WHAT FAMILY CAREGIVING RESEARCH TELLS US ABOUT COLLABORATION

Barry J. Jacobs, Psy.D.Crozer-Keystone Family Medicine Residency ProgramSpringfield, PAwww.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 AssessmentA 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)