Alzheimer's and Latinos

1. Alzheimer's and Latinos Henry Pacheco, M.D. Medicine & Public Health Director National Hispanic Council on Aging (NHCOA) Washington, DC National Hispanic Council on Aging (NHCOA) Working to improve the lives of Hispanic older adults, their families, and caregivers

2. Objectives • Provide an overview Alzheimer’s Disease • Describe risk factors, signs and symptoms and progression of Alzheimer's Disease • Describe some diagnostic and treatment challenges • Describe the impact of Alzheimer’s on the Hispanic population • Understand the importance of focusing on the caregivers of people with Alzheimer’s

3. Dementia “Dementia is a general term for a decline in mental ability severe enough to interfere with daily life.” ( ALZ Assoc, 2012) • Not a specific disease • Describes a collection of symptoms • Caused by many disorders that affect the brain • Results in impaired intellectual functioning

4. Alzheimer’s and other Dementias • Alzheimer's Disease – 60-80% of all dementias • Vascular Dementia -10%-20% • Dementia with Lewy Bodies (DLB) – 5%- 10% • Mixed Dementia • Parkinson's Disease • Fronto-Temporal Lobar Dementia (FTLD) 15%- 25% • Creutzfelt-Jacob Disease • Normal Pressure Hydrocephalus

5. Alzheimer's Disease (AD) Alzheimer’s Disease An irreversible, progressive and fatal neuro-degenerative brain disease. Characteristics: 1)Loss of memory, (inability to learn new and recall old information) 2) Decline or loss of one or more of the following: • Language (aphasia) • Purposeful action (apraxia) • Recognition (agnosia) • Executive functions (think abstractly, judgment) Interference with social or occupational functions of daily life DSM-IV Criteria for Diagnosis of Alzheimer's

6. Normal Cognitive Decline Related to Aging • Decrease in the rate of information processing, especially non-verbal information • Reduced spontaneous recall • Small decrease in executive skills • Still able to learn new information, but decline in recall Sources: AMA Therapeutic Insight Management of Alz Disease, 2010

7. Other Causes of Cognitive Impairment • Chronic alcohol or drug abuse • Tumors • Subdural hematoma • Normal pressure hydrocephalus • Metabolic disorders • Hypothyroidism • Hypoglycemia • Side effects of certain medicines • Medication interactions • Depression • Psychotic disorders • HIV Dementia • Lyme’s Disease, Syphilis • Low literacy or language impairment (may appear as cognitive impairment)

8. Alzheimer’s Disease • Older age is primary risk factor: AD incidence doubles every 5 years after age 65 • Family history • Lower educational level • Female • Genetic Risk factors: mutation in 3 genes associated with AD • Amyloid Precursor Protein (APP) • Presenillin -1 (PS1) • Presenillin-2 (PS2) Apo lipoprotein E (APOE) Sources: 1)NIH ,2012 , 2) AMA Therapeutic Insight Management of Alz Disease, 2010

9. Inside the Human Brain Neurons • The brain has billions of neurons, each with an axon and many dendrites. • To stay healthy, neurons must communicate with each other, carry out metabolism, and repair themselves. • AD disrupts all three of these essential jobs. Slide 14

10. Symptom Cascade of AD • Early: forgetfulness (2-4 years) • Mild cognitive impairment between normal forgetfulness of aging and the development of AD • Moderate: (2-10 years) • Change in sleep patterns, delusions, depression, agitation • Difficulties in simple tasks, dressing driving, reading or writing • Forgetting details of current events, losing self-awareness • Argumentative, aggressive behavior, poor judgment • Using the wrong words, mispronouncing, confusing sentences • Withdrawing from social contact • Advanced: (1-4 years) • Fails to understand conversations • Fails to recognize family members • Can’t perform basic activities of daily living( eating, dressing, and bathing), incapacitated • Incontinence , swallowing problems • Death usually from infections such as pneumonia

11. Importance of Early Diagnosis To allow effective preparation for: • Family & patient counseling • Life style modifications • Diet/aerobic exercise • Control of chronic diseases HTN, diabetes, etc. • Start disease treatment earlier • Early planning for the future (not overwhelm the patient or the family) There are often subtle cognitive impairments in early AD that may go underdiagnosed by PCPs this may be specially the case forAfrican American & Hispanic patients.

12. Treatment of Alzheimer’s Support • Care planning through the stages • Coordinated care options for patients • Support of care Medications Cholinesterase Inhibitors For a limited time may delay or prevent symptoms.

13. Most Important: Care Planning • Advance directives, durable power of attorney • Planning for quality of life, driving, etc. • Mental health evaluation • Functional assessments on regular basis • Cognitive assessment on regular follow -ups • Behavioral assessment ( mood, activities, etc.) • Discuss medications • Terminal care

14. The Caregivers • ~ 15 million people provide unpaid care for people with Alzheimer's • Caregivers are generally older (52+) and female • Spouses (the largest group of caregivers) • Daughters (the sandwich generation) • Family members • Friends, neighbors, members of non-profit organizations • AD represents a very significant emotional, psychological, financial and physical burden for caregivers and their families. • Caregivers are vulnerable to physical, emotional and financial stress • Essential AD care involves providing information and support interventions (psycho-educational, supportive, psychotherapy, etc.) to caregivers Sources: ALZ Assoc. 2012

15. Care Planning For Caregivers • Evaluate understanding of Alzheimer’s and provide education • Referral to resources: local community and national resources(Alzheimer’s Association, day care, respite programs) • Evaluation of support system (family, friends) • Coping, stress, depression and potential abuse • Caregiver training (safety precautions at home ) • Keeping a log for Alzheimer’s patient • Placement of Alzheimer’s patient in nursing home

16. Alzheimer's Disease and the Aging of the Population in the US • More than 5 million people have AD • It’s the 6th leading cause of death • 11 - 16 million adults 65+ projected to have AD by 2050 • Mortality secondary to AD is up 20% in the past decade • Cost of caring for people with AD ~ $200 billion a year and growing Source: ALZ Assoc. 2012, NIH, AOA

17. Alzheimer’s and Latinos Working to Improve the Lives of Hispanic Older Adults, their Families, and Caregivers

18. NHCOA Alzheimer’s Study Qualitative Research Study • Assessed Latino older adults’ and Latino caregivers’ attitudes and knowledge about Alzheimer’s disease • Challenges faced by Latino caregivers in caring for Alzheimer’s patients • NHCOA worked in cooperation with the Center for Global Health at the George Washington University Focus Groups and Interviews  • Focus groups: Hispanics over 55 years of age and Hispanic caregivers • Interviews with health care providers • 25 focus groups and 21 interviews in Washington, DC; and in Dallas, Alamo, Brownsville, and Pharr, TX • 226 participants: 109 older adults and 117 caregivers • Most participants were of Mexican background, but included people of other Latino backgrounds

19. NHCOA Study Findings • Overall lack of knowledge, information and resources in Hispanic community • Some older adults confused Alzheimer’s with different conditions, or just simply called it “craziness” or “mental illness.” • Latino older adults may be open to a provider’s suggestion of being screened for Alzheimer’s • The likelihood of agreeing to be screened is affected by fear, lack of knowledge, denial, poverty, lack of health insurance, language barriers, and lack of access to healthcare

20. Coping with Difficult Behaviors • A presentation by: Thomas Magnuson, M.D. Assistant Professor, Department of Psychiatry, UNMC www.unmc.edu/media/intmed/.../dealingwithdifficultbehaviorsi_.ppt

21. Bibliography • National Institute of health/National Institute on Aging • National Institutes of Health. US DHHS. Alzheimer's Disease Education & Referral (ADEAR) Center. Alzheimer's Disease Fact Sheet. Bethesda, MD: National Institutes of Health; 2011. NIH Publication 11-6423 • Current Medical Diagnosis & Treatment 2013 • 2010 Progress Report, National Institute on Aging, National Institute of Health & Human Services, Dec 2011 • Alzheimer's Association Facts and Figures 2012

22. Thank You!