1. Policy Changes, Caregiving and Support: Implications for Aging Lesbians Korijna Valenti, M.A, M.S. Gerontology Anne D. Katz, PhD, LCSW Background Sample Future Research Conclusion DemographicsResults Subjects completed a 24-question survey on experiences with health care systems, support systems, and caregiver stress. Data was compared across different dimensions including age, ethnicity, socioeconomic level, and relationship status. Subjects were taken from 17 states and Puerto Rico, with the majority of respondents from California (34), Massachusetts (9) Puerto Rico (7), and Oregon (4). Follow-up qualitative interviews were performed with 17 of the volunteers self-identified as caregivers. Methods There has been increasing attention paid to the lack of services and support afforded mid-life and older lesbian, gay, bisexual, and transgender (LGBT) adults in same-sex relationships, including caregivers. While advocacy for social and legal inclusion is still limited, a recently published 2011 Presidential Memorandum strongly supports allowing patients to receive visitors and choose who should be present for decisions and medical emergencies during their care. Presented are findings from a study conducted in 2010 on the needs and experiences of older lesbian, gay, bisexual, and transgender (LGBT) adults in caregiving situations. A snowball sample (N = 80) was selected from 17 states and Puerto Rico. Subjects self-identified as lesbian, gay, queer, bisexual, or heterosexual. Subjects ranged in age from <40 to 91, with the majority between 51-70 years. 48% of respondents had been an informal caregiver, and 46% of caregiver respondents provided care for a partner or spouse. Subjects with less education and lower income had lower levels of support and more negative experiences with healthcare systems overall. Most participants regardless of support or type of experience with healthcare system felt that the LGBT community was not well-supported and needed better services, advocacy, and federal support. Majority of caregivers did not experience the same level of support from healthcare service providers while caring for partner/spouse as they did as individuals. Over 20% of caregivers experienced problems with finding services (health, legal, support) and communicating with professionals who understood and accepted LGBT partners. Over 20% of respondents worried about end of life care Over half of respondents had trouble balancing other family responsibilities Better support is needed for LGBT caregivers providing informal care for a partner/spouse. The health care industry need to provide health care workers with training on sensitivity and support for LGBT patients and same-sex couples. Federal laws and regulations providing protection and support for same-sex couples need to be enforced in all health care environments, including hospitals, care centers, home health, and transitional housing. Research is needed that includes sufficient numbers of lower socioeconomic members and subjects with lower levels of education. Further research is needed on the impact of current laws and regulations made for LGBT caregivers, partners, and spouses. Research focusing on perceptions of LGBT older adults as individuals vs. same-sex couples and their acceptance/level of support by the health care system workers is needed. Qualitative data gleaned from personal experiences of LGBT older adults with discrimination and the effects on end-of- life/palliative care is necessary. Problems Experienced as a Result of Caregiving Responsibilities VariablesPercent Finding accepting services for LGBT partnerships29.4% Finding out about legal services for LGBT partnerships23.5% Communicating with professional resource providers26.5% Unwanted/unsolicited involvement from family members20.6% End-of-life planning20.6% Balancing other family responsibilities55.9% Table 1. Demographic Characteristics (N=80) Variables% Self Identification Lesbian77.9 Bisexual7.4 Gay7.4 Queer7.4 Heterosexual1.5 Age 71+15 61-7026.6 51-6030 46-5011.7 40-4516.7 Ethnicity Asian/Pacific Islander0.1 African American13.8 Hispanic/Latina20 Caucasian/European63 Other3.1 Annual Income Under 22,00013.4 22,000-30,00010.4 31,000-40,00010.4 41,000-50,0007.5 51,000-60,00011.9 61,000-70,0009 Over 70.00037.3 Level of Education (Highest) High School (Some or Graduated)1.5 1-2 Years College8.8 Associates Degree2.9 Undergraduate Degree36.8 Master's Degree30.9 Doctoral Degree14.7 Current Partner Status Married13 Single24 Domestic Partnership28 Divorced2 Widowed2 Other: Partnered/Lesbian Poly Relationship/Engaged 7