Controversies and Difficulties in Making Long-Term Care Predictions of Client Needs

Madhuri Reddy , MD, FRCPC,
Associate Editor, Geriatrics & Aging.

As the Canadian population ages, policy makers must begin to make predictions regarding the needs of long-term care (LTC) clients. This is confounded by a number of variables that make long-term predictions difficult. In the following article, different schools of thought and theories on the variables that will influence the needs of the LTC sector in the next several decades are reviewed.

Numbers of Clients that Require LTC
The Expansion of Morbidity Hypothesis
The expansion of morbidity hypothesis suggests that the numbers of clients requiring institutional LTC will increase, leading to an increased burden of disability and dependency.^1,2 With advances in medical, social and economic conditions, active-life expectancy has increased³ and the age of onset of terminal dependency has been postponed; however, some believe that the duration of terminal dependency will eventually increase.¹ There has been an increase in both the hospital length-of-stay of elderly clients and the proportion of the lifespan spent in long-term hospital care. The number of very old people, including centenarians, has also steadily risen. There is evidence that both disability and dependency have also increased. In Canada, up to 80% of the gain in life expectancy consists of increased years of disability.

Caring for the Caregiver

Currently, more than one in 10 Canadians is over the age of 65. By the year 2021, it is estimated that this number will increase to almost 18% of the population or 6.7 million people. Approximately 80% of eldercare is provided by family members. The Berger Monitor has estimated that there are 4.5 million caregivers in Canada who spend about $100 million a week--$5 billion a year--on the incidental expenses of caregiving.1 This doesn't include the inevitable emotional stresses of caregiving, and their attendant physical side effects.

Enter Karen Henderson, a woman who spent 14 years caring for an elderly father, frustrated and overwhelmed by the lack of available resources for caregivers. In her own words "If I had known back in 1986 what I know now about caregiving, I could have saved myself considerable worry, frustration, anger, illness and guilt…I know I would have been a healthier, more effective caregiver." Karen's father passed away in April of 2000, but not before his experience had left an indelible impression and formed a sustaining passion.

Karen, who has a background in sales, marketing and adult education, took her experience and launched The Caregiver Network, a combination information resource, service directory and support network. CNI, the first program of its kind in Canada, was initially launched in 1996 as a website, and soon began registering hits from all over the world. Recently, Karen has launched a second website, How to Care.

The Caregiver Network site provides a comprehensive list of support groups, nursing homes, federal and provincial agencies and a medium for caregivers to express their thoughts and feelings. There are sections detailing the importance of advance directives, power of attorney and substitute decision-making, along with contact numbers for the Public Guardian and Trustee's office. The site also has contacts and information on geriatric day care programs, support for caregivers and forums on a variety of diseases of the elderly. One of the most compelling resources on the site is Karen's personal diary, On my mind, which details her thoughts and feelings during the period of care for her father, who suffered from dementia and died in a long-term care facility.

The second website, How to care, provides more detailed health and support information on a variety of issues that a caregiver may face. According to the site, "How to Care is here to help you manage the realities of caring for others and yourself by supplying practical, portable information on the issues we know you will confront." The topics are divided into sections on 'Day to Day,' 'Conditions/Diseases/Situations,' 'Help/Support,' 'Practical Solutions,' and 'Communication.' Each section is further subdivided into topics such as 'Incontinence,' with a brief glossary of terms, definition and relevant information for the caregiver on managing some of these issues.

The services provided by the Caregiver Network and How to Care, go beyond the web resources. Karen also publishes a quarterly newsletter The Caregiver, and was involved in the production of a television series, 'Caregiving with June Callwood,' a 13-part TV/video series that tackled caregiver issues. She produces a Personal Care binder, designed to help caregivers keep track of critical personal and medical information needed when coordinating care for a loved one at home. Karen is also available to give seminars to both family and professional caregivers.

I invite you to visit the sites for the Caregiver Network and How to Care at www.caregiver.on.ca and at www.howtocare.com.

Sources

1. September 1999 Berger Population Health Monitor.

Finder’s Fees and Therapeutic Obligations

Paul B. Miller, BA, MA, MPhil, is a JD/PhD candidate in law and philosophy at the University of Toronto, and a Junior Fellow of Massey College in Toronto, Toronto, ON.
Trudo Lemmens, Lic Iur, LLM, is Assistant Professor in the Faculty of Law at the University of Toronto, Toronto, ON.

Lucrative Research
A pharmaceutical company invites Dr. B, a primary care physician, to assist with a placebo-controlled randomized clinical trial (RCT) of a new cholinesterase inhibitor for the treatment of dementia. The study will include patients who have been diagnosed with early-onset dementia. Dr B will receive $3,500 for each patient who ultimately agrees to enrol in the study. In the protocol, this fee is explained as payment of the administrative costs associated with Dr B's participation in the trial (in particular, as payment of "costs of obtaining informed consent, accumulating data, secretarial support, and consultation with each subject").

This hypothetical case illustrates an increasingly common phenomenon--offers of "finder's fees" and other "administrative" fees by pharmaceutical companies or Contract Research Organizations (CROs) to primary care physicians for conducting research involving their patients. Finder's fees are offers of money to physicians in reward for referral of patients eligible for research participation. They can be distinguished from payments made to cover costs of research participation.

Understanding Dementia: A Primer of Diagnosis and Management

Kenneth Rockwood and Chris MacKnight
Pottersfield Press Ltd. 2001-11-09
ISBN 1-895900-15-8

Review by: Barry Goldlist

The first page of this book is a statement by the authors concerning potential conflicts of interest they might have. In that same vein, let me declare my conflicts of interest. First, I feel that the issue of dementia is of incredible importance to our aging society and that no network of specialists or memory clinics will be able to handle the problem unless primary care physicians can efficiently manage the usual types of dementia. Secondly, I know the two authors extremely well. Ken Rockwood is an internationally-recognized clinical researcher in the field of dementia, and Chris MacKnight is a bright young star in the field. I am thrilled to say that both are Canadians and practice in Canada (both are on the faculty of Dalhousie Medical School in Halifax).

The target audience for this book is family physicians without special expertise in dementia. What is so unusual about it is that the authors have organized this book with an excellent understanding of the time constraints and resource limitations inherent in modern day primary care.

The initial sections give a brief review of Alzheimer disease (AD) and its staging, as well as descriptions of vascular and other dementias. The thrust throughout this section is very consistent. The authors persuasively argue that the key issue in primary care is to recognize typical AD (and vascular dementia) so that the physician can identify discrepancies in the usual pattern. Thus, the family doctor will know when to refer the patient for diagnosis of less common dementias and when to suspect superimposed illness (delirium). For this reason, the authors stress the importance of staging in AD. If events do not progress as expected, or if there is stage incongruence (some symptoms or signs not appropriate for that stage), the family doctor will be prompted to reassess.

The following chapters, recognizing the inability of a family doctor to spend enormous amounts of time, show how to divide the assessment into several visits. The purpose of visit 1 is to determine if the patient with a memory complaint actually has a memory problem. Visit 2 attempts to answer the question 'Does the patient have dementia?' accurately, by focussing on whether more than memory is impaired. In the text, Rockwood and MacKnight provide all the necessary tools to answer these questions, and make recommendations on the extent of laboratory and radiological investigation. Visit 3 focuses on the exact type of the patient's dementia, and once again this practical text does not pretend to be comprehensive. Rather, it focuses on how the family doctor can be confident and comfortable in diagnosing the common kinds of dementia. In Chapter 4, management plans are outlined and protocols for follow-up are described for visit 5 and on. The book then concludes with sections on pharmacology for both cognition and behaviour. The conclusion has an excellent algorithm that summarizes how the primary care physician will organize the evaluation.

Each chapter is replete with 'clinical pearls' and superb case presentations. I enjoyed these cases because many were inconclusive, and messy, just like those in my own practice. They have been carefully selected and illustrate beautifully the didactic information of that chapter.

My only quibble is with the actual printing style of the book. While the font is generally clear and crisp, I did not enjoy the grey subtitles that are the same size as the subsequent text. As well, many of the tables are not well differentiated from the surrounding text, and the unwary reader might not initially know that she has strayed from the text. These issues are extremely minor and did not distract from my enjoyment of the text.

In summary, I feel this is a superb book. I am generally an "optimistic" reviewer, but I do not think I have ever reviewed a book that has targeted its audience so precisely, and met its stated objectives so well. I am confident that anyone who reads 'Understanding Dementia' will agree that my "conflict of interest" has not impaired my judgement. Any family doctor who sees elderly patients (because they will be seeing dementia even if they do not recognize it!) would benefit from reading this book.

Is Old Age a Disease or Just Another of Life’s Stages?

Dr. Clarfield is the Chief of Geriatrics, Soroka Hospital Centre, Professor, Faculty of Medicine, Ben Gurion University of the Negev, Beersheva, Israel. Professor (Adjunct), Division of Geriatric Medicine, McGill University and Jewish General Hospital, Montreal, QC, Canada.

Have you ever heard of the wonderful one-hoss shay.
That was built in such a logical way.
It ran a hundred years to a day.
And then, of a sudden, it-ah, but stay.
I'll tell you what happened without delay.
Scaring the parson into fits.
Frightening people out of their wits,
Have you ever heard of that, I say?
Oliver Wendell Holmes

My own grandfather died when he was over 100 years old. Why? We don't know because, for religious reasons, no autopsy was performed. Even if it had been, what might it have shown? Possibly a Whitmore stage A or B carcinoma of the prostate, maybe a tumour in the cecum, perhaps the scars of previous myocardial infarcts, but very likely nothing that a pathologist could confidently have labeled as the cause of death.

So why do old people die? Is aging a disease or is it simply a normal life stage? Or, as Crapo and Fries have so elegantly described in their book "Vitality and Aging" (from which the above quote was lifted), is it simply the final disintegration of the old buggy?

In order to come to some understanding as to what aging actually comprises, it might be helpful to examine what pertains in other mammalian species.

Pain Relief Dare to Dream

If you suffer from chronic pain, or have patients who do, a recent study at the University of Toronto may provide you with new hope. Researchers at the University of Toronto, the Amgen Institute and the Hospital for Sick Children have discovered a genetic mechanism in pain modulation that may lead to a new approach to pain control. They identified the function of a gene called DREAM (downstream regulatory element antagonistic modulator), which appears to play a key role in how mice respond to heat, touch and inflammation. Genetically engineered mice lacking DREAM display reduced responses to models of acute thermal, mechanical and visceral pain, as well as models of inflammatory and chronic neuropathic pain. The latter is considered particularly exciting, as the medical community currently has no widely effective treatments for managing this debilitating type of pain.

DREAM was first identified in 1999, but was given three different names and three different suggested biological functions. It had previously been demonstrated to reduce production of dynorphin, an endorphin normally produced in response to pain or stress. Cheng et al. have now shown that DREAM is a transcriptional repressor, suppressing the genetic machinery that reads the DNA code for dynorphin. When the DREAM gene was absent, mice had increased production of prodynorphin mRNA and dynorphin A peptides in the spinal cord involved in transmitting and controlling pain messages. The attenuated pain response was evident for all types of pain and in all types of tissue.

Mice lacking the DREAM gene were otherwise completely normal and showed no major defects in motor function, learning or memory. There was no sign that the mice became addicted to the pain control chemicals that the body produced, which would provide an advantage over some currently available pharmacological therapies.

Estimates suggest that one in five people worldwide lives with chronic pain. Current pharmacologic approaches to pain management focus on opioids, anti-inflammatory medications, or analgesics such as acetaminophen. The recent findings suggest the possibility of a novel approach to pharmacological pain management, whereby drugs could block the ability of DREAM to bind to DNA, or could simply prevent the production of DREAM.

Of course, practical applications of this study are a long way off. Although it provides a major insight into pain mechanism in mice, it remains to be determined whether the same mechanism exists in humans.

Source

1. Cheng HM, Pitcher GM, Laviolette SR et al. DREAM is a critical transcription repressor for pain modulation. Cell. 2002; 108:31-43.

The Winds of Change: Geriatrics and Aging in 2002

This month we are very pleased to make several major announcements concerning Geriatrics & Aging for the year 2002. Over the past year, we have invested a great deal of time and energy in assessing your needs and in providing you with information that is of practical importance to your day-to-day practice. In the same vein, we have been working towards establishing affiliations with recognized programs and institutions in order to ensure that we continue to publish high quality educational material. We are pleased to announce that Geriatrics & Aging is now working with the Regional Geriatric Programs of Ontario to provide you with current information on best-practice medicine and on important programs and services for the elderly.

The RGPs were established in the mid-80s, as part of a strategic plan to provide a comprehensive system of health services for the elderly. The RGPs are set up as a network of independently operating programs that exist at each of the five academic health science centres in Ontario: Ottawa, Kingston, Toronto, Hamilton and London. They provide a variety of services ranging from consultation and education to the development of treatment and rehabilitation programs. We are very pleased to have been chosen as a vehicle for disseminating information for the RGPs and look forward to working closely together. Keep your eyes open for the RGPs' supplements that will appear regularly in 2002. For further information on the Regional Geriatric Programs, please visit their website at www.rgps.on.ca.

Secondly, I would like to welcome some new members to the Geriatrics & Aging team. We are delighted to announce the addition of three new physicians to our advisory board: Dr. Christopher MacKnight (Dalhousie University), Dr. David Gladstone (Sunnybrook and Women's College) and Dr. Wilbert Aronow (Mount Sinai School of Medicine). Drs. MacKnight and Gladstone are rising stars in the fields of dementia and stroke research and we look forward to having them keep us current on exciting developments in these fields. Both have contributed outstanding articles to recent issues of Geriatrics & Aging on the Management of Vascular Dementia (April 2001) and New Frontiers in Stroke Recovery (September 2001), respectively. Dr. Aronow is an internationally renowned geriatric cardiologist with over 400 publications, who joins us from the Department of Geriatrics and Adult Development at the Mount Sinai School of Medicine in New York. I am sure that all three will be excellent additions to our team.

Our final announcement concerns the format of our publication. Our readership survey, conducted earlier this year, indicated that many of our readers have difficulty archiving information from the publication in its current format. In response to readers' requests and in order to meet the needs of our partners, we are pleased to announce that, as of January 2002, Geriatrics & Aging will be published in a journal format. We are determined to maintain our high production quality, innovative illustrations and dynamic layout, but aim to combine this with a format that will be more reader-friendly. We hope that you will support us in our efforts and we look forward to receiving feedback. Don't miss our 'flagship issue' in the mail in early February.

Highlights of the Continuing Education Symposia at the 17th Congress of the International Association of Gerontology

Dr J. Holroyd-Leduc, MD, FRCPC
Dr. M. Reddy, MD, FRCPC
Associate Editor,
Geriatrics & Aging.

Osteoporosis and the Frail Elderly

• According to prevalence data from 1993, based on bone mineral density assessments 1.4 million Canadian women had osteoporosis and over 60,000 women were estimated to have osteoporosis-related fractures that year.
• In those over 65, the projected number of hip fractures in Canadians over 65 will increase from 12% in 1993 to 25% in 2041.
• The mean one-year cost of a hip fracture is $26,527 (CAN) based on an observational study conducted by Wiktorowicz, et al. (Osteo Int;2001:12(4)).
• Bisphosphonates are the only agents documented to reduce hip fracture risk in calcium and vitamin D replete adults with osteoporosis.
• Non-pharmacological strategies shown to be effective include correcting calcium and vitamin D deficiency in the very elderly, use of hip protectors in fall-prone individuals, and fall-prevention programs in nursing homes.

Prevention in Geriatric Care

• Exercise programs reduce falls and fall-related injury by 35% and are most effective in those 80 years and older.
• Some preventative targets in the elderly, other than disease-specific issues, include disability, frailty, inappropriate LTC admission and hospitalization, "nosicomal" delirium and deconditioning, and inappropriate drug use.

Influenza and Superbugs in the Nursing Home

• 80-90% of influenza-related morbidity and mortality occurs in older adults.
• Vaccination is only 50-60% effective for preventing illness in older people, however it is 80-90% effective at preventing serious complications.
• Influenza in the elderly can present atypically, lower respiratory tract involvement is common, and constitutional symptoms can be prolonged resulting in disability.
• Superbugs, which includes MRSA and VRE, can be controlled effectively with appropriate universal hand- washing (patients, staff, visitors, and volunteers) and without requiring isolation.

Osteoarthritis

• Risk factors for developing osteoarthritis include advancing age, female sex, bent knee activities, heavy lifting, muscle weakness, absence of osteoporosis, genetic predisposition, obesity and possibly recreational sports.
• Nonpharmacological management therapies of variable effectiveness include weight loss, exercise, orthoses, education, Glucosamine, vitamin C, vitamin D and transcutaneous electrical nerve stimulation (TENS).
• Pharmacological treatment in the elderly should include consideration of a trial with regular dosing of acetaminophen. The main issues of concern with acetaminophen use includes compliance, variable effectiveness, and potential for liver toxicity.
• Cox-2 inhibitors are another option in the elderly. They appear to demonstrate less gastrointestinal toxicity than do traditional NSAIDS; however they still have the potential for renal toxicity, hypertension and peripheral edema. Coxibs should be used with caution in individuals with a history of gastrointestinal ulcers; concomitant use of NSAIDs, anticoagulants or steroids; age over 60; and/or a history of heart disease.

Non-Alzheimer Dementia: Frontal Temporal

• Diagnosis can be divided into Frontotemporal dementia (socially inappropriate behaviour, perseveration, and stereotypic behaviour); Primary progressive aphasia; Corticobasal degeneration (atypical extrapyramidal-apraxic syndrome); Semantic dementia (loss of meaning of things, loss of comprehension and naming). However, different subtypes can co-occur in the same individual.
• There is evidence of serotonin deficiency in Frontal Temporal dementias.
• The frontal system is responsible for executive control, and executive dysfunction leads to problem behaviour.
• One form of bedside testing includes the CLOX test, where an individual is asked to draw an unprompted clock, copy a clock and draw intersecting pentagons. An individual with executive dysfunction can copy but will have impairment in unprompted clock drawing, compared to an individual with Alzheimer disease who will demonstrate difficulties in both copying and unprompted clock drawing.
• There are few studies that examine clinical management of Frontal Temporal dementia, and the available studies are open-label and case series
  see Table 1.

Diabetes Mellitus

• Incidence is 20% in persons 75 years and older.
• Mortality in elderly diabetics is not dramatically higher compared to age-matched non-diabetics. However there are morbidity benefits from glycemic control. There is an association between elevated Hgb A1C and retinopathy, and elevated Hgb A1C and coronary artery disease.
• Suggested goals of therapy in healthy elderly are FBS <7 and Hgb A1C < 15% above upper limit of normal; the goals in the frail elderly are FBS <10 and Hgb A1C < 40% above the upper limit of normal.
• The DECODE study found that postprandial glucose is an independent risk factor for mortality and cardiovascular disease in type 2 diabetics and in non-diabetics. It also found that most of the excess mortality and cardiovascular risk associated with high fasting glucose depends on simultaneous high 2-hr postprandial glucose.

Congestive Heart Failure

• A model of chronic disease management in the community has been developed in Vancouver, BC, Canada that encompasses an integrated algorithmic approach to the management of heart failure.

The Masks of Depression in the Elderly

• Depression, apathy, delirium, dementia and grief are all separate clinical entities but can co-occur.
• Apathy, depression and delirium can all be manifestations of frontal lobe dysfunction.
• Depression is the most common psychiatric disorder in the elderly, and depression can develop at any point in the lifespan.
• Depression often coexists with medical conditions (stroke 30%; MI 18%; Hip fracture 50%; pain 50%) and it can interfere with the treatment of other medical conditions.
• Depression is not uncommon in patients with Alzheimer dementia and will respond to treatment.
• In early stages of Alzheimer disease the individual complains of a sad mood and feelings of worthlessness, and will appear sad and/or irritable.
• In late stages of Alzheimer disease the individual will appear sad and will have vocalizations of discomfort.

Disturbing Behaviour in Dementia

• in managing aggression and psychosis in a demented individual one needs to first assess safety concerns, then rule out delirium (including contributing medical disorders and medication effects), and pre-existing psychiatric illness. The agitation should then be described and the target behaviour identified. Appropriate treatment can be aimed at addressing the target behaviour.
• some behaviours that are relatively resistant to antipsychotic medication includes wandering, pacing, exit-seeking, and repetitive screaming and calling out
• nonpharmacological interventions can include following care schedules, avoiding stress, using simple verbal and non-verbal cueing, providing good personal care, good sleep hygiene, music therapy, appropriate lighting levels, appropriate environmental changes, and exit control
• it is important to nuture the personhood of the individual with dementia

Alzheimer Disease and Vascular Dementia

• 1/3-1/2 of autopsy proven Alzheimer's disease also has evidence of cerebrovascular disease
• a potential common risk factor is Apo E e4
• Apo E is involved in lipid transport and in the CNS is involved in mobilising lipids for growth and repair
• Apo Ee4 is associated with elevated plasma cholesterol, LDL, and atherosclerosis, and is also associated with late-onset Familial Alzheimer's disease and an increased risk of sporadic Alzheimer's disease
• Alzheimer's disease and cerebrovascular disease are both common and share risk factors
• Controlling hypertension in the Sys Euro trial (Lancet 1998) demonstrated a 50% reduction in the incidence of dementia
• There was a 60-73% reduction in dementia prevalence in individuals with hypercholesterolemia who were treated with a HMG-CoA reductase inhibitor (Arch Neurol 2000)
• there appears to be similar cholinergic deficits in Alzheimer's disease and Vascular dementia
• in preclinical models, rivastigmine has been shown to prevent a decrease in cholinergic indices in ischemic conditions and to prevent of post-ischemic neuronal death in the hippocampus
• The treatment effect of rivastigmine was higher in Alzheimer patients with vascular risk factors (ADAS cog Study 352)
• galantamine improved the ADAS cog scores by 2-3 points compared to placebo when given to individuals with probable Vascular dementia, intermediate Vascular dementia, or mixed Vascular dementia and Alzheimer's disease (Neurology 2001;s38:340)

Parkinson's disease and the Frail Elderly

• levodopa is still the gold standard for relief of Parkinson's disease symptoms
• the new dopamine agonists are devoid of the rare ergot-related toxicity but are equivalent in terms of other toxicity, including nausea, postural hypotension, and psychosis

For reviews of disturbing behaviour in dementia, Alzheimer Disease, Vascular Dementia and Parkinson's disease in the elderly, see our website at www.geriatricsandaging.ca.

Risky Business: Examining Our Response to the Elderly Living at Risk

Harold Parker, BSW, MSW, RSW
Social Worker, Outreach Team,
Southwestern Ontario Regional Geriatric Program,
London, ON.

Laura Diachun, BASc, MD, FRCP(C)
Geriatrician,
Southwestern Ontario Regional Geriatric Program,
London, ON.

As an Outreach Team that provides service to the frail elderly for the Southwestern Ontario Region (10 counties), our ongoing challenge is how to respond to the needs of cognitively-impaired older persons living at some degree of risk. The perception and assessment of risk vary depending upon the lens through which we are looking. A living situation that may be perceived as risky by some may be quite unproblematic to others. Caring family members can often rationalize paternalism toward their elderly loved one so as to err on the side of safety--a value that can often take precedence over issues of quality of life and self-determination. A lifetime of responsible decision-making is no guarantee of the continued exercise of free will at the latter end of the life cycle. The 'assailants' to independence can be many, including paternalism and the presence of disease beyond normal aging, which can affect both function and cognition. It is often unclear where to draw the line between granting the individual the freedom to make poor lifestyle decisions and deeming that someone is exceeding family/community standards of acceptable lifestyle choices.

Living Wills and the Long-Term Care Patient

Michael Gordon, MD, MSc, FRCPC
Vice President of Medical Services,
Baycrest Centre for Geriatric Care,
Professor of Medicine,
University of Toronto, Toronto, ON.

The nurse and physician were very upset. They felt that Mrs. B.'s daughter was not respecting her mother's wishes to forgo CPR should she experience a cardiac arrest. A year earlier, when Mrs. B. entered the nursing home with late-stage Parkinson's disease, she had filled out an advance directive, naming her daughter, rather than her ailing husband, as her surrogate and indicating that, in the event of a cardiac arrest, she did not want to be resuscitated. Over the course of the year, as her disease progressed and she underwent repeated aspirations, it became evident that the end was in sight. Mrs. B.'s daughter told the staff that she would not accept the DNR order and, as the "lawful" surrogate, was requesting that "everything" be done should her mother have a cardiac arrest.

Dr. M. was distraught. Six months earlier, he and his younger brother and sister had, with some reluctance, agreed to the insertion of a PEG tube for their mother who suffered from late-stage Alzheimer disease and had stopped eating after a bout of pneumonia. They felt that by feeding her, she might have a chance at recovery and had not really thought through the long-term consequences of their decision.