1. Alzheimer’s disease & Dementias by Robin Fenley, CSW Director Alzheimer’s and Long-term Care Unit NYC Department for the Aging

2. What is Dementia? The term given to changes experienced in cognition, behavior and self-care Reversible Metabolic Physiologic Irreversible Alzheimer’s disease ~75% of all dementias

3. Alzheimer’s Disease (AD) Not a normal part of aging Progressive decline in executive functioning Memory loss Inability to learn new tasks Behavioral changes Deterioration in self-care abilities

4. Ten Warning Signs (Alzheimer’s Assoc.) 1.Recent memory loss that effects job performance 2.Difficulty performing familiar tasks 3.Problems with language 4.Disorientation of time and place 5.Impaired judgment 6.Problems with abstract thinking 7.Misplacing things 8.Changes in mood or behavior 9.Personality changes 10.Loss of initiative

5. Medical Work-up Neurological and physical examination Lab tests, EKG, chest X-ray Brain scans CT, MRI, PET EEG Psychiatric evaluation Neuropsychological tests for mental status and cognitive functioning

6. Disease Course of AD Prognosis Insidious onset Avg 8-10 years after diagnosis Up to 20 years Retrogenesis Barry Reisberg, MD, NYU Silberstein Dementia Research Center 20 year reversal in abilities

7. Risk factors Age Family history < 10% Before age 60 High cholesterol High blood pressure Head injury Speculative: Exposure to aluminum Aspartame (artificial sweetner)

8. Treatments Medication Early stage Aricept, Exelon, Reminyl Moderate to late stage Namenda Antipsychotics Antidepressants Vaccine Elan Pharmaceutical, 2002 and 2004

9. Alternative Treatments Vitamin E 400 IU 2x day 1200 IU 2x day in 1997 study Ginkgo biloba 1997 study showed ~improved cognition, ADLs, social behavior Current study with 3000 participants Exercise NYU’s study

10. Facts & Figures 4 million persons with AD nationally Estimated 200,000 in NYC Projected to grow to 14-16 million by 2050 1 in 10 people 65+ Almost 50% for those 85+ (Source: Alzheimer’s Association)

11. Facts & Figures cont’d 4 th leading cause of death in the elderly (heart disease, cancer, diabetes) 75% of individuals with AD are cared for at home (Source: Alzheimer’s Association; National Institute on Aging)

12. The Price of AD Nationally $100 billion/year Direct and indirect care $61 billion/year to business Lost productivity, absenteeism, replacement (Source: Alz Assoc., Nat’l Institute on Aging) Average lifetime costs per person $174,000 (Source: Ernst,RL & Hay,JW. The U.S. economic & social costs of Alzheimer’s disease revisited. American Journal of Public Health. 1994. Cited in Nat’l Institute of Health, 2003.)

13. Challenging Behaviors Psychosis 50-70% incidence rate Theft Intruders Misidentification Infidelity (Source: J.Cummings, MD, UCLA Alzheimer’s Disease Research Center)

14. Depression 25% incidence rate Decreased appetite Decreased interest in life activities Lethargy Apathy (Source: J.Cummings, MD, UCLA Alzheimer’s Disease Research Center)

15. Agitation 60-80% incidence rate Resistance to care Aggression, striking out Shouting ٠Disinhibition٠Irritability ٠Anxiety (Source: J.Cummings, MD, UCLA Alzheimer’s Disease Research Center)

16. Impact of Behavioral Changes Distressing to caregivers Distressing to person with AD Can precipitate abuse Can lead to earlier institutionalization BUT Can respond to medical intervention

17. Engaging the Person with Dementia Respect the dignity of the individual Approach the individual in their direct line of vision Identify yourself in reassuring tone If appropriate, use touch to get their attention Avoid sudden movements that may startle

18. Be Aware of the Environment Reduce background noise and distraction Sundowning

19. Simplify Verbal Communication Convey ideas one step at a time Select concrete words when possible Avoid abstractions or generalizations Use yes/no questions Repeat as necessary Person may ‘mask’ responses

20. Active Listening Be patient. Allow time for the individual to find the words Do not interrupt or finish the sentence Understand what the person is saying before responding

21. Nonverbal Communication Communication skills deteriorate from verbal to nonverbal Watch body language and facial expression for signs of agitation, discomfort or pain

22. Communicating with the Caregiver Allow time to vent Listen for veiled or overt expressions of exhaustion, frustration, anger Be sensitive to caregiver/care receiver confidentiality If possible, interview separately

23. Resistance in Alzheimer’s If the person becomes agitated, stop the activity Schedule enough time Do not force the issue unless there is an immediate threat to health and safety

24. Service Options Diagnostic centers Safe Return Program Clinical trials NYC Caregiver Program

25. Community Care Options Home care Home delivered meals Transportation Adult day service Social model Medical model

26. Taking a Break Respite In-home Congregate Overnight respite

27. Residential Continuum Adult home Assisted living Nursing home

28. Considerations Available social supports Awareness of community services Utilization of services Financial resources Involvement of APS where appropriate

29. The Multidisciplinary Team Family members Social workers Geriatricians, psychiatrists Elder law attorneys Law enforcement Geriatric care managers Faith-based community

30. Useful Contacts 311 for all city services in NYC NYC Dept for the Aging (212) 442-1000 www.nyc.gov/aging www.nyccaregiver.org Alzheimer’s Association, NYC Chapter (212) 973-0700 www.alznyc.org

31. Useful Contacts, cont’d U.S. Administration on Aging www.aoa.gov Fisher Foundation www.alzinfo.org