Evidence‐based Synthesis

Program (ESP)

A S i ystematic Evidence Review

of Interventions for

Non‐professional Caregivers

of Individuals with Dementia

Elizabeth R. Goy, PhD

Core Investigator

Portland Portland Center for the Study of Chronic Chronic, Com

Com

Mental and Physical Disorders

Portland, Oregon

January 27, 2011

Susan Cooley, PhD & Heather Heather Mahoney Mahoney‐Gleason Gleason

Discussants
Evidence‐based Synthesis

Program (ESP)

Acknowledgements

Co‐Authors

o Devan Kansagara, MD, MCR

o Michele Freeman, MPH

Expert Panel/Revie

o Susan Cooleyo Mark Kunik, 

o Randall Rupp

o Linda Nichols

o Robert Ruff, 

Advisors/Assistance

o Linda Humphrey, MD, MPH

o Rose Campbell MLIS MS o Robert Ruff, 

o Stuti Dang, M

o Rose Campbell, MLIS, MS

CDA Mentors

o Linda Ganzini, , MD MPH

o Mark Helfand, MD, MS, MPH

Discussants

S C l PhD

o Susan Cooley, PhDo Heather Mahoney-Gleason, LCSW
Evidence‐based Synthesis

Program (ESP)

Disclosure

This report is based on research research conducted conducted by the Evidence Evidence‐based 

Program (ESP) Center located at the Portland VA Medical Center, Po

Oregon, funded by the Department of Veterans Affairs, Veterans He

Administration Administration, Office of Research Research and Development Development, and Health S

S

Research and Development. The findings and conclusions in this do

those of the authors who are responsible for its contents; the findin

conclusions conclusions do not necessarily necessarily represent represent the views of the Departm

Departm

Affairs or the United States government. Therefore, no statement 

should be construed as an official position of the Department of Ve

No in estigators vestigators ha ev any affiliations affiliations or financial financial in ol ement volvement (e g. ., 

consultancies, honoraria, stock ownership or options, expert testim

patents received or pending, or royalties) that conflict with materia

the report.
Evidence‐based Synthesis

Program (ESP)

VA Evidence‐based Synthesis (ESP)

Program Overview

• Sponsored by VA Office of R&D and HSR&D.• Established Established to provide provide timely and accurate accurate syntheses/reviews syntheses/reviews 

topics identified by VA clinicians, managers and policy‐maker

work to improve the health and healthcare of Veterans.

• Builds on staff and expertise already in place at the Evidence‐

Practice Centers (EPC) designated by AHRQ. Four of these EPESP Centers:

o Durham VA Medical Center; VA Greater Los Angeles Healt

System; Portland VA Medical Center; and Minneapolis VA 

Center.
Evidence‐based Synthesis

Program (ESP)

• Provides evidence syntheses on important clinical practice to

to Veterans, and these reports help:

o d l eve op cli i l n ca poli i c es if d n ormed by evidence,

o the implementation of effective services to improve 

outcomes and to support VA clinical practice guidelin

performance measures, and

o guide the direction for future research to address gap

knowledge.

• Broad topic nomination process – e.g. VACO, VISNs, field – fa

ESP Coordinating Center (Portland) through online process:

http://www.hsrd.research.va.gov/publications/esp/TopicNomin
Evidence‐based Synthesis

Program (ESP)

• Steering Committee representing research and operations (PC

and VISN) provides oversight and guides program direction.

• Technical Advisory Panel (TAP)

o Recruited for each topic to provide content expertise

o Guides topic develop ; ment refines the key questions

o Reviews data/draft report.

• External Peer Reviewers & Policy Partners

o Reviews Reviews and comments comments on draft report

• Final reports posted on VA HSR&D website and disseminated 

through the VA.

http://www.hsrd.research.va.gov/publications/esp/reports
Evidence‐based Synthesis

Program (ESP)

Current Report

A Systematic Evidence Review

of I t ti n erventions for

Non‐professional Caregivers

of Individuals with Dementia Dementia

(October, 2010)

Full‐length report available on ESP website:

• http://www hsrd research va gov/publications/esp/DementiaCareg

http://www.hsrd.research.va.gov/publications/esp/DementiaCareg
Evidence‐based Synthesis

Program (ESP)

Background

• Dementia

o Broad term describing cognitive impairments, memo

functional and behavioral behavioral deterioration deterioration

o Typically lengthy, progressive course of deteriorationo Community caregivers (CGs) provide increasing care a

progresses

o CG role associated with health and mood complicatio

et al., 2002)

o Ph i l ys ca , emoti l ona st i /b d rain/burden on CG li k d n e to

institutionalization of care recipient (CR) (Lieberman & Kra
Evidence‐based Synthesis

Program (ESP)

Background

• Over half million Veterans with dementia p j ro ected for 2010

(HTTP://WWW4.VA.GOV/HEALTHPOLICYPLANNING/REPORTS1.ASP)

o VA patient‐centric care includes

o G i ti er a rics and G i ti er a ric P hi t sychiatry out ti t pa en cli 

n 

o Home Based Primary Care

o Skilled Home Care

o Adult day health careo Homemaker and Home Health Aide Services

o Home respite, home hospice

o Community Living Centero State Veteran Homeso Contract Nursing Homehttp://www.va.gov/GERIATRICS/Programs_and_Services.asp
Evidence‐based Synthesis

Program (ESP)

Background

• VHA Office of Geriatrics and Extend de Care Dementia Steerin

requested this evidence review

o What interventions have been created and testedo What is effective effective for the CG

o Reduce straino Improve mood

o Improve competence

o Improve confidence

o What is effective for the CR

o Improve cognitiono Improve adaptive functioning

o Improve problem behavior behavioro Improve mood

o Delay institutionalization
Evidence‐based Synthesis

Program (ESP)

Key Questions

• Key Question #1. Do CG interventions affect the CG’s knowle

ability to manage problematic behavior, CG psychosocial bur

health and health behaviors behaviors, or outcomes outcomes in the individual individual w

• Key Question #2. What are adverse effects of CG intervention
Evidence‐based Synthesis

Program (ESP)

Methods

• Review requested by the VHA Dementia Steering Committee

o Some DSC members also served as technical expert p

• Population

o Nonprofessional community‐dwelling family CGs of p

dementia

o Pf i l rofessional staff excldd u e , but in‐home paid sitters o

hired by family included
Evidence‐based Synthesis

Program (ESP)

Methods

• Interventions

o Psychoeducational

o Cognitive‐behavioral

o Counseling/case managemento Supportive interventions

o Respite careo Telephone based support groups/education

o Home TeleHealth/Health Buddy home monitoring de

o It t n ernet‐b d ase resources

o Exercise/physical activity

o Multicomponent
Evidence‐based Synthesis

Program (ESP)

Methods

• Outcomes for CG

o Knowledge and ability to manage behavioral problem

o Psychosocial Psychosocial – burden, burden, well‐being, depression, depression, anxiet

anxiet

efficacy, positive experiences of caregiving, satisfactio

care, quality of life

o Health behaviors behaviors – diet, exercise exercise, sleepo Health – self‐report, symptoms, medications, service

mortality
Evidence‐based Synthesis

Program (ESP)

Methods

• Outcomes for CR

o Use of psychotropic drugs

o Cognition, Cognition, mood, behavioral behavioral disturbance, disturbance, social funct

funct

function

o Utilization – hospitalizations, institutionalizations, or 

visits (including ED visits) visits)

o Accidentso Health‐related quality of lifeo S ti f ti Satisfaction with care
Evidence‐based Synthesis

Program (ESP)

Methods – Search Strategy

• MEDLINE search for systematic reviews through July 2009

o “Dementia” OR “dementia” AND “systematic”

• Cochrane Cochrane Database Database of Systematic Systematic Reviews Reviews & Database Database of Rev

Rev

(OVID) search for systematic reviews through July 2009

o “Dementia.mp”

• Contacted known researchers to identify recent or ongoing st

• Per DSC recommendation examined:

o Individual Individual studies studies from the Administration Administration on Aging s’ 

Disease Supportive Services Program compendium

o Additional recommended individual studies publishe

review (2006)
Evidence‐based Synthesis

Program (ESP)

Methods

• Inclusion/Exclusion criteria

o Systematic review (SR)“Review of reviews” or meta‐a

o Nonprofessional Nonprofessional CGs of people with dementia dementiao Interventions and Outcomes as defined

o Fairly clean strategy for Respite Care and Technology‐

• P h il sychosocial i i nterventions

o Different SRs grouped same studies differently

o Much overlap – many primary studies included in mo

review

o Dissimilar studies combined in some cases

37 Good Quality RCTs of

Psychosocial Interventions
Quality Criteria for SRs

• S h earc d t a es report d? e Yes or No

• Search methods reported? Yes or No

• C hi omprehensive search? Yes or No

• Inclusion criteria reported? Yes or No

• Sl i e ect on bias avoid d? e Yes or No

• Validity criteria reported? Yes or No

• Validity assessed appropriately? Yes or No

• Methods used to combine studies reported? Yes or 

• Findings combined appropriately? Yes or No

• Conclusions supported by data? Yes or No
Quality Criteria for SRs

• Good: Meet all criteria: Reports comprehensive a

reproducible search methods and results; reports 

criteria criteria to select studies studies and reports reports reasons reasons for ex

ex

potentially relevant studies; adequately evaluates 

included studies and incorporates assessments of 

when synthesizing data; reports methods for synthdata and uses appropriate methods to combine daqual l itatively or quantitatively; conclusions support

evidence reviewed.
Quality Criteria for Primary

Studies

(USPSTF)

• Adequate randomization, concealment/blinding, bal

confounds

• Maintenance of comparable groups

• Important differential loss to follow‐up or overall hig

f ll o ow‐up

• Measurements: equal, reliable, and valid

• Clear d fi iti efinition of i t ti n erventions

• Important outcomes considered

• A li na ys s: i i ntent on‐to‐treat anal i ys s for RCTs
Quality Criteria – Primary

Studies

• Good: Meets all criteria: Comparable gr

assembled initially and maintained through

study (follow‐up at least 80 percent); reliab

valid measurement instruments are used a

equally to the groups; interventions are spe

clearly; important outcomes are considered

appropriate attention to confounders in an
Evidence‐based Synthesis

Program (ESP)

General Observations

• No unequivocal findings

• In general, studies improved over time

• The inclusion inclusion of primary primary studies studies published published after the systemat

systemat

persuasive to our conclusions
KQ1 Do CG Interventions

Improve CG or CR Outcomes?

• Psychosocial Interventions

o Multicomponent (5 studies) – combinations of skills t

support, respite care, problem solving, stress manage

environmental modifications

o Best when individually tailored to dyad needs

o Improve CG depressiono Improve CG report of burden, well‐being, confideo Improve CG self‐care and ratings of social supporo Interventions predicted less grief after death of C

Holland et al., 2009)

o No consistent consistent support support for delay of CR institutiona

institutiona

o When diverse populations studied (Belle et al., 2

Hispanic/Latino and White CGs reported improve

burden, self‐care, and social support; support; spousal spousal CG

similar improvements among Black/African Ame

participants 
Q1 Do CG Interventions Improv

CG or CR Outcomes?

• Psychosocial (cont)

• E i xerc se T ii ra n ng for CG (1 stud ) y – home b d ase exercise w

supportive phone calls (attention control)

o No evidence of impact on key outcomes, though dem

success in cultivating adherence to program for less d

• Case Management (5 studies) – intensive nurse care case 

including including problem problem solving solving, behavior behavior management management, skills tr

tr

care control)

o 2 of 5 (Callahan et al., 2006; Vickrey et al., 2006) show

for improving improving CG stress, depression depression, confidence confidence, and 

behaviors for at least 1 year

o Insufficient support (1 of 5: Eloniemi‐Sulkava et al., 2

dl d e aye i i i li i institutionalization of CR
Q1 Do CG Interventions Improv

CG or CR Outcomes?

• Psychosocial (cont)

• Bh i e av or Management T ii ra n ng (4 studies, addi i l dditional 3 fro

compendium) – train CG to identify antecedents of proble

and their consequences, then devise strategies to reduce 

problem behaviors. Two were augmented (CR exercise or 

pamphlets)

o Inconsistent evidence of improved CG mood or well‐b

o Improvements in CR aggression and/or CG reactivity 

behaviors in 5 of 7 reports

o Need for greater greater methodological methodological rigor in these studie

studie
Q1 Do CG Interventions Improv

CG or CR Outcomes?

• P h il sychosocial ( t) con

• Individual Skills Training (6 studies) – problem‐solving, env

modifications, increase CG sense of self‐efficacy

o 2 studies demonstrated improved CG mood (effects m

sustained beyond 6 mos) (Buckwalter et al., 1999; Ba

o 3 studies (Buckwalter; Gerdner et al., 2002; Gitlin et a

demonstrated reduced CG reactivity to problem beha

o Positive but varied outcomes for CR include: CR mood 

less decline decline in self‐care, reductions reductions in behavioral behavioral dist

dist

studies.

o Significantly larger proportion of CRs remained at home post interven

(Wright et al., 2001)

o No compelling evidence of impact on CG burden, anx

consistent delay of institutionalization
Q1 Do CG Interventions Improv

CG or CR Outcomes?

• Psychosocial (cont)

• Group Skills Training and combined group/individual (8 st

Individualized in‐home assessments (for many) followed b

problem sol i v ng, bh i e av or management, stress managem

environmental modifications, education about dementia 

usual care control).

o 3 studies demonstrated improved CG mood, also imp

CR behavior in 2 of these

o 1 study (Burgio et al., 2003) reported findings for dive

populations: skills training effectively reduced “bothe

minimal support control more effective in White CGs

institutionalize institutionalize increased increased over time among White CG

stable in AA CGs.

o “Savvy Caregiver Program” (Hepburn et al., 2003 & 2

CG confidence confidence and reduced reduced distress distress but attrition attrition high

o Individualization of training appeared linked to impro
Q1 Do CG Interventions Improv

CG or CR Outcomes?

• Psychosocial (cont)

• Individual, group and combined group/individual support

(6 studies) – supportive counseling, empathy, emotional sid tif i identifying sources of support in surroundings

o No clear superiority of individual or group support ov

groups (wait list or usual care)

o A combined individual/group approach (Mittelman e

1996 & 2004) resulted in delayed institutionalization 

long term mood & heath improvements for CG.

o Appears resource‐intensive

o No improvements in CG burden reported
KQ1 Do CG Interventions

Improve CG or CR Outcomes?

• Technology‐Based Interventions (3 systematic reviews)

o Networked information and communications techno

support CGs. Examples: e‐mail, e‐encyclopedia, bulle

Q&A; Telephone‐Linked Care (part of REACH study) w

stress‐monitoring and counseling information; suppo

and information access; GPS monitoring

o Overall, insufficient evidence to support effective

technology‐based interventions.

o TLC, COMPUTERLINK, and CTIS combined in met

increased subjective report of CG social support, 

confidence confidence in decisions decisions, and mental health, but n

effect on CG depression.

o Uncontrolled studies suggest GPS tracking of CR 

CR function function and safety and reduce CG depression depression

stress; need robust trials.
KQ1 Do CG Interventions

Improve CG or CR Outcomes?

• R it esp e Care: A kr sey et al., 2004, SR of 45 arti l c es (15 US‐b 

ase

o Day care, in‐home respite, video respite, institutiona

respite.

o Overall, small, statistically‐significant improveme

outcomes (e.g. better sleep patterns for CG), but 

evidence regarding impact on CG health or well‐

inconsistent.

o Institutional/overnight respite – 2 studies condu

hospitals. Transient improvement in CG burden aat time of discharge but no health/well‐being im

sustained beyond 2 weeks.

o Despite Despite lack of support support of health/well health/well‐being imp

imp

study measures, CGs expressed high satisfaction 

services
KQ1 Do CG Interventions

Improve CG or CR Outcomes?

Recent/Ongoing Research

• Resources for Enhancing Alzheimer’s Caregiver Health

o REACH, REACH II, REACH‐VA, REACH OUT

o Support, skills trainingo Interventions feasible,o cost estimates estimates of $2 93 . per day

• Partners in Dementia Care (PDC) –HSRD study with collaborat

Alzheimer’s Association chapters

o Dyad assessment followed by phone‐based coaching,

empowerment, provision of support and information

o In data analysis stage

• Telephone Linked Care (TLC) and Rural Telehealth Education P

o Phone education and support

o No si ifi t ignificant changes in CG outcomes b t u decreases 

costs noted
Evidence‐based Synthesis

Program (ESP)

Discussion

• Some interventions show promise

o Strongest Strongest support support for multicomponent multicomponent interventions interventions 

individualized assessment

o BMT and Case Management also had some strong stu

supporting but i i ncons stent overall

• Are we measuring what we should be measuring?

o Adequate sensitivity for the possible benefits experie
Evidence‐based Synthesis

Program (ESP)

• Additional Limitations of this Review

o Differences AND overlaps in interventions and outcom

studies made grouping diffi l cu t

o Difficulty knowing which aspect of intervention was eo Psychosocial studies do not lend themselves to precis

o There may be good quality primary studies represent

quality systematic reviews that we missed

o Good q y ualit systematic reviews latest publication wa

psychosocial interventions. Added studies per Expert 

recommendations.

o Statistical Statistical versus clinical clinical significance significance rarely discussed

discussed
Evidence‐based Synthesis

Program (ESP)

Future Research Indications

• Need feasibility and cost analysis studies

• Replication of exact interventions and outcomes successful w

author

• Mixed methods designs – to better define outcome measures
Evidence‐based Synthesis

Program (ESP)

Questions?

If you have further questions,

feel free to contact:

Elizabeth (Betsy) Goy PhD

503‐220‐8262, ext. 57470

elizabeth.goy@va.gov

The full report and cyberseminar presentation is available on the E

http://www.hsrd.research.va.gov/publications/esp/