Native Americans and Dementia: Dealing with Emotional Issues Among Caregivers

1. Native Americans and Dementia: Dealing with Emotional Issues Among Caregivers Christine McKibbin, PhD & Catherine Carrico, PhDWyoming Geriatric Education Center

2. Impact of Historical Events • Unique relationship between AI/AN(s) and federal government • Intergenerational grief and anger – boarding schools, other key events (see table on next slide) • Intergenerational acceptance and survival • Native American patients and their families will have more distress

3. Cohort Experiences

4. Interactions with Healthcare Providers • Be aware that there will be lower levels of trust from Native American patients and their families • Knowing historical events and context will help establish trust • However, do not assume any particular cultural knowledge or practice by the older Native American

5. Conflicting Expectations • American Indian and Euro-American values often differ • These values affect the patients’ behavior, attitudes, and beliefs about health care and treatment • Also affect the expectations of the health care provider • Increasing your understanding of conflict in value systems will enhance ability to collaborate successfully • Treatment planning and health care should be culturally congruent and respectful

6. Values & Beliefs

7. Culturally Appropriate Geriatric Care • Listening valued over talking by many elders • Calmness and humility valued over speed and directiveness • Avoid “invisible elder” syndrome • Incorporate elder’s understanding of the situation • Use this understanding to inform treatment planning

8. Communication • Verbal communication • Elders often report English speakers “talk too fast” • Silence is valued • Interruption is extremely rude, especially interruption of an elder • Non-verbal communication • Physical distance • Eye contact • Emotional expressiveness • Body movements • Touch – not usually acceptable except for a handshake

9. Language Assessment • Many speak English, but some may be monolingual • Literacy level should be assessed • What grade level of English do they understand? • May need to keep words simple • Older adults often need time to translate concepts into Indian language or thought and then back to English/Western thought before answering

10. Domains of Ethnogeriatric Assessment • Ethnogeriatrics: considers the “influence of ethnicity, and culture on the health and well-being of older adults." (American Geriatric Society) • Assessment should include many components including: • Background • Clinical Domains • Health History • Physical Exam • Cognitive and Affective Status

11. Assessment: Background • World view • Life experience • Exposure to traditional Indian beliefs and practices • Inter-tribal marriages • Military service • Status of health care benefits • Medicare, Medicaid, HMO, IHS

12. Assessment: Physical Exam • Modesty and privacy valued • Make requests in quiet and pleasant manner • Asking permission is important • Take care to keep the body covered

13. Assessment: Cognitive and Affective Status • Memory loss often minimized by family & community • Culturally modified Mini-Mental Status Exam • Functional Status • Assess appropriateness of common ADL and IADL scales • Home & Family Assessment • Typical home safety • Also, family care patterns, gender taboos, feelings about outsider assistance • Gender Roles – vary greatly between tribes • Family willingness and knowledge base

14. Assessment • Advanced directives and end-of-life preferences • Assess when appropriate • Not until a relationship with some trust has developed • Problem/Condition Specific Information • Problem-oriented format may be offensive and patronizing to elders • Implies a power differential between health care provider and the “person with the problems”

15. Explanatory Models of Illness • Very important to explore beliefs concerning the causes of and treatment for illness • Many culturally-mediated beliefs for the cause of dementia and other conditions • Ask questions such as: • What do you think has caused you to experience __ ? • Why do you think it started? • What do you call it? • How does it work? • Does anyone else need to be consulted? • What type of treatment do you think you should receive?

16. Explanatory Models of Illness • Use gathered information to plan culturally acceptable intervention and treatment • Collaborative relationship with American Indian elders and their families most effective • Explanation for Dementia on Wind River: • Someone has bad will against individual or their family and has used bad medicine on the person with dementia. • Likely seek medicine man on his/her own • Important that patient knows how western medicine can help • Can use in conjunction with traditional health or medicine man

17. Culturally Appropriate Prevention and Treatment • Depend upon elder’s tribal affiliation, level of traditional beliefs, belief in Western biomedical health care system • Most Native American’s have some exposure through IHS, military, or urban clinics • Emphasize importance of obtaining detailed history • Elders’ experiences will be quite varied • A detailed history helps provider begin to understand influence of tribal and cohort influences

18. Issues in Treatment: Informed Consent • Literacy should be assessed • Is an interpreter necessary? • Give ample time for consideration and consultation with others • May consult leaders, matriarchs, patriarchs, religious leaders, medicine persons • Medical procedures may only be appropriate on certain dates, determined through consultation with native healers • After slow and deliberate consideration of treatment options, an elder may not choose to accept the treatment

19. Issues in Treatment: Advanced Directives • Elders may be less likely to have written Advanced Directives, due to: • Historical misuse of signed documents • Distrust of the dominant system • Belief families will take care of decision making and know preferences

20. Native Americans and Dementia • NA appear to have lower frequency of dementia than other populations • Less likely to be institutionalized • Orientation to present time, taking life as it comes • General acceptance of physical and cognitive decline as part of aging

21. Native Americans and Dementia • Memory loss not often presenting complaint • Most common problems reported include understanding instructions and recognizing people they know • Least common behaviors were wandering and exhibiting dangerousness (John, Henessey, Roy & Salvini, 1996) • Behavior of individual with dementia is accepted without social stigma

22. Dementia and Caregiving • One person is likely to feel the obligation of caregiving • Heavy mental burden, depression • Little recognition that caregiving is burdensome • Extended family is central to NA culture • Family should distribute caregiving burden • Family meetings are needed for discussing nursing home placement • Nursing homes are not consistent with Native values

23. Native American Caregivers • Concept of caregiver burden is often unacceptable • Cultural respect of elders may not allow for expression of burnout, anger, etc. • Caregiver burnout may be increased by cultural values of: • Non-interference • Individual freedom • Non-directive communication • Respect for elders • Caregivers – use of “passive forbearance” as coping strategy, not common among white caregivers

24. Native American Caregivers • Strength: NA caregivers do not expect to control the situation of caring for cognitively impaired elder, which white caregivers do • Best to offer culturally appropriate support systems • Educate NA about how outside providers can help keep elder safe

25. Need & Utilization of Services • High level of need among elderly NA, but relatively low level of services available • Barriers include: • Availability • Use of non-IHS services (VA, private) • Long-term care is a primary concern of NA elders • IHS has no program for long-term care • Long-term care often given my family, clan, kin • Tribes typically responsible for LTC

26. Acceptability of Services • Culturally incongruent treatments • Cultural differences in concepts of modesty & propriety • Perceived lack of respect • Long clinic waits • Staff turnover • Fatalistic attitude toward health

27. Promoting Acceptability • It helps IHS if they sign up, including local IHS clinic • Are provided insurance • Family can encourage use of services • Access to specialty services • Able to seek services in town

28. References • Hendrix, L.R. Ethnogeriatric Curriculum Module: Health and Health Care of American Indian and Alaskan Native Elders. Stanford Geriatric Education Center. http://www.stanford.edu/group/ethnoger/americanindian.html • Hendrix, L. (1998). American Indian elders. In G. Yeo, N. Hikoyeda, M. McBride, S.-Y. Chin, M. Edmunds, & L. R. Hendrix (Eds.), Cohort analysis as a tool in ethnogeriatrics: Historical profiles of elders from eight ethnic populations in the United States. Working Paper Series No.12. Stanford Geriatric Education Center, Palo Alto, CA. (650) 494-3986. • John, R., Hennessy, C. H., Roy, L. C., & Salvini, M. L. (1996). Caring for cognitively impaired American Indian elders: Difficult situations, few options. In G. Yeo & D. Gallagher-Thompson (Eds.), Ethnicity & the dementias (chap.16, pp. 187-206). Washington, DC: Taylor & Francis.