Caring for Family Caregivers

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Caring for Family Caregivers

• Susan H. McFadden
• University of Wisconsin Oshkosh

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The changing nature of family caregiving

• Long-term care is most often provided by families
  not nursing homes!
• About 44 million adults, age 18 provide family
  care
• In 2000, unpaid family caregiving had an
  estimated value of 257 billion! This is more
  than nursing home care (92 billion) home
  health care (32 billion)

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Social changes affecting caregiving

• More women working
• More geographic dispersion of families
• More men are providing care
• This means more long-distance caregiving by
  people who are working full-time.

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Changes in healthcare

• Shorter hospital stays
• Limited discharge planning
• Growth in home healthcare technology the home
  healthcare industry can turn a home into a
  hospital!
• Families are carrying out more medical tasks
  (often with little training support)

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Changes in research

• ADLs identified in the 1950s
• IADLs identified in the 1960s
• Recognition that caregiving is more than
  assisting with ADLs and IADLs
• Other caregiving responsibilities that
  researchers need to address

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The family caregiving career

• A career no one chooses
• A career that often begins very gradually, often
  before one notices

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Why dont people call themselves family
caregivers?

• People (especially women) feel caregiving is
  naturally expected of them
• Acknowledging that you are a caregiver is an
  admission that theres been a big change for
  yourself and for the one you love
• Some people think this implies a loss of
  closeness
• People may think it denies the dignity of the
  other
• The definition is unclear

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Research on accepting the self-definition of
family caregiver

• AARP study (2001)
• Over 4000 people interviewed by phone
• People who identified with the term caregiver
  were more involved in activities that helped them
  manage their responsibilities they were more
  willing to ask for support

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Everybodys story is a bit different

• My mom felt exhausted because of
• the physical strains
• the emotional strains, especially shame
• my dads inability to empathize with her
• guilt over feeling anger at him
• loneliness
• limitations on her life
• her reluctance to ask for help

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What family caregivers say they need

• Information and skills
• Respite
• Availability of high quality, affordable services
  when they can no longer provide care

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Research findings on family caregiving

• a vulnerable and at-risk population that the
  health and long-term care system neglects
  (Family Caregiver Alliance, 2006)
• Health risks (heart disease, hypertension, poorer
  immune function, slower wound healing)
• Mental health problems (especially depression
  30-40 of dementia caregivers have depression)
• Less preventative self-care (e.g., infrequent
  mammograms little exercise poor diet)

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Hassles and uplifts of dementia caregivers
Kinney Stephens, 1989

• Care-recipient characteristics predict
• hassles
• Confusion
• Forgetfulness
• Agitation
• Mental decline
• Not cooperating
• Incontinence
• Being withdrawn/
• unresponsive

• Caregiver characteristics predict
• uplifts
• Being calm
• Pleasant interactions with family
• Being responsive
• Showing affection
• Friends understand caregiving demands
• Family understands caregiving demands

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Whats missing from this diagram?

• Each person experiences caregiving in a unique
  way
• People can experience both hassles uplifts
• People can remain hopeful in very difficult
  circumstances
• We can discover and/or create meaning even when
  experiencing suffering

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Types of support that are helpful to caregivers

• Religious beliefs and participation
• Counseling
• Coordinated information from professionals
• Informal support from family, friends, and others
  in the community

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Challenges for the future

• Public policy and practice
• Research and practice
• Community attitudes

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Resources on caregiving

• Family Caregiver Alliance National Center on
  Caregiving
• http//www.caregiver.org/caregiver/jsp/home.jsp
• Caring Connections National Hospice and
  Palliative Care Organization
• http//www.caringinfo.org/
• Hospice Foundation of America
• http//www.hospicefoundation.org/
• Strength for Caring a caregiving manual
  (sponsored by Johnson Johnson)
• http//www.strengthforcaring.com/manual/index.html
  

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QUESTIONS?
If your question is not answered during this QA
session, you may email the presenter at
mcfadden_at_uwosh.edu
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Dont Forget Your Free Copy of Aging in Stride
NCOA and Caresource are pleased to offer
first-time registrants for this Healthy Aging
Briefing Series a complimentary copy of the book,
Aging in Stride, which includes the new
supplement Just In Case Emergency Readiness for
Older Adults and Caregivers. To receive your
copy, please visit www.AgingInStride.org/NCOAoffer
. Or just email service_at_caresource.com with your
name, title, organization, mailing address, phone
number, and date of the Briefing you participated
in. One free copy per registrant, please.