Application of Cultural Competence in the Care of Alzheimer’s Patients

1. Application of Cultural Competence in the Care of Alzheimer’s Patients Maria Luisa Faner, MSN, APRN, FNP-C

2. 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

4. 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

5. 10 Warning Signs of AD • 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

6. 10 Warning Signs of AD • 8. Changes in mood or behavior • 9. Changes in personality • 10.Loss of initiative (Source:Alzheimer’s Association)

7. 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

8. Progression • Disease spreads throughout cerebral cortex decline in language, judgment, behavior, bodily functions  decline in memory until death

9. By the numbers • 5.4 million Americans2014 • 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”

10. 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

11. By the numbers • 30% of US population= non-Caucasian of various races or ethnic origins • Largest = Hispanic/Latino and African-Americans • 2050 = 394 million non-whites • 90% = Asians, African-Americans, Hispanics

12. 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

13. Management of AD • Exercise, nutrition, diet supervision • Managing behavioral symptoms: sleeplessness, agitation, wandering -Redirection -Engaging methods -Prevent wandering • Make patient comfortable “care easier”

14. 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

15. 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

16. 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

17. Definitions • Diversity = distinctions such as culture, race, religion, ethnicity, gender, language, any observed differences common to a group of individuals

18. 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

19. 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

20. Developing Cross-cultural Mindset • 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

21. Diversity • Non-Hispanic whites/ Europeans • African-Americans • Hispanics • Asians/Pacific Islanders • Middle eastern

22. Diverse beliefs • 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

23. 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

24. 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

25. 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

26. 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

27. 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

28. 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

29. 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

30. 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

31. Middle Eastern • 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

32. 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

33. ETHNIC Framework • E- Explanation • T- Treatment, home remedies • H- Healers, friends • N- Negotiate mutually acceptable treatment plan • I- Intervention, incorporating alternative treatments, spirituality, healers • C- Collaboration

34. Cultural Aspects of Communication • Speaking too loud • Standing too close • Reluctance to speak/maintain eye contact • No answer to simple question, metaphors • Refusing care • “Non-compliance”, “no show”

35. Limited English Proficiency • 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!

36. Treatment Outcomes for AD • Longevity Care - do everything! • Functional Care - do what is required • Palliative Care - “Comfort Care”

37. 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

38. 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

39. AD Caregiver Care • Day-to-day care-physical, emotional, financial • Changing family roles • Difficulty making decisions- placement • Guilt, blame, regrets

40. 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?

41. 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?

42. 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

43. 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-dementia-support

44. 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

45. Alzheimer’s Association of El Paso • 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

46. 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

47. 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

48. “Grandma doesn’t know me anymore”

49. 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

50. 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