1. 1 Problems of Alzheimer’s Disease in the Arab World Dr. Ashraf Al-Kurdi FRCP(London), FRCP (G) Regional and 21 st International Conference of Alzheimer's Disease 28 th Sep -1 st Oct 2005 Istanbul Turkey

2. 2 The Arab World 22 countries common language Common religion

3. 3 Jordan Population Estimates by size, age group (2000, 2005, 2010, 2015, 2020, 2025) (25- 44)(15- 24)(0- 14)Years %Total% % 26.0129520.6102841.620772000 24.2132923.6129637.120372005 24.2151323.6147637.123202010 24.2171523.6167237.126292015 24.2193323.6188537.129642020 24.2200923.6195937.130792025

4. 4 Jordan Population Estimates by size, age group (2000, 2005, 2010, 2015, 2020, 2025) All Age Groups(60+)(45- 59)Years Fem ale MaleTotal% % 2591239949904.42197.43712000 2830266154916.13359.04942005 3223303062536.13819.05632010 3653343470866.14329.06382015 4118387179896.14879.07192020 4278402283006.15069.07472025

5. 5 Prevalence of dementia: The Framingham Study 3.59.0 17.935.8 105.3 237.5 61-64 65-6970-7475-7980-8485-93

6. 6 A few short cases to help illustrate the impact of AD on the community

7. 7 Case 1 A well-off elderly man suffering from Alzheimer’s Disease was a victim of embezzlement because of his loss of cognitive and judgment abilities by ill-doers – although the amount embezzled was 1,5 million USD his family never reported the case to the police because of social stigma and shame

8. 8 Case 2 An elderly patient with dementia was taken from his hospital bed by his son to write off part of his land- although he was not aware of his decision Lack of regulatory and legislative frameworks for these patients

9. 9 Case 3 Attempting to get a permanent helper for her mother (an AD sufferer) with the aid of the social welfare Department, the woman was denied any assistance based on the fact that her mother’s physical functioning was relatively intact This shows the lack of awareness among governmental bodies.

10. 10 Case 4 A patient suffering from AD and Parkinson’s disease was robbed of his keys that hung on the side of his trousers- his safe was cleaned out and he was left with feelings of remorse quality of life and security

11. 11 The Challenge The Arab World is currently aging as the rest of the developing world. However, unlike the developed world, this region still does not have the resources or tools to face the socioeconomic and medical needs of an aging population

12. 12 A perspective on the action Devise a set of recommendations on actions that must be taken by the medical community and governments to be better prepared for the future

13. 13 Challenges in AD today: Lack of Awareness Challenges with Diagnosis and management Availability of Nursing homes and /or Day Care Centers Availability of Nursing homes and /or Day Care Centers Research work and funds Research work and funds Genetics and Genetic counseling Environment

14. 14 Challenges in AD today: Lack of Awareness Challenges with Diagnosis and management Availability of Nursing homes and /or Day Care Centers Availability of Nursing homes and /or Day Care Centers Research work and funds Research work and funds Genetics and Genetic counseling Environment

15. 15 Lack of Awareness: The lack of awareness extends to governmental bodies and the medical community. Only recently we have had small group initiatives from within the care-giver and medical community to establish awareness on Alzheimer’s disease as a primary objective of these newly formed organizations.

16. 16 AD Groups and Awareness We currently have associations in Egypt, Lebanon, Tunisia, Jordan, Saudi Arabia and Morocco with the rest of the countries to follow

17. 17 Lack of Data and national Registries Unfortunately to date, we have no national registries or official statistics on the prevalence of Alzheimer’s Disease in the Arab World

18. 18 The condition is under-diagnosed It is fair to conclude that the number of reported cases are far less than the actual existing patients. This indicates that the condition is under diagnosed.

19. 19 From our Practices: The majority of cases present in the later stages of the disease while prognosis is worse and the benefit of drug therapy is limited.

20. 20 Lack of Awareness: Our societies consider memory loss as part of the normal aging process and this is largest hurdle to overcome to ensure proper management of the disease.

21. 21 Factors affecting awareness Factors contributing to the current awareness challenges are the high level of illiteracy in the region. This a point of caution when reading into recently published data on small village populations as this will magnify the existence of AD and should be looked at in context and back-drop of the literacy level.

22. 22 Challenges in AD today: Lack of Awareness Challenges with Diagnosis and management Availability of Nursing homes and /or Day Care Centers Availability of Nursing homes and /or Day Care Centers Research work and funds Research work and funds Genetics and Genetic counseling Environment

23. 23 Challenges with Diagnosis Challenges with Diagnosis The three major hurdles we face today in diagnosis: lack of validated psychometric tests for AD lack of Inter-disciplinary teams for differential diagnosis of patients Co-morbidity

24. 24 Lack of validated psychometric tests for AD There is a burning need for validated psychometric testing in the Arabic language that will be prepared in abidance with our cultural needs and differences. It is highly recommended to set the completion of these test as a primary goal for our regional initiatives Establishing cross regional collaboration and team work, as well as sharing best practice in our region

25. 25 Lack of Inter-disciplinary teams for differential diagnosis of patients The need to form inter-disciplinary teams (Neurologist, Psychologist, geriatricians, internists, family doctors, neuropsychologist, occupational therapists, physiotherapists, nurses and volunteers/care givers) is evident if we plan to manage these patients on the short and long run.

26. 26 Co-morbidity Co-morbidity associated with Diabetes /hypertension, and CHD (Coronary Heart Disease) Lipid- disorders and thyroid Dysfunction etc… Co-morbidity associated with Diabetes /hypertension, and CHD (Coronary Heart Disease) Lipid- disorders and thyroid Dysfunction etc… in fact our region has one of the highest prevalence rate of Diabetes of about 30%3, this creates issues of understanding the case and properly diagnosing the condition.

27. 27 Challenges in management Availability of AD drug therapy some acetyl cholinesterase inhibitors and mementine are available in some of our countries (Jordan, Lebanon, Saudi Arabia, UAE, Kuwait) they are still not available in others. The medical societies must build guidelines on when to start treatment with these drugs and when to stop, this can be provided by joint committees from the larger centers active in this field in the Arab World.

28. 28 Challenges in management The question that poses itself regarding therapy is cost we anticipate that this will grow as our population’s age and a plan needs to be set in motion to ensure that patients receive their medications at an acceptable price through government subsidy or involvement of charitable organizations in co-payment

29. 29 Challenges in AD today: Lack of Awareness Challenges with Diagnosis and management Availability of Nursing homes and /or Day Care Centers Availability of Nursing homes and /or Day Care Centers Research work and funds Research work and funds Genetics and Genetic counseling Environment

30. 30 Availability of Nursing homes and /or Day Care Centers The Arab world social matrix is fortunately still a familial unit that ensures the well- being and care for the elderly However… there is room for improvement in the current existent nursing homes, and in the day- care support for these patients. there is room for improvement in the current existent nursing homes, and in the day- care support for these patients.

31. 31 Availability of Nursing homes and /or Day Care Centers This is key to ascertain mental stimulation and some form of appropriate re-creational programs that will ensure these patients do not lose the limited functioning that they can exercise in their lives.

32. 32 Availability of Nursing homes and /or Day Care Centers The need for Occupational therapy and education for the care-givers and specialized therapists will play an important role as we proceed in the future

33. 33 Availability of Nursing homes and /or Day Care Centers We highlight the need for governmental involvement and lead in the process of establishing nursing homes of high standard, as this today is very needed especially by the majority of patients that fall within the category of low socioeconomic class

34. 34 Challenges in AD today: Lack of Awareness Challenges with Diagnosis and management Availability of Nursing homes and /or Day Care Centers Availability of Nursing homes and /or Day Care Centers Research work and funds Research work and funds Genetics and Genetic counseling Environment

35. 35 Research work and funds: Lack of Statistics and solid data is one of the key issues we face in many medical conditions in the Arab World and this is also applicable to AD. Unfortunately research in the Arab world is very limited due to lack of awareness. Raising funds for the purpose of research is highly advisable at this stage to obtain proper data and accordingly a solid base to build for the future and to run comparative analysis with global data.

36. 36 Research work and funds: Reasons for this current situation are: – the lack of specialized institutions (Governmental or private) to run properly designed research programs- – the educational environment –The younger generation returning after intensive training in the developed world return to a heavy load of patients and administrative work – Lack of an incentive plan for research and donations to research (example tax exemptions for major donations).

37. 37 Challenges in AD today: Lack of Awareness Challenges with Diagnosis and management Availability of Nursing homes and /or Day Care Centers Availability of Nursing homes and /or Day Care Centers Research work and funds Research work and funds Genetics and Genetic counseling Environment

38. 38 Genetics and Genetic counseling The genetics of AD is an important factor in diagnosis and early predication. Genetic labs and genetic counseling is still in its infancy and only in a few countries in our region.

39. 39 Genetics and Genetic counseling The two basic type of AD are familial and sporadic. Familial AD (FAD) is a rare from of AD, affecting less than 10 percent of AD patient. All FAD are early- onset, meaning the disease develops before age 65 caused by gene mutation on chromosomes 1,14, and 21.

40. 40 Genetics and Genetic counseling Researchers have identified an increased risk of developing late- onset AD related to the apolipoprotein E gene found on chromosome 19. This gene codes for a protein that helps carry cholesterol in the bloodstream. The APOE gene comes in several different forms, or alleles but three occur most frequently: APOE e2, APOE e3, and e4. This gene codes for a protein that helps carry cholesterol in the bloodstream. The APOE gene comes in several different forms, or alleles but three occur most frequently: APOE e2, APOE e3, and e4. A person with even the most probable genetic link, APOE4, is estimated to have five time higher risk of developing Alzheimer’s disease.

41. 41 Genetics and Genetic counseling Work is advised to evolve genetic testing in the region hand in hand with genetic counseling for individuals identified at risk. People who learn through testing that they have an increased risk of getting AD may experience emotional distress and depression about the future, because there is not yet an effective way to prevent or cure the disease.

42. 42 Challenges in AD today: Lack of Awareness Challenges with Diagnosis and management Availability of Nursing homes and /or Day Care Centers Availability of Nursing homes and /or Day Care Centers Research work and funds Research work and funds Genetics and Genetic counseling Environment

43. 43 Environment As with other fields, the Arab world is facing growing challenges in coupling environmental development with economic growth, challenges in the area of water quality, land degradation and urban / industrial pollution top the list. Although work is being done, public access to environmental information has not advanced despite the emergence of NGO’s. 6

44. 44 Environment It is estimated that the environmental health burden is about 14% of the total burden in the region.6 The cause of AD maybe in our environment-perhaps something in the air, water or soil. The following will shed light on the main global findings of the existing link to the environment and the disease.

45. 45 Environment The reduced capacity to synthesize neurotransmitter observed in the aged population may aggravate the effect of toxic substances. It has been suggested that one of the more common CNS disorders of the elderly, Alzheimer’s disease, may be linked to aluminum toxicity since elevated levels of aluminum have been found in autopsied brains of Alzheimer patients.

46. 46 Air and industrial pollution Calderon-Garciduenas et aLCalderon-Garciduenas et aL. indicated in their paper a link to pathology in individuals exposed to severe air pollution. Calderon-Garciduenas et aL The exposure to severe air pollution is associated with brain inflammation and αβ 42 accumulation, two causes of neuronal dysfunction that precede the appearance of neuritic plaques and neurofibrillary tangles, hallmarks of Alzheimer disease.

47. 47 Water quality Increased circulating cholesterol directly affected by water quality is known to promote risk of coronary artery disease. It is now emerging that cholesterol promotes production and accumulation of amyloid g (Ag) deposited in the hallmark pathologic lesion of Alzheimer’s (AD), the senile plaque.

48. 48 Environment A better understanding based on the initiatives of the environmental sectors needs to establish the relationship of our environment with the incidence of AD in the region.

49. 49 The internal environment Alzheimer Disease may be caused by something within the body. It could be a slow virus, an imbalance of chemicals or a problem with the immune system.

50. 50 A perspective on the action Devise a set of recommendations on actions that must be taken by the medical community and governments to be better prepared for the future

51. 51 A Set of recommendations for the AD Joining Forces of the AD group with a common agenda that will drive regional initiatives of increasing awareness and providing support in our respective countries Joining Forces of the AD group with a common agenda that will drive regional initiatives of increasing awareness and providing support in our respective countries

52. 52 A Set of recommendations for the AD Epidemiological study in the Arab World: The Pan Arab of Neurological Diseases should take up the challenge of creating a Pan Arab epidemiological study that will drive awareness and create the needed base for dealing with governmental bodies. This will provide solid data to help promote awareness on the condition and support for patients in terms of medical management and social facilities. This will provide solid data to help promote awareness on the condition and support for patients in terms of medical management and social facilities.

53. 53 A Set of recommendations for the AD To hold regional meeting to discuss practical issues like psychometric tests, the role of care givers, establishment of Day care centers, recreational programs and to share experiences. To incorporate parties interested in the disease area including doctors, care-givers, nurses, counselors and speech therapist. To also discuss aspects pertaining to neuro-imaging in respect to diagnosis and differential diagnosis and to stress the fact about reversible dementia. To hold regional meeting to discuss practical issues like psychometric tests, the role of care givers, establishment of Day care centers, recreational programs and to share experiences. To incorporate parties interested in the disease area including doctors, care-givers, nurses, counselors and speech therapist. To also discuss aspects pertaining to neuro-imaging in respect to diagnosis and differential diagnosis and to stress the fact about reversible dementia.

54. 54 A Set of recommendations for the AD Make AD groups in each country leverage the media and lobby with the governmental bodies to improve the status of the AD sufferer in our region. Develop genetic tests that are specialized in the region hand in hand with genetic counseling. Laboratory testing and neuro-imaging should be developed and viewed as pivotal tools in the process of developing the management of the disease.

55. 55 A Set of recommendations for the AD in the region Develop a drug therapy policy through the medical societies and relevant governmental departments for the use of AD drugs and recommendations as well as formalize a cost management issue on the long run. Standardization for future day care/nursing homes to be established is recommended to ensure a properly high-standard run home that will cater for the needs of these patients.

56. 56 A Set of recommendations for the AD in the region Activate the role of the Environmental Sectors (Governmental and NGO’s) to better understand the role of the environment in our region and its link with the incidence of AD. Recommendation for environmental reform must be in the context of the incidence of AD and other diseases