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 ConferenceOctober 4-6, 2012 Austin, Texas U.S.A.
Session #B5aOctober 6, 2012
Faculty Disclosure
I have not had any relevant financial relationships during the past 12 months.
Objectives
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
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 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 part-time
US CAREGIVING (cont.)
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.)
$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
Aneshensel et al., 1995
The Caregiving Career
ContinuedContinuedDepression/Depression/ReengagementReengagement
DistressDistress
RecoveryRecovery
ReliefReliefPsychological Psychological AppraisalAppraisal
Health Health EffectsEffects
InitiateInitiateIADL CGIADL CG
ExpandExpandADL CGADL CG
PlacementPlacementCG/CG/CR TrajectoryCR Trajectory
MinorMinor
BenignBenign
Psychiatric/Psychiatric/PhysicalPhysicalMorbidityMorbidity
DistressDistress
DeathDeath
Chronic Stress Trajectoryin Caregiving
DeathDeath
Schulz, 2010
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 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.) 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
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)
PT RESEARCH (cont.)
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.) Mary Mittelman’s NYU
Caregiver Intervention—increases caregiver well-being, forestalls nursing home placement of Alzheimer’s patients for nearly 2 years (2006)
What does the research tell us about designing the most efficacious family caregiver support programs?
SUPPORT PROGRAM RESEARCH Rosalynn Carter Institute: Elements of evidence-
based 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 in-person, telephone, Internet
What are the calls for family inclusion on the integrated healthcare team?
CALLS FOR INCLUSION
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.)
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 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.)
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
National Alliance for Caregiving/AARP study (2009): http://www.caregiving.org/pdf/research/FINAL_eConnected_Family_Caregiver_Study_Jan%202011.pdf
AARP, “Valuing the Invaluable” (2007): http://assets.aarp.org/rgcenter/il/ib82_caregiving.pdf
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.)
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/eurheartj.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.)
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 well-being delays nursing home placement of patients with Alzheimer’s disease, Neurology, Nov 14;67(9):1592-9
REFERENCES (cont.)
AARP Policy Institute, “A Call To Arms” (2012): http://www.aarp.org/content/dam/aarp/research/public_policy_institute/ltc/2012/Spotlight-Paper-Meeting-the-Challenges-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_institute/ltc/2012/moving-toward-person-and-family-centered-care-insight-AARP-ppi-ltc.pdf
RESOURCE
The Emotional Survival Guide for Caregivers by Barry J. Jacobs, Psy.D. (Guilford, 2006)