Engaging Family Members in the 

Care of Veterans with Diabetes

Ann-Marie Rosland, MD MS

PACT Research Inspiring Innovations & Self Management (PRIISM) 

Demonstration Laboratory, VISN 11

Ann Arbor VA Center for Clinical Management Research

VA Diabetes QUERI Affiliated Investigator

September 18, 2013 

VA HSR&D Cyberseminar
Agenda

• Why Engage Family Members To Help “Able 

Bodied/Minded” Veterans Manage Chronic Illness?

– Family Roles in Chronic Illness Care

– Family Impact on Health Care and Outcomes

• What Do Involved Family Members Need (And 

Want) to More Effectively Support Chronically Ill 

Patients?

• New Programs Under Development

• Lessons Learned for PACT Teams
Poll

What is your main professional role?

– Student, Trainee, or Fellow

– Clinician

– Researcher 

– Manager or policy-maker 

– Other 
Caregiver
Family Supporter
Data Sources

• Literature Reviews

• Survey of 437 University of Michigan Primary Care 

Patients with Diabetes or Heart Failure

• National Internet Survey of 1722 Family 

Supporters of Adults with Chronic Illness

• PACE Project Survey (569 patients) and 

Qualitative Interviews (21 patient-family pairs) 

with Veterans with ‘High-Risk’ Diabetes

See End for Bibliography
Family Roles in Chronic Illness Care

Among adults who are functionally independent:

• 50-75% of diabetes and heart failure patients have ongoing 

family member involvement in medical management

– Managing and Using medications 

– Checking sugar or blood pressure at home

– Making day-to-day decisions about self-care or illness care

– Preparing for appointments

– Tracking clinician recommendations and sending to other 

providers

– Health system navigation

Sayers 2008; Silliman 1996; Connell 1991; Rosland 2010; Rosland PACE Project 2013
Family Roles in Chronic Illness Care

• About half of these involved family members live 

outside the patient’s home

• Patients with low health literacy, multiple 

comorbidities, and comorbid depression involve 

family in care more often

 Wolff 2008; Glasser 2001; Silliman 1996; Rosland 2011
When you talk with your care recipient about their 

health, they mention that.... 

% sometimes or more

All RECIPIENTS

N=947 

Has “bothersome symptoms” 670 (72.2%)

Thinks should do more to stay healthy (“such as lose 

weight, exercise, or stop smoking”) 

510 (55.1%)

Concerned about medication side effects 433 (46.8%)

Having trouble paying for medications or health care 287 (31.0%)

Not getting support they need to manage health 

problems

279 (30.2%)

Confused about health care provider instructions 259 (28.0%)

Family Discussions About Health Care
Family Impact on Health Care

• Among veterans with ‘high-risk’ diabetes

– 61% had a family member who regularly helped 

them prepare for medical appointments

– 70% regularly discussed the medical appointment 

with a family member afterwards (‘debriefing’) 

• 27% patients not confident they are remembering the 

content of the visit correctly
Family Impact on Health Care

• 50% of older adults regularly bring family members into 

primary care appointments

– Information giving:

• Facilitate discussion - prompt patient to speak and provider to listen

• Help patient remember home events, explain symptoms

• Provide information - clarify, expand patient history

• Help patient understand - explain physician’s instructions

– Information seeking:

• Help patient remember, take notes

• Ask questions, request explanations

– Emotional Support / Companionship

• Accompaniment to Appointments is linked to Higher Patient 

SATISFACTION with Primary Care

 Wolff 2010; Wolff 2008; Rosland 2010
Family Interactions with Care Team

• About 25% talked on phone with clinical team in the 

last year

• About 5% used email / 

secure messaging with 

patient’s care team in 

the last year

• 33% of all veterans who attended health classes or 

groups had family members come with them

Rosland 2010, Rosland PACE Study 2013
Patient Experiences With Family Participation In PCP Care

 “When your friends or family talk to your [primary care] doctor

how often have you had the following experiences?” (N=193*)

2%

4%

9%

12%

40%

44%

73%

77%

78%

0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%

I worried the doctor might trust me less because of something my

friend/family member said

I felt the doctor shared more information about me than he/she should

have

I felt my friend/family members shared more information about me than they should have

It created a new disagreement between me and my friend/family

member

NEGATIVE

It was helpful in solving a disagreement between me and my

friend/family member

We discussed a topic I had a hard time discussing on my own

It was helpful in explaining my health or care to my friend/family member

I understood the doctor's advice better

I was more motivated to follow the doctor's advice

POSITIVE

Rosland 2010
Support Effect on Health Outcomes

• Social support is linked to better self-management, 

and outcomes in chronic illness

– Healthy Eating and Exercise

– Glycemic Control

– BP Control

– Heart Failure Symptoms and Hospitalizations

– Cardiac Events

– Overall health status and Mortality

Krumholz 1998; Baker 2000 & 2003; Luttik 2005; Zautra 1998; Strom 2012; Rosland 2008; 

Rosland 2010; Nicklett & Rosland 2013
Summary

Why Involve Family Supporters in PACT?

• Supporters are already involved in medical self-care 

tasks and decision making

• Supporters already help patients navigate the 

healthcare system and communicate with clinical staff

• Supporters may help improve patient satisfaction and 

outcomes 

• PACT goal is to engage all those helping to care for the 

patient in a team-based approach
PACT and Family Supporters

• How can PACT teams 

engage family supporters 

to improve PACT care 

for patients with chronic illness? 

• What do family members need and want to 

more effectively support patients?
What Family Supporters Want

National survey of family supporters:

•Most involved family are willing to assist more with

– Medications 

– Tracking and responding to home testing and symptoms

– Tracking medical results and records

– Communication at appointments

•Involved family members feel limited by 

– Lack of info about patient’s health conditions

– Lack of info about patient’s health status

– Lack of info about health care provider recommendations

– “Don’t know what questions to ask” the patient

Rosland 2012
Are Family Better at Supporting Some 

Self-Care Behaviors More than Others?

Rosland 2008; Gallant 2003; Rosland DISTANCE 2013 

Lifestyle (healthy 

eating, physical 

activity)

Medical 

(medication 

adherence, selfmonitoring) 
VA Patient-Family Needs

High-risk diabetes patient and supporter interviews (N 21 pairs):

•Requested patient-specific information

•Clear methods to get patient information and family questions 

to/from PACT teamlet

•Distinct and personalized after-visit summary with clear way to 

follow-up with any questions

•Orientation to ‘who’s who’ in primary care and best way to reach 

them

•Access to information on how to handle diabetes ‘medical’ issues at 

home
VA Patient-Family Insights

• Family who work or live far away find creative ways to stay involved

– Phone calls

– Technology

– Deploy in-town family members

• Family and patients feel more confident in family members when 

they have received some ‘training’ about diabetes

• Family members feel encouraged to come in or call when they are 

personally familiar with doctors/nurses and the system

– Describe VA as especially intimidating

• If have to choose, family prioritize visits related to procedures or 

specialists 

• Concerns about privacy are very rare
VA Clinical Staff Insights

VA primary care clinical staff survey (N 116) & interviews (N 66)

•Perceive benefits to including supporters and already try to include them

•Interested in:

– Supporters helping motivate patients to make health behavior change (81%)

– Including supporters during in-person visits and between-visit calls (74%)

– Supporters helping patients titrate meds (diabetes meds, diuretics) (71%)

– Supporters informing team when patient status changes (68%)

•Biggest concerns:

– Not aware supporter is involved 

or what their role is (70%)

– Concern that supporters 

are not giving ‘proper’ advice 

or care (57%)

– Privacy (46%) and Time (40%)
VA Pilot Programs for 

Family Supporters in Chronic Disease

• CarePartners 

• CarePartners Clinic Connections Pilot

• Couples’ Telephone Intervention in 

Hyperlipidemia Pilot

– Improved diet and physical activity, C Voils –VA Durham

• Heart Failure Self-Management for Couples

– R Trivedi, VA Palo Alto Pilot
CarePartners Program

• Patients answer weekly automated Interactive Voice 

Response calls about symptoms and self-management 

• CarePartners receive 

automated weekly reports

• Both get (automated) suggested 

suggested next steps

• Adapted for Diabetes, 

Heart Failure, Depression, 

Cancer Symptoms, Prostatectomy, 

Transitions
CarePartners Clinic Connections

• Intervention Goals

– Improve effective family support for patients’ 

‘medical’ diabetes self-management and 

participation in care

– By integrating actively involved family members 

into the PACT care team
CarePartners Clinic Connections Model

Family Supporter 

Engagement

Patient Activation

Medication Adherence

Timely changes in regimen

Better CV risk control

Better safety (side effects, hypoglycemia, ED visits)

• Caregiver “In The Loop” – personalized clinical 

and health system information

• Caregiver helps prepare and debrief PACT visit

+ Caregiver monitors weekly for clinically 

relevant changes through IVR

• Patient uses health system resources available

• Patient participates in visit and enacts plan after

• Patient takes timely action when problems arise
CarePartners Clinic Connections 

Population

• From VA healthcare system High-Risk Diabetes Registry

– Active AAVA primary care patient and

– Last HbA1c >9 or HbA1c >8 and <55 yo or

– Last BP>160/100 or mean 6 month BP >150/90

• Supporter who is regularly involved in health care

– In-home or out-of-home

• Estimated 1100 healthsystem patients are eligible
CarePartners Clinic ConnectionsDesign

Veterans with HighRisk Diabetes with 

Involved Supporter

Initial Visit with Patient and 

Supporter

Pre-Primary Care Appointment

Phone Call to Patient and Supporter

Post-Primary Care Visit

Summary to Patient and Supporter

Include Supporter in

Between Visit Results or Regimen Changes

Weekly IVR calls

and structured conversations

between patient and supporter

Supporter effectively 

helps patient lower 

diabetes risk
Lessons for PACT Teams

• Ask patients if they have an involved family member

– What aspects of medical care/navigation are they involved in

– Document once permission to contact that family member about care

• Introduce PACT team to family member

• Give diabetes-specific information to involved family member

– And express your confidence that they are ‘qualified’ to help

• Give patient-specific information to involved family member

– Particularly if patient is complex and family are involved with medical / 

navigation tasks

• Encourage family to come to primary care appointments - into the room

• Encourage family to prepare questions/concerns for you

• Encourage productive communication skills among family members

– Family members can use open-ended listening, autonomy support/motivation, 

and goal setting too!
Caregivers of Veterans with 

Dementia

Dr. Mavandadi 
Bibliography

• Wolff & Roter, Social Science and Medicine, 2011. Family Presence in Routine Medical Visits: A 

Meta-Analytical Review

– And others by JL Wolff

• Strom & Egde, Current Diabetes Reports, 2012. The Impact of Social Support on Outcomes in Adult 

Patients with Type 2 Diabetes: A Systematic Review

• Piette et al. Congestive Heart Failure, 2008. Improving heart failure self-management support by 

actively engaging out-of-home caregivers. 

• Voils et al. Trials, 2009. Couples Partnering for Lipid Enhancing Strategies (CouPLES). 

• Rosland AM et al, Chronic Illness, 2010. Emerging models for mobilizing family support for chronic 

disease management: a structured review

• Rosland AM et al, Journal of Behavioral Medicine, 2011. The Impact of Family Interactions on 

Chronic Disease Management and Outcomes: A Systematic Review

• Rosland AM et al, Families, Systems, & Health, 2013. Current and Potential Support for Chronic 

Disease Management in the United States: The Perspective of Family and Friends of Chronically Ill 

Adults

• Rosland AM et al, Medical Care, 2011. Family and Friend Participation in Primary Care Visits of 

Patients with Diabetes or Heart Failure: Patient and Physician Determinants and Experiences
Extra Slides
Modified Poisson Multiple Regression Model-Based Adjusted Relative Risks of 

Diabetes Self-Management Behavior Adherence with Higher Social Support*

DISTANCE Study, N = 13,366

Models adjusted for: age, sex, race/ethnicity, education, income, physical component of SF8, DxcG 

comorbidity score, duration of diabetes, diabetes treatment, and depression. Medication adherence 

models also adjusted for: hospitalization in year prior to baseline, number of chronically used 

medications. Appointment adherence models also adjusted for hospitalization in year prior to baseline 

and total number of scheduled appointments 

Rosland et al, submitted for review
66.0%

1.0%

2.0%

9.0%

16.0%

19.0%

24.0%

27.0%

39.0%

% 10.0% 20.0% 30.0% 40.0% 50.0% 60.0% 70.0% 80.0% 90.0% 100.0%

Would make me more

overburdened than I already am

Is something I was never taught how

to do

Would raise concern about breaking

privacy rules

Would take too much time away

from other important patient issues

May result in family members or

friends becoming more dependent

on me

Might worsen or cause new conflicts

between patients and family/friends

Would interfere with my patientphysician relationships

Would be uncomfortable

Agree with at least one of above

barriers

0.0

Physician Barriers to More Family Participation

"How do you feel about talking with family and friends of diabetes or heart failure patients more often?"

% agree or strongly agree*

Rosland et al, Medical Care 2010
Teamlet: 

Assigned to 1 panel 

(±1200 patients) 

• Provider: 1 FTE

• RN Care Manager: 1 

FTE

• Clinical Associate 

(LPN, Medical 

Assistant): 1 FTE

• Clerk: 1 FTE

Patient 

Other Team Members 

Clinical Pharmacy Specialist ± 3 panels 

Social Work: ± 2 panels 

Trainees 

Integrated Behavioral Health 

Psychologist ± 3 panels 

Social Worker ± 5 panels 

Care Manager ± 5 panels 

Psychiatrist ± 10 panels
Rosland et al, Families, Systems, and Health, 2012
Visit Companions and Patient Satisfaction with Primary Care

Rosland et al, Medical Care 2010
Engaging Caregivers in the Care 

of Veterans with Dementia

Shahrzad Mavandadi, PhD

Research Health Science Specialist

Mental Illness Research, Education, and Clinical Center (MIRECC)

Philadelphia VA Medical Center
Poll Question

• Which best describes your clinical research 

experience?

– have not done clinical research

– have collaborated on clinical research

– have conducted clinical research myself

– have applied for clinical research funding

– have led a funded clinical research grant
Dementia among Older Adults in the 

United States: Trends & Implications

• 1 in 8 older Americans has Alzheimer’s Disease (AD)

– Over 1⁄2 million Veterans with dementia in 2013 

(http://www.va.gov/HEALTHPOLICYPLANNING/reports1.asp)

• AD is the 6th leading cause of death 

• Payments for AD care alone estimated at $200 billion 

• The annual incidence of AD and other dementias is expected 

to double by 2050

• Significant impact will be felt as the population ages

 Alzheimer’s Association (2012) 
Provision of Health Care for Older 

Adults with Dementia

• Paid Caregivers: Direct-care workers and professionals – Fewer than 10% receive all their care from paid caregivers

– Shortage of workers, insufficient training, and high turnover

• Unpaid Caregivers: 80% of care provided at home is by family 

members (Institute of Medicine, 2008)

• Caregivers are “hidden patients” (Pinquart et al., 2003)

– Increased risk for social, psychological, and physical health 

problems 

• Caregiving role associated with adverse outcomes for both 

caregivers and care recipients (Mittelman et al., 2006)
Caregiver-Based Interventions for Dementia

• A variety of programs and interventions have been developed and 

evaluated (http://www.hsrd.research.va.gov/publications/esp/dementiacare.cfm)

• Programs focused on caregiver support and psychoeducation have a 

positive impact on caregiver and care recipient outcomes (Schulz & 

Martire, 2004)

• Best evidence for individually tailored, multicomponent programs

• Patient-centered, collaborative care programs have yielded 

especially promising results (PDC, Judge et al., 2011; REACH I & II, Wisniewski et 

al., 2003, Schulz et al., 2003; Callahan et al., 2006; ACCESS, Vickrey et al., 2006)
Pilot Project: Purpose

• Examine impact and feasibility of a telephone-based 

dementia care management program that involves two main 

components: 

1. Collaborative care management

2. Manual-driven psychoeducation, support, and skills training 

• Supports PACT initiatives:

– Patient/family centered

– Care coordinated by care managers in collaboration with PCP and 

other providers

– Improved access and engagement via telephone administration

– Brings specialty dementia care to patient and family
Pilot Project: Aims

• To examine whether, relative to UC, 

– The program is associated with improved caregiver and 

patient outcomes

– Participants enrolled in the program have greater 

perceived access to and use of medical and social services

• To evaluate whether the program is feasible and acceptable to 

caregivers
Method: Design & Sample 

• Design: 

– Longitudinal (BL, 3, & 6 months), randomized design 

– N=80 (40 intervention, 40 UC)

• Study Sample:

– CGs of community dwelling Veterans with a dementia 

diagnosis and/or on a cholinesterase inhibitor

• Recruitment Strategies

– Direct provider referral, Behavioral Health Laboratory, 

Clinical Patient Record System (Rx)
Method: Program Components 

• All Participants: 

• Baseline/3M/6M Assessments – RA administered

• Receive printed brochures/materials regarding caregiving

• Intervention Arm

• Monitoring Symptoms, Medication and Service Use

• Contact CG at least 3-4 times over 3 months

• Evaluate & track: dementia & psychiatric sx, safety issues, CG distress, service use/needs, and medication use

• Assist in service/resource connection, mail educational 

materials 

• Consult with PCP as needed

• Telehealth Education Program
Telehealth Education Program

• CG support group program developed at the VISN2 Center for 

Integrated Healthcare (CIH) (Wray, Shulan, Toseland, et al., 2010)

• Based on the Stress & Coping model (Lazarus & Folkman, 1984)

• Adapted for use with individual CGs

• Key Components:

– Psychoeducation, problem solving, action plan development, 

emotion/problem focused coping, & support

– Up to 10 modules selected

• 2 mandatory sessions + individualized menu selections

• Sample topic areas: behavioral management, communication 

skills, planning for the future

https://vaww.visn2.portal.va.gov/sites/natl/cih/Shared%20Documents/Forms/AllItems.aspx; 

Laura.Wray@va.gov 
Methods: Key Assessments

• Caregiver-Related: – Sociodemographics, general functioning (SF12), social participation, medical 

hx checklist

– Zarit Burden Interview; Lawton Caregiver Appraisal Scales; Pearlin Caregiving 

and Stress Process Scales

– Needs Assessment, Desire to Institutionalize Scale

– PHQ-9 (depression)

• Care Recipient-Related:

– Sociodemographics, clinical characteristics, ADL/IADLs, medical hx checklist, 

med/service utilization

– Revised Memory and Behavior Problems Checklist (RMBPC)

– Neuropsychiatric Inventory Questionnaire (NPI-Q)

• Process Evaluation: care manager tracking sheets
Caregiver Background Characteristics 

Characteristic (n=70) Mean (SD)/

N (%)

Range

Age 70.00 (11.96) 41-88 

Female 68 (97.1%)

Non-Hispanic White 45 (64.3%)

Relationship to Veteran – Spouse 59 (84.3%)

Provide 24 hours of Care/Day 46 (65.7%)

CG Duration (yrs) 

 < 2 yrs 32 (46.4%) 

 3-5 yrs 21 (30.4%)

 6+ yrs 16 (23.2%)

Financial Situation – Have at least 

enough to get by

58 (86.5%) 

General Physical Functioning (SF-12 PCS) 48.29 (10.72) 21.45-69.22 

General Mental Functioning (SF-12 MCS) 43.82 (11.87) 11.48-70.62 

Total Needs Endorsed 2.5 (2.1) 0-8 

Overall Caregiver Burden (Zarit) 14.54 (9.56) 0-40 
Care Recipient Characteristics 

Characteristic (n=70) Mean (SD)/

N (%)

Range

Age 78.80 (8.90) 52-94 

Male 69 (98.6%)

Non-Hispanic White 45 (64.3%)

Dementia Duration > 3 yrs 39 (55.7%)

Comorbid Medical Conditions 9.12 (4.76) 

IADL deficits 3.70 (4.12) 0-21 

ADL deficits 4.31 (1.95) 0-6 

Neuropsychiatric Indices (NPI)

 Symptom Severity 7.43 (5.44) 0-22 

 CG Distress due to Symptoms 9.91 (8.96) 0-42 

Revised Memory Behavior 

Problem Checklist (RMBPC)

 Frequency Total 9.19 (3.75) 2-21 

 CG Reaction Total 18.54 (13.26) 0-62 
Preliminary Findings: CaregiverReported Needs
Participation in Care Management/TEP

 • Engagement

– Average # Contacts: 5 (range=3-9)

– Average # of TEP modules selected: 3 (range=2-10)

• A wide range of needs/concerns addressed

– Most common: mood/behavioral health, community services, 

medications, general health, appointments made/facilitated

• Coaching/practice in various non-pharmacologic strategies to 

reduce stress and strain

– Pleasurable event scheduling, cognitive restructuring, problem solving 

exercises 
Preliminary Outcomes: NPI Indices

Visit*Group : F (2,92)=1.55, p=.21 Visit*Group : F (2,92)=2.27, p=.10
Preliminary Outcomes – Revised 

Memory Behavior Problem Checklist 

Total Symptom Frequency Caregiver Distress/Reaction to 

Symptoms

F (2,92)=1.36, p=.26 F (2,91)=2.81, p=.06
Additional Outcomes 

• Relative to UC, CGs in the intervention arm also reported 

greater increases in:

• Caregiving mastery (p=.17)

• “Management of meaning” (i.e., cognitive coping) (p=0.02)

• Overall mental functioning (SF12 MCS) (p=0.08)

• Desire to Institutionalize

• No significant differences between groups
Summary & Implications

• A telephone-based caregiver outreach and support program for 

community-dwelling older Veterans is feasible and acceptable to 

caregivers. 

• Caregivers of older Veterans with dementia report unmet needs and 

experience burden and distress.

• Longitudinal trends suggest that caregivers’ distress may decrease 

over time upon receipt of care management services. 

• Findings highlight the importance of increasing caregiver access to 

patient-centered programs and resources that provide support and 

psychoeducation and can easily be implemented within PACTs. 
Thank You & Acknowledgments

VISN 4 Center for Evaluation of

PACT (CEPACT)

Care Managers:

Trisha Stump, RN

Bree Miller, PsyD

Sherry Cocozza, RN

Project Coordinators:

Erin Clark, BA

Meagan Graydon, BA

Co-Investigators:

Laura Wray, PhD

David Oslin, MD

Johanna Klaus, PhD
Questions?

Ann-Marie Rosland, MD, MS

Ann-marie.rosland@va.gov

 

Shahrzad Mavandadi, PhD

shahrzad.mavandadi@va.gov