Elegy for Iris
By John Bayley (Picador USA, 1999)
275 pages

Iris and her Friends-A Memoir of Memory and Desire
By John Bayley (Norton, 2000)
275 pages

Reviewed by: Dr. Michael J. Taylor

The staggeringly high incidence of Alzheimer's disease (AD)--an estimated 5-10% amongst the over 65 age group--is well known to clinicians working within all fields of adult medicine. The incidence of Alzheimer's and other forms of dementia, in those over 85, is estimated to be as high as 47%. With shifting demographics creating a rapidly expanding cohort of patients over 65 years of age, the absolute numbers of those suffering from AD will make the collective tragedy of this devastating disease more apparent. In dealing with the myriad medical, behavioural and psychosocial problems stemming from the increase in the number of Alzheimer's patients, it may become increasingly difficult for clinicians, particularly those working in long-term care facilities, to recognize the devastating impact that dementia can have on both patients and their loved ones. It may also become more difficult to stay aware of the fact that the patient's individuality is lost within the common symptoms of advanced dementia. In two recent books about his wife, Iris Murdoch, also an Alzheimer's disease patient, the writer and literary critic John Bayley elegantly describes the full impact of this devastating disease; he manages to remind the reader that love and devotion can be unfailingly strong even in the face of adversity. The book also serves as a powerful reminder of the individual tragedy of AD.

Born in Dublin in 1919, Iris Murdoch began her career as a fellow and tutor in Philosophy at Oxford. She went on to obtain international acclaim as a writer of philosophy, and of plays and works of fiction that included The Sea, The Sea, which won the prestigious Booker Prize for literature in 1978. The first sign of Iris' Alzheimer's disease appeared in 1994 while she was at a literary conference at the University of the Negev in Israel. This episode is painfully recalled in John Bayley's first novel dealing with his wife's disease, Elegy for Iris. Published in 1999, the New York Times' best-selling Elegy for Iris met with a great deal of both critical and popular success, and justifiably so. The book is a moving and honest portrayal of Bayley's daily struggle in caring for his wife, accompanied by touching accounts of the couple's courtship, marriage, and early life together. Throughout the book, Bayley effectively juxtaposes episodes from his present with episodes from the past. Perhaps most memorable is the account of Bayley swimming with his wife in their earlier days in a small nook that was part of a river near their home. The reader is presented with a tranquil scene of two young lovers finding refreshment in a quietly flowing river surrounded by lush vegetation on a hot summer day. Abruptly, this scene shifts to a more current one that is almost pitiable but ultimately rather moving. This time we find Bayley trying to undress his wife, who is now in an advanced stage of her disease, and coaxing her into the river so that they may continue the ritual swim that had, in the past, been so important to them.

Elegy for Iris is so full of frank and honest observations about Iris Murdoch's disease that it will sound familiar to anyone having had contact with Alzheimer's patients. Surprisingly, the tone throughout much of the book is rather positive, although there is an underlying melancholy. This melancholy is apparent as Bayley discusses his life with Iris prior to the onset of her disease, meditates on the complexities of their relationship, and describes the dutiful, at times seemingly heroic, way in which he cares for his ailing wife. It is a tone that changes rather noticeably in Bayley's follow-up to Elegy for Iris titled Iris and her Friends. Those expecting more of the same as in Elegy for Iris will be greatly surprised by this much darker book, that continues where Elegy for Iris left off, with an account of Bayley's struggle to care for his wife as her disease progresses. Though Bayley's technique of changing rapidly between past and present remains easily recognizable, in Iris and her Friends, Bayley has lost the gentle and almost passive tone he previously used when describing the experience of caring for his wife. In place of this tone, the voice of Iris and her Friends expresses Bayley's frustration and despair in dealing with the daily struggles of being a caregiver. It is a voice that is at times shocking. For instance, when Bayley loses his patience with his now silent wife while having difficulty dressing her, he finds himself suppressing a desire to actually strike her, staring at her with an ironic smile and saying "do you know how much I hate you?"

The "friends" of the title is not a reference to Iris' companions but is used by Bayley as a somewhat elusive metaphor to describe the silence and passivity that "visit" his wife as her disease progresses. It is these "visitations" that allow Bayley to explore his own memories as his wife's memory continues to decline. It is in these recollections, full of engaging anecdotes, that the reader may find respite from the, often upsetting, accounts of Bayley's situation. It soon becomes apparent that living within his own memories is Bayley's method of coping with the tragedy surrounding him. What the reader of both books cannot fail to notice is that while in Elegy for Iris Bayley's reminiscences were concerned with his life with Iris, in Iris and her Friends, Iris is completely absent from any account of his early life. It is as though Bayley is suggesting that he himself must forget his wife in order to escape from the pain of his current situation. However as the book draws to a close, Bayley's love and dependence on his wife are clearly reaffirmed through a touching description of his fear and anxiety of losing Iris as her condition deteriorates to the point where she must be transferred to a nursing home. What follows is a heart-breaking but beautifully rendered account of Iris' final days.

Despite their short length, neither Elegy for Iris nor Iris and her Friends make for light reading. In both books, Bayley brilliantly uses his skills as a writer to lead the reader on an emotional journey, throughout which the most intimate and personal details of his life before and after his marriage to Iris, and during the long course of her illness, are divulged in a fluid and literary style. Of course it is impossible for Iris Murdoch not to lose some measure of dignity, given that both books focus so heavily on her in an advanced stage of dementia. This is particularly true of the latter of the two novels. It is in the first novel that Bayley's balanced juxtaposition of the past with the present serves to remind the reader that his ailing wife was a dynamic, vibrant and intellectual woman before the onset of her disease.

Though intended for a general audience, caregivers of patients with Alzheimer's disease may find solace in Bayley's honest portrayal of his own experiences. In the end, Bayley has provided an unforgettable account of the full impact of Alzheimer's disease, and a reminder to anyone encountering patients with this disease that behind what Bayley refers to as the "mask" of Alzheimer's disease are unique individuals who lived, loved and were loved in return. Certainly, no one reading Bayley's two courageous accounts of his own experiences, can fail to notice that the tragedy of Alzheimer's disease affects both patients and their loved ones. Indeed, both books may offer a great deal to clinicians who, in encountering this disease on a daily basis, may forget that Alzheimer's is a tragedy which is unique to every individual afflicted with it.

Functional Tests Help Assess Treatment Efficacy in Dementia

Karl Farcnik, MD, FRCP(C)
Michelle Persyko, PhD

Functional assessments have been a very important component in the development of treatments for dementia, especially Alzheimer's disease (AD). This is due on the one hand to the complexity of the disease process, and on the other to the limited efficacy of current treatments. AD, for example, is associated with symptomatology occurring in three different domains: cognition, activities of daily living (ADL) and behaviour. Cognitive deterioration is of greatest significance in the earlier stages of the disease process. ADL are affected throughout the disease process but are of greatest signifi-cance during the mild to moderate stages of the disease. Behavioural problems, by contrast, tend to be much more significant as the severity of the disease increases. The challenge has been to develop instruments which measure the effectiveness of treatment in all three domains. Initially, the testing focused only on cognition and global functioning based on regulatory requirements. However, as treatment efficacy with drugs such as acetylcholinesterase inhibitors was noted, it became apparent that treatment had an impact on other domains. In fact, many of these instruments have been developed in the past few years.

The statistics are staggering! Twelve million people worldwide currently suffer from Alzheimer's disease (AD), and by 2025 this number could surpass 22 million. In Canada, an estimated 300,000 people have AD, and by 2031 this number is expected to reach 750,000. Anyone with an interest in the field, or with an afflicted elderly relative, knows the heartbreaking reality: To date, most of the progress made in Alzheimer's research has been limited to the improvement of cognition in Alzheimer's patients. Researchers have met with limited success in their attempts to delay the progression of the disease or to find an actual cure. It is a relative certainty that progress in this field will only come through the collaborative efforts of clinicians, researchers and caregivers, from different institutions and different nations, meeting to pursue a common goal--to find a cure. In what is an unprecedented event in the history of this disease, leading Alzheimer's researchers from around the globe gathered in Washington D.C. in July to share their knowledge and to identify strategies that will lead to the elimination of AD. The First World Congress, a collaborative undertaking, was hosted by the Alzheimer's Association (USA), Alzheimer's Disease International and the Alzheimer society of Canada.

The news from Washington is heartening. It appears that very significant progress is being made in the search for a cure, as well as in the improvement of cognition in AD patients, in the delaying of the onset of the disease, in the diagnosis of AD, and in the care of patients with dementia. Possibly the most momentous data presented were from the phase 1 trial of a potential Alzheimer's vaccine. Researchers from Elan pharmaceuticals have discovered that injecting a synthetic form of the b-amyloid protein (the protein that has long been identified as the primary component of amyloid plaques) into patients with AD leads to an immune response that increases the clearance of b-amyloid plaques from the brain. In total, about 100 patients in the US and the UK will be involved in the phase 1 clinical trials. As yet, no obvious safety concerns have been identified.

Another therapy that shows promise is treatment with the drug memantine, which works by affecting the NMDA receptor. Assessments of cognitive function found that patients treated with memantine performed significantly better than a placebo group in terms of cognition and daily life activities.

Other results presented in the pivotal research section included data on dietary modifications that may help protect against Alzheimer's. Observational studies suggest that eating large amounts of vegetables, vitamin E and vitamin C is associated with lower risks for AD and other dementias. Researchers have also found that people with the apolipoprotein E (ApoE) e4 allele may decrease their risk of developing AD by consuming a lower fat diet.

Data from studies in Denmark may reassure those people with failing memories. A group of Danish scientists have focused their research on establishing a distinction between failing memory and signs of Alzheimer's disease or other dementias. Examination of 785 patients with memory problems revealed that only 43% actually had Alzheimer's or another form of dementia, while 28% actually had no serious cognitive deficit or amnesia. Overall, they found that 35% of the patients had a potentially treatable concomitant condition that influenced cognitive function, including depression, high blood pressure, thyroid disease, and hydrocephalus and alcohol dependence syndrome.

A major focus of the conference was the initiation of a dialogue between researcher s and primary care physicians and caregivers. These seminars educated physicians about the use of practical and controversial diagnostic tools, options and trends in drug therapy, and nonpharmacological treatments for patients with dementia. The creative care section covered a wide variety of topics, which ranged from discussions of entertainment activities for patients with dementia to developing care concepts that integrate nursing and architectural principles. Discussions of this nature facilitate patient care and recognize the human aspect of treating patients with AD. For more on the World Alzheimer Congress please see next month's issue of Geriatrics & Aging or visit our website at www.geriatricsandaging.com.

Down's Syndrome, a potential model for the pathogenesis of Alzheimer's disease

Nariman Malik, BSc

Alzheimer's disease (AD) is the most common cause of dementia in the elderly.¹ It affects more than 5% of all people age 65 and over and about 25% of those aged 85 and over.^2,3 This devastating disease is characterized by a progressive loss of cognitive abilities, usually beginning with short-term memory difficulties and progressing to include language, visuospatial and executive dysfunction.¹ Mean survival time following a diagnosis of Alzheimer's disease is about 8 years and death usually occurs as a result of intercurrent disease.⁴ In 1991, the Canadian Study of Health and Aging estimated that over 160,000 Canadians met the criteria for Alzheimer's disease.⁵ If the current trends continue, by the year 2031 the number of cases are predicted to triple while the population will have only increased by a factor of 1.4.⁵

The main risk factors for developing AD are advancing age and family history. The disorder can be classified as familial or sporadic. Familial cases are usually early-onset (onset before age 65), while sporadic cases are usually late-onset (onset after 65). The majority of cases of AD are sporadic. Individuals with a first degree relative with sporadic AD, are at twice higher risk of developing the condition.

Dr. Mary Tierney
Senior Scientist and Director of
Geriatric Research
Sunnybrook and Women's College Health Sciences Centre

Alzheimer's disease (AD) is the most common cause of dementia, accounting for more than 64% of dementia cases in Canada. It is a progressive neurodegenerative disorder that currently afflicts more than 161,000 Canadians and is expected to affect approximately 800,000 by the year 2030.

A recent accumulation of laboratory, epidemiological and small clinical-trial studies suggest that estradiol, the principal gonadal hormone in females, may delay or prevent the onset of AD, and may also improve cognition in women with the disease. These observations raise the possibility that women taking postmenopausal hormone replacement thera-py (HRT) may be at significantly lower risk for AD. Thus, there is a compelling and urgent need for randomized, placebo-controlled clinical trials to determine whether estrogen replacement can prevent or delay the course of AD. This urgency is made greater by recent studies that have identified cognitive tests and genetic risk factors that enable earlier diagnosis of AD and enable the identification of those most at risk for the disease. For example, our previous research has shown that two neuropsychological tests and two demographic covariates (referred to below as the Alzheimer predictive index) predicted, over a two-year period, with 80% accuracy, the onset of AD in memory-impaired individuals without dementia.

At a recent conference on Psychogeriatric medicine at the Baycrest Centre for Geriatric Care, Dr. Carole Cohen (Sunnybrook and Women's College Hospital) discussed 'Ethical issues in the assessment and management of Alzheimer Disease'. One of the major difficulties physicians may face when dealing with a patient with Alzheimer Disease (AD), is who makes decisions for the patient in the absence of a family member or appointed caregiver. Dr. Cohen recommended that physicians in this position contact the Attorney General of Ontario and specifically the Office of the Public Guardian and Trustee. The mandate of this office is to protect the interests of 'incapable' people by making important decisions for them when there is no one else who is willing or able to do so. The staff can make decisions about personal care in areas such as shelter, safety, hygiene, clothing, and nutrition and they can also decide on medical treatment. In cases where a patient may have relatives who are unaware of their plight, the office plays an active role in trying to contact relatives to enable them to make decisions for their loved ones. They can also help family obtain the legal authority to make financial decisions on behalf of the patient. The office can also help investigate allegations of abuse or neglect of an incapable person. For more information on services for mentally incapable people call 1-800-366-0335 or visit their web site at www.attorneygeneral.jus.gov.on.ca.

Guardianship Investigations Tel: (416) 327-6348 Fax: (416) 314-2642
Treatment Decisions Tel: (416) 314-2788 Fax: (416) 314-2637
Client Services Tel: (416) 314-2800

Reviewing Diagnostic Criteria for Differentiating FTLD from AD

Nadège Chéry, PhD

Frontotemporal lobar dementia (FTLD) is the third most common form of cortical dementia following Alzheimer's disease (AD) and Dementia with Lewy Bodies. It is often mistaken for AD, yet it presents strikingly different clinical and histopathological features and therefore, it must be managed distinctly. Discovered over a century ago by Arnold Pick¹, it was only recently identified as a specific type of degenerative illness.

FTLD is comprised of three prototypical clinical syndromes: Frontotemporal dementia (FTD), Primary Progressive Aphasia (PPA), and semantic dementia (SD).³ PPA is a disorder of expressive language, which manifests itself as the laboured production of speech, speech containing phonological and grammatical errors, and difficulties in word retrieval. SD is characterized by a severe impairment in naming and word comprehension during fluent, effortless grammatical speech output, with relative preservation of the ability to repeat, read aloud and write. FTD, on the other hand, is considered to be the most common clinical manifestation of FTLD.^2,3 This article will focus on FTD, and compare it with AD.

FTD affects men as frequently as it affects women.¹ It has a predominantly early age of onset, and most individuals affected are between 50-60 years of age.

Philip Dopp, BSc

Dementia manifests itself in many ways within elderly populations. Given that symptoms associated with dementia, such as psychosis or behavioral disturbances, are common reasons for nursing home placement, it is not surprising that between 40% and 90% of residents of such institutions have some degree of dementia.^1,2 In recent years, atypical antipsychotics such as risperidone and olanzapine have been used with increasing frequency to deal with these distressing symptoms of dementia. Because of their favorable side effect profile, when compared to typical antipsychotics, and because studies have shown them to have equal, if not greater efficacy than typical antipsychotics, many geriatric psychiatrists recommend atypical antipsychotics as first-line treatment for psychosis and aggression in dementia.

The behavioral problems associated with dementia can be categorized as either non-aggressive or aggressive. Nonaggressive behavior includes wandering, pacing, bossiness, complaining and attention-seeking acts, while aggressive behavior includes hitting, pushing, scratching, biting, kicking and screaming. Management of these problems depends upon both the severity of the problem and the potential for the patient to harm themselves or others. In all cases, nonpharmacologic interventions, such as distracting the patient from the problem behavior, creating a structured environment for the patient and developing support groups for the caregiver, are appropriate.

David M. Kaplan, MScHA
Joint Center for Bioethics
Faculty of Medicine, University of Toronto

Alzheimer's disease (AD), a disorder characterized by a progressive loss of cognitive function, affects approximately five and a half million North Americans.¹ Advances in the Human Genome project and genetic testing over the last decade have allowed clinicians and researchers to assess an individual's genetic risk of developing AD.² This paper examines the practical and ethical implications of using genetic testing in order to screen for an individual's risk of developing AD. A useful screening test should be able to exclude unaffected individuals--that is, it should have a high sensitivity and be able to identify affected individuals. It should also have a high specificity. Traditionally screening tests have only been applied for diseases for which preventive measures were available.

Is Depression an Early Sign of Alzheimer's Disease?

In a 3-year study that followed 222 people aged 74 and older, Dr. Lars Backman and colleagues found that those who later developed Alzheimer's Disease were 50% more likely than other participants to have suffered symptoms of depression at the start of the investigation.

The study looked at two types of depression: "mood-related" symptoms such as unhappiness, guilt, and thoughts of death; and "motivated-related" symptoms which result in lack of energy and interest, and in concentration problems. The result showed that at the start of the study participants who would later develop Alzheimer's commonly had motivational-related symptoms. The researchers theorize that the symptoms may be related to changes in brain regions involved in regulating attention and energy levels.

The symptoms of depression that emerge in the study are common among the elderly and may easily be "over-looked" as early signs of Alzheimer's Disease.

Source: Neurology 1999;53:1996-2002.