EVIDENCE-BASED APPROACHES TO CARING FOR FAMILY CAREGIVERS

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EVIDENCE-BASED APPROACHES TO CARING FOR FAMILY
CAREGIVERS

• Barry J. Jacobs, Psy.D.
• Crozer-Keystone Family Medicine Residency
  Program, Springfield, PA
• www.emotionalsurvivalguide.com

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TODAYS 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 psychologists suggestions
• Resources

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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
• Alzheimers 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

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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

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HEALTH EFFECTS (cont.)

• BUT Not all effects of caring for patients with
  Alzheimers 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

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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 timemultiple potential
  reasons why

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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

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INTERVENTIONS

• REACH (Resources for Enhancing Alzheimers
  Caregiver Healthmulti-site, NIA study of 1222
  caregivers/patients since 1994evidence 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

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INITERVENTIONS (cont.)

• Burns et al (2003) Brief primary care
  (supportive counseling, behavior management) can
  reduce caregiver burdenBUT study used
  non-physicians to administer counseling/trainingh
  ealth 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

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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

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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

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ONE PSYCHOLOGISTS 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

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PSYCHOLOGISTS 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

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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 outlookurge planning

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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

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RESOURCES

• Alzheimers Association www.alz.org
• ALZwell Caregiver Support www.alzwell.com
• Alzheimers Disease Education and Referral
  Center www.alzheimers.org
• National Association of Area Agencies on Aging
  www.n4a.org

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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)