Unmet Needs and Barriers to Service Use by Family Caregivers

1. Unmet Needs and Barriers to Service Use by Family Caregivers Julian Chow1, Andrew Scharlach1, Erica Auh1, and Nancy Giunta1 Annual Meeting of the National Gerontological Social Work Conference New York, NY, February 27, 2005 1 Center for the Advanced Study of Aging Services - University of California, Berkeley

2. Center for the Advanced Study of Aging Services Mission: • Improving services for the elderly through research, collaboration and education Current projects include: • Strategic Plan for an Aging CA (SB910) • Family Caregiver Support Program • LTC Insurance and Quality Assurance • LTC Integration and Case Management • Consortium for Social Work Training in Aging

3. Overview • Literature Review • Research Questions • Method • Results • Discussion & Implication

4. Literature Review • More than half of the very old spouses provide care with no formal or paid assistance and many without informal assistance(Stone et al. 1986). • Only about 52% of dementia CGs use respite service(Cotrell, 1996). • As many as 30-50% of CGs participating in large national studies failed to use respite services despite free or low-cost services available to them(Lawton et al. 1989; Montgomery & Borgatta 1989).

5. Literature Review (cont’d) • CG age, education, self-reported health and informal support networks have been identified as predictors of unmet service needs (Clipp & George, 1990).

6. Conceptual Definition of Unmet Needs Caregivers who believe or feel that a particular type of service would be helpful to meet their needs to better function as a family CG Service users: inadequacy of service Non-service users: absence of service

7. Research Questions • What are demographic characteristics of those with unmet needs? • How do the CGing experiences differ for the CGs with unmet need and without unmet need? • Which type of CG services mark the highest unmet needs? • What are the main barriers for service use?

8. Method • Random Digit Dialing • Respondent caring for someone over age 50 • Surveys conducted in English and Spanish • Interview lasted approx. 30 minutes • N = 1,643

9. Operational Definition of “Unmet Needs” Unmet needs study sample is extracted from the following questions: 1) “Have you [CG] received …….[service type]….? 2) “Do you think that [service type] would be helpful?” “No” to 1) & “Yes” to 2) for at least one service type AND answered “No” to the question: Do you have all the help needed? (Non-service users who think a service would be helpful AND do not have all the help needed)

10. Demographics Gender** (n=1,147) Age (n=1,117) * p<0.05; ** p<0.01

11. Demographics (cont’d) Marital Status(n=1,137) Children < 18 Living in Household (n=1,143)

12. Demographics (cont’d) Race/Ethnicity**(n=1,136) Country of Origin (n=1,143)

13. Demographics (cont’d) Education (n=1,143) 2001 Household Income (n=963)

14. Demographics (cont’d) Employment (n=1,147)

15. Financial Hardship Financial Hardship** (n=1,124)

16. Family Relationship Has CGing created conflict in your family?** (n=1,120) Has CGing been a hardship for your family?** (n=1,120)

17. Family Relationship (cont’d) Has CGing brought your family closer together? (n=1,104) Are you setting an example for children in your family? (n=1,044)

18. Family Relationship (cont’d) Do you feel that you are contributing to your family?** (n=1,120)

19. Strain Physical strain from CGing** (n=1,136)

20. Strain (cont’d) Emotional strain from CGing ** (n=1,140)

21. Health Self-reported CG health** (n=1,144) Sleep Interruption** (n=1,145)

22. Support Do you have other’s support/understanding of what you go through?** (n=1,134)

23. Logistic Regression (Don’t have all the help = 1) * p<0.05; ** p<0.01

24. Unmet Need & Service Type * p<0.05; ** p<0.01

25. Barriers to Information* * Identified by the study sample; Identification of multiple barriers allowed

26. Barriers to Access

27. Barriers to Education

28. Barriers to Counseling

29. Barriers to Counseling from Clergy

30. Barriers to Support Group

31. Barriers to In-home Respite

32. Barriers to Day Respite

33. Barriers to Night Respite

34. Barriers to Legal Information

35. Barriers to Financial Aid Information

36. Barriers Most Identified Barriers: Cost No desire from CR Service not available Service not available when needed No one to stay with CR while CG gets help No time Poor quality Transportation Services not offered by people like them language Least Identified Barriers:

37. Discussion • Higher proportion of female and minority groups have unmet needs. • Non-service users with unmet needs are in worse shape (lower income, more strain, etc.). • Although CGs may have experienced different barriers for different service types, three most important ones are cost, CR desire and availability of the service.

38. Implication • Outreach to educate CR as well as CG (Educate that services help CR and ease the burden on CG) • Troubling: Lack of available services • Assuming services exist, CG’s knowledge about the availability of services is a barrier.

39. References Clipp, E. & George, L. (1990). Caregiver needs and patterns of social support. Journals of Gerontology, 45 (3), 102-111. Cotrell, V. (1996). Respite use by dementia caregivers: Preferences and reasons for initial use. Journal of Gerontological Social Work, 26 (3/4), 35-55. Kosloski, K. & Montgomery, R. (1993). Perceptions of respite services as predictors of utilization. Research on Aging, 15 (4), 399-413. Lawton, M., Brody, E. & Saperstein, A. (1989). A controlled study of respite service for caregivers of Alzhimer's patients. The Gerontologist, 29, 8-16. Montgomery, R. & Borgatta, E. (1989). The effects of alternative support strategies on family caregiving. The Gerontologist, 29, 457-64. Stone, R. & Others. (1986). Caregivers of the frail elderly: A national profile. Rockville, MD: National Center for Health Services Research and Health Care Technology Assessment.

40. Thank You! Center for the Advanced Study of Aging Services University of California, Berkeley http://cssr.berkeley.edu/aging