Family Caregiving and Alzheimer’s Disease in an Aging America: The New Frontier

7/31/2019 Family Caregiving and Alzheimers Disease in an Aging America: The New Frontier

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Title text here

Family Caregiving and AlzheimersDisease in an Aging America:The New Frontier

Lynn Feinberg, MSWSenior Strategic Policy AdvisorAARP Public Policy Institute

National Press Foundation

May 21, 2012


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Latest research and trends in family caregivingFocus on Alzheimers

Top 10 Caregiving Themes

Call to Action

Overview

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Family Caregiver Broad Definition

Any relative, partner, friend or neighbor who has asignificant relationship with, and who provides a broadrange 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.

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Valuing the Invaluable

In 2009, about 61.6 million family caregivers inthe U.S. provided 40.3 billion hours of care toan adult with limitations in daily activities at somepoint during the year

The estimated economic value of their unpaidcontributions 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. 4


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How Many Adults are Caring for aPerson 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 17.4billion 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 theOld Days

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The Big Disconnect

Lack of understanding of the complexity of caregiving today, and thehuman 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 processyet 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 becomingincreasingly shared concerns

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Families Are Deeply Worried

For many American families inthe midst of caregiving for afrail older adult, there is deepworry about quality of care andquality of life Families dont know who to call or

where to go, to get the right kindof affordable help when they needit

Deep frustration and a sense of hopelessness about our healthcare and LTSS system whenyou are going through it

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Family Caregivers

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Dementia caregivers haveheavy care tasks for a long time

Dementia has a huge impacton the lives of the family,especially the primaryfamily caregiver

Often overwhelming

Duration of caregiving istypically longer for ADcaregivers as comparedwith non-AD caregivers

More likely than other familycaregivers to:

Provide help with personalcare (bathing, dressing,

feeding, toileting) Arrange and supervise

paid direct-care workers Deal with behavior

problems

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Whats Different About CaregivingNow From in the Past? Frequently assist with transportation needs

Families and friends provide 1.4 billion trips/year for olderrelatives (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 conditionsas well as provide LTSS at home Impact of shorter hospital stays; discharging sicker and quicker

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Whats Different About CaregivingNow From in the Past?

Estimated 23% to 53% of family caregivers are carryingout 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 familycaregivers View what they do in terms of their relationship with the other

person, for example: wife, partner, daughter-in-law, son, niece, orclose friend

Providers and Coordinators as well as Receivers of servicesand 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 thecaregivers themselves Especially for family members caring for a person with Alzheimers disease

A vulnerable and at-risk population that the health careand 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 14


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Health Impacts

Early research focused on mental health

More recent studies find negative impacts on physicalhealth

An estimated 17% to 35% of family caregivers of adultsrate their own health as fair to poor Poorer physical health than non-caregivers (16%)

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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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Mental Health Problems

Caregivers commonly experience strain and mental healthproblems

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%) familycaregivers said that caring for a loved one was their#1 source of stress ahead of the poor economy andother family health problems

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Greater Social Isolation

Caregivers frequently experience social isolation from aloss of social contacts

Little free time for themselves or to be with others

More than half (52%) say that their caregivingresponsibilities take them away from friends or family

members (NAC and AARP, Caregiving in the U.S. 2009)

Caregivers who experience social isolation also experiencehigh levels of stress

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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 aboutbeing 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 householdfinances (Kaiser Womens Health Survey, May 2011)

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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). 20


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Costs of Caregiving:Families At RiskHigh Out-of-Pocket Costs

When the person with Alzheimers moves to a nursinghome, 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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Impact of Caregiving on Work

74% of family caregivers have worked at a paying job at some pointduring 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, C aregiving in the U.S. 2009 )

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Lost Wages and Retirement for Caregivers

Recent analysis estimates $303,880 , on average, in lostincome 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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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/perFT 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 employedcaregivers compared to non-caregiving employees (MetLife Mature MarketInstitute, NAC, & University of Pittsburgh, 2010)

While 71% of employed caregivers report that their employer isaware of their caregiving role, only about 25% of workers have

access to elder care programs that could help them (Gallup Inc., 2011) 24


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Family Caregivers Fill Big Gapsin Health Care and LTSS

Increased demands and budget cuts for HCBS place moreresponsibilities 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 servicesprograms

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 nursinghome care What most Americans value and want

Depends greatly on family caregivers

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Trends Suggest Increasing Relianceon 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 27


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The Challenges of Caregiving:Top 10 Common Themes

1. Caregiving is a Role and Relationship

2. Families Benefit from DiscussingPreferences and Decision Makingwith each Other and with HealthCare Professionals

Americans are especially fearful of a spouseor parent suffering from Alzheimers oranother dementing illness

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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


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3. Long-Term Services & Supports (LTSS) areExpensive

4. Communication,Coordination, & Collaboration are

Fundamental to GoodCare

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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5. The Most Vulnerable & TraumaticPoints in Health Care & LTSS areTransitions from One Setting to

Another

6. Some Help & Support to Care for theCaregiver is Available if it can beFound

7. Being Proactive is the Key

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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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8. Public Policy Solutions areCrucial

9. Advocacy, at Both theIndividual & System Levels, isa Fundamental Part of Caregiving in Todays World

10 . Culture Change is Needed

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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

Families often tell us that participating in advocacy

efforts is a way to fight back against this terrible disease. -- Rabins, p. 244


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A Call to Action: Policies toBetter Respond to the Needsof Family Caregivers

Promote Greater Public Education and Awareness

Develop Better Communication, Coordination, andCollaboration with Health Care and Social ServiceProfessionals

Increase Financial Relief

Heighten Recognition of and Support for FamilyCaregivers in Policy Initiatives

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Questions?

Lynn [email protected]

202-434-3872

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mailto:[email protected]:[email protected]

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Family Caregiving and Alzheimer’s Disease in an Aging America: The New Frontier

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