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