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

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

Overview  Literature Review  Research Questions  Method  Results  Discussion & Implication

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).

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).

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

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?

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

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)

Demographics Already have all the help needed Do not have all the help needed Femalef=56472%f=30483% Male21528%6417% Gender** (n=1,147) Age (n=1,117) Under %8925% %11532% %8624% %7220% * p<0.05; ** p<0.01

Demographics (cont’d) Marital Status (n=1,137) Already have all the help needed Do not have all the help needed Marriedf=47161%f=21058% Living w/ partner182%8 Separated182%7 Divorced9913%4813% Widowed486%164% Never Married11915%7521% Children < 18 Living in Household (n=1,143) Yes23731%12634%

Demographics (cont’d) Already have all the help needed Do not have all the help needed ANHPIf=395%f=175% Hispanic18925%11933% African American456%298% White47662%18350% Else213%185% Race/Ethnicity**(n=1,136) U.S.A.f=66185%31286% Else where11715%5315% Country of Origin (n=1,143)

Demographics (cont’d) Education (n=1,143) Already have all the help needed Do not have all the help needed < High schoolf=355%f=195% Some high school446%206% High school graduate16621%6317% Post high school education25333%12634% College graduate19125%9827% Post graduate degree8811%4011% 2001 Household Income (n=963) < $30,00032%53%52%35% $30, %47%48%65%

Demographics (cont’d) Employment (n=1,147) Already have all the help needed Do not have all the help needed Employedf=38650%f=18149% Not employed39350%18751%

Financial Hardship Financial Hardship** (n=1,124) Already have all the help needed Do not have all the help needed No hardship at all – 1f=47763%f=12434% %5214% 39913%7320% 4253%4613% A great deal of hardship – 5446%6919%

Family Relationship Has CGing created conflict in your family?** (n=1,120) Already have all the help needed Do not have all the help needed Very muchf=689%f=8223% Somewhat12717%8524% Just a little13318%6017% Not at all43457%13139% Has CGing been a hardship for your family?** (n=1,120) Very muchf=7810%f=10830% Somewhat14719%10830% Just a little15921%5716% Not at all37950%8424%

Family Relationship (cont’d) Has CGing brought your family closer together? (n=1,104) Already have all the help needed Do not have all the help needed Very muchf=26936%f=12736% Somewhat21529%10229% Just a little9212%3610% Not at all17623%8725% Are you setting an example for children in your family? (n=1,044) Very muchf=55378%f=26380% Somewhat9213%4213% Just a little254%82% Not at all436%185%

Family Relationship (cont’d) Do you feel that you are contributing to your family?** (n=1,120) Already have all the help needed Do not have all the help needed Very muchf=51568%f=25071% Somewhat16422%7922% Just a little527%185% Not at all263%51%

Strain Physical strain from CGing** (n=1,136) Already have all the help needed Do not have all the help needed Not at all stressful – 1f=39051%f=8323% %7220% %8523% 4496%5315% Very stressful – 5486%7320%

Strain (cont’d) Not at all stressful – 1f=24632%f=4312% %4011% %8222% %7621% Very stressful – 59612%12735% Emotional strain from CGing ** (n=1,140)

Health Self-reported CG health** (n=1,144) Already have all the help needed Do not have all the help needed Excellentf=14719%f=4111% Very good19225%7821% Good26935%11632% Fair13417%10328% Poor355%298% Sleep Interruption** (n=1,145) Yesf=15720%f=15342% No62280%21358%

Support Do you have other’s support/understanding of what you go through?** (n=1,134) Already have all the help needed Do not have all the help needed Yesf=62481%f=25972% No14920%10228%

Logistic Regression * p<0.05; ** p<0.01 VariableOdds Ratio CG gender1.6** CG ethnicity1.5** Financial hardship in CGing1.6** CGing created conflict in family1.1 CGing has been a hardship for my family2.2** Physical strain1.7** Emotional strain1.6* Self-report of CG health1.2 Sleep interruption1.6* Have other’s support/understanding of what I go through1.5* (Don’t have all the help = 1)

Unmet Need & Service Type Do not have all the help needed Information**f=23038 % Access**22137 % Education**16538 % Counseling**16045 % Counseling from clergy9233 % Support group**17141 % In-home respite**12345 % Day respite**14742 % Night respite**10146 % Legal information**25541 % Financial information**23439 % * p<0.05; ** p<0.01

Barriers to Information* * Identified by the study sample; Identification of multiple barriers allowed High cost21% No desire from CR18% Not available16% Not available when needed13% Poor quality13% No one to stay with CR while CG gets help12% No time for help12% Transportation12% Service not offered by people like CGs9% Language7%

Barriers to Access High cost23% No desire from CR18% Not available16% No one to stay with CR while CG gets help13% Poor quality13% Not available when needed13% No time for help12% Transportation11% Service not offered by people like CGs10% Language7%

Barriers to Education No desire from CR54% High cost12% Not available15% Not available when needed14% Poor quality Transportation 12% No one to stay with CR while CG gets help No time for help 12% Service not offered by people like CGs10% Language10%

Barriers to Counseling High cost29% No desire from CR23% Not available20% Not available when needed19% Poor quality18% No one to stay with CR while CG gets help17% No time for help16% Transportation14% Service not offered by people like CGs14% Language10%

Barriers to Counseling from Clergy High cost21% No desire from CR17% Not available when needed15% Not available14% Poor quality No one to stay with CR while CG gets help No time for help 12% Service not offered by people like CGs10% Transportation10% Language7%

Barriers to Support Group High cost23% No desire from CR21% Not available18% Not available when needed16% No one to stay with CR while CG gets help15% Poor quality15% No time for help14% Transportation12% Service not offered by people like CGs11% Language8%

Barriers to In-home Respite High cost26% No desire from CR25% No time for help20% Not available No one to stay with CR while CG gets help 19% Not available when needed16% Poor quality16% Transportation13% Service not offered by people like CGs13% Language10%

Barriers to Day Respite High cost25% No desire from CR21% No one to stay with CR while CG gets help18% Not available17% No time for help16% Not available when needed15% Poor quality14% Transportation14% Service not offered by people like CGs12% Language8%

Barriers to Night Respite High cost31% No desire from CR22% No time for help22% Not available when needed21% No one to stay with CR while CG gets help21% Not available20% Poor quality19% Transportation15% Service not offered by people like CGs14% Language10%

Barriers to Legal Information High cost24% No desire from CR21% Not available17% Not available when needed16% No time for help15% Poor quality15% No one to stay with CR while CG gets help14% Transportation Service not offered by people like CGs 13% Language9%

Barriers to Financial Aid Information High cost24% No desire from CR20% Not available Not available when needed 17% Poor quality15% No time for help14% No one to stay with CR while CG gets help Service not offered by people like CGs 14% Transportation12% Language10%

Barriers Most Identified Barriers: Least 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

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.

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.

References Clipp, E. & George, L. (1990). Caregiver needs and patterns of social support. Journals of Gerontology, 45 (3), Cotrell, V. (1996). Respite use by dementia caregivers: Preferences and reasons for initial use. Journal of Gerontological Social Work, 26 (3/4), Kosloski, K. & Montgomery, R. (1993). Perceptions of respite services as predictors of utilization. Research on Aging, 15 (4), Lawton, M., Brody, E. & Saperstein, A. (1989). A controlled study of respite service for caregivers of Alzhimer's patients. The Gerontologist, 29, Montgomery, R. & Borgatta, E. (1989). The effects of alternative support strategies on family caregiving. The Gerontologist, 29, 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.

Thank You! Center for the Advanced Study of Aging Services University of California, Berkeley