CHANGES IN FORMAL-INFORMAL CAREGIVING OF ELDERLY STROKE SURVIVORS Dissertation Defense 5-18-07

1. CHANGES IN FORMAL-INFORMAL CAREGIVING OF ELDERLY STROKE SURVIVORSDissertation Defense 5-18-07 Holly Beard, PhD candidate Health Services Research Old Dominion University College of Health Sciences Supported by: ODU Graduate Fellowship Dissertation Committee: Chair: James Alan Neff, PhD Stacey B. Plichta, ScD Karen Karlowicz, EdD Bonnie K. Lind, PhD

2. Introduction • Increasingly, individuals that are surviving strokes are older and living longer post-stroke than previous generations of stroke victims. • As a result, current stroke survivors are older and more likely to be disabled. • These stroke survivors depend upon both the formal care system (paid) and informal (unpaid) caregivers.

3. Purpose • The purpose of this study is to determine the utility of the Andersen and Aday Model of Health Services Use in describing cross-sectional differences and changes in the caregiving source between formal and informal caregiving among stroke survivors over a six-year period.

4. Research Questions 1) What is the pattern of formal and informal caregiving among elderly stroke survivors over a six-year period? 2) To what extent does the Andersen-Aday Model (predisposing, enabling, and need variables) explain the receipt of formal and informal caregiving both cross-sectionally and longitudinally? 3) Are there differences between non-Hispanic Whites and minorities (African Americans and Hispanics) in terms of the specific Andersen-Aday model domains (predisposing, enabling, and need) that influence utilization of formal and informal caregiving?

5. The sample includes those participants who identified themselves as having a stroke in 1996 or later. 477 respondents reported having a stroke Several respondents had multiple strokes during the three waves 18.2% of stroke survivors had more than one stroke during the study period 3 waves of the Health and retirement study/assets and health dynamics among the oldest old study spanning 1998 through 2002 National area probability sample (Census) African Americans, Hispanics, and Florida residents were over sampled Health Care Financing Administration (HCFA) Enrollment Data Base (EDB) file MethodologySample

6. Descriptive Characteristics • 60% of participants did not receive assistance • 24% received informal assistance with ADL’s during the study period • 10% received formal assistance

7. Methodology Multivariate Techniques • Research questions two and three were examined using • Multinomial logistic regression to examine cross-sectional relationships between the dependent variable and the independent variables. • Clustered multinomial logistic regression techniques were utilized to examine relationships between the predictor variables in the Andersen-Aday Model and caregiving type longitudinally

8. ResultsTransition Between 1998 and 2002 • Transition of caregiving source between 1998 and 2002

9. ResultsMultivariate (Cross-sectional) Reference Category = Informal Only

10. Predisposing Enabling Need Formal Age (3.1) Poor w/ Medicaid (5.2) Married (.102) Has Resident Children (.05) -- Mixed -- Poor w/ Medicaid (3.3) Has Resident Children (.122) IADL (1.6) 1998 No Caregiving -- -- ADL (.504) IADL (.459) Formal -- Married (.168) Has Resident Children (.057) -- 2000 Mixed -- -- -- No Caregiving -- -- ADL (.2) IADL (.6) Formal African American (.114) Married (.217) Has Resident Children (.064) -- 2002 Mixed -- -- -- No Caregiving -- -- ADL (.385) IADL (.607) Reference Category=Informal Only p<.05; (OR)

11. ResultsMultivariate (Longitudinal) • In the longitudinal models there was improvement • in the -2 log likelihood and • the percentage of respondents correctly classified in the model were high in the informal and formal categories.

12. LongitudinalDomain 1: Predisposing

13. LongitudinalDomain 2: Enabling

14. LongitudinalDomain 3: Need

15. Results Research Question 3 • Bivariate • The only variables that were significantly related to race/ethnicity were Medicaid, total wealth, and resident children • Multivariate • Separate multivariate analyses to examine differences did not produce valid models or did not converge. • Therefore, estimates are not presented.

16. Summary • This study does increase our understanding about the type of caregiving utilized by stroke survivors over many years and does find, at least preliminarily, that some factors in the Andersen-Aday Model were predictive of receiving some types of caregiving. • This study confirmed that in stroke survivors as with other types of diseases such as dementia, the need factors consistently drive use of all caregiving types.

17. SummaryProportion of Total Explained Variance • At each wave the need domain accounts for the largest proportion of the explained variance followed by the enabling domain.

18. Providing care for a stroke survivor is a long-term commitment Stroke survivors rely on informal caregiving (approx. 20%) The rehabilitation period presents a serviceable opportunity to provide caregiving support services to make better choices for the stroke survivor that requires long-term care Information Service management Ultimately the question is not what type of care is used, but how will the cost of care be distributed and in the long run how can the federal government in partnership with the states and individuals plan for this type of care while creating a sustainable system. Policy Implications

19. Future Research • There are three main areas that future research should address: • investigate the reason for choosing a particular type of care and when are these decisions are ultimately made; • further explore potential differences among racial/ethnic groups and their caregiving use; and • describe the caregivers of survivors of stroke to understand the caregiver(s) structure and needs and how these change over time.