The REACH Caregiver Intervention Program: From Clinical Trial to Community Implementation. HRJ Endowed Chair University of Michigan

Transcription

1 The REACH Caregiver Intervention Program: From Clinical Trial to Community Implementation Lou Burgio, Ph.D. HRJ Endowed Chair University of Michigan

2 Background dementia (Facts and Figures, Alzheimer s Association, 2012) Dementia describes a syndrome of neurodegenerative disorders affecting memory/recall, executive function, and daily 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

3 Background - caregiving Two thirds of all persons with dementia reside in the community receiving care from over 15 million caregivers, 75% of whom are informal caregivers, generally family members. 75% of these family caregivers are women. 3

4 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. 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.

5 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. While deaths from other major causes continue to experience significant declines, those from Alzheimer s disease have continued to rise.

6 Caregiver Support Programs: Good News and Bad News (Translating Innovation to Impact. A White Paper. Agency on Aging, 2012)

7 Caregiver Support Programs The Good News There is a considerable amount of published research on dementia caregiver interventions White paper(2012) lists research (RCTs) on 44 different caregiver support programs

8 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 only 9 programs, including: Savvy Caregiver, NYUCI, Environmental Skills Building (Skills2Care), STAR-C, REACH II

9 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 quasiexperimental designs): Savvy Caregiver Skills2Care STAR-C REACH II REACH VA REACH OUT

10 NIH-funded multi-site, randomized clinical trial (RCT) testing a dementia caregiver intervention program

11 Overall Goal of REACH Intervention: Overall Goal of REACH Intervention: Reduce stress and burden of dementia caregivers caring for loved ones in the home

12 REACH II Intervention The REACH II intervention was designed to address six areas focused on reducing caregiver stress: Safety Social Support CR Problem Behaviors (behavior management) Emotional well-being (relaxation techniques) Caregiver Self-care and Health Behaviors System that allowed caregivers to be involved in Support Group through the phone

13 Procedures Maximum of 12 home visits over 6 months 4-6 therapeutic phone calls

14 REACH-OUT Translational Trial Lou Burgio (PI) Goal: Translate RCT-version of REACH II intervention for feasible use in the community, specifically, Area Agencies on Aging (AAAs) Analysis sample = 256

15 How was REACH II Clinical Trial Translated to Community? Two Phases Phase I: Using Community Participatory Research (CPR) methods, Al. Dept. 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.

16 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 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

17 How Did the Translated Intervention Look? Very Similar to the REACH RCT We used the same: Mode of delivery (in-home sessions) 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)

18 How Did the Translated Intervention Look? SPECIFICS Initially a risk assessment is conducted to produce tailored interventions. Interventions include: 1. 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

19 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 1 st home visit: Initial visit includes Risk Assessment 2 nd home visit: ~ 3 weeks later 3 rd home visit: ~ 4 weeks later 4 th home visit: ~ 4 weeks later (final home visit) 3 therapeutic phone calls (not 6) between home visits

20 REACH OUT Phase II: Use of Traditional Clinical Research Methods to Test Effectiveness Translated REACH OUT program stayed constant from this point on Pre- Post-assessment (quasiexperimental design) General Linear Modeling (GLM) used to analyze the data

21 REACH OUT I Outcomes? Very Similar to REACH Clinical Trial

22 REACH OUT I: Caregiver Outcomes Caregiver improvement in their overall health and depression Reduction in feelings of burden from caregiving CG reported fewer feelings of anger towards the CR

23 REACH OUT I: Care-recipient Outcomes Care recipients were less likely to be left unsupervised Less wandering CR less likely to have access to dangerous objects Improvement in care recipient s problem behaviors

24 Lessons Learned During Implementation Need formal certification in REACH OUT Formal screen for burden (4-item Zarit) as entry criterion Re-training (recalibration) of interventionists and assessors at 6- months Now recommending six, in place of four in-home sessions Need maintenance sessions for longterm effect

25 Lessons Learned During Implementation Very helpful--perhaps necessary--to have a community Champion (State Commissioner on Aging fully supportive) Conducting formal caregiver support programs conflicts with long-standing case manager role Expectations for evaluation well beyond current standards

26 Barriers and Recommendations Policy In the U.S. we have, at best, only a patchwork of State and Federal Policies to assist dementia caregivers We need: Coherent and consistent Federal policy for caregiver support Mandated dementia training and education initiatives Reimbursements for informal caregivers 26

27 We need: Barriers and Recommendations Research More funding for translational research 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

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