Session #B5a
October 6, 2012
WHAT FAMILY CAREGIVING
RESEARCH TELLS US ABOUT
COLLABORATION
Barry J. Jacobs, Psy.D.
Crozer-Keystone Family Medicine Residency Program
Springfield, PA
www.emotionalsurvivalguide.com
Collaborative Family Healthcare Association 14th Annual Conference
October 4-6, 2012 Austin, Texas U.S.A.
Faculty Disclosure
I have not had any relevant financial relationships
during the past 12 months.
Objectives
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Review research on family caregivers,
including caregiver morbidity, impact of family
caregivers on patient outcomes, and efficacy
of caregiver support programs
Identify family caregiving movement’s ideas
about increasing family-centered care
Discuss implications of caregiver research for
collaborating with family members in
integrated healthcare
Learning Assessment
A learning assessment is required for CE credit.
Attention Presenters:
Please incorporate audience interaction through a
brief Question & Answer period during or at the
conclusion of your presentation.
This component MUST be done in lieu of a written
pre- or post-test based on your learning objectives to satisfy
accreditation requirements.
TODAY’S TALK
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A burgeoning demographic and cultural
phenomenon
Whirlwind research tour: caregiver morbidity;
family effects on patients’ clinical outcomes;
components of effective caregiver support
programs
Calls for team inclusion of family caregivers
Implications for collaborating with family
members in integrated healthcare
FAMILY CAREGIVING IN US
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NAC/AARP 2009 study: 65 million Americans
providing care during the course of a given year (49
M for adults over age 50)
31% of all US households
Most typical: 48-year-old woman taking care of a
parent for about 4 years as well as working parttime
US CAREGIVING (cont.)
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Great heterogeneity—every family has its
story (and community and culture)
66% female; 34% male
72% white; 13% African-American; 12%
Latino
2.4 M grandparents; 1.3 M children as
caregivers
Range of emotional reactions: 31% highly
stressed; 25% not at all stressed
THE SAVAGES (2007)
THE DESCENDANTS (2011)
A SEPARATION (2011)
ROBOT & FRANK (2012)
CAREGIVING (cont.)
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$350 B economic value (AARP, 2007)
More than 5 M Alzheimer’s patients today; by 2050,
11.5-16 M (Alzheimer’s Association)—70% cared for
at home
Average life-span of Alzheimer’s pt at diagnosis: 7-8
years
Most common answer caregivers give when asked
(at pt’s diagnosis) how long they think they’ll have to
caregive: 2 years
The Caregiving Career
Aneshensel et al., 1995
Chronic Stress Trajectory
in Caregiving
Schulz, 2010
CG/
CR Trajectory
Psychologic
al Appraisal
Health
Effects
Placement
Initiate
IADL CG
Expand
ADL CG
Benign
Distress
Minor
Psychiatric/
Physical
Morbidity
Death
Death
Distress
Relief
Continued
Depression/
Recovery
Reengagement
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What are the medical and
psychological effects on family
members of caring for loved ones
with illness or disability?
RESEARCH ON CAREGIVING’S
EFFECTS ON CAREGIVERS
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Long-term Alzheimer’s dementia caregiving
(Schulz & Martire, 2004) linked with:
Insomnia
Depression and anxiety
Musculoskeletal problems (e.g., back pain)
Decreased immune system functioning
Decreased use of preventative medical
services
Increased mortality (Schulz, JAMA, 1999)
CAREGIVING’S EFFECTS (cont.)
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European Heart Journal (2012): Spouses of
fatal and non-fatal heart attack patients have
significantly higher rates of…
depression
antidepressant and benzodiazepine use
suicide
…after the medical event than spouses of
patients with other life-threatening conditions
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How do family caregivers affect
patients’ clinical outcomes?
RESEARCH ON CAREGIVING &
PATIENTS’ OUTCOMES
Family members commonly participate in
the care of patients
--Family members are present in one-third of
family medicine visits (Medalie et al, 1998)
The presence of family members can
improve the quality of medical visits
--Increases patient’s satisfaction with the
physician (Wolff, Roter, 2008, 2011)
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PT RESEARCH (cont.)
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Family members’ involvement and coping
can impact patients’ clinical outcomes
--Can decrease patient depression and
mortality (Martire et al, 2004)
--Can improve patients’ knowledge about and
attitude toward diabetes (Kang et al, 2010)
--Can increase survival time for Alzheimer’s
patients (Brodaty, 1993)
PT RESEARCH (cont.)
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Mary Mittelman’s NYU
Caregiver
Intervention—
increases caregiver
well-being, forestalls
nursing home
placement of
Alzheimer’s patients
for nearly 2 years
(2006)
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What does the research tell us
about designing the most
efficacious family caregiver
support programs?
SUPPORT PROGRAM RESEARCH
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Rosalynn Carter Institute: Elements of evidencebased support programs:
Frequent contact with helping professional over
extended period of time who has specific
intervention protocol of higher intensity
Provision of multi-components including
knowledge, skill-building, problem-solving,
counseling
Use of multiple means of contact including inperson, telephone, Internet
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What are the calls for family
inclusion on the integrated
healthcare team?
CALLS FOR INCLUSION
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AARP Public Policy Institute: “A Call to
Action” (2012, Reinhard, Feinberg, Choula)
Carol Levine advised that health care
professionals be incentivized to include family
caregivers as partners in care.
Suzanne Mintz explained that family caregivers
become care coordinators by default, because
the current system does not reimburse health
care professionals for care coordination.
CALLS (cont.)
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AARP Public Policy Institute, “Moving
Toward Person- and Family-Centered
Care” (Feinberg, 2012)
Assessing and addressing both the
individual’s and the family caregivers’
information, care and support needs and their
experience of care
Promotion of communication, shared decision
making, and empowerment
IMPLICATIONS FOR
COLLABORATION
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1) Collaborating with family members has the
potential to:
Improve patients’ satisfaction with medical
visits and enhance their clinical outcomes
Decrease family caregivers’ morbidity and
mortality
IMPLICATIONS (cont.)
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2) Family-centered care should focus on:
Empowering family members’ abilities to play
more effective care coordination roles
Provide disease- and treatment-specific
information to caregivers
Devise means of ongoing team-family
communication (e.g., visits, emails, portals)
Balance patients’ rights with reality of shared
decision-making with family members
REFERENCES
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National Alliance for Caregiving/AARP study (2009):
http://www.caregiving.org/pdf/research/FINAL_eConnected_Fami
ly_Caregiver_Study_Jan%202011.pdf
AARP, “Valuing the Invaluable” (2007):
http://assets.aarp.org/rgcenter/il/ib82_caregiving.pdf
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Alzheimer’s Association:
http://www.alz.org/alzheimers_disease_facts_and_figures.asp
Schulz, R & Martire, L (2004). Family caregiving of persons with
dementia: prevalence, health effects and support strategies, Am
J Geri Psychiatry, May-June, 12(3), 240-9
Schulz, R & Beach (1999). Caregiving is a risk factor for
mortality: the Caregiver Health Effects Study, JAMA, Dec.
15;282(23):2215-9
Aneshensel, CS et al (1995) Profiles in Caregiving, San Diego,
CA:Academic Press
REFERENCES (cont.)
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Schulz, R et al (2010) Measuring the experience and perception
of suffering. Gerontologist, Dec,50(6):774-84
Fosbol, E.L (2012). Spousal depression, anxiety and suicide after
myocardial infarction, European Heart Journal:
http://eurheartj.oxfordjournals.org/content/early/2012/08/20/eurhe
artj.ehs242.abstract
Medalie, JH et al (1998). The family in family practice: Is it a
reality?, J Fam Pract, 47(6):390-396Wolff, JL & Roter, DL (2008).
Hidden in plain sight: Medical visit companions as a resource for
vulnerable older adults, Arch Int Med, 168(13):1410-1415
Wolff, JL & Roter, DL (2011). Family presence in routine medical
visits: a meta-analytical review, Soc Sci Med, 72(6):823-31
REFERENCES (cont.)
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Martire, LM et al (2004). Is it beneficial to involve a
family member? A meta-analysis of psychosocial
interventions for chronic illness. Health Psychology,
23(6):599-611
Brodaty, H (1993). Time until institutionalization and
death in patients with dementia: Role of caregiver
training and risk factors. Arch Neurol, 50(6):643-50
Mittelman, M et al (2006). Improving caregiver wellbeing delays nursing home placement of patients
with Alzheimer’s disease, Neurology, Nov
14;67(9):1592-9
REFERENCES (cont.)
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AARP Policy Institute, “A Call To Arms”
(2012):
http://www.aarp.org/content/dam/aarp/research/public_p
olicy_institute/ltc/2012/Spotlight-Paper-Meeting-theChallenges-of-Family-Caregiving-AARP-ppi-ltc.pdf
AARP Policy Institute, “Moving Toward Person- and
Family-Centered Care” (2012):
http://www.aarp.org/content/dam/aarp/research/public_policy_institut
e/ltc/2012/moving-toward-person-and-family-centered-care-insightAARP-ppi-ltc.pdf
RESOURCE
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The Emotional Survival Guide for Caregivers
by Barry J. Jacobs, Psy.D. (Guilford, 2006)