Microsoft PowerPoint - burgio.reach HK.conf.1.2013revision 2.pptxHRJ Endowed Chair
University of Michigan
Dementia describes a syndrome of neurodegenerative disorders affecting memory/recall, executive function, and daily activity performance. Most common form of activity performance. Most common form of dementia is Alzheimer’s Disease (AD)
Approximately 5.2 million individuals in the U.S. are affected by AD
• One in eight people age 65 and older (13 percent) has Alzheimer’s disease.
• Nearly half of people age 85 and older (45 percent) have Alzheimer’s disease
4
Background - caregiving
Two thirds of all persons with dementia reside in the community receiving care from over 15 million receiving care from over 15 million caregivers, 75% of whom are informal caregivers, generally family members. 75% of these family caregivers are women.
3
Background - caregiving
In 2011, these caregivers provided an estimated 17.4 billion hours of unpaid care, a contribution to the nation valued at over $210 billion. at over $210 billion.
The physical and emotional impact of dementia caregiving is estimated to result in $8.7 billion in increased health care costs in the United States.
Dementia is a Public Health Epidemic,
both in the U.S. and Globally
AD is a disease and NOT a natural outcome of aging
It is the sixth leading cause of death in U.S.U.S.
While deaths from other major causes
continue to experience significant
Caregiver Support Programs:
Good News and Bad News (Translating Innovation to Impact. A White Paper. Agency on Aging, 2012)
Caregiver Support Programs
The Good News
There is a considerable amount of published research on dementia caregiver interventionscaregiver interventions
White paper(2012) lists research (RCTs) on 44 different caregiver support programs
Caregiver Support Programs
The “Not So Good” News
Most of the translational research (i.e., adapting RCT protocols for feasible use in the community) has concentrated on in the community) has concentrated on only 9 programs, including:
Savvy Caregiver, NYUCI, Environmental Skills Building (Skills2Care), STAR-C, REACH II
Caregiver Support Programs:
the Bad News As of mid-2012 only 11 papers had been
published on results of translational studies. (Note that all used quasi- experimental designs):experimental designs):
• Savvy Caregiver
Overall Goal of REACH Intervention:Overall Goal of REACH Intervention: Reduce stress and burden of dementia caregivers caring for loved ones in the home
REACH II Intervention
stress:
Emotional well-being (relaxation techniques)
System that allowed caregivers to be involved in
Support Group through the phone
Procedures
4-6 therapeutic phone calls
REACH-OUT Translational Trial
Lou Burgio (PI)
Goal: Translate RCT-version of REACH II intervention for feasible use in the community, specifically, Area Agencies community, specifically, Area Agencies on Aging (AAAs)
Analysis sample = 256
Translated to Community?
Two Phases
Phase I: Using Community Participatory Research (CPR) methods, Al. Dept. of Senior Services and University of Senior Services and University of Alabama partnered to adapt the REACH II intervention protocol for AAAs
Phase II: Use traditional clinical research methods to test the effectiveness of the adapted intervention.
REACH OUT Phase I: CPR
Advisory Committee formed: AAA directors and case managers, LB and Project Coordinator, and the State Commissioner of Senior Services
Over a 4 month period, the Advisory Committee had a Over a 4 month period, the Advisory Committee had a series of face-to-face meetings and phone conferences to decide how to adapt all aspects of the program to make it more feasible
Over an additional 5 month period, with consultation from Advisory Committee, we (UA) adapted procedural and trainer manuals from REACH II to reflect the adaptations made by the Advisory Committee
How Did the Translated
We used the same:
• Therapeutic technique (Formal Problem • Therapeutic technique (Formal Problem Solving; action-oriented sessions
• Taught the CGs most (not all) of the same skills as REACH II
• Tailored the intervention to the dyad’s needs (Risk Assessment)
How Did the Translated
tailored interventions.
Interventions include:
Education about AD, Caregiving and Stress1. Education about AD, Caregiving and Stress
2. Caregiver Health (Health Passport)
3. Home Safety (Check-list)
4. Behavioral Management (Behavioral Prescriptions)
5. CG Stress Management (Signal Breath Relaxation) excluded social support and use of technology
How was REACH OUT I
Different from REACH RCT? 4 (vs. 12), hour-long home visits to families
over 3-4 months (not 6) to introduce treatment components
1st home visit: Initial visit includes Risk AssessmentAssessment
2nd home visit: ~ 3 weeks later
3rd home visit: ~ 4 weeks later
4th home visit: ~ 4 weeks later (final home visit)
3 therapeutic phone calls (not 6) between home visits
REACH OUT Phase II: Use of
Traditional Clinical Research
Translated REACH OUT program stayed constant from this point on
Pre- Post-assessment (quasi- Pre- Post-assessment (quasi- experimental design)
General Linear Modeling (GLM) used to analyze the data
REACH OUT I Outcomes?
REACH OUT I: Caregiver
health and depression
caregivingcaregiving
the CR
unsupervised
Less wandering
CR less likely to have access to dangerous CR less likely to have access to dangerous
objects
behaviors
Formal screen for burden (4-item Zarit) as entry criterion
Re-training (recalibration) of Re-training (recalibration) of interventionists and assessors at 6- months
Now recommending six, in place of four in-home sessions
Need “maintenance” sessions for long- term effect
Lessons Learned During
have a community Champion (State Commissioner on Aging fully supportive)
Conducting formal caregiver support Conducting formal caregiver support programs conflicts with long-standing case manager role
Expectations for evaluation well beyond current standards
Barriers and
Policy In the U.S. we have, at best, only a
patchwork of State and Federal Policies to assist dementia caregivers
We need: We need:
Mandated dementia training and education initiatives
Reimbursements for informal caregivers
• Caregiver support systems offered • Caregiver support systems offered through primary care medicine
• Better linkage between caregiver intervention researchers and funders to relatively new area of research called Translation Science (AHRQ, PCORI) 27