The NYU Caregiver Intervention

1
The NYU Caregiver Intervention

• The Original Research
• and Early Results from Translations in Community
  Settings

2
What Made us Think Support and Counseling would
Work?

• Clinical experience at NYU (1980-85) codified
  into an intervention
• Study began in 1987
• The Stress Process Model (1990) a good post hoc
  explanation.

3
NYU Spouse Caregiver Intervention Study1987-2009

• A Randomized Controlled Trial to Test the
  Efficacy of Counseling and Support for Family
  Caregivers

4
NYU Caregiver Intervention Study Participants

• 406 spouse-caregivers of people with Alzheimers
  disease
• Enrolled from August 1987 to February 1997
• Living with the person with AD at intake
• At least 1 close relative in the area.

Mittelman MS, et al. In Light E, Niederehe G,
Lebowitz B, eds. Stress Effects on Family
Caregivers of Alzheimers Patients. New York, NY
Springer Publishing 1994.
5
NYU Caregiver InterventionStudy Design

• Comprehensive baseline interview
• Random assignment to treatment or control group
• Regular comprehensive follow-up interviews
• All participating caregivers received the
  services routinely available at the NYU Aging and
  Dementia Research Center.

Mittelman MS, et al. In Light E, Niederehe G,
Lebowitz B, eds. Stress Effects on Family
Caregivers of Alzheimers Patients. New York, NY
Springer Publishing 1994.
6
Components of NYU Caregiver Intervention

• Scheduled individual counseling sessions
• Scheduled family counseling sessions
• Continuous participation in a support group
• Ad hoc counseling - telephone consultation on
  request of caregiver or family member.

Mittelman MS, Epstein C, Pierzchala A. Counseling
the Alzheimers Caregiver A Resource for
Healthcare Professionals. Chicago, Ill AMA
Press 2003.
7
Treatment Strategy

• Within a fixed period of time
• An individual counseling session
• 4 family counseling sessions
• A second individual counseling session
• Over the entire course of the disease
• Participation in a support group
• Telephone consultation for caregiver or family
  member as needed.

Mittelman MS, et al. In Heston LL, ed. Progress
in Alzheimers Disease and Similar Conditions.
Washington, DC American Psychiatric Publishing
1997259-275.
8
NYU Caregiver Intervention

• Study Results

9
NYU Caregiver Intervention Improves Caregiver
Satisfaction With Support from Social Network
very satisfied
Mittelman MS, et al. In Heston LL, ed. Progress
in Alzheimers Disease and Similar Conditions.
Washington, DC American Psychiatric Publishing
1997259-275.
10
The Effect of NYU Caregiver Intervention on
Satisfaction with Support Continues for at Least
5 Years
very satisfied
Covariate-adjusted trajectories for average
satisfaction with social support over the first 5
years of intervention Drentea, P Clay, OJ Roth,
DL Mittelman, M.S, Social Science in Medicine,
2006
11
NYU Intervention Reduces Caregiver Symptoms of
Depression
Covariate adjusted scores from linear model,
years 1-5 Mittelman MS, Roth DL, Coon, DW
Haley, WE, American Journal of Psychiatry 2004
161850-856.
12
Effect of NYU Intervention on Caregiver
Depression Continues for at least 3 Years
Covariate adjusted scores from linear model,
years 1-5 Mittelman MS, Roth DL, Coon, DW
Haley, WE, American Journal of Psychiatry 2004
161850-856.
13
Caregiver Reaction to Problem Behavior Improves
with NYU Caregiver Intervention for at least 4
Years after Enrollment
Usual care
Treatment
Mittelman MS, Roth DL, Haley WE, Zarit SH
Journals of Gerontology, Psychological Sciences
2004 59B27-34
14
NYU Caregiver Intervention Has No Effect On
Frequency of Problem Patient Behaviors
Usual care
Treatment
Mittelman MS, Roth DL, Haley WE, Zarit SH
Journals of Gerontology, Psychological Sciences
2004 59B27-34
15
The Effects of the Intervention are Mediated by
Social Support
Baseline Reaction to Patient Behavior
Reaction to Behavior
-.49
Close Friends and Relatives
-.25
.19
.26
Satisfaction with Support
.38
Intervention
.42
.22
.22
.20
-.27
Caregiving Assistance
Baseline Depression
-.39
Depression
Roth, DL Mittelman, MS Clay, OJ Madam, A
Haley, WE, Psychology and Aging 2005
16
The NYU Caregiver Intervention Improves Physical
Health of Spouse Caregivers
Mittelman, MS., Roth, DL, Clay, OJ and Haley, WE.
AJGP, 2007 780-789
17
Time to Nursing Home Placement of Patients Is
Delayed by Counseling and Support of Caregivers
Median difference 557 days
Mittelman MS Haley, WE Clay, OJ and Roth, DL
Neurology, 2006.
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Recent Recognition of Importance of Interventions
for Caregivers

• Evidence-based interventions for caregivers
  posted on SAMSHA NREPP website
• Administration on Aging awarded grants to 3
  states for community replications of effective
  caregiver interventions
• Rosalynn Carter Institute awarded funding to 5
  community sites for pilot replications.

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Barriers to Effectiveness in Community
Settingsand Planned Strategies to Overcome Them

• Barriers
• Physicians reluctance to diagnose dementia
• Patients and families unaware of reasons to seek
  evaluation of memory problems
• Family members dont call themselves caregivers
• Physicians, patients and families unaware of
  value of supportive services
• Social service providers lack of training in
  evidence based intervention
• Strategies
• Physician education
• Community leader education
• Partnership with state units on aging and
  community service providers
• Use training materials developed by original
  researchers and additional materials developed
  collaboratively with community partners
• Training and ongoing support for providers
  provided by NYU counselors.

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How Can We Evaluate Effectiveness? What Should We
Measure?

• Process
• How acceptable is intervention in community?
• To service providers
• To clients
• To those who are responsible for continued
  funding
• Fidelity
• Tension between what must be done to adapt
  intervention to community settings and
  maintaining original intervention.
• Measurable outcomes
• Can we justify a randomized controlled trial, and
  if not, how can we know weve made a difference?
  
• What outcomes should be measured?
• Should we compare the results on measured
  outcomes to those of the original study?

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AoA-funded Replication of NYUCI in Minnesota

• The Minnesota Board on Aging in cooperation with
  the Alzheimer's Association Minnesota/North
  Dakota Chapter, four Area Agencies on Aging, a
  county public health agency, medical clinic and
  memory disorders clinic
• September 2007 Caregiver coaches at 4 sites, 3
  rural and 1 urban, replicating the NYUCI
• Focus on rural and underserved minority
  caregivers
• Evaluate ability to embed this intervention in
  service systems, fidelity to the original study
  and consistency of outcomes
• September 2008 AoA additional funding expanded
  intervention to 9 sites in Minnesota.

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Modifications

• Using TCare Assessment plus outcome measures from
  original NYUCI with published efficacy
• Focus on family requires training of coaches
• Often requires more than one contact before
  caregiver is willing to involve family
• Person with dementia included in one family
  session if in the early stage.

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Process of Enrollment

• Enrollment goal 120 by February 2010
• 42 enrolled as of 11/1/08
• Reasons given for not enrolling
• Too tired and worn out to participate
• Caregiver health issues
• Have no family able or willing to participate in
  family sessions
• Not willing to make the time commitment to the
  program
• Privacy issues- don't want to open up their
  personal lives to this project.

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Modified NYUCI Being Tested inRural Vermont and
Underserved in NYC

• Assessments
• to tailor intervention and measure outcome
• Identified family caregiver and person with
  dementia (new)
• Individual and family counseling sessions
• Primary caregiver Two sessions
• Family counseling Four sessions
• Three sessions without PWD
• One session with PWD (new)
• Ad hoc counseling as in original NYUCI
• Support group participation (every 2 weeks) for
  caregiver
• Respite offered to primary caregiver during
  counseling sessions (new)

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Rural Vermont Offering the Program through
Physicians

• Primary Care Practice Division of Fletcher Allen
  Healthcare.
• 40 physicians,
• approximately 50,000 patients
• 1/3 over the age of 65 (16,500 patients)
• estimate 2,062 have Alzheimers disease
• 11 families enrolled in first year.

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Vermont Offering the Program through Physicians

• The program is offered primarily to patients and
  families who come in to see their doctor
• Social worker asked physicians to make a list of
  patients who have a dementia dx to trigger
  thinking about who to refer, and to call
  caregivers to assess interest in participating.
• Many on the lists have died, arent living
  together any more, or dont meet study criteria .
• Observations
• The longer we are on site at a primary care
  practice, the more they use social worker as a
  resource for their own staff training and
  consultation
• Physicians dont want to refer to a randomized
  control trial.

28
HomeFirst Managed Long Term Care, NYCSpecific
Implementation Challenges

• Multilingual/multicultural membership
• Age and frailty of members and their spousal
  caregivers average member age is 79 years old
• Medical co-morbidities of members and spousal
  caregivers
• Generational stigma attached to acceptance of
  counseling
• Regional shortage of LCSWs willing to work in
  home care community staff vacancy unfilled for gt
  one year.

29
Implementation in Medicaid Managed Care Barriers
and Solutions

• Ascertainment of eligibility
• Caregivers were selected based on nursing
  assessment accessed via electronic database
  eligibility criteria. Missed caregiver challenges
  and cognitive impairment of potential
  participants
• Now Train RN Care Managers to identify dementia
  and increase caregiver acceptance of supportive
  counseling during home visits
• Nurses understanding of social workers role
• Believed just obtaining services
• Now trained to see value of social support.
• Caregivers reluctance to get help for themselves
• Nurse goes with social worker on first visit
• Now enrollment increased because of endorsement
  from trusted RN.

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Problems in Implementation of Protocol in JJ/RCI
Sites

• Randomized control trial design
• Limiting intervention only to spousal caregivers
• Spousal caregivers high level of frailty and
  illness
• Spousal caregivers may accept or decline services
  based on the advice of their adult children.

31
Pilot Study of Replication of NYUCIAmong Latino
CaregiversCaroline Rosenthal Gelman, NYU School
of Social Work

• Goals
• Enroll 20 caregivers
• Assess whether the intervention as it exists is
  applicable and relevant to Latino caregivers
• Evaluate whether the intervention is effective in
  decreasing Latino family caregiver depression and
  stress, reducing family conflict, increasing
  perceived levels of social support
• Design All participants receive intervention
• Final enrollment 10 caregivers
• 6 spouses (1 husband)
• 4 adult children (1 son)

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Specific Barriers to Implementation in Latino
Community in NYC

• Significant lack of information about AD
• Structural barriers to services (language,
  financial, geographic, legal status)
• Participants are experiencing marked psychosocial
  stressors and significant levels of anxiety and
  depression and require and use significant amount
  of case management/ad hoc counseling
• Myth in Latino community that there is an
  extended supportive family united (Familismo).
  Caregivers report family members dont help.

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Current Implementation in Latino Community,
Caroline Gelman, Hartford Faculty Fellow

• Implementation of NYUCI within existing
  community-based social service agency in
  Washington Heights (75 Latino)
• What we learned from pilot study that we are
  applying now
• Partnership with community-based agencies for
  outreach/education/recruitment
• Added case management component given
  biopsychosocial needs of participants
• Focus on enhancement of support in
  individual/family sessions.
• Evaluation goals
• Caregiver participation
• Cost of intervention and agency capacity to
  provide it
• 8 family caregivers currently enrolled.

34
Family Meetings in Memory Clinics (FaMe) Reveals
Danger of Decomposing Multi-component
Intervention

• Funded by Dutch government
• Modeled after family counseling in NYUCI
• Uses NYU assessments and manual
• First report is that 75 of caregivers dont want
  to sign up for family counseling

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Summary

• Stakeholders need information on value of
  evaluation of memory problems and psychosocial
  interventions
• Caregivers in the community are more frail and
  have more diverse needs than those in research
  centers
• Ongoing interaction between community sites and
  researchers is crucial
• Training
• Monitoring fidelity
• Evaluating effectiveness
• Intervention has appeal - All the translation
  sites are eager to continue and expand.