Christine McKibbin, PhD & Catherine Carrico, PhD Wyoming Geriatric Education Center.
Transcript of Christine McKibbin, PhD & Catherine Carrico, PhD Wyoming Geriatric Education Center.
Native Americans and Dementia: Dealing with Emotional Issues Among
Caregivers
Christine McKibbin, PhD & Catherine Carrico, PhD
Wyoming Geriatric Education Center
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
Impact of Historical Events
1900-1920
1920-1940
1940-1960 1960-1980 1980-Present
Reservations
Citizenship World War II Service
Vietnam War
Education of Professionals
“Vanishing America”
Adoption of Indian Children by Whites
Relocation by BIA to Urban Areas
Indian Activism
Litigation
Forced Boarding Schools
Loss of Land by Allotment System
Forced Assimilation
Urbanization for Education & Jobs
Urban Pan-Indianism
Law Banned Spiritual Practices
Boarding Schools
Reservation Gaming
Cohort Experiences
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
Interactions with Healthcare Providers
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
Conflicting Expectations
Values & BeliefsAmerican Indian Euro-American
Cooperation Competition
Group harmony Individual achievement
Modesty & humility Overt identification of achievements
Physical modesty Physical exhibition
Non-interference Advice giving, directiveness, counseling, educating
Silence is valued; ability to listen and wait
Rapid responses; decision making; problem solving
Generosity & sharing; material possessions given away
Individual ownership; amassed material property
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
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
Communication
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
Language 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
Domains of Ethnogeriatric Assessment
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
Assessment: Background
Modesty and privacy valued Make requests in quiet and pleasant manner Asking permission is important Take care to keep the body covered
Assessment: Physical Exam
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
Assessment: Cognitive and Affective Status
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”
Assessment
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?
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
Explanatory Models of Illness
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
Culturally Appropriate Prevention and Treatment
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
Issues in Treatment: Informed Consent
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
Issues in Treatment: Advanced Directives
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
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
Native Americans and Dementia
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
Dementia and Caregiving
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
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
Native American Caregivers
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
Need & Utilization 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
Acceptability of Services
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
Promoting Acceptability
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.
References