Family Caregiving and Alzheimers Disease in an Aging America: Title text here The New Frontier

National Press Foundation May 21, 2012

Lynn Feinberg, MSW Senior Strategic Policy Advisor AARP Public Policy Institute

Overview
Latest research and trends in family caregiving
Focus on Alzheimers

Top 10 Caregiving Themes Call to Action

Family Caregiver Broad Definition

Any relative, partner, friend or neighbor who has a significant relationship with, and who provides a broad range of assistance for, an older person or an adult with a chronic or disabling condition. The average U.S. caregiver is a 49-year-old woman who works outside the home and spends nearly 20 hours/week providing unpaid care to her mother for nearly 5 years.

Valuing the Invaluable

In 2009, about 61.6 million family caregivers in the U.S. provided 40.3 billion hours of care to an adult with limitations in daily activities at some point during the year

The estimated economic value of their unpaid contributions was about $450 billion in 2009 from an estimated $375 billion in 2007
Source: Feinberg, Reinhard, Houser & Choula Valuing the Invaluable: 2011 Update, The Growing Contributions and Costs of Family Caregiving , AARP Public Policy Institute, 2011.

How Many Adults are Caring for a Person with Alzheimers or Other Dementias? An estimated 15.2 million adults provide unpaid care for a person with AD or other dementias These caregivers provide an estimated 17.4 billion hours of unpaid care Care valued at $210.5 billion in 2011
Source: Alzheimers Association, 2012 Alzheimers Disease Facts and Figures .
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Family Caregiving in the Old Days

The Big Disconnect

Lack of understanding of the complexity of caregiving today, and the human toll on those receiving AND giving care.until it happens to

you

Huge denial Scary Ideological barriers

Family members are often invisible in the care process yet they:
Provide the bulk of everyday care Are most likely to arrange and coordinate care Face their own health and financial risks

Poor care experiences are becoming increasingly shared concerns

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Families Are Deeply Worried

For many American families in the midst of caregiving for a frail older adult, there is deep worry about quality of care and

quality of life

Families dont know who to call or where to go, to get the right kind of affordable help when they need it

Deep frustration and a sense of hopelessness about our health care and LTSS system when you are going through it
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Family Caregivers
Provide emotional support and companionship

Dementia caregivers have heavy care tasks for a long time

Dementia has a huge impact on the lives of the family, especially the primary family caregiver
Often overwhelming

Duration of caregiving is typically longer for AD caregivers as compared with non-AD caregivers

More likely than other family caregivers to: Provide help with personal care (bathing, dressing, feeding, toileting) Arrange and supervise paid direct-care workers Deal with behavior problems

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Whats Different About Caregiving Now From in the Past?

Frequently assist with transportation needs
Families and friends provide 1.4 billion trips/year for older relatives (age 70+) who no longer drive Adult children provide 33% of these trips
(AARP PPI analysis of the 2009 National Household Travel Survey, Version 2.1)

Serve as both care coordinators and service providers

Navigating an increasingly fragmented and confusing health care and LTSS delivery system

Monitor chronic and sometimes acute medical conditions as well as provide LTSS at home
Impact of shorter hospital stays; discharging sicker and quicker
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Whats Different About Caregiving Now From in the Past?

Estimated 23% to 53% of family caregivers are carrying out health-related tasks Doing health-related tasks in the home with little training or preparation
Managing complex medication schedules Bandaging and wound care Tube feedings Managing catheters Giving injections Operating medical equipment Using sophisticated technology in the home
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Role Ambiguity
Many family and friends dont identify themselves as family caregivers
View what they do in terms of their relationship with the other person, for example: wife, partner, daughter-in-law, son, niece, or close friend

Providers and Coordinators as well as Receivers of services and supports

Not just a resource for the care recipient May also be a client an individual who may need training and support too
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Costs of Caregiving: Families At Risk

Family caregiving comes at substantial costs to the caregivers themselves
Especially for family members caring for a person with Alzheimers disease

A vulnerable and at-risk population that the health care and LTSS systems neglect
Physical health risks Emotional strain/mental health problems (depression) Social isolation Financial burdens Workplace issues Retirement Insecurity

Caring for persons with chronic conditions or disabilities is now viewed as a public health concern

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Costs of Caregiving: Families At Risk

Health Impacts

Early research focused on mental health

More recent studies find negative impacts on physical health An estimated 17% to 35% of family caregivers of adults rate their own health as fair to poor
Poorer physical health than non-caregivers (16%)

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Costs of Caregiving: Families At Risk

Caregivers face chronic health problems of their own and health risks
Heart disease Hypertension Stroke Poorer immune function Slower wound healing Sleep problems and fatigue Increased use of psychotropic drugs Premature death among highly stressed spouse caregivers Greater risk of dementia when spouse has dementia
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Costs of Caregiving: Families At Risk

Mental Health Problems

Caregivers commonly experience strain and mental health problems

Most pronounced among dementia caregivers; higher levels of burden and stress An estimated 40% to 70% of dementia caregivers have clinically significant symptoms of depression

In one online survey, more than 2 out of 3 (69%) family caregivers said that caring for a loved one was their #1 source of stress ahead of the poor economy and other family health problems
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Costs of Caregiving: Families At Risk

Greater Social Isolation

Caregivers frequently experience social isolation from a loss of social contacts Little free time for themselves or to be with others
More than half (52%) say that their caregiving responsibilities take them away from friends or family members (NAC and AARP, Caregiving in the U.S. 2009)

Caregivers who experience social isolation also experience high levels of stress
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Costs of Caregiving: Families At Risk

Financial Burdens The economic downturn has affected most American families, including those who are caregiving In 2009, more than 1 in 4 (27%) caregivers of adults reported a moderate to high degree of financial hardship from caregiving
(NAC and AARP, Caregiving in the U.S. 2009)

Caring.com online survey (February 2011):

60% of caregivers were concerned about the impact of providing care on their personal savings 51% said the economic downturn had increased their stress about being able to care for their relative or close friend

In a national survey of women ages 18 to 64, about 1 in 5 (21%) report that caregiving for an aging relative strains their household finances (Kaiser Womens Health Survey, May 2011)
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Costs of Caregiving: Families At Risk

High Out-of-Pocket Costs

Especially for family caregivers who are:

Low income Caring at a geographic distance long-distance caregivers

Caregivers of adults age 50+

Spend, on average, more than 10% of their annual income on caregiving expenses Those with lowest incomes (less than $25,000/year) spend more than 20% Long-distance caregivers have the highest annual expenses ($8,728)
(Evercare and National Alliance for Caregiving, The Economic Downturn and its Impact on Family Caregiving: Report of Findings, 2009).

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Costs of Caregiving: Families At Risk

High Out-of-Pocket Costs

When the person with Alzheimers moves to a nursing home, the financial costs to families are staggering: The median annual rate for nursing home care in 2012 $81,030 (private room)
Source: Genworth Cost of Care Survey 2012

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Costs of Caregiving: Families At Risk

Impact of Caregiving on Work

74% of family caregivers have worked at a paying job at some point during their caregiving experience
58% are currently employed

Of those caregivers who are employed, 69% report making work adjustments because of caregiving
Arriving late/leaving early, reducing work hours, changing jobs, stopping work entirely

Those most likely to make workplace accommodations:

Have the most intense level of caregiving (21+ hours of care/wk) Experience a high burden of care Live with the care recipient
(NAC and AARP, Caregiving in the U.S. 2009)

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Costs of Caregiving: Families At Risk

Lost Wages and Retirement for Caregivers

Recent analysis estimates $303,880, on average, in lost income and benefits for baby boomers age 50+ who leave the workplace to care for an aging parent
(MetLife Mature Market Institute, The MetLife Study of Caregiving Costs to Working Caregivers: Double Jeopardy for Baby Boomers Caring for Their Parents, June 2011)

$324,044 for women -$283,716 for men

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Costs of Caregiving: Families At Risk

Lost Productivity and Higher Health Care Costs for Employers

49% of the workforce expects to be providing elder care in next 5 yrs

(Families and Work Institute, October 2010)

Average estimated annual cost to employers in lost productivity/per FT employed caregiver = $2,110 (MetLife Mature Market Institute and NAC, 2006)
Costs include absenteeism, workday distractions, supervisory time, replacing employees, reductions in hours from FT to PT

Employers pay about 8% more for the health care of employed caregivers compared to non-caregiving employees (MetLife Mature Market
Institute, NAC, & University of Pittsburgh, 2010)

While 71% of employed caregivers report that their employer is aware of their caregiving role, only about 25% of workers have access to elder care programs that could help them (Gallup Inc., 2011)

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Family Caregivers Fill Big Gaps in Health Care and LTSS

Increased demands and budget cuts for HCBS place more responsibilities and economic burdens on families
Local AAAs have had a 67% increase in requests for caregiver support services since the economic downturn began in late 2007
(Source: U.S. GAO, Older Americans Act: More Should Be Done to Measure the Extent of Unmet Needs for Services, February 2011)

In FY 2010, 31 states cut non-Medicaid aging and disability services programs

In FY 2011, 14 states made more cuts In FY 2012, 11 additional states were expecting to cut HCBS
(Source: AARP PPI, Weathering the Storm: The Impact of the Great Recession on Long-Term Services and Supports, January 2011, and On the Verge: The Transformation of Long-Term Services and Supports, 2012)

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The Paradox
Policy direction toward more HCBS and away from nursing home care
What most Americans value and want Depends greatly on family caregivers

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Trends Suggest Increasing Reliance on Fewer Family Caregivers

Greater longevity but with multiple, chronic health conditions Higher rates of disability in old age Increasing diversity More women in the workplace
33% in 1960 to 47% in 2009

More long-distance caregiving Shortages of direct care workers Changes in family structure
Delayed marriage and childbirth High rates of divorce Smaller family size (less sibling support) Increasing numbers of childless women
Nearly 20% of older women are childless today, compared to 10% in the 1970s

The Future Looks Unlike the Past

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The Challenges of Caregiving: Top 10 Common Themes

1. Caregiving is a Role and Relationship
I came to dread the ring of the telephone: it might be my father on the floor, asking me to come over and pick him up, or it might be emergency medical services, summoned by a neighbor or the call button.
-- Rauch, p.56

2. Families Benefit from Discussing Preferences and Decision Making with each Other and with Health Care Professionals
Americans are especially fearful of a spouse or parent suffering from Alzheimers or another dementing illness

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The Challenges of Caregiving: Top 10 Common Themes

3. Long-Term Services & Supports (LTSS) are Expensive 4. Communication, Coordination, & Collaboration are Fundamental to Good Care
When you get old you begin to understand that no one talks unless someone listens, and no one knows nuthin less somebody else can understand. -- Mosley, p. 160.

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The Challenges of Caregiving: Top 10 Common Themes

5. The Most Vulnerable & Traumatic

Points in Health Care & LTSS are Transitions from One Setting to Another

6. Some Help & Support to Care for the Caregiver is Available if it can be Found 7. Being Proactive is the Key

All successful caregivers need to know three things: where to find help, how to arrange breaks, and how to cope with runaway emotions.
Sheehy, p. 221

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The Challenges of Caregiving: Top 10 Common Themes

8. Public Policy Solutions are Crucial 9. Advocacy, at Both the Individual & System Levels, is a Fundamental Part of Caregiving in Todays World
10. Culture Change is Needed

Families often tell us that participating in advocacy efforts is a way to fight back against this terrible disease. -- Rabins, p. 244

What we need is for our nameless problem to be plucked out of the realm of the personal and brought into full public view, where help can find us. -- Rauch, p. 58
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A Call to Action: Policies to Better Respond to the Needs of Family Caregivers

Promote Greater Public Education and Awareness Develop Better Communication, Coordination, and Collaboration with Health Care and Social Service Professionals Increase Financial Relief

Heighten Recognition of and Support for Family Caregivers in Policy Initiatives

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Questions?

Lynn Feinberg lfeinberg@aarp.org 202-434-3872

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