Alzheimer s Disease: Latino Caregivers

1. Alzheimer�s Disease: Latino Caregivers Elvira Jimenez CHS 286 March 10, 2008

3. Alzheimer�s Disease (AD) and Related Dementias �AD affects memory, ability to learn, reason, make judgments, communicate and carry out daily activities�(Alzheimer�s Disease Association, 2006) Progressive disease with increasing disability Currently there is no cure for Alzheimer�s disease and much of the resources focus on preserving quality of life of those affected This illness has substantial emotional, financial and physical demands on families

4. Dementia Caregiving Caregiver has to resolve a range of issue (McMillan, 2005) activities of daily living Medication management eating transportation emotional support interacting with health care professionals Caregiver demands grow as the patient becomes more impaired

5. Literature is Scarce� Pub med search: [(caregiver ) OR caregiving)] and [(caregiver) OR [(dementia) OR (Alzheimer�s Disease)]= 3459 When crossed with (hispanic) OR (Latino) and limited to the last 5 years= 30

6. Findings: Stress/ Burden Latinos do suffer from higher stress and depression due to their caregiving duties Higher cortical levels and perceived stress than non-caregiver however their levels were lower than for whites (Gallagher-Thompson et al, 2006) Two samples (USA and Spain) both groups had burden and depressive symptomology (Losada et al., 2003) Found a higher rate of depression among Latino caregivers using the Geriatric Depression Scale (Covinsky et al., 2003) However, compared to whites Latinos have less burden Latinos: had lower level of depression and higher level of self acceptance than whites (Morano and King, 2003)

7. AD-Severity Latinos with AD are not less impaired Black and Latino community-dwelling patients with moderate to severe dementia have a higher prevalence of dementia-related behaviors than whites (Sink et al., 2004)

8. Quality of Caregiving Latinos reported higher self- efficacy when responding to disruptive behaviors and controlling negative behaviors (Depp et al., 2005)

9. Service Utilization Latinos had smaller social support networks and less help-seeking behaviors (support groups) (Valle et al., 2004) Cognitively impaired Latinos were less likely to be institutionalize by their families compared to Caucasians (Mausbach et al., 2004)

10. Culture is a factor in the AD Latinos incorporated folk with biomedical modes in their understanding of the illness (Hinton et al., 2005) Cultural influence beliefs about the nature of caregiving Participants expressed a firm commitment to family-based home care (Neary et al, 2005) Utilize the formal care system in order to keep their relatives at home �Participants viewed nursing home placement as a breach of their familial duty and as an option of last resort.�

11. Culture Mediate Caregiver Burden Studies have found cultural factors to buffer or mediate caregiver stress and to inhibit respite service utilization. Familism: putting the needs of the family and its members above the needs of individuals Familism was significantly correlated with lesser burden in the USA Hispanic caregiver sample, but with higher levels of depressive symptoms in the Spanish sample. (Losada et al., 2006) Religiosity: Latinos had higher level of religiosity than whites � correlating with low levels of depression (Morano and King, 2005) Covinsky et al (2003), found a high rate of depression among caregivers, however, multiple factors such as culture, patient and caregiving characteristics mediated this outcome. Lower appraisal of stress, greater perceived benefits in caregiving and greater use of religion to cope with caregiver stress (Coon et al., 2004)

12. Intervention studies Overall Latinos do have a positive response to intervention studies Skill building vs. support group approaches- reported a significant reduction in depressive symptoms(Gallagher-Thompson et al., 2003) Family therapy and technology intervention- Cuban- Americans husbands and daughters showed high benefit and reduced depression (Eisdorfer et al., 2003) El Portal Evaluation- Increased service utilization when reduction of barriers to care.(Aranda et al., 2003)

13. Research question How do cultural specific factors in Latinos affect access and utilization of caregivers services?

14. Quantitative Are cultural factors a reason Latinos and their caregivers fail to access medical and respite care? Recognizing health disparities due to ethnicity it is hypothized that Latinos afflicted with dementia will have lower utilization of respite and medical dementia compared to whites Access to culturally sensitive services will result in higher utilization of medical and respite services among Latinos Latinos will report cultural factors, such as care giving beliefs, as a viable explanation for not utilizing services

15. Andersen Model Service utilization based on the individual�s predisposing, enabling and need factors. Predisposing variables- individual characteristics such as demographic variables Enabling factors- facilitate an individual�s usage of services such as financial or supportive resources Need- user�s perception of that particular service such as the level of illness or disease

16. Problem Quantitative studies only provide insight into relationships and fail to identify specific cultural factors that may mediate or increase caregiver stress

17. Qualitatively What culture specific factors explain caregiving for Latinos and their caregivers in dementia care? Assumptions Latinos afflicted with dementia will state that they do not routinely use respite and medical services to manage the illness Latinos will report or the observations demonstrate cultural factors, such as care giving beliefs, as explanation for not utilizing services Caregivers will state that family is responsible for taking daily care of the needs faced by the patient. Latino caregivers will report Alzheimer�s disease to be a normal part of aging. Method: (1) interviews of caregivers to Latino diagnosed participants and (2) observations at dementia care facilities providing services to Latinos in Los Angeles County.

18. Grounded Theory (Strauss and Corbin 1998) Proven to be helpful in situations where � a theory is not available to explain a process . �Focus is on understanding how individuals experience the process and identify the steps in the process�. A qualitative research design in which the inquirer generates an explanation (a theory) of a process, action or interaction shaped by the views of a large number of participants

19. What Next�. Database Alzheimer�s Disease Reseach Center (ADRC) Longitudinal study Clinical data Study sites Olive View medical center - ADRC satellite El Portal East LA

20. Limitations Existing data may be limited to look at access Interview process lengthy Heterogeneity within Latino population

21. Thank you!!!! Comments: Elvira@ucla.edu