EVIDENCE-BASED APPROACHES TO CARING FOR FAMILY CAREGIVERS

1. EVIDENCE-BASED APPROACHES TO CARING FOR FAMILY CAREGIVERS Barry J. Jacobs, Psy.D. Crozer-Keystone Family Medicine Residency Program, Springfield, PA www.emotionalsurvivalguide.com

2. TODAY’S TALK • Family caregiving statistics • Health effects of long-term caregiving • Effects on patient outcomes of caregiving • Caregiver coping • Evidence-based interventions • Roles for the family physician • One psychologist’s suggestions • Resources

3. CAREGIVING STATS • Depending on definitions, estimates range from 9-54 million American caregivers; most cite 25 million people regularly providing care; number growing as population ages, medicine advances • Alzheimer’s Association: 4.5 million Alz. patients; by 2050, 11.5-16 million • Avg. lifespan post-dx: 7-8 years • 7 of 10 cared for at home by family, pros

4. HEALTH EFFECTS OF CAREGIVING • Schulz & Martire (2004): strongest evidence: higher prevalence of depression & anxiety, decreased immune system functioning, decreased use of preventative medical services; other evidence: insomnia, musculoskeletal problems, greater cardiovascular reactivity, increased mortality • Conclusion: growing public health concern

5. HEALTH EFFECTS (cont.) • BUT: Not all effects of caring for patients with Alzheimer’s patients are negative • Sanders (2005)—caregiving causes “strain and gains”; latter includes spiritual growth, personal growth, and feelings of mastery • Boerner et al (2004)—pre-loss caregiving benefit associated with higher levels of post-loss depression and grief

6. EFFECTS ON PATIENT OUTCOMES • Research in early stages, inconclusive • Brodary (1993, 1997): Caregiver training/counseling associated with increased survival time for care-recipient • Mittleman (1996): Caregiver coping, support associated with significant delay in care-recipient institutionalization • McClendon et al (2004): Use of wishing, fantasizing coping associated with shorter care-recipient survival time—multiple potential reasons why

7. CAREGIVER COPING • Schulz & Martire (2004): only moderate correlation with disease progression; keys: difficult behaviors, patient dependence for ADLS • Myriad other factors: caregiver gender (females more likely to become depressed/anxious), race (whites more stressed than African-Americans), culture (Hispanics cope better), family position (spouses more affected than children), education (less than h.s., less burden), social supports, appraisals, personality attributes (e.g., optimism), coping styles (e.g., problem-solving) quality of caregiver/patient relationship

8. INTERVENTIONS • REACH (Resources for Enhancing Alzheimer’s Caregiver Health—multi-site, NIA study of 1222 caregivers/patients since 1994—evidence for behavioral-skills training, home environmental skill-building, electronic support groups, etc. • Other researchers: education/training, case management, support, counseling, respite, preventative medical care • Use of acetylcholinesterase inhibitors decreases patient behavioral problems and increases caregiver coping

9. INITERVENTIONS (cont.) • Burns et al (2003): Brief primary care (supportive counseling, behavior management) can reduce caregiver burden—BUT study used non-physicians to administer counseling/training—health educator model • Schulz, Martire, Klinger (2005): Combined interventions targeting caregiver and care-recipient simultaneously produce significant improvements in caregiver well-being and sometimes care-recipient symptoms

10. SUGGESTED PHYSICAN ROLES • JAMA (1993): periodic assessments of caregiver; refer for home services; provide training in managing difficult behaviors; offer validation; act as case manager • Parks & Novielli (2000): assess caregiver burden with set questions or self-report measures; rule out depression/anxiety; increase social supports; prescribe respite; teach behavioral management, stress relief; educate; screen for elder abuse

11. SUGGESTED ROLES (cont.) • Cummings et al (2002): Stage model: early stage: education, advance directives, set realistic expectations; middle: teach behavioral management; advanced: help with support services, emotional support • Rabow et al (2004): terminal stage: communication, emotional support, home and hospice services

12. ONE PSYCHOLOGIST’S SUGGESTIONS • Caregivers main tasks: • Defining commitments • Utilizing support • Handling sacrifice • Weighing hope and acceptance, fantasy and reality • Fostering awareness and flexibility • Protecting intimacy • Sustaining the spirit

13. PSYCHOLOGIST’S RECS (cont.) • Speak to caregiver without patient present • Assess caregiver status using set questions (see attached handout) or self-report measures (see Caregiver Burden Scale and Caregiver Self-Assessment Tool) • Help caregiver define her commitments by providing long-view of disease (caregiving as marathon, not sprint) and asking questions about capabilities/limitations and family caregiving plan

14. RECS (cont.) • Offer support in the forms of acknowledgment, compassion and endorsement • Inquire about meaning(s) of caregiving to caregiver BEFORE prescribing respite or use of support/professional services • Counsel balancing living one day at a time with future outlook—urge planning

15. RECS (cont.) • Foster communication/reciprocity between patient and primary caregiver • Foster communication/reciprocity between primary caregiver and other family members • Inquire about spiritual beliefs, supports • Screen for physical/mental health problems; promote regular check-ups • Teach behavioral management skills

16. RESOURCES • Alzheimer’s Association: www.alz.org • ALZwell Caregiver Support: www.alzwell.com • Alzheimer’s Disease Education and Referral Center: www.alzheimers.org • National Association of Area Agencies on Aging: www.n4a.org

17. RESOURCES (cont.) • National Family Caregivers Association: www.thefamilycaregiver.org • The Well Spouse Association: www.wellspouse.org • The Emotional Survival Guide for Caregivers by Barry J. Jacobs, Psy.D. (Guilford, 2006)