Application of Cultural
Competence in the Care of
Alzheimer’s Patients
Maria Luisa Faner, MSN, APRN,
FNP-C
Objectives
• Demonstrate an awareness of diversity and culture on
concepts surrounding the care of Alzheimer’s patients.
• Recognize the importance of cultural diversity in
communicating and planning an effective plan of care
for Alzheimer’s patients.
• Define expected treatment outcomes in terms of the
culture, values, and ethical perspective of the
healthcare consumer.
• Adapt cultural awareness and competence in
formulating a holistic approach toward the Alzheimer’s
patients and their family
What is Alzheimer’s Disease?
• Discovered in 1906 - Alois Alzheimer
• Hallmark - beta-amyloid plaques
• Neurodegenerative disease - progressive,
irreversible cognitive decline
• Mild Alzheimer’s- cortical shrinkage,
moderately enlarged ventricles, shrinking
hippocampus
• Severe Alzheimer’s- severe cortical shrinkage,
severely enlarged ventricles, severe shrinkage
of hippocampus
10 Warning Signs of AD
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1. Memory Loss
2. Difficulty performing familiar tasks
3. Problems with language
4. Disorientation to time and place
5. Poor or decreased judgment
6. Problems with abstract thinking
7. Misplacing things
10 Warning Signs of AD
• 8. Changes in mood or behavior
• 9. Changes in personality
• 10.Loss of initiative
(Source:Alzheimer’s Association)
Stages of AD
• Early = MCI, sense of smell
• Mild =getting lost, financial, repetitive, takes
longer with tasks, poor judgment, personality
• Moderate = memory loss, confusion,
decreased ability to recognize, unable to learn
new things, tasks with multiple steps, coping,
behavioral changes
• Severe = communication difficulties
Progression
• Disease spreads throughout cerebral cortex
decline in language, judgment, behavior,
bodily functions  decline in memory until
death
By the numbers
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5.4 million Americans 2014
500,000 added yearly
By 2050- 12.5 billion
Etiology- Genetic, environmental, lifestyle, CV
disease, HTN, High cholesterol, diabetes
• Prognosis- death 8-10 years after diagnosis
• “Early Stage”, “younger onset”
By the numbers
• Costs for care - $214 billion in 2014
*$150 million to Medicare/Medicaid
• Projection - $1.2 trillion by 2050
• Cost to families:
2013 - 15.5 million families provide
17.7 billion hours of unpaid care= $220 billion
• 80% care by unpaid caregiver
By the numbers
• 30% of US population= non-Caucasian of
various races or ethnic origins
• Largest = Hispanic/Latino and AfricanAmericans
• 2050 = 394 million non-whites
• 90% = Asians, African-Americans, Hispanics
Management of AD
• Medications - may help maintain memory/
speaking skills, certain behavioral problems
Mild-moderate
Moderate-severe
• Day-to-day care - ADLs
• Social, mental, physical stimulation
• Physical activities - continue/modify
Management of AD
• Exercise, nutrition, diet supervision
• Managing behavioral symptoms:
sleeplessness, agitation, wandering
-Redirection
-Engaging methods
-Prevent wandering
• Make patient comfortable “care easier”
Management of AD
• Culturally specific interventions- music, food,
language
• Reminders -who they are, what they used to
do
• Validation Therapy
• Listening, responding to questions
• Priest/Minister/Lay counselor
• Caregiver relief/Community support
Definitions
• Culture - values, beliefs, traits, traditions,
and/or language shared by members of a
group
-A predominant force that shapes behavior,
values, institutions
-Lenses through which people view the world,
how they relate to it
Definitions
• Ethnicity = belonging to or distinctive of a
particular racial, national, cultural or language
division of mankind
• Cultural awareness = understanding how
persons are shaped, issues that influence
reactions
• Acculturation = participation in values,
language, practices of an ethnic group
Definitions
• Diversity = distinctions such as culture, race,
religion, ethnicity, gender, language, any
observed differences common to a group of
individuals
Definitions
• Cultural competence = understanding,
listening, obtaining information, applying
information
*Whatever it takes to respond effectively/with
sensitivity to cultural, racial differences as
they impact healthcare delivery, outcomes
*Commitment to provide quality services to
all
Difficulties
• Viewing others’ cultures, behaviors through
own lens
• Ethnocentricity - superiority of one’s own
ethnic group, viewing others’ cultures from
own perspective
• Lack of understanding of different political,
ideological agendas
• Lack of time
Developing Cross-cultural Mindset
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Be aware of aspects of culture not visible
Pay attention to your thoughts
Maintain cultural humility
Be willing to adjust your behavior
Take time to learn and explain
Arrange for translator if necessary
Diversity
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Non-Hispanic whites/ Europeans
African-Americans
Hispanics
Asians/Pacific Islanders
Middle eastern
Diverse beliefs
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History/Immigration/Language barriers
Difficulty in asking for help
Filial piety, familial hierarchy/obligation
Taboos- illness, death/dying, hospitals,
physical contact, staring, evil spirits, curse,
soul loss, food/animal sacrifices
• Sense of time control
• Internal cultural support mechanisms
Culturally-based Beliefs
• Personalistic = illness caused by intervention
or a supernatural being, deity, dead ancestor
• Naturalistic = health closely tied with natural
environment; balance/harmony.
*Three approaches: Humoral (hot and cold),
Ayurvedic (herbs, minerals), Vitalistic
(imbalance in vital energies)
• Biomedicine = body-as-machine metaphor
Testing Methods
• Neuropsychological tests - impairment of
performance in memory and 2 other cognitive
domains
• MMSE – racial, ethnic, cultural differences
• Benton Visual Retention Test
• Few cognitive measures validated for use
among ethnic minorities = cognitive
impairment
Cognitive Testing Variability
Factors:
• Level of acculturation
• Years of education, occupation, income
• Non-verbal abstraction abilities
• Life experiences
• Place of birth - border/interior
• “Cognitive reserve”, compensation, more
efficient use of brain networks
Non-Hispanic whites/ Europeans
• Polish - stoic, suffer in silence, pain comes
from God; communicate condition to family
• German - self-control in response to pain,
cause of illness: lack of cleanliness, self-abuse
• Russian – Friday, 13th, stoic, patient care =
family responsibility, “intrusion” from HCP
• Italians – Pts. want to know about their health
condition, touching is OK
African Americans
• Alzheimer’s Prevalence- 14-100% > than
whites
• Risk Factor- CV disease, silent infarcts
(decrease in cognitive reserve)
• Fear /mistrust of medical matters
• Low participation in research
• Religion/Spirituality
Hispanics
• Prevalence of Alzheimer’s - higher
• DM (small vessel disease AD pathology)
• Number could increase > 6x by 2050
(< 200,000  1.3 million)
• Belief in leaving things to God
• Traditional family roles/parental hierarchy
• Less education, poor assimilation
Asians/Pacific Islanders
• Ethno-cultural groups - Chinese, Japanese,
Filipinos, Vietnamese, Cambodians, Koreans,
East Asian Indians, Samoans, Hmong, Thai
• Religious beliefs, taboos, traditions
• Expected support of elderly family members
• Reluctance to seek care
• Perception of stigma, shame for condition
• Distrust of government
Asian/Pacific Islanders
• Buddhism - health beliefs affected by Taoism
• Confucianism - respect for authority, filial
piety, justice, benevolence, fidelity
• Ayurveda principles - Hindu philosophy
• Chinese traditional concepts of yin and yang
• Christianity/Catholicism
• Behavior symptoms - natural consequences of
aging, exacerbated by migration, culture shock
Middle Eastern
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Majority - Muslims (7M in America)
Amulets against evil eye, incense, prayers
Emphasis - maintaining good health, diet*
Generally prefer male doctors (except Gyn)
Recovery from illness - seeking Tx, God’s will
Elders have prestigious status, paternalism
Generally look down on mental illness
Communication in AD
• Lengthy explanation
-PCP stages of dementia, impending future
decisions
• Encouraging questions, dialogues on eventual
choices
• Value-oriented discussions - patients, family,
surrogate
• Involvement with community groups, support
groups
ETHNIC Framework
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E- Explanation
T- Treatment, home remedies
H- Healers, friends
N- Negotiate mutually acceptable treatment
plan
• I- Intervention, incorporating alternative
treatments, spirituality, healers
• C- Collaboration
Cultural Aspects of Communication
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Speaking too loud
Standing too close
Reluctance to speak/maintain eye contact
No answer to simple question, metaphors
Refusing care
“Non-compliance”, “no show”
Limited English Proficiency
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English is a difficult language!
Keep it simple
Feedback - give/seek
NOT understanding/misunderstanding
Speak slowly/clearly/ NOT loudly
Repeat as necessary
Avoid acronyms/idioms/abbreviations
Write it down/demonstrate/EXPLAIN!
Treatment Outcomes for AD
• Longevity Care - do everything!
• Functional Care - do what is required
• Palliative Care - “Comfort Care”
Timely End-of-life Talks for AD
• Where to begin? When?
• Do I have answers to questions?
• Primary care - identify high-risk patients,
communicate prognosis, clarify values, involve
surrogate decision-makers
• Estate planning, advance directives, living will,
register resuscitation orders
Cultural shift in EOL care
• Burden –partially on medical providers, large
burden on culture as a whole
• Shift in attitudes to EOL
• Approaching/discussing death more openly
• Intervention within cultural centers, churches
AD Caregiver Care
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Day-to-day care-physical, emotional, financial
Changing family roles
Difficulty making decisions- placement
Guilt, blame, regrets
Caregiver Support
Do you regularly...
• 1. Feel like you have to do it all yourself and that
you should be doing more ?
• 2. Withdraw from family, friends and activities
that you used to enjoy?
• 3. Worry that the person you care for is safe?
• 4. Feel anxious about money and healthcare
decisions?
Caregiver Support
• 5. Deny the impact of the disease and its
effects on your family?
• 6. Feel grief or sadness that your relationship
with the person isn't what it used to be?
• 7. Get frustrated and angry when the person
with dementia continually repeats things and
doesn't seem to listen?
• 8. Have health problems that are taking a toll
on you mentally and physically?
Caregiver Support
• Join a support group
• Get strategies to manage stress
• Learn new care-giving skills as the disease
progresses
• When people offer to help, let them
• Know what community resources are available
• Respite care
Community Caregiver Support
• Area Agency on Aging- stress management
techniques, relaxation, coping strategies
• Alzheimer’s Association- education programs,
culturally, linguistically sensitive outreach
programs
• National Institute of Aging- innovative programs
and initiatives to close racial/ethnic gaps
• http://www.alz.org/care/alzheimers-dementiasupport
Alzheimer’s Association of El Paso
• Education Programs:
-Conversations about Dementia
-Know the 10 signs- early detection
-The Basics- memory loss, dementia, AD
-Living with Alzheimer’s- People with
Alzheimer’s/Younger onset/Caregivers
-Legal and Financial Planning
-Diversity Outreach Programs
Alzheimer’s Association of El Paso
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24/7 Helpline: 1-800-272-3900
ALZConnected- online community
Alzheimer’s Navigator
Alzheimer’s Association Trial Match
Community Resource Finder
Care Team Calendar
Approaching Alzheimer’s: First Responder
Training
Alzheimer’s Association of El Paso
• MedicAlert+Alzheimer’s Association Safe
Return- 24 hour Nationwide Emergency
Response Services
Online: medicalert.org/safereturn
Call: 1-888-572-8566
• Telephone Caregiver Support Group:
Contact Kelli Moorhead 1-800-272-3900
Interdisciplinary Team in AD Care
• Administration, Supervisors
• Staff - nurses, PT, OT, Speech Therapist,
recreational, social workers, home care
providers, family
• Support staff - dietary, outreach, community
resources, daycare
“Grandma doesn’t know me anymore”
References
• Frederick, D., Marinelli, M. (2014). Achieving
cultural competency: Adapting to diversity
improves patient care. OR Nurse 2014. 28-33.
• Manly, J., Mayeaux, R. (2004). Ethnic
Differences in Dementia and Alzheimer’s
Disease. NCBI Bookshelf.
http://www.ncbi.nlm.nih.gov/books
• McCullough, D (2008). My Mother, Your
Mother. Harper Collins, NY,NY
References
• pbs.org/theforgetting
• You, J. (2014). Just ask: discussing goals of
care with patients in hospital with serious
illness. CMAJ 2014; 186 (6): 425-432.
• www.brightfocus.org/alzheimer’s
• www.caregiver.org
Questions?