to all my major milestones in life. From school plays and college graduations to my wedding and birth of my two kids, she’s been right there.

In the course of our casual chat, she suddenly got serious and turned to me. “Jean, I’m getting older,” she said. “We need a plan in place in the event I need help with taking care of myself.”

Given my professional background, you’d think I would have been eager to have this conversation. I’ll be honest: that was hardly the case. It’s one thing when you’re in your comfortable work realm of research and Power Point presentations; it’s another when the person who might someday need care is your beloved aunt. So, truth be told, on that day, I avoided the topic. She’s relatively healthy, I rationalized to myself. There’s plenty of time for that.

About 70 percent of people age 65 and older will need at least some form of long-term care, and 50 percent will need extensive services as they age.  I know, based on a recent report from Genworth, that the typical cost for a private room in a nursing home is about $100,000 a year. I am well aware of the fact that the average cost of assisted living is around $45,000, and 30 hours of home-care a week will run $35,000 a year. The latest edition of the AARP Scorecard, which examines the performance of long-term services and supports (LTSS) by state, found that the cost of LTSS is much higher than what even middle-income families can afford. In fact, in every state, the typical price of a year of nursing home care was twice as much as the typical household income among people 65 and older.

Despite all of this, I was not ready to face reality when it came to my aunt. The fear of the future and unknowns drove my denial. I suspect I am not alone and that many of you can relate to these feelings when you think of your own family.

Yet stories unfold every single day of families who never put a long-term care plan in place and are experiencing great challenges as a result. I surely don’t want to wait for crisis with my aunt to trigger these conversations. So starting this year, things will change. Countless resources and guides, such as AARP’s Prepare to Care Guide, are available to help families create a plan based on unique needs and circumstances. Rather than continue to live in denial, it is time to be proactive and face this head on.

There is no better time to start than today. I’m starting the conversation—yes, with my aunt, and with the broader community. Will you join me?

 

sywwvtcm_400x400-300x300Jean 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.

 

 

 

 

 

 



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New Year’s Resolution: Have Those Hard Conversations about Long-Term Care

New Year’s Resolution: Have Those Hard Conversations about Long-Term Care


The New Year offers us the opportunity to start anew. We make plans to hit the gym, sleep more, and eat healthier. We commit to spending more time with family and friends rather than merely clicking likes and posting comments on Facebook or sending emojis via text. We resolve to save more and stress less.  Many of us even create plans with specific strategies to increase the odds we’ll be successful in reaching our goals.

Yet there are those areas of our lives we prefer not to think about. For millions of people, planning for the possibility of long-term care—that is, help with basic life functions like eating, bathing, dressing, managing medications and finances—is one thing we tend to avoid. In fact, we avoid even discussing the topic, and that goes both for care for ourselves as well as for loved ones. According to a survey by The AP-NORC Center, more than two-thirds of older adults have done little to no planning for their long-term care needs. In short, we are in denial, so we’re not preparing.

I know how hard broaching the topic can be. Some months ago, I was chatting with my aunt while watching one of her favorite TV shows. My aunt has been by my side and has borne witness to all my major milestones in life. From school plays and college graduations to my wedding and birth of my two kids, she’s been right there.

In the course of our casual chat, she suddenly got serious and turned to me. “Jean, I’m getting older,” she said. “We need a plan in place in the event I need help with taking care of myself.”

Given my professional background, you’d think I would have been eager to have this conversation. I’ll be honest: that was hardly the case. It’s one thing when you’re in your comfortable work realm of research and Power Point presentations; it’s another when the person who might someday need care is your beloved aunt. So, truth be told, on that day, I avoided the topic. She’s relatively healthy, I rationalized to myself. There’s plenty of time for that.

About 70 percent of people age 65 and older will need at least some form of long-term care, and 50 percent will need extensive services as they age.  I know, based on a recent report from Genworth, that the typical cost for a private room in a nursing home is about 100,000 a year. I am well aware of the fact that the average cost of assisted living is around $45,000, and 30 hours of home-care a week will run $35,000. The latest edition of the AARP Scorecard, which examines the performance of long-term services and supports (LTSS) by state, found that the cost of LTSS is much higher than what even middle-income families can afford. In fact, in every state, the typical price of a year of nursing home care was twice as much as the typical household income among people 65 and older.

Despite all of this, I was not ready to face reality when it came to my aunt. The fear of the future and unknowns drove my denial. I suspect I am not alone and that many of you can relate to these feelings when you think of your own family.

Yet stories unfold every single day of families who never put a long-term care plan in place and are experiencing great challenges as a result. I surely don’t want to wait for crisis with my aunt to trigger these conversations. So starting this year, things will change. Countless resources and guides, such as AARP’s Prepare to Care Guide, are available to help families create a plan based on unique needs and circumstances. Rather than continue to live in denial, it is time to be proactive and face this head on.

There is no better time to start than today. I’m starting the conversation—yes, with my aunt, and with the broader community. Will you join me?

 

sywwvtcm_400x400-300x300Jean 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.

 

 

 

 

 

 



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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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AARP Announces 2017 State Capitol Caregivers and Super Savers

AARP Announces 2017 State Capitol Caregivers and Super Savers


In addition to advocating for older Americans in the halls of Congress, AARP staff and volunteers are working on the ground in all 50 states, Washington, DC, Puerto Rico and the U.S. Virgin Islands to make a difference in people’s lives through advocacy. This year, we have helped enact state policies to support more than 30 million family caregivers and provide thousands of workers with a new way to save for retirement.

Achieving these results took a lot of hard work and dedication from state legislators, governors and other elected officials. They worked together – often across party lines – to write, support, and advance commonsense policies that make people’s day-to-day lives a little bit easier and gives them more financial security in their retirement.

To recognize these elected leaders, AARP is proud to announce our fourth annual bipartisan class of Capitol Caregivers who fought to increase support for family caregivers and their loved ones along with our third annual bipartisan class of Super Savers who fought to help more Americans retire with confidence.

Capitol Caregivers
Every day, 40 million Americans help parents, spouses and other loved ones live independently at home, where they want to be. Family caregiving is a labor of love, to be sure, but it can also be a challenge. Care responsibilities can include providing transportation, cooking meals, managing finances, performing complex medical tasks, helping with bathing and dressing, and so much more. Sixty percent of family caregivers juggle full- or part-time jobs with their caregiving duties, and many are still raising their families.

AARP is fighting for commonsense solutions to make these big responsibilities a little bit easier—and we’ve seen real progress in states across the country.

AARP’s 2017 class of Capitol Caregivers recognizes 91 state legislators, five governors, one lieutenant governor, and one justice from more than 30 states, who advanced policies that:

A list of AARP’s 2017 Capitol Caregivers and the legislation they championed can be found here.

Super Savers
Today, 45 percent of working-age households have no retirement savings at all. At AARP, we believe everyone should be able to retire with confidence. That’s why we’re fighting for Work and Save plans that give more workers access to a payroll deduction retirement savings plan. Employees who are able to save for retirement out of their regular paychecks are 15 times more likely to save.

AARP’s third class of Super Savers includes six state legislators and two state treasurers who were integral to the passage of state-facilitated retirement programs in 2017.

A list of AARP’s 2017 Super Savers and the legislation they championed can be found here.

More work to do . . .
In 2018, AARP will continue to work with elected state leaders across the country to fight for the issues that matter to you and your families. To stay up-to-date on our progress, or get involved, sign up here.

More information
2014 Capitol Caregivers

2015 Capitol Caregivers
2016 Capitol Caregivers

2015 Super Savers
2016 Super Savers


Nancy LeaMond is AARP chief advocacy and engagement officer. She leads the organization’s Communities, State and National Group, including 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.

 



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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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