PREVALENCE OF DEMENTIA
- Hispanic Americans maybe two times more likely more likely than whites to develop Alzheimer's Disease by age 90. This increase in risk was not related to differences in education or the presence of a family history of an AD-like dementia. (Tang et. al. JAGS 1999)
- A study of community dwelling Hispanics with dementia revealed compared to predominantly white populations, a lower proportion of Alzheimer cases (38.5) and a higher than expected proportion of Vascular dementia (38.5%)(Fitten LJ et al. 2002)
HISPANIC CULTURAL BELIEFS ABOUT DEMENTIA
1.
Female family members are the designated caregivers. The care of people with dementia is the responsibility of the family, with the bulk of the burden of caregiving being delegated to female members of the family( i.e. wife, sister, female blood relative, female non blood relative) Only if there are no female caregivers available, then men are enlisted as caregivers.2.
Non-family members are not initially enlisted as caregivers. Reliance on people or services outside of the family is viewed as shirking one's familial responsiblity and putting undue burdens on outsiders.3.
Dementia is mental illness. Dementia is viewed as a form of mental illness. Many families also believe that the behavioral disturbances which emerge in dementia can be controlled and avoided by a diligent family caregiver (Gallagher-Thompson et al. 1996)4.
Dementia is shameful. Dementia like other forms of mental illness carries a great deal of shame, embarrassment and stigma for the patient and his family. This stigma may cause family members to minimize, deny and hide the behavioral and cognitive problems for outsiders. This sense of shame further discourages caregivers from seeking professional or informal support from others.5.
Family secrets should not be shared. The cultural norm for many family is to avoid sharing family secrets or embarrassing information with strangers, including health care providers.Hispanic Caregiver Attitudes and Barriers to Care
Many Hispanic caregivers are often reluctant to use formal support services including adult day programs, day or overnight respite programs or in-home supportive services.
Some Hispanic caregivers are sometimes fearful of psychologically based interventions such as support groups or psychoeducational programs.
Some Hispanic caregivers are reluctant to admit to symptoms of "burden" because this implies they do not accept their role and are not grateful for the caregiving they have received from her parents and spouses.
Studies suggest that caregivers who are bicultural or attempting to live in both the Anglo and Latino cultures, experience more role strain, depression and guilt about the caregiver role than those who are primarily rooted in traditional Latino beliefs and role expectations (Calderon & Tennstedt 1998, Valle 1998, Cox & Monk 1996)
Hispanic caregivers and patients may be reluctant to use formal health care services since few of those agencies have significant bilingual and bicultural staff:
- to provide accurate assessment and treatment
- facilitate cultural bridges between the health care agency and Hispanic families
- effectively engage Hispanic families in a wide variety of treatment options.
Recommendations for Health care providers
Current research suggests that psychoeducational programs and support groups for reducing stress in Latina caregivers are effective.(Gallagher-Thompson, Arean et al.) El Portal is an example of an effective intervention and psychoeducation program for Latina caregivers conducted in Los Angeles, CA. The programs should be made available to more hispanic caregivers and their families.
The critical need for time-off (respite) for the caregiver should be emphasized to the family members and caregivers.
Influential Hispanic community leaders (eg. priests) should be more aware and educated about dementia These leaders can be urged to develop public education strategies for their constituency and promote increased use of formal support services(Gallagher-Thompson et al. 1994).
Since studies suggest that Hispanics tend to use mental health services on an as needed basis, programs should be designed enough time flexibility to provide services by phone or on an as needed basis
Recruitment and retention of bilingual and bicultural healthcare workers should become important goals for health care agencies.
If bilingual staff is not available, Anglo health care providers should be educated about their Hispanic clients' cultural and personal beliefs, traditions, how they view illness and how they understand their use of supportive services.