1 Problems of Alzheimer’s Disease in the Arab World Dr. Ashraf Al-Kurdi FRCP(London), FRCP (G)...

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Problems of Alzheimer’s Problems of Alzheimer’s Disease in the Arab Disease in the Arab

WorldWorldDr. Ashraf Al-Kurdi FRCP(London), FRCP (G)Dr. Ashraf Al-Kurdi FRCP(London), FRCP (G)

Regional and 21Regional and 21stst International Conference of International Conference of Alzheimer's Disease 28Alzheimer's Disease 28thth Sep -1 Sep -1stst Oct 2005 Oct 2005

Istanbul TurkeyIstanbul Turkey

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The Arab WorldThe Arab World22 countries22 countries

common languagecommon language

Common religionCommon religion

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JordanJordanPopulation Estimates by size, age groupPopulation Estimates by size, age group

(2000, 2005, 2010, 2015, 2020, 2025)(2000, 2005, 2010, 2015, 2020, 2025)

Years (0- 14) (15- 24) (25- 44)

Total % Total % Total %

2000 2077 41.6 1028 20.6 1295 26.0

2005 2037 37.1 1296 23.6 1329 24.2

2010 2320 37.1 1476 23.6 1513 24.2

2015 2629 37.1 1672 23.6 1715 24.2

2020 2964 37.1 1885 23.6 1933 24.2

2025 3079 37.1 1959 23.6 2009 24.2

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JordanJordanPopulation Estimates by size, age groupPopulation Estimates by size, age group

(2000, 2005, 2010, 2015, 2020, 2025)(2000, 2005, 2010, 2015, 2020, 2025)

Years (45- 59) (60+) All Age Groups

Total % Total % Total Male Female

2000 371 7.4 219 4.4 4990 2399 2591

2005 494 9.0 335 6.1 5491 2661 2830

2010 563 9.0 381 6.1 6253 3030 3223

2015 638 9.0 432 6.1 7086 3434 3653

2020 719 9.0 487 6.1 7989 3871 4118

2025 747 9.0 506 6.1 8300 4022 4278

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Prevalence of dementia:Prevalence of dementia:The Framingham StudyThe Framingham Study

0

50

100

150

200

250

3.5 9.017.9 35.8

105.3

237.5

61-64 65-69 70-74 75-79 80-84 85-93

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

the communitythe community

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Case 1Case 1

A well-off elderly man A well-off elderly man suffering from suffering from Alzheimer’s Disease Alzheimer’s Disease was a victim of was a victim of embezzlement because embezzlement because of his loss of cognitive of his loss of cognitive and judgment abilities and judgment abilities by ill-doers – although by ill-doers – although the amount embezzled the amount embezzled was 1,5 million USDwas 1,5 million USD

his family never his family never reported the case to reported the case to the police because of the police because of social stigma and social stigma and shameshame

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Case 2Case 2

An elderly patient with An elderly patient with dementia was taken dementia was taken from his hospital bed by from his hospital bed by his son to write off part his son to write off part of his land- although he of his land- although he was not aware of his was not aware of his decisiondecision

Lack of regulatory Lack of regulatory and legislative and legislative frameworks for frameworks for these patientsthese patients

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Case 3Case 3

Attempting to get a Attempting to get a permanent helper for permanent helper for her mother (an AD her mother (an AD sufferer) with the aid of sufferer) with the aid of the social welfare the social welfare Department, the woman Department, the woman was denied any was denied any assistance based on the assistance based on the fact that her mother’s fact that her mother’s physical functioning was physical functioning was relatively intactrelatively intact

This shows the This shows the lack of awareness lack of awareness among among governmental governmental bodies.bodies.

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Case 4Case 4

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

quality of life and quality of life and securitysecurity

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The ChallengeThe Challenge

The Arab World is currently aging as the The Arab World is currently aging as the rest of the developing world. rest of the developing world.

However, unlike the developed world, this However, unlike the developed world, this region still does not have the resources or region still does not have the resources or tools to face the socioeconomic and tools to face the socioeconomic and medical needs of an aging populationmedical needs of an aging population

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A perspective on the actionA perspective on the action

Devise a set of recommendations on Devise a set of recommendations on actionsactions that must be taken by the medical that must be taken by the medical community and governments to be better community and governments to be better prepared for the futureprepared for the future

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Challenges in AD today:Challenges in AD today:

Lack of AwarenessLack of AwarenessChallenges with Diagnosis and Challenges with Diagnosis and managementmanagement Availability of Nursing homes and /or Day Availability of Nursing homes and /or Day Care CentersCare Centers Research work and fundsResearch work and fundsGenetics and Genetic counselingGenetics and Genetic counselingEnvironmentEnvironment

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Lack of Awareness:Lack of Awareness:

The lack of awareness extends to governmental The lack of awareness extends to governmental bodies and the medical community. bodies and the medical community.

Only recently we have had small group initiatives Only recently we have had small group initiatives from within the care-giver and medical from within the care-giver and medical community to establish awareness on community to establish awareness on Alzheimer’s disease as a primary objective of Alzheimer’s disease as a primary objective of these newly formed organizations. these newly formed organizations.

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AD Groups and AwarenessAD Groups and Awareness

We currently have associations in Egypt, We currently have associations in Egypt, Lebanon, Tunisia, Jordan, Saudi Arabia Lebanon, Tunisia, Jordan, Saudi Arabia and Morocco with the rest of the countries and Morocco with the rest of the countries to followto follow

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Lack of Data and national Lack of Data and national RegistriesRegistries

Unfortunately to date, we have no national Unfortunately to date, we have no national registries or official statistics on the registries or official statistics on the prevalence of Alzheimer’s Disease in the prevalence of Alzheimer’s Disease in the Arab WorldArab World

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The condition is under-diagnosedThe condition is under-diagnosed

It is fair to conclude that the number of It is fair to conclude that the number of reported cases are far less than the actual reported cases are far less than the actual existing patients. existing patients.

This indicates that the condition is under This indicates that the condition is under diagnosed.diagnosed.

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From our Practices:From our Practices:

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

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Lack of Awareness:Lack of Awareness:

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

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Factors affecting awarenessFactors affecting awareness

Factors contributing to the current Factors contributing to the current awareness challenges are the high level of awareness challenges are the high level of illiteracy in the region. illiteracy in the region.

This a point of caution when reading into This a point of caution when reading into recently published data on small village recently published data on small village populations as this will magnify the populations as this will magnify the existence of AD and should be looked at in existence of AD and should be looked at in context and back-drop of the literacy level. context and back-drop of the literacy level.

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Challenges with DiagnosisChallenges with Diagnosis

The three major hurdles we face today in The three major hurdles we face today in diagnosis:diagnosis:

lack of validatedlack of validated psychometric testspsychometric tests for for ADAD

lack of Inter-disciplinary teamslack of Inter-disciplinary teams for for differential diagnosis of patients differential diagnosis of patients

Co-morbidityCo-morbidity

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Lack of validatedLack of validated psychometric psychometric teststests for AD for AD

There is a burning need for validated There is a burning need for validated psychometric testing in the Arabic language that psychometric testing in the Arabic language that will be prepared in abidance with our cultural will be prepared in abidance with our cultural needs and differences.needs and differences.

It is highly recommended to set the completion It is highly recommended to set the completion of these test as a primary goal for our regional of these test as a primary goal for our regional initiativesinitiatives

Establishing cross regional collaboration and Establishing cross regional collaboration and team work, as well as sharing best practice in team work, as well as sharing best practice in our regionour region

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Lack of Inter-disciplinary teamsLack of Inter-disciplinary teams for differential diagnosis of patientsfor differential diagnosis of patients

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

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Co-morbidityCo-morbidity

Co-morbidity associated with Diabetes Co-morbidity associated with Diabetes /hypertension, and CHD (Coronary Heart /hypertension, and CHD (Coronary Heart Disease) Lipid- disorders and thyroid Disease) Lipid- disorders and thyroid Dysfunction etc…Dysfunction etc…

in fact our region has one of the highest in fact our region has one of the highest prevalence rate of Diabetes of about 30%3, this prevalence rate of Diabetes of about 30%3, this creates issues of understanding the case and creates issues of understanding the case and properly diagnosing the condition.properly diagnosing the condition.

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Challenges in managementChallenges in management

Availability of AD drug therapyAvailability of AD drug therapy

some acetyl cholinesterase inhibitors and some acetyl cholinesterase inhibitors and mementine are available in some of our mementine are available in some of our countries (Jordan, Lebanon, Saudi Arabia, UAE , countries (Jordan, Lebanon, Saudi Arabia, UAE , Kuwait) they are still not available in others. Kuwait) they are still not available in others.

The medical societies must build guidelines on The medical societies must build guidelines on when to when to start treatment with these drugs and start treatment with these drugs and when to stopwhen to stop, this can be provided by joint , this can be provided by joint committees from the larger centers active in this committees from the larger centers active in this field in the Arab World.field in the Arab World.

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Challenges in managementChallenges in management

The question that poses itself regarding therapy The question that poses itself regarding therapy is costis cost

we anticipate that this will grow as our we anticipate that this will grow as our population’s age and a plan needs to be set in population’s age and a plan needs to be set in motion to ensure that patients receive their motion to ensure that patients receive their medications at an acceptable price through medications at an acceptable price through government subsidy or involvement of charitable government subsidy or involvement of charitable organizations in co-paymentorganizations in co-payment

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Availability of Nursing homes Availability of Nursing homes and /or Day Care Centersand /or Day Care Centers

The Arab world social matrix is fortunately The Arab world social matrix is fortunately still a familial unit that ensures the well-still a familial unit that ensures the well-being and care for the elderly being and care for the elderly

However…However…

there is room for improvement in the current there is room for improvement in the current existent nursing homes, and in the day-existent nursing homes, and in the day-care support for these patients.care support for these patients.

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This is key to ascertain mental stimulation This is key to ascertain mental stimulation and some form of appropriate re-creational and some form of appropriate re-creational programs that will ensure these patients programs that will ensure these patients do not lose the limited functioning that they do not lose the limited functioning that they can exercise in their lives.can exercise in their lives.

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The need for Occupational therapy and The need for Occupational therapy and education for the care-givers and education for the care-givers and specialized therapists will play an specialized therapists will play an important role as we proceed in the futureimportant role as we proceed in the future

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We highlight the need for governmental We highlight the need for governmental involvement and lead in the process of involvement and lead in the process of establishing nursing homes of high establishing nursing homes of high standard, as this today is very needed standard, as this today is very needed especially by the majority of patients that especially by the majority of patients that fall within the category of low fall within the category of low socioeconomic classsocioeconomic class

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Research work and funds:Research work and funds:

Lack of Statistics and solid data is one of the key Lack of Statistics and solid data is one of the key issues we face in many medical conditions in the issues we face in many medical conditions in the Arab World and this is also applicable to AD. Arab World and this is also applicable to AD.

Unfortunately research in the Arab world is very Unfortunately research in the Arab world is very limited due to lack of awareness .limited due to lack of awareness .

Raising funds for the purpose of research is Raising funds for the purpose of research is highly advisable at this stage to obtain proper highly advisable at this stage to obtain proper data and accordingly a solid base to build for the data and accordingly a solid base to build for the future and to run comparative analysis with future and to run comparative analysis with global data. global data.

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Research work and funds:Research work and funds:

Reasons for this current situation are:Reasons for this current situation are:

– the lack of specialized institutions (Governmental or private) to run the lack of specialized institutions (Governmental or private) to run properly designed research programs-properly designed research programs-

– the educational environment the educational environment

–The younger generation returning after intensive training in the The younger generation returning after intensive training in the developed world return to a heavy load of patients and administrative developed world return to a heavy load of patients and administrative workwork

– Lack of an incentive plan for research and donations to research Lack of an incentive plan for research and donations to research (example tax exemptions for major donations). (example tax exemptions for major donations).

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Genetics and Genetic counselingGenetics and Genetic counseling

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

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The two basic type of AD are familial and The two basic type of AD are familial and sporadic. Familial AD (FAD) is a rare from sporadic. Familial AD (FAD) is a rare from of AD, affecting less than 10 percent of AD of AD, affecting less than 10 percent of AD patient .patient .

All FAD are early- onset, meaning the All FAD are early- onset, meaning the disease develops before age 65 caused disease develops before age 65 caused by gene mutation on chromosomes 1,14, by gene mutation on chromosomes 1,14, and 21.and 21.

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

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Work is advised to evolve genetic testing in the Work is advised to evolve genetic testing in the region hand in hand with genetic counseling for region hand in hand with genetic counseling for individuals identified at risk. individuals identified at risk.

People who learn through testing that they have People who learn through testing that they have an increased risk of getting AD may experience an increased risk of getting AD may experience emotional distress and depression about the emotional distress and depression about the future, because there is not yet an effective way future, because there is not yet an effective way to prevent or cure the disease. to prevent or cure the disease.

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EnvironmentEnvironment

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

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It is estimated that the environmental It is estimated that the environmental health burden is about 14% of the total health burden is about 14% of the total burden in the region.6 The cause of AD burden in the region.6 The cause of AD maybe in our environment-perhaps maybe in our environment-perhaps something in the air, water or soil. something in the air, water or soil.

The following will shed light on the main The following will shed light on the main global findings of the existing link to the global findings of the existing link to the environment and the disease.environment and the disease.

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Environment Environment

The reduced capacity to synthesize neurotransmitter The reduced capacity to synthesize neurotransmitter observed in the aged population may aggravate the observed in the aged population may aggravate the effect of toxic substances. effect of toxic substances.

It has been suggested that one of the more common It has been suggested that one of the more common CNS disorders of the elderly, Alzheimer’s disease, may CNS disorders of the elderly, Alzheimer’s disease, may be linked to aluminum toxicity since elevated levels of be linked to aluminum toxicity since elevated levels of aluminum have been found in autopsied brains of aluminum have been found in autopsied brains of Alzheimer patients. Alzheimer patients.

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Air and industrial pollutionAir and industrial pollution

Calderon-Garciduenas et aLCalderon-Garciduenas et aL. indicated in their . indicated in their paper a link to pathology in individuals exposed paper a link to pathology in individuals exposed to severe air pollution. to severe air pollution.

The exposure to severe air pollution is The exposure to severe air pollution is associated with brain inflammation and αβ 42 associated with brain inflammation and αβ 42 accumulation, two causes of neuronal accumulation, two causes of neuronal dysfunction that precede the appearance of dysfunction that precede the appearance of neuritic plaques and neurofibrillary tangles, neuritic plaques and neurofibrillary tangles, hallmarks of Alzheimer disease. hallmarks of Alzheimer disease.

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Water quality Water quality

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

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

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The internal environmentThe internal environment

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

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A perspective on the actionA perspective on the action

Devise a set of recommendations on Devise a set of recommendations on actionsactions that must be taken by the medical that must be taken by the medical community and governments to be better community and governments to be better prepared for the futureprepared for the future

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A Set of recommendations for the A Set of recommendations for the ADAD

Joining Forces of the AD group with a Joining Forces of the AD group with a common agenda that will drive regional common agenda that will drive regional initiatives of increasing awareness and initiatives of increasing awareness and providing support in our respective providing support in our respective countriescountries

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Epidemiological study in the Arab World: The Epidemiological study in the Arab World: The Pan Arab of Neurological Diseases should take Pan Arab of Neurological Diseases should take up the challenge of creating a Pan Arab up the challenge of creating a Pan Arab epidemiological study that will drive awareness epidemiological study that will drive awareness and create the needed base for dealing with and create the needed base for dealing with governmental bodies.governmental bodies.

This will provide solid data to help promote This will provide solid data to help promote awareness on the condition and support for awareness on the condition and support for patients in terms of medical management and patients in terms of medical management and social facilities.social facilities.

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

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Make AD groups in each country leverage the Make AD groups in each country leverage the media and lobby with the governmental bodies media and lobby with the governmental bodies to improve the status of the AD sufferer in our to improve the status of the AD sufferer in our region.region.Develop genetic tests that are specialized in the Develop genetic tests that are specialized in the region hand in hand with genetic counseling.region hand in hand with genetic counseling.

Laboratory testing and neuro-imaging should be Laboratory testing and neuro-imaging should be developed and viewed as pivotal tools in the developed and viewed as pivotal tools in the process of developing the management of the process of developing the management of the disease.disease.

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A Set of recommendations for the A Set of recommendations for the AD in the regionAD in the region

Develop a drug therapy policy through the Develop a drug therapy policy through the medical societies and relevant governmental medical societies and relevant governmental departments for the use of AD drugs and departments for the use of AD drugs and recommendations as well as formalize a cost recommendations as well as formalize a cost management issue on the long run. management issue on the long run.

Standardization for future day care/nursing Standardization for future day care/nursing homes to be established is recommended to homes to be established is recommended to ensure a properly high-standard run home that ensure a properly high-standard run home that will cater for the needs of these patients.will cater for the needs of these patients.

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A Set of recommendations for the A Set of recommendations for the AD in the regionAD in the region

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

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1 Problems of Alzheimer’s Disease in the Arab World Dr. Ashraf Al-Kurdi FRCP(London), FRCP (G)...

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