authorsCoordinating Author:

Dr Chicot J. VasSenior Consultant Neurologist

Holy Family HospitalMumbai, India

Co-Authors:Dr S. Rajkumar

Centre for Mental Health StudiesUniversity of NewcastleJames Fletcher Hospital

Newcastle NSW 2300, Australia

Dr Panas TanyakitpisalDepartment of NeuroscienceSomdet Chaopraya Hospital,

Bangkok, Thailand

Dr Vijay ChandraRegional Adviser, Health and Behaviour

South-East Asia Regional OfficeWorld Health Organization

New Delhi, India

SEA/Ment/116Distr: General

© World Health Organization 2001

This document is not a formal publication of the World Health Organization(WHO), and all rights are reserved by the Organization. The document may,however, be freely reviewed, abstracted, reproduced or translated, in part or inwhole, but not for sale or for use in conjunction with commercial purposes.

The views expressed in documents by named authors are solely the responsibilityof those authors.

Painting on pages 6 and 7 has been contributed to WHO by Yarathaya Chinaprapath,an eminent artist.

Paintings on pages 12 and 45 are part of a WHO-sponsored global school conteston mental health for children aged 6-9 years (both paintings by Dhruv Suri).

Historical backgroundMyths and misconceptions abour Alzheimer’s disease

Mild memory loss: An inevitable consequence of ageingWhat is dementia? What is Alzheimer’s disease?

Diagnosis of Alzheimer’s diseaseSome facts and figures

General principles of management and treatment

Legal issuesWhat can be done?

contents

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ALZHEIMER’SDISEASE:The BrainKiller

Populations of Member Countries of the World Health Organization’s South-East Asia Region have suffered for ages from many communicable diseases.While some of these have been successfully controlled, others continue asserious public health problems. However, recently, it has become increasinglyclear that noncommunicable diseases, including mental and neurologicaldisorders, are important causes of suffering and death in the Region. Anestimated 400 million people worldwide suffer from mental and neurologicaldisorders or from psychosocial problems such as those related to alcohol anddrug abuse. Our Region accounts for a substantial proportion of such people.Thus, the Region faces the double burden of diseases – both communicable andnoncommunicable. Moreover, with the population increasing in number andage, Member Countries will be burdened with an ever-growing number ofpatients with mental and neurological disorders.

As Dr Gro Harlem Brundtland, the Director-General of the World HealthOrganization says, “Many of them suffer silently, and beyond the suffering andbeyond the absence of care lie the frontiers of stigma, shame, exclusion and,more often than we care to know, death”.

While stigma and discrimination continue to be the biggest obstacles facing thementally ill, inexpensive drugs are not reaching many people with mental andneurological illnesses. Although successful methods of involving the family andthe community to help in recovery and reduce suffering and accompanyingdisabilities have been identified, these are yet to be used extensively. Thus,many population groups still remain deprived of the benefits of advancementin medical sciences. Dr Brundtland has said, “By accident or design, we are allresponsible for this situation today.”

The World Health Organization recently developed a new global policy andstrategy for work in the area of mental health. Launched by the Director-General in Beijing in November 1999, the policy emphasizes three priority areasof work: (1) Advocacy to raise the profile of mental health and fightdiscrimination; (2) Policy to integrate mental health into the general healthsector, and (3) Effective interventions for treatment and prevention and theirdissemination. The South-East Asia Regional Office of the World HealthOrganization is committed to promoting this policy.

Mental health care, unlike many other areas of health, does not generallydemand costly technology. Rather, it requires the sensitive deployment ofpersonnel who have been properly trained in the use of relatively inexpensivedrugs and psychological support skills on an outpatient basis. What is needed,above all, is for all concerned to work closely to address the multi-facetedchallenges of mental health.

Dr Uton Muchtar RafeiRegional DirectorWorld Health OrganizationRegional Office for South-East Asia

Messagefrom theRegionalDirector

6

Several centuries BC, Chinese, Egyptian, Greek, Indian and Roman healerswere aware that advancing years and old age were associated with disorders ofmemory and other brain functions. In some cases, people who had previouslybeen very intelligent and sensible started “behaving like children.” However, tillthe late 19th century, these symptoms were considered as a “part of old age.”It was only in 1906 that Dr Alois Alzheimer vividly described a patient withmanifestations of dementia and since 1907, this common cause of dementiahas been called Alzheimer’s disease.

Alzheimer’s disease is known to occur in all parts of the world where it hasbeen systematically researched. It can affect anyone, regardless of caste, creed,race, socioeconomic group or gender. Even though it can affect anyone, yetnobody can be sure beforehand who it will affect. Unfortunately, myths andmisconceptions about the disease are better known than facts. This oftendeprives patients of proper medical treatment, much to the detriment of boththe patient and the family.

Some interesting and hopeful statistics were offered at the “World Alzheimer’sConference - 2000" held in Washington DC, USA. It was said that the rate ofoccurrence of Alzheimer’s disease doubles every five years for those between65 and 85 years of age but if its onset were delayed by five years, the numberof cases worldwide would be halved. Thus, serious attention needs to be paidto the risk factors and preventive measures that may be taken to postpone theonset, if not prevent the appearance, of Alzheimer’s disease. Epidemiologicaldata already suggest that certain communities in Asia and Africa may have alower risk for Alzheimer’s disease compared to western countries. Researchersin India have suggested a gene-environment interaction in the causation ofAlzheimer’s disease. Although genes cannot be altered, the environmental riskfactors which interact with the genetic factors can possibly be modified,thereby reducing the risk. This promising concept must be pursued as it affordsa ray of hope for the future.

Charles Colton, British churchman and writer (1780-1832) wrote: “Body andmind, like man and wife, do not always agree to die together.” We need to findout why the brain dies before the body, leading to the devastating diseasecalled Alzheimer’s disease.

With increase in life expectancy, populations of Member Countries in the SouthEast Asia Region (SEAR) will be increasingly faced with diseases which affect theolder age group, such as Alzheimer’s disease. Thus it is time for governments toplan and address issues related to such diseases before they reach a crisissituation. The WHO Regional Office for South-East Asia is committed toassisting Member Countries in addressing the challenges of tackling thesediseases.

This document, prepared by a panel of experts from the Region, providesvaluable information for the lay person and policy-makers regarding themultifaceted aspects of “the brain killer disease” and what can be done torelieve the suffering of patients and their families.

Dr Vijay ChandraRegional Adviser, Health & BehaviourWorld Health OrganizationRegional Office for South-East Asia

Preface

7

What if...

...this werethe case with

you?

Yarathaya Chinaprapath

8

9

Historical background

A rude shock...

A young man, Amit, was studying in the US. He had notbeen home for three years. He had heard that hisgrandfather was “growing old” but did not know that hewas sick in any way.The young man decided to visit his grandfather on hisfirst day back home. He was met by the old faithfulmaid - the same maid who had helped bring him up.She hugged Amit, offered him a cup of tea and wantedto know all about him. Then she very quietly told himthat his grandfather was not in the best of health butthat she would call him. Mr B entered, shabbily dressedwith his vest outside his shirt and looking frightened. Hesaid that he had paid all his taxes and wanted to knowwhy Amit had come to the house without anappointment. Mr B apparently did not remember Amitor that he was his favourite grandson. He kept callingAmit his brother. During dinner, the young man wassurprised to see how his grandfather had aged: he wassloppy and made a mess of the food; slurped all thetime; his previous impeccable table manners haddisappeared. Finally, he got up after dessert, went to thecorner of the room and relieved himself by ‘watering’the potted plants. Amit was shocked.Mr B soon went to bed. The maid of many years wasembarrassed and unhappy. She told Amit that Mr B hadbeen in this state for some twelve months. His memory,even for day-to-day things had faded. He could notremember telephone messages, would repeat himselfincessantly, even demand breakfast and lunch a secondand third time. He would try to take sexual libertieswith her and, at the same time, accuse her of robbinghim and letting thugs and crooks into his house. Attimes, when he was in a good mood, he would take herby the hand and introduce her to the fairies sitting onthe window, then tell her to set the table and cookenough for the five fairies and themselves. His businessaffairs were in a shambles; yet, he tried to set up newcompanies and start projects which he promptly forgot.All in all, life was bad.Amit was aghast. He took his grandfather to a doctorwho referred him for special assessment by a team ofdoctors consisting of a neurologist, psychiatrist andpsychologist. Certain tests were performed and adiagnosis of dementia due to Alzheimer’s disease wasmade.

D ementia, derived from the Latinword, [de-=out from + mens=the mind] means loss

or impairment of mental powers dueto a disease. The word démenceexisted in the French language as farback as 1381. It is generallyunderstood today as the “loss ofintellectual abilities of sufficientseverity to interfere with social oroccupational functioning”. Thisdefinition from the Diagnostic andStatistical Manual of the AmericanPsychiatric Association of 1994 has along and interesting history, whichtranscends generations and indeedcivilizations.

The Egyptians and Greeks of theperiod 2000 - 1000 BC were wellaware that advancing years and oldage were associated with disorders ofthe memory. The Chinese used thewords Zhi Dai Zheng for dementiaand Lao Ren Zhi Dai Zheng for seniledementia which was describedbasically as a disease of old peoplecharacterized by muteness, lack ofresponse and craziness. The Romans,i.e. AC Celsus and Claudius Galen ofthe first and second centuries AD,referred to chronic mental disordersknown to produce an irreversibleimpairment of higher intellectualfunctions. The Ayurvedic physiciansof India used the Sanskrit term SmritiBhransh as early as 800 BC todescribe loss of memory. Also, inIndia, the expressions satar-batarwhich literally translates to ”turned70” and another sathiya gaya whichtranslates to “turned sixty” are usedfor old people. Research hasindicated that these expressions areapplied only to those older people

10

who show altered behaviour and loss of memory regardlessof age. However, since this change most frequentlyhappened in people at 60 or 70 years of age, the termsassumed a numerical connotation. In some parts of SouthIndia, the word Chinan, probably derived from theDravidian languages, is used to refer to a conditionassociated with ageing, deterioration in memory, abnormalbehaviour and occasional incontinence. While the conceptof dementia in the aged is widely known in Thailand,Alzheimer’s disease also known as Roke Long is not as wellrecognized.

The changes brought on the mind by old age have alsobeen recognized in the past. William Shakespeare refers tothem in his plays “As You Like It”, “Macbeth” and “KingLear” - the last written about 1606, aptly describes what isknown even today as dementia.

Act 4, Scene 7:60-70

LEAR:“Pray, do not mock me:

I am a very foolish fond oldman,

Four score and upward, notan hour more nor less;

And, to deal plainly,I fear I am not in my perfect

mind.Methinks I should know you,

and know this man;Yet I am doubtful: for I am

mainly ignorantWhat place this is; and all the

skill I haveRemembers not these

garments; nor I know notWhere I did lodge last night.

Do not laugh at me;For, as I am a man, I think

this ladyTo be my child Cordelia.”

CORDELIA:“And so I am, I am.”

11

Did you know thatAlzheimer’sdisease can affecteven the rich andfamous?Former President ofUSA, Mr RonaldReagan, hasAlzheimer’s disease.

any myths and misconceptions prevail aboutAlzheimer’s disease. It is not only the common manbut some physicians too who lack a proper

understanding of this disease.

A minor decline in intellectual capability with advancingyears occurs in most people. However, even when thisprogresses to the point of severe intellectual loss, clearlyindicating a disease process, the family continues to acceptit as a part of the ageing process and does not take theirloved one to a doctor. There is a sense of fatalism andacceptance of ill-health in old age in the communities ofSouth-East Asia. This is detrimental to the patients, as itdeprives them of medical care, as well as to the family, as itsuffers the consequences of a member’s disease.

Myth:This is senility, you can’t reverse old age, so why go to adoctor?

Fact:Alzheimer’s disease is NOT “normal old age”. Every elderlyindividual does not have this disease. Thus, it is important tobe aware of the signs and symptoms which could suggestthis disease and consult a qualified medical practitioner toassess your loved one.

Myth:This is madness!

Fact:Although, some Alzheimer’s disease patients havebehavioural symptoms, these are an integral part of thedisease process. Under no circumstances should this beconsidered to be ‘madness’. The patients are unable tocontrol their behaviour and therefore, appropriate treatmentis necessary. Although psychiatrists do treat Alzheimer’sdisease, every patient treated by them is not ‘mad’.

Myth:He is behaving like a child. I will teach him sense.

Fact:Old age has been referred to in fiction as a “secondchildhood”. There may be some elements of childish

Myths andmisconceptions aboutAlzheimer’s disease

M

12

behaviour in such patients but this is a superficial similarity.Family members and care-givers in their desire to be helpful,unknowingly try to “teach the patient to behave”. There arehorror stories of patients being beaten and scolded aschildren are. Family members must realize that if thepatients were capable of controlling their behaviour, theywould have done so in the first place. Also, care-givers mustrealize that the ability to ‘learn’ new things is lost inpatients. Thus, you cannot “teach him sense”; butappropriate treatment can help.

Myth:What do you expect in old age? Such behaviour has to betolerated.

Fact:In general, society in South-East Asia respects the elderlyand minor deviations in behaviour are tolerated. There is nocause for worry as long as it remains a ‘minor’ deviationfrom the normal. However, waiting for a crisis situation orfor the disease to advance is undesirable. Both extremesshould be avoided, i.e. perpetually worrying about everyminor deviation in behaviour, or not to worry at all aboutmajor deviations in behaviour. A judicious middle path ofconcern for elderly family members is most desirable.

Myth:He is possessed by evil spirits. I will take him to a sorcererand get his evil spirit exorcised.

Fact:Alzheimer’s disease certainly does not indicate possessionby evil spirits nor is it penance for sins committed inprevious lives. It is a well-defined medical illness. Treatmentshould be received from a qualified medical practitioner andnot from faith healers or sorcerers.

Myth:He has no memory problem, he can remember all about hischildhood.

Fact:In Alzheimer’s disease, memory for old events is preservedtill the advanced stages of the disease. In the early stages,the ability to learn new things is impaired. Since the

Some famous people whohave had Alzheimer’sdisease

Adcock, Joebaseball playerAlbertson, MabelactressAndrews, DanaactorBalanchine, Georgedancer, choreographerBing, Rudolphopera impresarioBrooks, JamesartistBurrows, AbeauthorChen, JoycechefCopeland, AaroncomposerDeKooning, WillemartistDorsey, Thomas, Afather of gospel musicFears, Tomhall of fame professionalfootball player and coachFeraud, Louisprominent fashion designerFrancis, ArleneactressFrankovich, Mikemovie producerFrench, John DouglasphysicianGoldwater, BarryArizona SenatorHayworth, RitaactressHenriquez, Raul SilvaRoman Catholic cardinal,human rights advocateKlutznick, Philipreal estate developer, adviserto five U.S. Presidents

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common man assumes that memory for old events is moreimportant, some patients are not brought to the doctor inthe early stages of the disease.

Even if a patient with changes in intellectual capability istaken to a doctor, general physicians with limited experiencein treating Alzheimer’s disease will rarely make a specificdiagnosis of this disease. Although awareness is increasing,many misconceptions prevail among medical practitioners.

Doctor:How can I make a diagnosis if the patient cannot tell mewhat is wrong with him?

Leroy, Mervyndirector - 1987Lord, JackactorMacDonald, RossauthorMeredith, BurgessactorMurdoch, IrisauthorO’Brien, EdmondactorO’Connell, ArthuractorOwen, Marvbaseball playerPicon, MollyactressPreminger, OttodirectorQuackenbush, Billhall of fame professionalhockey playerReagan, Ronaldformer President of USARitz, HarryperformerRobinson, Sugar RayboxerRockwell, NormanartistScott, SimonactorShulman, IrvingscreenwriterSchwartz, Bettyfirst woman to win anOlympic gold medal in trackeventsSwift, KaycomposerVan Vogt, Alfredscience fiction writerWhite, E.B.authorWilson, HaroldBritish Prime Minister(List provided by Alzheimer’sDisease International, UK) Dhruv Suri

Some famous people...

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Letter from President Ronald Reagan to theAmerican people:Nov. 5, 1994

My Fellow Americans,I have recently been told that I am one of themillions of Americans who will be afflicted withAlzheimer’s disease.Upon learning this news, Nancy and I had todecide whether as private citizens we would keepthis a private matter or whether we would makethis news known in a public way.In the past, Nancy suffered from breast cancer andI had my cancer surgeries. We found through ouropen disclosures we were able to raise publicawareness. We were happy that as a result, manymore people underwent testing.They were treated in early stages and able toreturn to normal, healthy lives. So, now we feel itis important to share it with you. In opening ourhearts, we hope this might promote greaterawareness of this condition. Perhaps it willencourage a clearer understanding of theindividuals and families who are affected by it.At the moment I feel just fine. I intend to live theremainder of the years God gives me on this earthdoing the things I have always done. I willcontinue to share life’s journey with my belovedNancy and my family. I plan to enjoy the greatoutdoors and stay in touch with my friends andsupporters.Unfortunately, as Alzheimer’s disease progresses,the family often bears a heavy burden. I only wishthere was some way I could spare Nancy from thispainful experience. When the time comes I amconfident that with your help she will face it withfaith and courage.In closing, let me thank you, the American people,for giving me the great honour of allowing me toserve as your President. When the Lord calls mehome, whenever that may be, I will leave with thegreatest love for this country of ours and eternaloptimism for its future.I now begin the journey that will lead me into thesunset of my life. I know that for America therewill always be a bright dawn ahead.Thank you, my friends. May God always bless you.Sincerely,Ronald Reagan(Reproduced with permission from the Office ofRonald Reagan)

Explanation:Although the patient cannot give adetailed history, family members certainlycan, provided the physician asksappropriate questions of them. Evenchildren cannot give a detailed history, yetpaediatricians are able to make accuratediagnoses. A detailed history from familymembers plays a major role in reaching adiagnosis of impairment in intellectualfunction, the cause of which could beAlzheimer’s disease.

Doctor:Why make an untreatable diagnosis suchas Alzheimer’s disease?

Explanation:Although there is no cure as yet forAlzheimer’s disease, a lot can be done tomake the patient and the family morecomfortable. A physician’s role is critical:making an accurate diagnosis, carefullyfollowing up the patient for other medicalillnesses, treating distressing behaviourand counselling the family, who oftensuffers more than the patient.

Doctor:I have many urgent cases waiting for meand Alzheimer’s disease cases take up toomuch of my time.

Explanation:Management of patients of Alzheimer’sdisease and support to the family doestake time. Not all medicine is based inintensive care units. A doctor has to givesufficient time to patients of Alzheimer’sdisease in order to reach a diagnosis,prescribe the appropriate treatment andcounsel the family. A team approachinvolving the support of paramedical staffis very useful.

15

he growth cycle is well known to all of us: when ababy is born, it is completely dependent on themother; next, the child learns to recognize family

members and express its needs, then goes to school anduniversity and, finally, grows up to be a healthy adult.Health remains stable for many years, till the onset ofdecline in bodily functions.

The ageing process occurs in every living species, so also inhuman beings: greying of hair, wrinkling of the skin,hardening of arteries, aches and pains in joints, weakeningof eyesight. The aged often complain that their memorypower has decreased over the past few years. While theyrecall events of the past, they tend to forget more recentevents. Remembering names and finding the “right word”seem to be a problem but, as they have discovered, thewords do come back later when they stop trying too hard.It is well known that learning gets harder as one growsolder. These are the features of advancing years, which areto be expected, but are of no consequence, as they do notinterfere with daily life. This basically implies that minorforgetfulness, such as forgetting where one has kept thekeys, is of no consequence. Sometimes people get veryconcerned about minor forgetfulness which is completelynormal in old age, and confuse it with Alzheimer’s disease.

This growth cycle of development from birth to teenage toadulthood and the gradual decline with age is depicted inthe following graph:

Mild memory loss:An inevitableconsequenceof ageing

T

Do not “test” yourmemory every day.This leads toanxiety. Manypatients who cometo a doctorcomplaining of“loss of memory”actually haveanxiety ordepression

Proceed tonatural death

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In some people, increasing age is accompanied by a loss ofintellectual capability so marked that it becomes a disease. Thisvery rapid decline is shown in the above graph as Alzheimer’sdisease.Between the inevitable consequences of ageing andAlzheimer’s disease is the “grey area” (shaded grey in thediagram) in which some people suffer loss of intellectualfunctions that is more than mild and yet not severe enough tobe considered Alzheimer’s disease. Scientists are unsure of theterminology vis-à-vis these patients. Many terms are in use, forexample, minimal cognitive impairment or benign senescenceof old age. This is an area of intense researchto determine whether these cases will eventuallyprogress to Alzheimer’s disease and, if so, whowill progress and why, or which of these casesremain in the “grey area”.

GREYAREA

Proceed to naturaldeath

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Components ofintellectual capability

Memory and learningAttention, concentrationand orientationThinking (e.g. problemsolving, abstraction)CalculationLanguage (e.g.comprehension, wordfinding)Geographic orientation

What is dementia?Dr Philippe Pinel (1745-1826), the founder of modernpsychiatry, first used the word ‘dementia’ in 1797. Theconcept of dementia and the word itself are clearly notnew. Dementia is generally defined as the “loss ofintellectual abilities (medically called cognitive function) ofsufficient severity to interfere with social or occupationalfunctioning” (Diagnostic and Statistical Manual of theAmerican Psychiatric Association).

Intellectual capability is a complex function consisting ofmany individual ‘components’, such as memory, problem-solving, calculation, speech, ability to find the way, analyseproblems, etc.

Neuropsychologists have developed tests for each of thesecomponents of intellectual function. Dementia leads to adeterioration in all these components of intellectualfunction.

Doctors now know that dementia can occur as a result ofmany diseases. In some cases, it is not known exactly whythe patient has dementia, as in dementia due toAlzheimer’s disease. In other cases, there is a contributorycause. These contributory diseases may be located primarilyoutside the brain, as in certain thyroid diseases or may bedue to abnormalities of the brain such as multiple strokes,increased pressure in the brain and degenerative disorders,wherein brain cells are damaged and die. When dementia isthe result of certain known causes, it is called secondarydementia.

What is Alzheimer’s disease?The Diagnostic and Statistical Manual of the AmericanPsychiatric Association, which is the reference sourceworldwide, was first published in 1952 and used the term“Organic Brain Syndrome” to indicate mental abnormalitiesthat were associated with chronic brain disorders. In 1968,the second edition of the Diagnostic and Statistical Manualintroduced the expressions ‘pre-senile’ dementia and ‘senile’dementia which was unfortunate, insofar as it implied thatcases with onset of disease before 60 years of age (pre-senile) had one disease called Alzheimer’s disease, whereas

Dementia is a loss ofmultiple componentsof intellectual function

Contrary to popular belief,loss of memory is not theonly deficit in dementia.However, since it is the mostimportant component in day-to-day living, it causessignificant impairment topatients, thus bringing themto a doctor.

What is dementia?What is Alzheimer’sdisease?

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Dementia is a sign ofbrain disease. It canbe caused by manyconditions affectingthe brain

There are about 100known causes ofdementia. Somecommon causesare:

l Alzheimer’sdisease

l multiple strokes

l infections of thebrain

l severe thyroiddeficiency

l severe braininjury

cases with onset after 60 years of age (senile) had anotherdisease called “senile dementia”. It is now well acceptedthat, regardless of the age of onset, pre-senile and seniledementias are manifestation of one disease, i.e.Alzheimer’s disease. Alzheimer’s disease has also beencalled primary degenerative dementia. It is referred to as‘degenerative’ because the brain cells wither away and die.This disrupts the production and distribution of certainchemicals called neurotransmitters that carry messageswithin the brain. Brain cells are not damaged from outsideby conditions such as severe brain injury, tumours or strokeswhich affect the brain. As there is no cause for the disease,it is referred to as a ‘primary’ disorder, which in medicalterms implies “without cause”.

In patients of Alzheimer’s disease, loss of intellectualcapability progresses to such an extent that they cannotremember where they have kept their valuables, money orjewellery and have to search for hours to locate them; orcannot recall the names of their own children orgrandchildren. They tend to lose interest or neglect theirwork, do not keep appointments, have difficulty findingwords, or repeat the same questions that have beencorrectly answered. Occasionally, they forget having eaten

and repeatedly askfor meals or losetheir way whenoutside the house.Sometimes, theremay be changes intheir behaviour orpersonality.

Alzheimer’s diseaseis the most commoncause of dementia,accounting forprobably 50-70 percent of all dementiasworldwide, asproven by researchstudies in developedcountries andongoinginvestigations in

Alois Alzheimer

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In 1906, Dr Alois Alzheimer, afamous German pathologist,described a patient who haddied of an unusual mentalillness.

A woman, 56 years old, showedunreasonable jealousy towards herhusband as the first noticeablesign of the disease. Soon a rapidlyincreasing loss of memory couldbe noticed. She could not find herway around in her own apartment.She carried objects back and forthand hid them. At times she wouldbegin shrieking loudly.Her ability to remember wasseverely disturbed. If one pointedto objects, she named most ofthem correctly, but immediatelyafterwards she would forgeteverything again. When reading,she went from one line to another,reading the letters or reading withsenseless emphasis. Whenwriting, she repeated individualsyllables several times, left outothers, and quickly becamestranded. When talking, shefrequently used perplexingphrases and some paraphrasicexpressions (milk-pourer instead ofcup). Sometimes, one noticed hergetting stuck. Some questions sheobviously did not comprehend.She seemed no longer tounderstand the use of someobjects.The generalized dementiaprogressed however. Towards theend, the patient was completelystuporous; she lay in bed with herlegs drawn up under her, and inspite of all precautions sheacquired bedsores. After 4-1/2years of suffering, death occurred.Since Dr Alzheimer first describedthese characteristic abnormalbrain changes, the disease is nowknown as Alzheimer’s disease.

developing countries.

Manifestations of Alzheimer’s disease

Patients of Alzheimer’s disease generally have threekinds of symptoms. These have been grouped as the A,B, C of Alzheimer’s disease.

‘A’ stands for impairment in Activities of daily living. Theability to perform activities such as brushing, bathing,toilet habits and dressing is lost, usually in the moreadvanced stages of the disease.

‘B’ stands for abnormal Behaviour in the patient. Thiscan be very distressing, for example, patients maysuspect their spouse of 50 years to be a thief, notrecognize their own children, or make sexual advancestowards servants. Some patients even become abusive,possibly in contradiction to their past behaviour.Restlessness at night is another pattern which is verytroublesome to the entire family.

‘C’ stands for loss of Cognitive functions. Theintellectual capability of the patient is lost. The abilityto perform activities that they were very good at,such as arithmetic calculations, planning, giving theiropinion and making difficult decisions, is lost. Theyseem to get confused when confronted with theslightest problem. The most striking aspect is thepattern of loss of intellectual function that follows theprinciple of “last learnt, first lost”. This is shown in thegraph across.

20

In the early stages of the disease, the most complicatedfunctions, such as those learnt in professional college, arethe first to be lost. However, basic capabilities, such as toilethabits and recognition of immediate family members, arepreserved. As the disease progresses, additional functionsare lost. In the more advanced stages, the patient becomesalmost child-like, being completely dependent on others interms of being fed, bathed, dressed and exercised. Therapid progression of this disease leads to premature death,often due to causes such as food going into the lungs orfracture due to a fall. Patients can, however, survive up to15-20 years after the onset of illness.

The early symptoms of Alzheimer’s disease such asforgetfulness, inability to learn new things, loss ofconcentration, unexplained weight loss and difficulties inwalking may be overlooked because they resemble signs ofnatural ageing. Memory for events in the remote past ispreserved in the early stages of the disease.

In healthy individuals, similar symptoms can result fromfatigue, grief or depression, many illnesses, vision orhearing loss, the use of alcohol or certain medications, orsimply the burden of too many details to remember atonce. But when memory loss worsens, family and friendscan perceive the existence of more serious problems.

Often there are accompanying problems, such as hearingloss and a decline in reading ability, as well as generalphysical debility in patients of Alzheimer’s disease. Thesefurther add to their disability.

Remote memory ispreserved in the earlystages of the disease

Do not conclude by theirability to remember events inthe distant past that he/shehas no memory problem. Thiscapability is preserved till latein the progression ofAlzheimer’s disease.

What is the cause ofthese symptoms?

A number of disorders maybe causing these symptomsand must be ruled out beforea diagnosis of Alzheimer’sdecrease can be made. About20 per cent of suspectedAlzheimer’s cases turn out tobe suffering from some otherdisorder, half of which arepotentially treatable orcontrollable.

Birth Death

D E A T H

21

Source: Alzheimer’s Disease: Early Warning Signs and Diagnostic Resources. Usedwith the permission of The Junior League of NYC, Inc. 19881999 Nidus Information Services, Inc. Well-Connected Report: Alzheimer’s Disease.March 1999 (online) www.well-connected.com

Differences between normal signs of ageingand early Alzheimer’s disease

Normal

Periodic minor memory lapsesor forgetfulness of part of anexperience.Occasional lapses in attentionor lapses in attention orconcentration

Temporary sadness or anxietybased on appropriate andspecific cause.Changing interests.Increasingly cautiousbehaviour.

Early signs of Alzheimer’s disease

Misplacement of important items.Confusion about how to performsimple tasks.Trouble with simple arithmeticproblems.Difficulty in making routinedecisions.Confusion about month or season

Unpredictable mood changes.Increasing loss of outsideinterests.Depression, anger, or confusion inresponse to change.Denial of symptoms.

Differences between normal and late Alzheimer’s disease

Normal

Unimpaired language skills.

Increasing caution inmovementSlower reaction time.

Later signs of Alzheimer’s disease

Difficulty in completing sentencesor finding the right words.Reduced and/or irrelevantconversation.

Visibly impaired movement orcoordination, including slowing ofmovements, halting gait, andreduced sense of balance

Memory and Concentration

Mood and Behaviour

Language and Speech

Movement/Coordination

22

Diagnosis ofAlzheimer’s disease

ssessment of a patient with Alzheimer’s disease,usually involves a team of doctors consisting of aneurologist, psychiatrist and neuro-psychologist,

assisted by a radiologist and a pathologist. Assessmentinvolves a series of steps and can take several days tocomplete. There is no single test which confirms or excludesAlzheimer’s disease.

Step 1: In evaluating a patient, the physician will need tocheck if there is a substantial deterioration in the intellectualfunction of the aged person relative to his/her previousstatus, who otherwise seems to be in good physicalcondition. In medical terms, it is necessary to seek evidenceof ‘dementia’.

Doctors will administer neuropsychological tests to checkvarious components of intellectual function. Examples ofsuch tests are the Fuld Object Memory Test in whichpatients are shown 10 objects and then asked to memorizethis list of objects and repeat it to the examiner. Anaverage healthy adult should be easily able to recall 7-8objects. However, patients of Alzheimer’s disease can recallonly one or two objects. Another neuropsychological test isthe Boston Naming Test in which subjects are shownvarious objects and asked to name them. Most healthypeople can easily name these objects, while patients withAlzheimer’s disease have trouble naming even such simpleobjects as a comb or a pen. Similarly, there areneuropsychological tests for speech, calculation, problem-solving and judgement. Based on the results of these tests,loss of intellectual functions can be documented.

Step 2: The doctor needs to ensure that the loss ofintellectual functioning is severe enough to disable theperson in activities of daily living. Patients of Alzheimer’sdisease are extremely disabled in function. When loss ofintellectual function is so severe that it leads to disabilities,conditions for Step 2 in the diagnosis of Alzheimer’s diseaseare met.

Step 3: In the diagnosis of Alzheimer’s disease, it isimportant to exclude other causes of loss of intellectualfunction. For this purpose, doctors will take a detailedhistory of the patient’s illness from their relatives, thenconduct a comprehensive medical, neurological and

ASteps in the diagnosis ofAlzheimer’s disease

There are three steps in thediagnosis of Alzheimer’sdisease:

Step 1:Documentation of loss ofintellectual function.

Step 2:Documentation that the lossof intellectual function isdisabling the patient in dailyactivities.

Step 3:Exclusion of other causes ofloss of intellectual function.

23

neuropsychological examination. Blood tests and X-ray tests,such as CT scan and MRI scan, will help to excludeconditions such as thyroid disease, brain tumour or stroke.In Alzheimer’s disease, CT and MRI scans show a shrinkingof the brain. This is medically referred to as “corticalatrophy”.

If Alzheimer’s diseaseis diagnosed, thefamily shouldcollectively decide onseveral issues ofmanagement ortreatment of thepatient as well as onthe patient’s rights,aspirations and legalinterests.

24

t is estimated that there are currently about 18 millionpeople worldwide with Alzheimer’s disease. Thisfigure is projected to nearly double by 2025 to

34 million. Much of this increase will be in the developingcountries, and will be due to the ageing population.Currently, more than 50% of people with Alzheimer’s diseaselive in developing countries and by 2025, this will be over 70%.

Effect of age on risk of Alzheimer’s disease

Alzheimer’s disease can occur at any age, even as young as 40years, but its occurrence is much more common as the yearsgo by. In fact, the rate of occurrence of the disease increasesexponentially with age, which means that it occurs very rarelyamong those 40-50 years old, increases between 60 and 65years, and is very common over 80 years. In November 2000,the National Institute on Aging (USA) estimated that up to50% of Americans aged 85 years or more may haveAlzheimer’s disease. Combining the results of several studies,the following rates of occurrence of Alzheimer’s disease areestimated in the general population in the West:

Source:Alzheimer’s DiseaseInternationalFactsheet 3,April 1999

Some facts and figuresI

Since the risk of getting the disease increases with age, thenumber of patients with the illness to be found in anycommunity will depend on the proportion of older people inthe group. Traditionally, the developed countries had largeproportions of elderly people, and so they had very manycases of Alzheimer’s disease in the community at one time.However, the developing countries are now undergoing ademographic transition so that more and more persons aresurviving to an old age. For example in India, the 1991census revealed that 70 million people were over 60 years.This number increased in 2001 to about 77 million, or 7.6%

Why did my fatherget Alzheimer’sdisease?He was such agood man.

25

of the population. Similar demographic changes are occurringin other Member Countries of the SEA Region.In Sri Lanka, the life expectancy is 74.1 (with 9.6% of thepopulation being over 60 years), which is the highest in theRegion, followed by Thailand (life expectancy 70, with 8.7%of the population over 60 years). With this increasednumber of elderly people, there will be many cases ofAlzheimer’s disease. Thus, the time has come to discussissues related to Alzheimer’s disease in the MemberCountries of the Region.

Urban/rural differencesRecent research in India and Africa suggests that the risk ofAlzheimer’s disease was possibly higher for urban ascompared to rural areas. This has raised several importantissues for research: What is the deciding factor? Is itincreased life expectancy? Is it lifestyle? Is it diet?

Gender differencesIt is generally believed that men and women are equally atrisk of Alzheimer’s disease. However, in developedcountries, it is commonly observed that more women thanmen patients are to be found in old age homes and specialcare facilities. This is a reflection of the higher longevity ofwomen as compared to men, and since this is a diseasewhich strikes older people, there are more women patientsthan men. There is no evidence that women are at anincreased risk of the disease than men, when the age factoris correlated in existing data. Also, women are better able tocare for male patients than men are able to care for femalepatients. Thus, a woman with Alzheimer’s disease has ahigher chance of being put into an institution because ofher husband’s inability to take care of her. However, a manwith Alzheimer’s disease has a higher chance of his wifetaking care of him at home. Thus, a greater number ofwomen patients are found in institutions.

EducationSome research studies have suggested that those withhigher education are at a lower risk for Alzheimer’s diseasethan those with less education. Although this has beenrepeatedly demonstrated in several projects, the reason forthis association is unknown.

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East-West differencesStudies done in South India, Mumbai and the northern stateof Haryana in India have reported very low rates ofoccurrence of Alzheimer’s disease in those at 65 years ofage or older, ranging from about 1% in rural north-India(the lowest reported from anywhere in the world whereAlzheimer’s disease has been studied systematically) to 2.7in urban Chennai.

Studies from China and Taiwan have also shown a lowerrisk of Alzheimer’s disease as compared to westerncountries. The low rates of occurrence of Alzheimer’sdisease in the eastern countries is in striking contrast todata from the western countries.

Community-based studies are of particular interest whenthey look at populations similar in origin but subject torelocation. Some Japanese reports are important in thisrespect. Two recent investigations in the rural areas ofJapan revealed that Alzheimer’s disease occurred in about3.5% of individuals aged 65 or more. Reported research in1996 among older Japanese Americans living inWashington and in Hawaii revealed that the number ofAlzheimer’s disease cases was much higher than thatestimated in Japan and closely resembled the findings forNorth America and Europe.

Similarly, research studiescomparing the Yorba’s livingin Ibadan, Nigeria, andAfrican-Americans living inIndianapolis, USA, are alsoof interest as the groupsshare an ethnic backgroundbut live in widely differentenvironments. In the Ibadangroup, the proportion ofAlzheimer’s disease cases

was a low 1.4% (similar to rates in India), while the rate forAlzheimer’s disease among the African-Americans wasestimated at 6.2%.

From the available evidence, it would appear that thenumber of cases of Alzheimer’s disease in Asia, and

27

particularly in India and Africa, is lower than that reportedfrom studies in developed countries. This raises a majorquestion - why?

There are several possible reasons. Perhaps physicians donot diagnose Alzheimer’s disease but use non-specific termssuch as senility. Other postulates refer to the socioeconomicrealities and the lack of awareness of Alzheimer’s disease inthe populations studied. It is likely that there is a lowsurvival rate after the onset of the disease. Poor access totechnologically-advanced health care may especially hastenthe demise of patients, resulting in lower estimates ofnumber of cases. Some have also speculated that thetraditional attitude towards the elderly being one of respect,“family members will not force medical care or even foodon an older relative who takes to his bed and refuses toeat” - a contributory factor in low survival.

It is possible that there is a lower occurrence of underlyingrisk factors (or the concomitant presence of protectivefactors) in the populations surveyed. For example, there issome evidence that the occurrence of a specific gene,Apolipoprotein E∈ 4, which is a known risk factor inAlzheimer’s disease, is lower in the Indian population thanelsewhere. This theory seems to be corroborated by thepreliminary results from a genetic study of patients andcomparable subjects without Alzheimer’s disease, whichindicated a lower occurrence of Apolipoprotein E∈ 4 gene inNorth India compared to the west. Additionally, gene-environment interactions have also been postulated asresponsible factors for the lower number of cases in easterncountries.

Risk factors for Alzheimer’s disease

Millions of dollars have been spent worldwide in trying todetermine why certain people get Alzheimer’s disease.However, only two established risk factors, i.e., factors thatincrease a person’s risk of getting Alzheimer’s disease havebeen discovered.

The first identified risk factor is increasing age. As alreadydiscussed, the risk of getting Alzheimer’s disease increasesexponentially with age. But this does not mean that

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What are my risks,Doctor?

There is increasing awarenessof a genetic predisposition toAlzheimer’s disease, i.e.,children of patients are afraidthat they may inherit thedisease. The risk ofinheritance on a genetic basisis extremely small.

everyone living to a certain age or beyond will getAlzheimer’s disease.

The other identified risk factor is a genetic predisposition.

Since Alzheimer’s disease is common among older people,even if many members in a family are affected byAlzheimer’s disease, it does not necessarily mean that thedisease is being transmitted within the family on a purelygenetic basis.

To date, three genetic defects considered as “causativegenes” have been identified in patients of Alzheimer’sdisease. In other words, people inheriting these genes fromtheir parents will get the disease. One defect each issituated on chromosome 14, chromosome 19 and onchromosome 21. There may be other possible geneticdefects, as yet unidentified, in patients of Alzheimer’sdisease. These genetic defects manifest themselves byaggregation of multiple cases of Alzheimer’s disease withinfamilies affecting multiple generations. However, it must beemphasized that the proportion of all cases of Alzheimer’sdisease which are inherited on a genetic basis is less than 1-2% of all known cases of Alzheimer’s disease.

Another mechanism of genetic effect is the inheritance of a“susceptibility gene”. The best known susceptibility geneidentified by medical research is the Apolipoprotein E ∈ 4gene. Inheriting this gene does not mean that the personwill get Alzheimer’s disease; there are numerous patientswho have these genes and do not get Alzheimer’s disease,while there are numerous patients who do not have thesegenes and yet get Alzheimer’s disease. Researchers believethat external factors must interact with this susceptibilitygene to precipitate Alzheimer’s disease. This interaction isreferred to as “gene-environment interaction” by medicalresearchers. The external factors are still unknown.However, since Apolipoprotein E ∈ 4 is known to affectcholesterol metabolism, research in India and Nigeria hassuggested that a high-fat diet, as is typical in westerncountries, may be one of the factors which interacts withApolipoprotein E ∈ 4 gene to increase the risk ofAlzheimer’s disease in the West. This is a subject of intenseresearch and remains to be proved.

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Other factors linked to Alzheimer’s diseaseIncreasingly, reports suggest that the use of certain drugshas been associated with reduction of risk of Alzheimer’sdisease. These include hormones such as the oestrogens inmenopausal women, non-steroidal anti-inflammatory drugs,antioxidants such as vitamin E, vitamin B and lipid-loweringagents.

Many other factors have been implicated such as viralinfection, aluminium poisoning, as also family history ofother genetic defects, and the risk to children born toelderly mothers. However, none of these factors has beenproven to increase the risk of Alzheimer’s disease.

Cost of Alzheimer’s diseaseAlzheimer’s disease is a chronic and progressiveneurodegenerative disorder. It is, therefore, to be expectedthat the cost of caring for these patients is enormous.Keeping in mind the 1991 levels and future generations ofpatients of Alzheimer’s disease, a researcher in the USestimated that in the year 2000, the direct and totalnational cost to the US was approximately US$ 536 billionand US$ 1.75 trillion respectively. These are minimumestimates of the long-term dollar losses to the US economyat 1991 levels caused by Alzheimer’s disease. Similardetailed costing is not available in respect of othercountries.

Besides the monetary cost, many spouses, relatives andfriends take care of people with Alzheimer’s disease. Duringyears of care-giving, families experience emotional, physical,and financial stresses. It is impossible to quantify thissuffering.

At the current stageof knowledge, it isimpossible to predictwho will getAlzheimer’sdisease. It can strikeanyone irrespectiveof gender, caste,creed, culture orsocioeconomicstatus

30

In 2000, the direct and totalnational cost to the USAwas nearly

US$ 536 billion andUS$ 1.75 trillionrespectively.

These are minimumestimates of thelong-term dollarlosses to the USAdue to Alzheimer’sdesease.

31

General principles ofmangement andtreatment

Care-givers and caringhe immediate family members of patients are oftenelderly themselves and have their own medicalproblems. The care-givers should never neglect their

own health as their well-being is vital for appropriate careof the patient.

In the cultural context of the Member Countries of South-East Asia, care of Alzheimer’s disease patients is bestprovided by lay care-givers. These lay care-givers should bespecifically trained in patient care. They must understandwhat Alzheimer’s disease is, and what the patient is capableor incapable of doing. Ideally, continuity of care by the samecare-giver is desirable, but this may not be practical. The“fatigue factor” of care-givers also needs to be taken intoconsideration. Immediate family members should beavailable to extend psychological support and supervision oflay care-givers. It is not necessary for them to do thephysical work themselves.

It has been reported that almost half the patients in a studyundertaken in Mumbai, India, were either single orwidowed. This finding is significant as research workerscame across patients who, having nobody to take care ofthem, were being looked after by neighbours. Clearly, thereis a pressing need for state and community organizations tocreate the infrastructure necessary for the care of suchpersons. Ironically, none of the residential institutions for theelderly were willing to take in persons diagnosed withAlzheimer’s disease. Since the patients are looked after bytheir families until the time of death, there is a tremendousneed for the education of care-givers and other forms ofsupport. Without this, there is a high risk of patient neglect.

Management of patients of Alzheimer’s disease

While there is no specific cure for Alzheimer’s disease, thereis a need to look after the patients as well as their care-givers. Non-pharmacological interventions and the use ofresidential and domestic resources, such as day care, respitecare and nursing home care, may reduce symptoms andsuffering. Another important factor is financial and legalcounselling essentially needed to preserve income and takedecisions affecting the whole family.

It has been saidaboutAlzheimer’sdisease thatalthough thepatient has thedisease, thefamily memberssuffer the most

T

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In the early stages of Alzheimer’s disease, whenintellectual function is reasonably preserved,patients may be encouraged to attend to legalmatters and give consent to the types of treatmentthat they desire. These would form the AdvanceDirectives of the person. An Enduring or DurablePower of Attorney could be prepared in favour of aloved one in the family or some close friend if suchprocedures are established in the country’s legalsystem. A formal will could also be executed beforeit is too late as a result of the patient’s mentalincompetence.

In the later stages of Alzheimer’s disease, thepatient may not be aware of the consequences ofthe illness and it would then be a family decision toget him/her assessed and investigated. Treatmentwould mostly be based on the symptoms observedand arrangements have to be made for the long-term care of the individual by way of providing forcare-givers, especially if there are none in the family.

For the patient, the family is the microcosm of thewhole world. Accepting that a loved one hasAlzheimer’s disease, coming to terms with it is thefirst challenge. The family has to become aware ofthe condition and how it is likely to progress. This iswhere several nongovernmental organizations(NGOs) can step in. In many countries, Alzheimer’sassociations have been set up to offer support andadvice to people and families with Alzheimer’sdisease. They make brochures and pamphletsavailable to anyone interested in knowing details ofthe disease, the problems and hazards. Alzheimer’sassociations are active in India, Sri Lanka andThailand, but perhaps less so in other countries ofthe Sout-East Asia Resion. As there are no socialsecurity provisions, nursing homes or hospitalfacilities available in most of them, the basicresponsibility for management of the patient restswith the family.

Twelve steps for care-givers

1. Although I cannot control thedisease process, I need toremember I can control manyaspects of how it affects myrelative.

2. I need to take care of myself, sothat I can continue doing thethings that are most important.

3. I need to simplify my lifestyle sothat my time and energy areavailable for things that are reallyimportant at this time.

4. I need to cultivate the gift ofallowing others to help mebecause caring for my relative istoo big a job to be done by oneperson.

5. I need to take one day at a timerather than worry about what mayor may not happen in the future.

6. I need to structure my daybecause a consistent schedulemakes life easier for me and myrelative.

7. I need to have a sense of humourbecause laughter helps to putthings in a more positiveperspective.

8. I need to remember that myrelative is not being difficult onpurpose; rather that his behaviourand emotions are distorted by theillness.

9. I need to focus on and enjoy whatmy relative can still do rather thanconstantly lament over what isgone.

10. I need to increasingly dependupon other relationships for loveand support.

11. I need to frequently remind myselfthat I am doing the best that I canat this very moment.

12. I need to draw upon the HigherPower, which I believe is availableto me.

Source: http://my.webmd.com/content/dmk dmk_article_3961786, 10 Jan 2001

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Some Suggestions to Care for a Patient ofAlzheimer’s DiseaseDaily routineAs soon as a diagnosis of Alzheimer’s disease is made, it isessential to develop a daily routine for the patient to bemaintained thereafter. In the early stages of the disease,patients are able to adapt to necessary changes. However,in more advanced stages, only those routines which havebeen previously established are likely to be maintained and itis almost impossible to make patients adapt to any furtherchanges.

In this context, what may appear to be beneficial for thepatient in the family’s opinion may in fact be deleterious,such as changing the layout of the patient’s room, shiftingthe patient’s bedroom or moving the patient to anotherhouse. Such changes create a tremendous amount ofconfusion and anxiety in the patient’s mind.

Maintaining a daily routine includes drawing up a fixedtimetable for the patient for getting up in the morning,toilet, exercise and meals. This gives the patient a sense ofsecurity.

Patients often deteriorate after dark, a phenomenon knownas ‘sundowning’. Additional care must be taken during theevening and at night.

Nutrition and body weightPatients should be provided a well-balanced diet, rich inprotein, high in fibre, with adequate amount of caloriesdepending on height and body weight. The total quantity offood can be calculated by a dietician, if necessary. Manypatients have “sugar craving” i.e. they love to eat sweetfood products. Care should be taken that such patients donot gain weight. The diet should take into account othermedical illnesses which require diet modification, such asdiabetes or high blood pressure.

The safest diet is a semi-solid one with the consistency of apurée (like khichri). Contrary to popular belief, liquids arethe most dangerous type of food, as these can be easilyaspirated into the lungs. For this reason, soup, which isfrequently given to patients, is extremely dangerous.

Maintaining a dailyroutine includesdrawing up a fixedtimetable for thepatient for gettingup in the morning,toilet, exercise andmeals.This gives thepatient a sense ofsecurity

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Personal hygieneMany patients resist taking a bath. Particular care should betaken about the patient’s personal hygiene, includingbrushing of teeth, bathing, keeping the skin clean and dry,particularly in areas prone to perspiration, such as thearmpits and groin. Caustic substances, such as spirit orantiseptic solutions, should not be routinely used on theskin.

Toilet habits and incontinenceToilet habits should be established as soon as possible andmaintained as a rigid routine. This includes conditionedbehaviour such as going for bowel movement immediatelyafter a cup of tea. The patient should be taken to urinate atfixed intervals, depending on the season and amount offluid intake. Prostate trouble, common in elderly men, leadsto discomfort, as it causes urgency and frequency ofurination, particularly in winters. This should be checked bya doctor.

Incontinence is very distressing tothe patient and the family. Onceincontinence sets in, theundergarments, pants of thepatient and the house in generalstart reeking of a foul smell.Toilet habits, established inhealthy years, must bemaintained as long as possible bygently persuading the patient to

go to the toilet and use it. When the first sign ofincontinence appear, doctors should check for anunderlying cause, if any, such as urinary infection or urinarytract damage.

Constipation is a frequent cause of discomfort to thepatient. The quantity of faeces passed each morning shouldbe checked to ensure that the patient is not constipated.Constipation can be avoided by adding fibre supplementsand roughage to the diet on a daily basis.

AccidentsGreat care should be taken to avoid accidents caused bytripping over furniture, falling down the stairs or slipping in

Particular careshould be taken

about the patient’spersonal hygiene,

including brushing ofteeth, bathing,

keeping the skinclean and dry

35

the bathroom. The reasons for falling include loose andpoorly fitting footwear and wrinkled carpets. Ideally,patients should be made to wear soft slip-on shoes withstraps which fit securely. Any floor covering must be firmlysecured.

Most older people have been driving for years, and inmodern cities many people are dependent on their personalcars for transportation. Once early signs of the diseaseappear, patients should be gently persuaded to stop drivingas this can pose a hazard to them and others.

Fluid managementThe patients require as much fluid as normal people and thisdepends on the season. Ideally, sufficient fluid should begiven during the day, and only the minimum essentialamount of fluid (some water with dinner) after 6 p.m. Thelast cup of tea should be given around 5 p.m. After that nobeverages, including tea, coffee, cocoa or any othercaffeine containing drinks, should be given, as all thesepromote urination. Proper fluid management will reducebed-wetting and also reduce the number of times thepatient will need to get up during the night.

Moods and emotionsSome patients of Alzheimer’s disease have abrupt changesin their moods and emotions. These changes can beunpredictable. Mood changes are best controlled bykeeping a calm environment with a fixed daily routine. Thepatients should not be questioned repeatedly or given toomany choices, such as what they want to eat or what theywant to wear. Mood changes are also amenable todistraction, particularly if topics related to the past arediscussed or favourite pieces of music played. For example,if music that reminds the patients of their childhood isplayed, the pleasant associations put them in a nostalgicmood. If mood, behaviour and emotions are distressing tothe patient and family, the doctor may prescribe somemedications to calm the patient.

WanderingPatients of Alzheimer’s disease often lose their geographicorientation and can get lost even in familiar surroundings.They may be found wandering aimlessly either in the

Mood changes arebest controlled bykeeping a calmenvironment witha fixed dailyroutine. Thepatients shouldnot be questionedrepeatedly orgiven too manychoices

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neighbourhood or far away. It is advisable to have someidentification bracelet or card always in their possession.The doors of the house should be securely locked so thatthe patient cannot leave unnoticed. The patient shouldalways be accompanied while going for walks or for simplechores outside the house.

Disturbed sleepSleep disturbances are extremely distressing to the family.Frequently, adult children of patients have to go to work,children need to go to school and the spouse needs sleep atnight. If the patient is restless at night or wanders and talksat night, the entire family is disturbed. Sleep patterns mustbe maintained. Napping during the day should be avoided.Sleeping pills are best avoided as their effect is temporaryand frequently unpredictable in patiants of Alzheimer’sdisease. Causes of discomfort at night, such as pain,uncomfortable temperature or prostate trouble, should bechecked.

Medical treatment

A knowledgeable and understanding general physician whohas the time and willingness to care for patients ofAlzheimer’s disease should be located. Medical treatmentof the disease requires great skill on the part of thephysician as the patient is unable to give any history. It isvery much like practising paediatrics, where informationabout the child’s illness is obtained from the parents.Similarly, the family can provide information about thepatient if appropriate questions are asked of them by thephysician. Unfortunately, such skilled general physicians arehard to find in most countries of the Region.

As a principle, patients of Alzheimer’s disease needmonitoring for coexisting medical disorders such aspneumonia, fractures, stomach upsets and urinaryinfections. Pneumonia occurs from swallowing food orsputum into the lungs, fractures from falls which can bevery minor at times, and stomach and urinary infectionsfrom unhygienic conditions. Adverse effects of drugsleading to mental confusion and drowsiness is another issueof concern when patients are confined to bed in the laterstages of the illness.

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All easily treatable conditions that affect the patient, such asmalaria, toothache, trouble in hearing, cataract, diabetes, highblood pressure and heart problems, must be attended to. Thiswill contribute substantially to the patient’s well-being. Sincepatients cannot complain about their symptoms, care-giversneed to be alert to signs or symptoms which may suggestillness, such as drowsiness, irritability or refusal to eat.

Vitamins B and E supplements may be helpful in maintaininggood health.

What not to give?Drugs of unproven efficacy, such as brain tonics and brainstimulants, must be discouraged. Often, families and evenphysicians use these, believing “they can do no harm”.However, it should be noted that all medications have someside-effects.

There are many medicines of unproven efficacy sold in theSouth-East Asia Region. These include medicines from

alternative systems, such as Ayurveda, Unani andHomoeopathy, which claim to have drugs effectivefor abnormalities of loss of intellect in old age. Proofof efficacy of these systems is, however, notavailable, and more research is needed.

Sedatives, such as the diazepam group ofdrugs, should be avoided as they inducedrowsiness and reduce the already diminished

capabilities of the patient.

Many new drugs are being developed and currentlyundergoing testing. If families wish their patients to

participate in these trials, they should consider the decisioncarefully and then register with a bonafide research centre.

Intellectual capability and behaviourUnfortunately, no cure for Alzheimer’s disease has beenfound. However, these last few years have seen theappearance of cholinesterase inhibitor drugs which alleviatethe clinical features and promote daily activities, at least tosome extent. In Alzheimer’s disease, one of the deficits isthe reduced levels of a chemical in the brain calledacetylcholine. The action of this chemical is terminated by

38

another chemical called acetylcholinesterase. Scientistsreasoned that if acetylcholinesterase could be neutralized,more acetylcholine would be available in the brain, therebyreducing the signs and symptoms of Alzheimer’s disease.Tacrine hydrochloride was the first of these drugs to beapproved, but was not popular due to its adverse effects.Donepezil and rivastigmine soon followed and were foundto be effective. All three drugs are unfortunately expensivefor most patients in the countries of the Region, butrivastigmine seems to hold the advantage, at least in India,as it is about half the price of the others and is readilyavailable, whereas both tacrine and donepezil are not.

Gingkocer biloba is a plant, an extract from which is beingresearched for treating patients with mild and moderatelysevere Alzheimer’s disease, but contradictory results havebeen reported. The basis of its action is not clearly known.Some authorities speak well about the efficacy of selegelinehydrochloride, but additional favourable evidence is needed.

Psychiatric symptomsThese symptoms may co-exist with loss of intellectualfunction and need appropriate treatment. There iscontroversy about the use of the antipsychotics haloperidoland thioridazine, probably because of side-effects. Someclinicians, however, find them useful and comparativelycheap. The new atypical anti-psychotics risperidone,olanzipine and clozapine, are useful with less side-effectsbut very expensive. Trazidone and buspirone are helpful indealing with agitation. Some experts have also reportedthat the anti-epilepsy drugs, carbamazepine and sodiumvalproate, have been found to be useful in controllingabnormal behaviour in Alzheimer’s disease, such as sexualbehaviour, agitation or sleep disturbances. An informed andcompetent psychiatrist can effectively deal with manypsychiatric symptoms in affected individuals.

Nursing careNursing care for patients of Alzheimer’s disease is mostimportant, whether at home, in an acute hospitalenvironment, a day-care centre or in a long-term stayinstitution. Care-givers must be trained to promote thepatient’s remaining intellectual abilities; help them maintaintheir independence in attending to their usual functions and

An informed andcompetent

psychiatrist caneffectively deal with

many psychiatricsymptoms in affected

individuals

39

avoid injuries; and provide for a good quality of life. Trainednurses are, however, scarce in most Asian countries.Encouraging results have been obtained in at least twoIndian centres, where less qualified nursing attendants aretrained in short courses to specifically care for patients ofAlzheimer’s disease and thus provide help to families lookingafter afflicted members. Such programmes are cheaper toinitiate and ease the burden of harried families.

Psychotherapy

Conventional psychotherapy is not offered to patients ofAlzheimer’s disease, as it is neither practical nor effective.The forms of psychotherapy most meaningful in reducingsymptoms of suffering are group and family therapy,supportive counselling, reminiscence, reality and cognitivetherapies. These are options which need to be selected bythe multidisciplinary treating teams, based upon specificsymptoms and the level of intellectual functioning. Themost useful treatment is supportive psychotherapy thatprovides reassurance and guidance. Behaviouralmodification and operant techniques are useful in dealingwith maladaptive and aggressive behaviours. Enhancingsocial life, increasing exercise and leading the person intorewarding, enjoyable experiences will enhance the patient’sdignity. Filial devotion, respect for elders, love for familyand fostering interdependency are accepted and approvedvalues within the cultures of Member Countries of South-East Asia. Even so, we live in troubled times and instancesof ‘‘elder abuse’’, abandonment and neglect do occur,though sporadically. There is a need to preserve the humanand spiritual values of mutual love, respect, kindness,compassion and understanding. While the youngergenerations need to realize this, the elderly also have toappreciate the increasing demands on young people. So,care of the elderly, particularly those with Alzheimer’sdisease, needs to be shared by NGOs as well asgovernmental agencies.

Home care, institutionalization and rehabilitation

Patients afflicted by Alzheimer’s disease are, by and large,cared for by their families at home in most countries of theRegion. This would appear to be the ideal situation where“TLC” (tender loving care) can be provided and most patients

The most usefultreatment issupportivepsychotherapy thatprovidesreassurance andguidance

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Efforts needto be made to

keep thepatient at

home infamiliar

environments

seem to benefit from such an approach. Three years ago, itwas stated that even in the USA, of the three millionindividuals affected by Alzheimer’s disease, one million werelodged in nursing homes and two million were cared for athome. Nevertheless, there are occasions when institutionalfacilities are required for patients whose families are indigent,have emigrated to other parts of the world or have desertedthem.

Home care support, day care and respite care areimmensely useful programmes in reducing the stress andstrain on care-givers. Experience in developed countriessuggests that 95 per cent of the care is provided by thefamily members themselves and among them, the spouse(often elderly, too) and grown-up daughters (alreadyresponsible for earning a livelihood and looking after theirown children) are the ones who give most of the care. Toreduce the ‘burden’ on the care-givers, the policies ofnational, social and health services should support aspectrum of health providers, including physiotherapists,occupational therapists, semi-skilled domestic workers,home health aides and nurses. They could assist patients ofAlzheimer’s disease patient in personal care (bathing,dressing, feeding) or in providing instrumental care(shopping, transportation, household maintenance),manage medical care (injections or medications) and help inoccupational therapy.

Families should be involved in educational programmes toenable them to communicate with patients in simplelanguage as soothing, familiar voices and a gentle touchelicit a better response. Additionally, it is necessary toestablish a physically safe environment, by installingwindow bars, door locks and locks on cooking ranges in thekitchen.

Day careCommunity centres should be established, whereverpossible, to provide daily programmes of structuredactivities which may include games, crafts, music andrecreation. While there may be difficulties in setting upsuch centres, policy-makers in each country should try toprovide the basic minimum facilities. These are cost-effective alternatives to nursing home care which delay

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admission to long-stay institutions.

Respite careCommunity respite care centres, where patients can beadmitted for brief periods, ranging from a few days to a fewweeks, can provide some relief to care-givers and possiblyre-energize them to continue their prolonged caringfunctions.

Nursing homesThere is an urgent need to establish at least a few nursinghomes in the Member Countries of the Region for patientswho are at an advanced stage of Alzheimer’s disease. Atthe same time, delegating care of all patients to special carehomes for patients of Alzheimer’s disease, as is the practicein the West, may not be the optimum solution for countriesin South-East Asia, as the cost is very high and patients arealienated from their own homes and families.

In our Region Alzheimer’sdesease patients are best

cared for at home. Nursinghomes may be needed for

some, especially in advancedstages of the desease.

Community centresshould beestablished,wherever possible,to provide dailyprogrammes ofstructuredactivities whichmay includegames, crafts,music andrecreation

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he lives of most people are closely bound with the lawand old people are no exception. The aged may needto secure help from relatives and friends to

attend to business matters or even in simple activities ofdaily living. This is easy if one has the intellectual ability todo it. Otherwise, someone can be requested or appointedto do whatever is necessary.

Appointment and power of attorney

‘Appointment’ is a legal procedure, whereby an individualcan formulate or author a ‘‘power of attorney’’ givingspecific instructions to another person who can thenexercise the ‘‘power of attorney’’. Lawyers may beapproached for help in this regard. But, what if old peopledo not know or remember what money or property theyhave and cannot decide what to do with it?

First, a determination must be made whether the old personis genuinely unaware of the situation due to a severememory deficit. Second, does the individual know who arethe rightful heirs of his/her property or money? Third, is theperson capable of deciding on a course of action andunderstanding the implications? In other words, is theindividual ‘competent’?

Competency and decision-making capability

Competence is a legal concept and every person, exceptchildren and those unconscious, is presumed to becompetent unless determined otherwise in a legal process.The determination of competence is necessary, especiallyfor the aged with impaired mentation, in dealing with issuesof medical, legal, economic and social importance.

If the person is judged to be competent, he/she is legallycapable of making a will and a “power of attorney” can berightly exercised through the appointed person. However,the power of attorney is considered invalid if the individual isdetermined to be incompetent. This is, in a sense, aprotective measure for the intellectually impaired person.

While ‘competence’ is a legal concept, the ability to makedecisions is based on a medical assessment. This is adetermination of “decision-making capacity”. Patients in the

Legal issues T

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early stages of Alzheimer’s disease retain some decision-making capacity, albeit limited.

A seminar held three years ago in India and attended byjurists, doctors and social workers recommended that:

(1) competence must be determined by a panel ofexperts which includes a neurologist, a psychiatristand a psychologist after the performance of at leasttwo examinations at appropriate intervals, thefindings of which must be recorded. Thereafter, thedegree of competence must be certified by any of themedical experts on the panel;

(2) the diagnosis of Alzheimer’s disease must beaccompanied by a determination of the stage of thedisorder. This staging must include the doctor’sestimate of the individual’s decision-making capacityregarding the making of a will, consent to treatmentand participation in research.

Last will and testament

The simplest form of a will is: “I, X, gift all my property andbelongings to Y”. However, most wills are more complex.There may be cases in which the relatives of the mentallyincompetent or vulnerable individual, may take unfairadvantage of the patient’s condition. It may also transpirethat the will of a healthy individual is contested later incourt on the basis of a state of incompetence whenexecuting the will. In this regard, the following isnoteworthy:

It may be advantageous for an individual and his orher family to arrange for the evaluation of thedecision-making capacity of the executor of the willimmediately prior to its execution, especially if there isroom for doubt, preferably by a team consisting of aneurologist, a psychiatrist and a psychologist. In thiscontext, it must be emphasized that a will is deemedto be valid if the executor is of a sound and disposingmind. He/she must know:

the extent of his or her properties;the rightful heirs;knowledge of how the property is to be disposed,andthe implications of such a disposition.

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The executor of the will must also be able to recall thedetails of such a procedure for a reasonable period of time.For example, the decision-making capacity would seemdubious if the person concerned could not remember thedetails from one day or week to another.

The medical practitioner or practitioners would bewell advised to keep detailed records of a person’scondition in the event that the will is contested afterdeath, and if a posthumous evaluation of competencebecomes necessary. With the currently availableadvanced technology, some authorities and researchworkers in India use audio and video-recordingtechniques as methods of documentation whenobtaining informed consent and directives from evenilliterate citizens. Such techniques have some meritand are worthy of consideration in appropriatecircumstances.

Proxy decision-making

The ethical principles of personal or individual autonomyand informed consent are well recognized internationally.

As an extension of these principles, a personmay indicate, when competent, the formof medical management or treatment that heor she would desire at a later stage whenincompetent to make decisions. Such wishesexpressed by patients are generally respectedand effected by the next-of-kin or relatives. Atpresent, such expressed wishes are formalizedin North America, Europe and other countriesin the form of Advance Directives or LivingWills and exercised through proxy decision-makers who hold a Durable Power of

Attorney or Enduring Power of Attorney which specifies thedecisions to be made on behalf of the patient and thenature of such decisions.

When an individual is severely impaired intellectually, it isnevertheless mandatory to respect the patient’s wishesexpressed at the earlier stage of mental competence. Thisnecessitates obtaining informed consent from the next-of-kin or proxy decision-makers prior to initiating medical or

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treatment procedures. The view has been stronglyexpressed that Advance Directives or Living Wills made byindividuals have to be respected, on condition that they (1)do not require the direct termination of life which iscontrary to law; and (2), are not legally binding on medicaland nursing staff, or health institutions, in the event thatthe directives are deemed countertherapeutic orobjectionable in conscience on professional, ethical ormoral grounds.

In this context, the following would help:

While fully competent, individuals should be enabledto nominate and authorize, in advance, proxydecision-makers who will act on their behalf whentheir decision-making capacity may be impaired. Thisauthorization must specify the areas (health care,personal affairs, estate) within which proxy decisionscan be taken;In the absence of such an authorization, proxydecisions can be sought from other members of theindividual’s family in a hierarchical manner. First, fromthe spouse, followed by the eldest child, and so on. Inthe absence of next-of-kin, or when the individual’snext-of-kin are themselves deemed to beincompetent, or when the individual does not wantdecisions to be made by the next-of-kin, anappropriate court may appoint a proxy or proxies tomake decisions in the patient’s best interest, andProvision should be made for the proxy’s decisions tobe made accountable periodically at intervals to acourt having jurisdiction.

Some of these points may require legislative support toclarify or amplify the existing legal framework. Legislativeaction on the subject becomes necessary in countries likeIndia because the law does not contain any provision for aperson to delegate any authority to a proxy decision-makeron his or her behalf in personal matters affecting the body.In substance, the person concerned would be creating analter ego (another self of himself or herself) to function onhis/her behalf. Or, to put it in different words, he or shewould be transferring to another person his or her ownfreedom of granting or refusing consent to an invasion ofhis or her bodily privacy, integrity or personality. In India, it

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was thought that such a vital modification concerned withthe capacity to consent cannot be effected without properlydrafted legislation and accompanied by appropriatesafeguards. Such legislation would expand the role of a“power of attorney”.

Informed consent for treatment and researchIt is mandatory for a treating physician to obtain informedconsent from a patient before initiating medicalinvestigation or treatment. Informed consent, by definition,requires it to be competent, voluntary, informed andcomprehensible. These requirements may not necessarily befulfilled when an individual is intellectually impaired, and soit would be safe to assume that the person is unable to givesuch consent. The topic of informed consent has beendiscussed in India, especially vis-à-vis rural areas, where thecultural traditions are different and illiteracy is rampant.Under these circumstances, there should not be aninsistence on the adoption of western methods of obtaininginformed written and signed consent; rather suitable

Dhruv Suri

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adaptations should be made.To resolve this, it was recommended at a seminar in Indiaattended by jurists, doctors and social workers, that:

(1) if a physician has any doubts regarding a patient’sability to give consent, a full assessment of decision-making capacity should be sought. In the event thatthe patient is declared incapable, the consent of theproxy decision-maker should be sought. In such asituation, the level of decision-making capacityrequired depends on the type of medical proceduresor research proposed. When the risk of disability tothe subject of the treatment/procedures is great, itwould require a demonstrably higher degree ofdecision-making ability. This is particularly applicableto those who agree to participate in researchactivities, and especially in non-therapeutic ones;

(2) if the evaluation of decision-making capacity indicatesthat a patient is incapable of making appropriatedecisions in a particular context, any consentobtained from such a subject is invalid;

(3) in the context of research among the possiblyintellectually impaired, there must be an assessmentof the decision-making capacity of each participatingindividual;

(4) all subjects of research as well as their proxy decision-makers must be fully informed about the nature ofthe research and, in particular, of its therapeutic ornon-therapeutic character, the risks involved, as wellas the direct benefits or disadvantages, if any;

(5) patients or their proxy decision-makers invited toparticipate in research, should be clearly advised thattheir non-participation in the research activity will notdisqualify them from continuing medical or nursingcare;

(6) research workers should be particularly cautiousabout avoiding the participation of mentallyincompetent individuals in hazardous or life-threatening procedures, diagnostic or therapeutic,even if their proxy decision-makers provide consent;

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(7) psychological testing poses the problem of informedconsent. Most of the participants were of the opinionthat the provision of a response by an individual tothe test items presented by a psychologist, implies theexistence of assumed consent between the twoparties, and

(8) doctors and research workers in rural areas, and thosedealing with the illiterate in India, were encouraged torespect the personal autonomy, cultural traditions andwishes of their subjects by adapting methods ofobtaining informed consent through village leaders,heads of families and other respected persons. Theywere also advised not to insist on obtaining thesignatures or thumb impressions of those to betreated or included in research projects but rather toadopt other methods, for example, recording that therelevant information had been provided andunderstood prior to commencement of treatment orresearch.

The reader will readily appreciate why it is so imperative todetermine in detail the state of mind of the aged. Somevital questions that need to be asked are:

Is the seemingly intellectually impaired person in factcompetent, or incompetent?

Is the competence retained for certain issues, such asdeciding on acceptable medical tests or treatment,but not retained for the purpose of making a will?

In the early stages of Alzheimer’s disease, an individual mayretain enough mental function to be legally permitted tomake a will. It becomes important for the physician orhealth care team to advise the family and the patient in asensitive manner to take timely action for drawing up a willbefore the progression of intellectual impairment to such adegree that it is too late. Likewise, the old may be tactfullyinformed and their preferences about their options soughtregarding the various forms of medical investigations andtreatment that they may be subjected to in varioussituations.

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What the patients can do for themselvesAt the present state of understanding about the causes ofAlzheimer’s disease, there is nothing anyone can do toguarantee that he or she or their loved ones will not getAlzheimer’s disease. As a consequence, various hypotheseshave been advanced with regard to its prevention. Theabsence of proof does not mean these hypotheses andclinical impressions have to be abandoned. Rather, theyhave to be borne in mind and accepted or rejected whenevidence suggests so. Time will tell fact from fiction.

At the moment, every one should practise the well-knownmethods of health protection and promotion, such aseating right, exercising and abstaining from tobacco andalcohol. Although not directly linked to the prevention ofAlzheimer’s disease, good health in youth is a prerequisiteto good health in old age.

Good health also requires paying timely attention to all easilytreatable conditions which are known to adversely affecthealth, such as high blood pressure, obesity and diabetes.Control of these factors would be a protective measure againstheart attacks and strokes and may also safeguard againstAlzheimer’s disease, although this remains conjectural.

There is an increasing awareness about the harmful effectsof stress and mental tension on the human body.Researchers hope to learn much more in this century about“the mind” since this is believed to mediate emotions andstress. The age-old tradition of meditation is well known tocontrol stress, so its practice is certainly desirable.

What the family can doFamily members should be aware of early warning signswhich may suggest that one of the older members may beon the verge of developing Alzheimer’s disease. Earlydiagnosis and early intervention can be beneficial both tothe patient and the family.

As the disease progresses, the family remains the main pillarof support for the patient. The traditions of eastern cultureand the lack of special care units make it clear that thepatient is best cared for within the family. However, this

What can be done?

Every oneshould practise

methods ofhealth

protectionwhich include

eating right,exercising and

abstaining fromtobacco and

alcohol

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imposes an immense burden on the family for whichsupport should be sought. Families and others will benefitby joining self-help groups or support groups, as these arewell known to provide social and psychological support tomembers. If there is no support group in the area, familiesmay wish to start a new group.

What the community can do

Families with a member suffering from Alzheimer’s diseasecarry a huge burden of caring and need the support ofneighbours and the community. Neighbours can alsoprovide respite care to the tired care-giver.

Special training programmes for lay care-givers can beorganized in the community. In addition, awarenesscampaigns can be launched by community activists toeducate those who may not be aware of this dreadfuldisease and its early manifestation.

What NGOs can do:Alzheimer’s Disease InternationalAlzheimer’s Disease International (ADI) is an umbrellaorganization of 57 national Alzheimer’s associationsthroughout the world, and is in official relationship with theWorld Health Organization. Each national Alzheimer’sassociation, which supports people with this disease andtheir families, is an ADI member. ADI’s key aim is to buildand strengthen Alzheimer’s associations worldwide so thatthey are better able to meet the needs of people withAlzheimer’s disease and their care-givers.

Alzheimer’s associations around the world provide practicaland emotional help and information to families, health careprofessionals and the community; advocacy efforts togovernments; training family and professional care-giversand provide direct services such as day and respite care.

ADI is attempting to reach out to patients and care-giversworldwide by encouraging the formation of newAlzheimer’s associations. By coming together, formingpartnerships and sharing expertise and knowledge on aglobal basis, Alzheimer’s associations are better able totackle the challenges of this disease.

Alzheimer’s DiseaseInternational (ADI) can bereached at their website:http://www.alz.co.ukand they can shareinformation and experiencesand learn from one another

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Above all, remember,

there is always

hopeon the horizon

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