Recent advances in caregiver intervention research

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Recent advances in caregiver intervention research

• William E. Haley, Ph.D.
• School of Aging Studies
• University of South Florida
• whaley_at_cas.usf.edu

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Goals for today

• Briefly review the state of caregiver
  intervention research
• Discuss two projects representing innovative
  advances in caregiver intervention research
• NYU Family Caregiving Project
• USF projects, caregiving at the end-of-life
• Highlight other new directions that deserve
  attention in caregiver intervention research

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Effectiveness of caregiver interventions

• Recent reviews suggest that psychosocial
  interventions for caregivers can have meaningful
  effects on clinically relevant domains
• Effects greatest for structured and
  individualized interventions

Schulz, R., OBrien A., Czaja, S., Ory, M.,
Norris R., Martire, L. M., et al. (2002).
Dementia caregiver intervention research In
search of clinical significance. The
Gerontologist, 42, 589-602. Sörensen, S.,
Pinquart, M., Duberstein, P. (2002). How
effective are interventions with caregivers? An
updated meta-analysis. The Gerontologist, 42,
356-372.
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Issues deserving greater attention

• Long term impact of caregiver interventions
• Moderators of treatment effectivenesswho
  benefits?
• Mediation of treatment effectivenessmechanisms
  of change
• Interventions for diverse caregivers, including
  racial/ethnic diversity, diverse illnesses,
  end-of-life and bereavement phases of caregiving

Dilworth-Anderson, P., Williams, I. C., Gibson,
B. E. (2002). Issues of race, ethnicity, and
culture in caregiving research A 20-year review
(1980-2000). The Gerontologist, 42, 237-272.
Haley, W. E. (2003). The costs of family
caregiving Implications for geriatric oncology.
Critical Reviews in Oncology/Hematology, 48,
151-158.
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Individual differences

• Stress process modelLazarus and Folkman
• People experience the same event in different
  ways
• Almost any event can be perceived or appraised as
  threat, harm, challenge, or benign
• Appraisal is greatly affected by ones available
  resources to cope with the stressor
• These make an enormous difference in how people
  approach stress

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Caregiving and the stress process

• Include Pearlins contributions to understanding
  stress process
• Primary stressorspatient care
• Secondary stressorsspillover effects
• Contextual stressorslife goes on
• Psychosocial resources can include internal
  (appraisal, coping, personality) and external
  (social support, finances)
• Outcomes can include mental and physical health,
  social, economics as costsand benefits

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Stress and coping A balancing act
Primary caregiving stressors
Internal coping resources
Secondary stressors
External coping resources
Other chronic strains and life events
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Caregiver intervention can

• Decrease stressors (lighten the load)
• Alter appraisals (primary, how aversive the
  stressors are secondary, what perceived
  resources people have to cope)
• Teach skills or in other ways build internal
  resources
• Provide or rally external resources

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From S. Folkman (1997). Positive psychological
states and coping with severe stress. Social
Science and Medicine, 8, 1207-1221.
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From S. Folkman (1997). Positive psychological
states and coping with severe stress. Social
Science and Medicine, 8, 1207-1221.
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NYU Family Caregiving Project

• AD Caregiver Well-Being Counseling/Institutionali
  zation (M. Mittelman, PI)
• National Institute of Mental Health, 1R01
  MH42216, 2001-2004
• Re-analysis of NYU dataset with core
  collaborators including WEH, David Roth (UAB),
  David Coon (San Francisco, Institute on Aging)

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Previous findings from NYU Study

• Spouse caregivers randomized to enhanced support
  or usual care
• Intervention led to significant improvement in
  depressive symptoms at one year followup
• Caregiver intervention substantially delayed
  nursing home placement

Mittelman, M.S., Ferris, S.H., Shulman, E.,
Steinberg, G., Ambinder, A., Mackell, J.,
Cohen, J. (1995). A comprehensive support
program Effect on depression in
spouse-caregivers of AD patients. The
Gerontologist, 35, 792-802. Mittelman, M.S.,
Ferris, S.H., Shulman, E., Steinberg, G.,
Levin, B. (1996). A family intervention to delay
nursing home placement of patients with Alzheimer
disease A randomized controlled trial. Journal
of the American Medical Association, 276,
1725-1731.
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Unique features of the NYU study

• 406 spouse caregivers randomized
• Project began in 1987, some caregivers followed
  17 years
• Less than 5 refusals on followup interviews
• Flexible and sustained caregiver intervention
  administered by highly skilled and dedicated
  counselors

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The NYU intervention

• Caregivers randomly assigned to usual care or an
  intensive caregiver intervention program at NYU
• 2 sessions individual counseling
• 4 family sessions
• support group membership
• ad hoc counseling without limit
• Described in detail in a recent book

Mittelman, M.S., Epstein, C., Pierzchala, A.
(2002). Counseling the Alzheimers Caregiver, A
Resource for Health Care Professionals, Chicago
AMA Press.
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Long-term effects of caregiving intervention

• 406 caregivers randomly assigned to usual care or
  an intensive caregiver intervention program at
  NYU
• Analyses use growth curve modeling to assess
  impact of caregiver intervention over a 5 year
  period

Mittelman, M., Roth, D., Coon, D., Haley, W. E.
(2004). Sustained benefit of supportive
intervention for depressive symptoms in
Alzheimers caregivers. American Journal of
Psychiatry, 161, 850-856.
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Other noteworthy details

• Effects of treatment did not interact with
  caregiver gender or patient Global Deterioration
  Scale stagesimilar benefit across these
  subgroups
• Improvements in caregiver depressive symptoms
  after NHP and patient death
• Effects of treatment did not interact with
  occurrence of these transitionstreatment effects
  sustained after NHP and death

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Mechanisms of the intervention effects

• Caregiver intervention could improve
• Stressors (e.g. behavioral problems)
• Appraisals (reactions to behavioral problems)
• Social support (various dimensions)
• Coping skills
• Variety of other mechanisms could be studied,
  e.g. psychotherapy literature, therapeutic
  relationship

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NYU intervention emphasis

• Not on behavioral management
• Emphasized education, emotional support, family
  intervention
• We are examining impact on behavioral problems
  appraisals and social support

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Mittelman, M. S., Roth, D. L., Haley, W. E.,
Zarit, S. (2004). Effects of a caregiver
intervention on negative caregiver appraisals of
behavior problems in patients with Alzheimers
disease Results of a randomized trial. Journal
of Gerontology Psychological Sciences, 59B,
p27-p34.
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Mittelman, M. S., Roth, D. L., Haley, W. E.,
Zarit, S. (2004). Effects of a caregiver
intervention on negative caregiver appraisals of
behavior problems in patients with Alzheimers
disease Results of a randomized trial. Journal
of Gerontology Psychological Sciences, 59B,
p27-p34.
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Mediation analysis

• Unpublished results available from authors

Roth, D. L, Mittelman, M., Clay, O., Madan, A.,
Haley, W. E. Social support as a mediator of the
reductions in changes in stress appraisals and
depression following psychosocial intervention
for spouse caregivers of persons with Alzheimer's
disease. Under editorial review.
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Individual differences in response to caregiver
intervention

• Neuroticism
• Previous research has shown that individuals high
  in neuroticism respond more poorly to
  psychotherapy for depression
• Investigated neuroticism as a moderator

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Jang, Y., Clay, O. J., Roth, D. L., Haley, W.
E., Mittelman, M. S. (2004). Neuroticism and
longitudinal change in caregiver depression
Impact of a spouse-caregiver intervention
program. The Gerontologist, 44, 311-317.
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Comments

• Main effects for Group and Neuroticism, and lack
  of interaction effects, shows that intervention
  has significant benefits for both high and low N
• High N fare more poorly over time
• Intervention helps high N stabilize, low N
  reductions of depression
• Comprehensive nature of this intervention may
  make it particularly effective for high N, not
  clear that other caregiver interventions will be
  effective with this group

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Family caregiving and the end of life
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Why is end of life caregiving important to
address?

• Families are involved in all aspects of end of
  life decision makingadvance directives, hospice,
  withholding treatment
• End of life care has unique stressors
• Caregiving experiences affect families after
  caregiving ends

Haley, W.E., Allen, R., Reynolds, S., Chen, H.,
Burton, A., Gallagher-Thompson, D. (2002).
Family issues in end-of-life decision making and
end-of-life care. American Behavioral Scientist,
46, 284-297.
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From Lunney, J. R., Lynn, J., Hogan, C. (2002).
Profiles of elderly Medicare decedents. Journal
of the American Geriatrics Society, 50,
1108-1112. Frailty (47), terminal illness
(22), organ failure (16), sudden death (7),
and with only 8 of deaths not fitting
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Organizational efforts

• Center for Hospice, Palliative Care and End of
  Life Studies at the University of South Florida,
  funded by local hospices, USF, and Moffitt Cancer
  Center.
• Hope to enhance research and expand education in
  end of life issues.
• Several large hospices are active partners and
  are allowing us unusual access for research.

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LifePath Hospice Family Caregiver Project

• Focused on stressors and well-being of spousal
  caregivers of hospice patients with lung cancer,
  dementia noncaregivers.
• Patients over age 50.
• Interviews and questionnaires in caregivers
  home.
• Follow-up after patient death.
• N40 per group at baseline (total N120).
• Difficult research environment

Haley, W.E., LaMonde, L.A., Han, B., Narramore,
S., Schonwetter, R. (2001). Family caregiving
in hospice Effects on psychological and health
functioning in spousal caregivers for patients
with lung cancer or dementia. The Hospice
Journal, 15, 1-18.
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Descriptive information and caregiving stressors

• Dementia caregivers provided 75 hours of care per
  week, for 49 months cancer caregivers provided
  115 hours of care per week, for 14 months.
• Dementia patients are more severely impaired in
  cognition, ADL and IADL, cancer patients more
  pain, appetite loss, constipation.

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Percent with clinically significant depression
(CES-D gt15) while caregiving

• No differences in depression between dementia and
  lung cancer caregivers
• Male and female spouse caregivers have high rates
  compared with controls

From Haley et al. (2001)
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Physical health perceptions (SF-36)

• Both dementia and cancer caregivers report poorer
  self-rated physical health than controls, no
  gender differences.

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Caregiver satisfaction with hospice care for
patient, self

• Both dementia and cancer caregivers report very
  high satisfaction with hospice care on a 0 (not
  at all) to 3 (extremely) scale.

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A Caregiver Intervention to Improve Hospice
Outcomes

• Principal Investigator
• Susan C. McMillan, PhD, RN, FAAN
• Center for Hospice, Palliative Care and End of
  Life Studies at the University of South Florida

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Co-investigators

• Michael Weitzner, MD
• Linda Moody, PhD, RN, FAAN
• Bill Haley, PhD
• Ron Schonwetter, MD
• Mary Tittle, PhD, RN
• Brent Small, PhD,
• Ann Holzheimer, MS, RN

• Moffitt
• Nursing
• Aging Studies
• Geriatric Med.
• Nursing
• Aging Studies
• LifePath

Funded jointly by the National Cancer Institute
and the National Institute for Nursing Research
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STRESSORS
MEDIATORS
OUTCOMES
Patient Quality of Life
Caregiver Stressor Patient symptoms
Caregiver QOL including Mastery
Caregiver Appraisal of Stressors
Caregiver Coping
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Study Sample

• Goal, 480 patient/caregiver dyads
• Divided into 3 groups of 160 each
• Patient inclusion Adults, cancer, family
  caregiver, literate, score of 7 on SPMSQ, problem
  with 2 of the following pain, dyspnea,
  constipation.

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Experimental Conditions

• I. Standard Careno visits
• II. Standard Care supportive visits
• III. Standard Care Cope

Visit 1 Between days 3 and 5 Visit 2 Between
days 5 and 7 Visit 3 Between days 7 and 9
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Dependent variables

• Caregiver Quality of Life Index-Cancer
• Appraisal of Burden of Cancer symptoms--Memorial
  Symptom Assessment Scale distress
• Appraisal of General Caregiving Mastery
• Appraisal of Burden and Mastery Specific to
  Caregiving TasksCaregiving Demands Scale
• Secondary measuresProblem focused and emotion
  focused coping (Brief COPE)

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Our experience

• Very high attrition
• Most commonly, attrition was due to patient
  decline (29) or death (21), and the caregiver
  feeling overwhelmed (23 ) which was largely
  associated with patients worsening condition.

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Preliminary findings

• Unpublished results available from authors

McMillan, S. C., Small, B. J., Weitzner, M.,
Schonwetter, R. S., Tittle, M., Moody, L.,
Haley, W. E. Impact of coping skills
intervention with family caregivers of hospice
patients with cancer A randomized clinical
trial. Under editorial review.
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Final comments

• Caregiver intervention research has matured
• Key issuesidentifying long-term impact of
  intervention and policy implications mediators
  moderators
• Effectiveness of caregiver interventions in
  special populations, such as end of life
• Moving evidence-based practice into real-world
  settings-effectiveness research

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Questions and comments