2014 AAGP Annual Meeting

Poster Number: EI 42Systematic review of interventions to support well-informed person-centered decision making fordementia careAubri Hoffman, PhD, MS1,2; Daniel Bateman, MD2,1; Stephen J. Bartels, MD, MPH1,2

1Dartmouth Centers for Health and Aging, Lebanon, NH2Dartmouth-Hitchcock Medical Center, Lebanon, NH

Introduction: Creating dementia care plans can reduce caregiver burden and prolong aging in place. However, family caregiversstate that surrogate decision making is a primary source of burden and a barrier to creating care plans. Decision supportinterventions (e.g. patients’ decision aids, decision coaching, etc.) have been shown to improve information comprehension,communication, decisional conflict, and engagement in decision making. However, the quantity, quality, and effects ofdecision support interventions for dementia families remain unclear. Therefore, this systematic review critically assessed thescientific literature regarding the following research question: Compared with usual care, do individuals with dementia and/ortheir family caregivers who receive a decision support intervention have improved information comprehension, decisionalconflict, or engagement in decision making?Methods: Two research librarians searched the MEDLINE, CINAHL, EMBASE, Cochrane, Web of Knowledge, GoogleScholar, PsychInfo, and related dissertation libraries for “dementia”,”decision support”, and related sub-terms. Threeresearchers hand-searched abstracts from relevant academic society meetings, and spoke with identified experts in the field.Eligibility criteria included papers about individuals with dementia or their family caregivers using any form of interventiondesigned to support health care decision making. Primary outcomes included information comprehension, decisional conflict,and engagement in decision making. Critical appraisal followed the Cochrane and GRADE guidelines.Results: Two blinded reviewers reviewed 5,922 abstracts and 131 full text manuscripts to yield 14 included papers reporting on9 decision aids designed specifically for dementia care. These papers were published in 2001-2012 and describe studies in theUnited States, United Kingdom, Canada, France, Germany, The Netherlands, and Australia. Nine decision aids were identifiedcovering topics such as advanced care plan options, respite care, antibiotics, feeding tubes, goals of care, long term care, andmemory medications. These decision aids exist in paper workbook and video/DVD media. Three decision aids are reportedavailable on the Internet, but studies evaluating Internet-delivery were limited. The majority of studies (66%) focused oncaregivers’ decision making. Critical analyses suggest moderate effects on information comprehension and decisional conflict;however, insufficient information was provided to critically assess the effect on engagement in decision making. Risk of biasvaried, as many studies reported on early development stages.Conclusions: Since 2001, nine patients’ decision aids have been developed internationally for decisions related to dementiacare. Early evidence suggests dementia care decision aids can improve information comprehension and decisional conflictsimilar to other decision aids; however, gaps remain in the evidence regarding their effect on engagement in creating care plans.

This research was funded by: Dr. Hoffman is supported by an NIMH T32 NRSA Postdoctoral Research Fellowship with theGeriatric Mental Health Services Research Collaboratory.

Poster Number: EI 43Caregiver Stigma and Burden in Alzheimer’s Disease: A Comparison of Spousal and Adult ChildrenCaregiversPhoebe V. Kahn, BS1; Chloe O. Zimmerman2; Heather A. Wishart, PhD3; Robert B. Santulli, MD3; Perla Werner, PhD4

1Geisel School of Medicine at Dartmouth, Hanover, NH2Dartmouth College, Hanover, NH3Dartmouth-Hitchcock Medical Center, Lebanon, NH4University of Haifa, Haifa, Israel

Introduction: Despite the considerable gains in public awareness of Alzheimer’s disease over the past several decades, patients withAlzheimer’s continue to suffer frombeing stigmatized because of their disease. Inmany cases, familymembers also become victims ofthis stigma, andmay experience feelings of shame about the disease as well. The social stigma experienced by patients and caregivers isan important and potentially modifiable contributor to caregiver burden. Previous work has explored the relationship betweenfamily stigma and caregiver burden among adult children of persons with Alzheimer’s disease in Israel, but no similar data exist forspousal caregivers or caregivers in general in theUnited States. The current study examines the presence of family stigma experienced

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2014 AAGP Annual Meeting

by both spousal and adult children caregivers of persons with Alzheimer’s, and evaluates the relationship between stigma andcaregiver burden in the sample. In addition, the study explores the differences in stigma and caregiver burden between adult childrenand spousal caregivers. Caretaker gender and attendance in a support group were also assessed for impact on stigma and burden.Methods: 53 caregivers were interviewed over the telephone, and an additional 32 caregivers completed questionnaires whichwere returned by mail. Of the participants, 59 were spousal caregivers, 24 were adult children caregivers, and two were otherfamily members. All caregivers were given the Zarit Burden Inventory Short Form (ZBI), and the Family Stigma in Alzheimer’sDisease Scale (FS-ADS). In addition to these two measures, a number of demographic and other questions were asked.Results: There were no differences inmail or telephone responses on eithermeasure. Overall, adult children caregivers experiencedsignificantly greater stigma on the FS-ADS (p¼0.001) and burden on the ZBI (p¼0.02) compared to spousal caregivers. Scores onthe FS-ADS and ZBI were positively correlated (r¼0.47, p<0.01). Furthermore, female caregivers reported experiencing morestigma on the FS-ADS (p¼0.003) andmore burden on the ZBI (p¼0.04) compared tomale caregivers. There were no differences instigma or burden for caregivers who had attended a support group in the past compared to those who had not.Conclusions: Adult children caregivers experience significantlymore stigma andburden associatedwith their lovedone’sAlzheimer’sdisease compared to spousal caregivers. In addition, female caregivers experience greater stigma and burden thanmale caregivers. Thepresent study reinforces the importance of support for caregivers, particularly for adult children and female caregivers who mayexperience higher levels of stigma and burden. The current correlational data do not permit causal conclusions, but do indicatea relationship between stigma and burden and suggest a potential new avenue for intervention. Future research should address thepossibility that strategies designed to reduce stigma at the personal, group or societal level will also help reduce caregiver burden.

This research was funded by: This project has been supported by a generous donation from the Jeanne Estee Mackay AndersonAlzheimer’s Disease Support and Education Fund and the Geisel School of Medicine at Dartmouth.

Poster Number: EI 44Long-Term Care and Offspring Mental Health: Evidence from the Health and Retirement StudyKristen Rice, MPH Candidate, 2014; Briana Mezuk, PhD; Scott Ratliff, MS

Virginia Commonwealth University, Richmond, VA

Introduction: Seventy percent of individuals over 65 will require long-term care, and 40%will require skilled care in a nursing home.Adult children frequently have an active role in the often-stressful decision of whether their parents move into an assisted livingfacility or nursing home. To date there is limited research on how this transition affects the mental health of the resident’s children.Methods: Data come from the 2010 wave of the Health and Retirement Study. The sample is restricted to respondents with atleast one living parent (N¼6524). Mental health was indexed using the Center for Epidemiologic Studies-Depression scale(CES-D), collapsed to four categories (no depressive symptomology, mild symptomology, moderate symptomology, and severesymptomology). The association between parental residence (community-dwelling or assisted living/nursing home) anddepressive symptomology was assessed using ordinal logistic regression. Models were adjusted for demographic characteristics,relationship with parents, number of living siblings, and self-reported health.Results: Fifteen percent ofHRS respondents had at least one parent living in an institution. Those with a parent in a nursing homewere 63% more likely (95% CI: 1.07 - 2.48) to have elevated depressive symptomology compared to respondents whose parentsreside in the community (p-value: 0.02). This association was similar for men and women (OR 1.78 and 1.60, respectively).Conclusions: In 2013, 1 in 7 adults over the age of 65 will reside in nursing homes. The health implications of the transition toan institution in later life extend to the families of those individuals. Findings indicate that the mental health of adult childrenis related to their parents’ residential status.

Poster Number: EI 45Top 10 Self-Help Books in Geriatric PsychiatryKaren Reimers, MD

Mayo Clinic Health System, Eau Claire, WI

Introduction: Patient and caregiver education is fundamental to optimal care in Geriatric Psychiatry. Extensive educationideally occurs in the office setting during the clinical encounter. However, clinicians generally have limited time available forpatient and caregiver education.

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