“STANDING IN THE GAP”

1. “STANDING IN THE GAP” An education and outreach program on memory loss, dementia and Alzheimer’s disease for African Americans

2. “STANDING IN THE GAP” Standing in the Gap is a reference to each individual’s moral responsibility to be of service to others in need.

3. African Americans: Who are we? The term “African American” refers to people having origins in any of the Black race groups of Africa, as well as people of African descent from Caribbean Islands and parts of South America. Each of these groups has distinct cultural and social identities.

4. African Americans: Who are we?

5. African Americans: Who are we? • Today, African Americans represent close to 13% of the population. • There are 2.7 million African Americans age 65 and over • By the year 2050, it is projected that this number will increase to 8.6 million.

6. Illness and Survival Many African Americans perceive their success on the individual, familial and cultural levels in terms of enduring a lifetime of oppressive and discriminatory actions. In spite of these actions, African American elders passed on values, beliefs and wisdom to their families.

7. Illness and Survival Lives can be seen as successful, but it is believed that the price of enduring such pressure is experiencing mental and/or physical health problems.

8. Cultural Beliefs Associated with Memory Loss and Dementia “Worration” Combination of worry and stress thought by many to cause damage to the brain. It is believed that one can actually overuse one’s mind to the detriment of the brain. That is, “thinking too much” or “too much head work.”

9. Cultural Beliefs Associated with Memory Loss and Dementia Falling Out Presents as a loss of consciousness and a physical collapse.

10. Cultural Beliefs Associated with Memory Loss and Dementia High Blood Is a condition in which the blood is not flowing normally through the body. It is thicker or sweeter and therefore, believed to be stagnating in the higher area (head, chest) of the body. When the pressure of “too much blood” occurs you develop memory problems.

11. Culture, Memory Loss and Dementia • “I just thought it was a part of getting older.” • “She had suffered such a lifetime of worries and my father was not very good to her.” • “My mom was the backbone of the family. Everyone looked up to her. She took on everybody else’s problems. It was the pressure.”

12. “STANDING IN THE GAP” • What is senility? • What is dementia? • What is Alzheimer’s disease?

13. What is Senility?

14. What is Senility?“Oh, she’s just senile” • Senility is not a medical term. Senile means “of, or relating to advanced age.” • Senility does not refer to dementia. • Dementia is NOT normal aging.

15. What is Dementia? Dementia is an umbrella term that refers to a general loss of abilities involving memory and judgment, language and abstract thinking as well as changes in personality.

16. Irreversible Causes of Dementia • Alzheimer’s disease • Vascular dementia • Parkinson’s disease • Huntington’s disease • Pick’s disease • Creutzfeldt-Jakob disease • Lewy Body dementia • AIDS and at least 70 other conditions

17. Alzheimer’s Disease • Alzheimer’s disease is the most common form of dementia. • It occurs gradually over time as it attacks the brain. • The course of the disease can range from 8 years to as many as 20 years. • Alzheimer’s disease is irreversible.

18. Alzheimer’s Disease Causes a steady decline in the ability to: • Remember and learn • Think and reason • Communicate and respond • Live independently

19. 10 Warning Signs • Recent memory loss that affects performance at work or at home • Misplacing things • Problems with language • Confusion about time and place • Poor or decreased judgment

20. 10 Warning Signs • Problems with abstract thinking • Difficulty performing familiar tasks • Changes in mood or behavior • Changes in personality • Loss of initiative

21. Alzheimer’s Disease

22. The Silent Epidemic Alzheimer’s disease is more prevalent among African Americans than among whites – with estimates ranging from 14 – 100 percent higher.

23. The Silent Epidemic • There is a greater familial risk of Alzheimer’s in African Americans. • Genetic and environmental factors may work differently to cause Alzheimer’s disease in African Americans.

24. A person with a history of either high blood pressure or high cholesterol is twice as likely to develop Alzheimer’s disease. High blood pressure and high cholesterol occur more frequently in African Americans. African Americans have a 60 percent higher risk of type 2 diabetes – a condition that contributes to vascular disease. African Americans have a higher rate of vascular dementia than whiteAmericans. The Silent Epidemic

25. Can still take care of their personal needs and may still be in the workforce Has trouble with finding names for common items Loses things more often May begin to ask the same question over and over Gets lost easily in places well known Personality changes may occur Loses interest in things once enjoyed Alzheimer’s Disease Stages - Mild

26. Displays anxiety or depression Experiences difficulty with simple activities Paces excessively May hallucinate or become paranoid Requires close supervision Becomes more confused about recent events Argues more than usual May wander Alzheimer’s Disease Stages - Moderate

27. No longer able to communicate Unable to recognize themselves when they look into the mirror Can not care for themselves Unable to recognize family members May be bed-bound and become totally debilitated Alzheimer’s Disease Stages - Severe

28. Physical examination Laboratory tests Patient history Memory and thinking tests Diagnosing Alzheimer’s Disease

29. Diagnosing Alzheimer’s Disease Patient history should include the following: • Medical history • Focused history • Family history • Social and cultural history

30. Diagnosing Alzheimer’s Disease Medical History – Physicians should ask about relevant diseases: mental disorders, history of head trauma, review information about infections or illnesses such as pneumonia, diabetes, urinary tract infections or chronic renal failure.

31. DiagnosingAlzheimer’s Disease Medical History - The review of all medications is a critical component of the assessment because drug toxicity is the most common cause of dementia-like symptoms that can be resolved. A wide range of drugs have been associated with cognitive changes. Patients should bring all medications to the appointment including, over the counter pills.

32. Diagnosing Alzheimer’s Disease Focused History – It must identify signs and symptoms such as difficulty learning and retaining new information, handling complex tasks, reasoning ability, spatial ability and orientation, language and exhibits behavior problems.

33. Diagnosing Alzheimer’s Disease Family History – Physician should inquire about a family history of Alzheimer’s disease especially early onset or other rare genetic conditions that might lead to dementia.

34. Diagnosing Alzheimer's Disease Social and Cultural History

35. Diagnosing Alzheimer’s Disease Social and Cultural History – Include information about recent life events and social support networks, literacy, socioeconomic, ethnic and cultural background. These factors may affect performance on mental status examinations.

36. Diagnosing Alzheimer’s Disease Physical Examination – Standard medical principles should be used to guide a physical examination as a part of the assessment process.

37. Diagnosing Alzheimer’s Disease Mental Status Examination - Used to develop a picture along with functional performance; provides baseline data for monitoring over time; and can document multiple cognitive impairments.

38. Diagnosing Alzheimer’s Disease Mental Status Examination - Factors such as age, primary language, educational level and cultural influences should be taken into consideration in the interpretation of mental status scores.

39. Diagnosing Alzheimer’s Disease Laboratory Tests – Complete Blood Count (CBC), electrolyte panel, screening for metabolic panel, thyroid gland function, B-12 and folate levels, tests for syphilis and depending on history for HIV antibodies, urinalysis, ECG, chest X-ray, CT and an EEG.

40. Diagnosing Alzheimer's Disease African Americans tend to be diagnosed at a later stage of Alzheimer’s disease – limiting the effectiveness of treatments that depend upon early action.

41. The Importance of Early Diagnosis Early diagnosis may help the person with dementia: • Educate him/herself on the disease • Learn to manage the disease • Participate in their own care planning • Make legal and financial arrangements

42. Disease Management

43. Disease Management Currently, there is no cure for the disease, but there are 5 drugs on the market that may help reduce some of the symptoms associated with the disease. They are: • Cognex (tacrine) • Aricept (donepezil) • Exelon (rivastigmine) • Reminyl (galantamine) • Namenda (memantine)

44. Disease Management African Americans are seriously underrepresented in current clinical trials of potential treatments for Alzheimer’s disease. This has occurred even though evidence of genetic differences and response to drugs varies significantly by race and ethnicity.

45. Disease Management • Physical exercise • Calm and well-structured environment • Proper nutrition • Pleasurable social activities • Adequate sleep • Identify what activities cause problem behaviors

46. Caring for the Person with Dementia The person with dementia is not: • Faking or trying to get on your nerves • Trying to drive you crazy • Seeking attention • The recipient of a hex or a curse

47. Caring for the Person with Dementia Remember: • Difficult behaviors are the result of the disease • Persons with dementia are not able to learn new information or “just try a little harder” • You, not they, will have to change • Your relationship will change • Denial, anger and depression are normal reactions

48. Now, what do I do?

49. Now, what do I do?The Lord never puts more on us than we can handle • Contact the local chapter of the Alzheimer’s Association. “There is no time like the present” • Learn more about the disease. “What you don’t know can hurt you” • Talk to family members, friends or clergy. “This is the first day of the rest of your life” • Take advantage of community resources. “It is always darkest before the dawn”

50. “STANDING IN THE GAP” The Alzheimer’s Association is the largest national voluntary organization dedicated to conquering Alzheimer’s disease through research and to providing information and support to people with Alzheimer’s disease, their families and caregivers.