Alzheimer. Recommendations For the Use of Donepezil 5. William Dalziel, MD, FRCPC

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1 The Canadian Alzheimer Volume 3, Number 4 July 2000 Disease Review Art by Sarah Burton-MacLeod The Family Physician s Guide to the Use of Donepezil 3 Paul J. Coolican, MD, CCFP Recommendations For the Use of Donepezil 5 William Dalziel, MD, FRCPC A Home Away From Home: Choosing A NursingHome For A Loved One 11 Lilly Katofsky, BA, BSW, MSW, s.w. A Caregiver Satisfaction Survey of TriAD 17 Linda LeDuc, RN, BA Growing Numbers: Baby-Boomers Heading Into Alzheimer Years 22 The Alzheimer Society of Canada

2 E D I T O R I A L The Family Physician s Guide to the Use of Donepezil by Paul J. Coolican Care of patients with dementia can be very challenging for family physicians. We rely on many sources of information, including the patient, their close family, neighbours and friends, as we try to assess cognitive function. Alzheimer s disease (AD) patients often cannot provide accurate histories, and accompanying caregivers, relatives or neighbours may be impressed by one event that clouds their appreciation of the patient s condition (e.g., He got lost in town! We ve lived here for over 50 years! ) The MMSE and FAQ are useful tools for assessment in these situations, although clinical judgement remains key in providing appropriate care. For patients whose dementia is predominantly of mild-to-moderate Alzheimer s type, the use of donepezil may slow the progression of symptoms of this degenerative condition. The decline of patients with AD generally is insidious and slow, measured in years. Donepezil shifts this declining curve, but does not appear to alter its slope. Clinically, we may notice improved or stabilized function over the first three to six months, but declining function gradually returns. In this context, it may be difficult to appreciate the effectiveness of therapy. Still, donepezil therapy might substantially prolong the patient s independence and delay the decline to institutionalization. Patient response to donepezil may be widely variable, and evaluating treatment benefits of this drug may be difficult for the patient, caregiver and physician. Dr. Dalziel and Dr. Bouchard (Recommendations For the Use of Donepezil, p.5) present a pragmatic approach to the management of patients whose AD might warrant a trial of donepezil. Developed by a group of experts and reviewed by two groups of GPs, these guidelines present a straightforward approach that is easily incorporated into the family practice setting. It should help clinicians, patients and caregivers manage AD patients using donepezil. The Canadian Consensus Conference on Dementia 1 suggests regular reassessment following initiation of treatment and documentation of stabilization, improvement or persisting deterioration to help determine whether or not to continue the drug. The recommendations outlined by Dr. Dalziel and Dr. Bouchard provide a straightforward algorithm which meets the Canadian Consensus Guidelines. Institutionalization is a terrifying word. It invokes thoughts of leaving home forever, of caregiver guilt at having promised to look after their spouse or parent until the bitter end, and of the fears of relentless disease progression. These negative connotations carry emotional factors that may override the real patient benefits of moving into a longterm care facility. Lilly Katofsky (A Home Away From Home: Choosing a Nursing Home For A Loved One, p.11) presents a review of the placement process, identifying the various stages in this process from the perspective of the patient and caregiver. This is a fresh change for family physicians, whose stages in the placement process are centered on the administrative hurdles and forms of the placement process. TriAD is a program aimed at providing information and resources on AD to patients, caregivers, physicians and other health professionals. Linda Leduc (A Caregiver Satisfaction Survey of TriAD, p. 17) presents the results of a survey of caregivers who used the TriAD program. These results appear to demonstrate the value of educating caregivers in the management of AD patients. 1. Patterson CJS, Gauthier S, Bergman H, et al. The recognition, assessment and management of dementing disorders: conclusions from the Canadian Consensus Conference on Dementia. CMAJ 1999;160(12). The Canadian Alzheimer Disease Review July

3 Editorial Board Publishing Staff CHAIRMAN Peter N. McCracken, MD, FRCPC Geriatric Medicine Staff, Glenrose Rehabilitation Hospital. Part Director, Division of Geriatric Medicine and Professor of Medicine, University of Alberta, Edmonton, Alberta. Paul J. Coolican, MD, CCFP Family Physician, St. Lawrence Medical Clinic Morrisburg Ontario Active Staff, Winchester District Memorial Hospital Winchester, Ontario Shannon Daly, RN, BScN Community Nurse Northern Alberta Regional Geriatric Program Edmonton, Alberta Howard Feldman, MD, FRCPC Clinical Associate Professor of Medicine University of British Columbia Division of Neurology UBC Director, UBC Alzheimer Clinical Trials Unit Vancouver, British Columbia Serge Gauthier, MD, CM, FRCPC Professor of Neurology and Neurosurgery, Psychiatry and Medicine, McGill University McGill Centre for Studies in Aging Montreal, Quebec Bernard Groulx, MD, CM, FRCPC Chief Psychiatrist, Ste-Anne-de-Bellevue Hospital Associate Professor, McGill University McGill Centre for Studies in Aging Montreal, Quebec Nathan Herrmann, MD, FRCPC Associate Professor, University of Toronto Head of the Division of Geriatric Psychiatry, Sunnybrook Health Science Centre Toronto, Ontario Kenneth J. Rockwood, MD, FRCPC Associate Professor, Dalhousie University Geriatrician, Queen Elizabeth II Health Sciences Centre Halifax, Nova Scotia Paul F. Brand Executive Editor Russell Krackovitch Managing Editor Marie Laliberté Editor-proofreader, French Sherene Chen See Stephanie Costello Project Editors Donna Graham Production Manager Dan Oldfield Design Director Jennifer Brennan Financial Services Jamie Tolis Accounting Assistant Barbara Roy Administrative Assistant Ian W.D. Henderson, MD Medical Consultant John L. Liberman, QC Forensic Consultant Robert E. Passaretti Publisher The editorial board has complete independence in reviewing the articles appearing in this publication and is responsible for their accuracy. Pfizer Canada exerts no influence on the selection or the content of material published. On the Cover A Glimpse by Sarah Burton MacLeod. Prior to starting medical school, I had the privilege of working as a personal care worker in a nursing home on a floor set aside for people with Alzheimer's disease. I remember quite vividly how each person's unique and special spirit could be seen despite this devastating disease. One lady still carried a well-used, large beige purse, while one man recited lines from the prayers he remembered. I can only imagine how welcome such glimpses would be for those who have known and loved these people over the years. In this painting I attempted to represent just such a glimpse one of warm, comforting familiarity that you can still see despite the creeping chill of disease. It s the large beige purse she still carries, The lines from Hail, Mary he still recites. It s a glimpse of the one you know, a vision of familiar warmth, through the corner of a window being increasingly obscured by the chill of disease. We d Like to Hear From You! The Canadian Alzheimer Disease Review welcomes letters from its readers. Address all correspondences to Letters, The Canadian Alzheimer Disease Review, 955 Boul. St. Jean, Suite 306, Pointe Claire, Quebec, H9R 5K3. The Review also accepts letters by fax or electronic mail. Letters can be faxed to and address electronic mail to russellk@sta.ca. Please include a daytime telephone number. Letters may be edited for length or clarity. The Canadian Alzheimer Disease Review is published by STA Communications Inc., through an educational grant provided by Pfizer Canada. The opinions expressed herein are those of the authors and do not necessarily reflect the views of the publisher or the sponsor. Physicians should take into account the patient s individual condition and consult officially approved product monographs before making any diagnosis or treatment, or following any procedure based on suggestions made in this document. Publications Agreement Number Copyright All rights reserved. 4 The Canadian Alzheimer Disease Review July 2000

4 Recommendations For the Use of Donepezil The trial of donepezil in patients with mild to moderate dementia due to probable AD was one recommendation made by the Canadian Consensus Conference on Dementia. Clear guidelines are necessary, as many primary care physicians remain uncertain about administering and monitoring this important treatment. by William Dalziel, MD, FRCPC and Rémi W. Bouchard, MD, MSc, FRCPC Dr. Dalziel is associate professor, University of Ottawa, and staff, Ottawa Hospital, Civic Campus Site, Ottawa, Ontario. Dr. Bouchard is associate professor, Université Laval, and neurologist, Hôpital de l Enfant- Jésus CHA, Quebec, Quebec. Alzheimer's disease (AD) is the most common dementing disorder, accounting for approximately 64% of the estimated 350,000 cases of dementia among Canadian seniors. 1 This number is expected to triple over the course of the next 30 years. 1 As a result of its increasing prevalence, AD has become a reality faced by more and more primary care physicians in their everyday practices. Recognition and assessment of AD have been facilitated significantly by the publication of the conclusions from the Canadian Consensus Conference on Dementia, which recently provided a structured clinical approach to evaluating patients with suspected AD. 1 The objective of the Canadian Consensus Conference on Dementia was to develop evidence-based consensus statements on which to build clinical practice guidelines for primary care physicians. Based on currently available evidence and consultations with experts in the field, consensus statements were developed by a group of experts guided by a steering committee of eight specialists from the areas of neurology, geriatric medicine, psychiatry, family medicine, preventive health care and health care systems. Fortyeight recommendations were made, addressing all diagnostic and therapeutic aspects of dementia care. One of the treatment recommendations is that, in the absence of contraindications, a trial of donepezil (Aricept) can be prescribed to informed and willing patients with mild to moderate dementia due to probable AD. 1 Donepezil is an acetylcholinesterase inhibitor approved in Canada for the symptomatic treatment of mild to moderate AD. A consistent pathological change in AD is the degeneration of cholinergic neuronal pathways that project from the basal forebrain to the cerebral cortex and hippocampus. The resulting hypofunction of these pathways is thought to account for some of the clinical The Canadian Alzheimer Disease Review July

5 manifestations of AD. Donepezil is postulated to exert its therapeutic effect by enhancing cholinergic function. This is accomplished by increasing the concentration of acetylcholine through reversible inhibition of its hydrolysis by acetylcholinesterase. Donepezil has been on the market in Canada since August The experimental and clinical experience is now quite comprehensive, with 346 million patientdays worldwide. 2 The efficacy and safety of this medication have been demonstrated conclusively. Although there is wide experience with donepezil, some primary care physicians remain uncertain about various aspects related to the administration and monitoring of donepezil treatment. These aspects include when to start and stop the medication and how to evaluate treatment benefits in this population of patients. 2 Assessing the benefits of a symptomatic treatment in AD patients may appear difficult for some clinicians due to the progressive degenerative nature of the disease, its variable course, and the lack of simple, easily administered short-outcome measurement tools. It is important to understand the therapeutic gain of a symptomatic treatment in its right context. Patients are expected to decline at different rates for the various symptoms of the disease and, for most domains, in a non-linear fashion. In such a context, symptoms that improve, stabilize or decline at a lesser pace than would be expected if untreated may considered treatment successes. To facilitate the evaluation of patients treated with donepezil, a group of Canadian specialists was assembled to develop recommendations for its appropriate use in the treatment of AD in a primary care setting. This paper presents the results of this initiative. Although there is wide experience with donepezil, some primary care physicians remain uncertain about various aspects related to the administration and monitoring of donepezil treatment. Methodology Development process. The development of the treatment recommendations followed these steps: 1) a preliminary meeting served to establish the outline of the recommendations; 2) based on this outline, a first draft of the treatment recommendations was developed and submitted to an Expert Panel composed of neurologists, geriatric psychiatrists, geriatricians and general practioners for their input; 3) a final draft was presented to two groups of general practitioners during two different focus group meetings to determine the usefulness and pertinence of the treatment guidelines; 4) the comments from the Expert Panel and focus groups were incorporated into the final recommendations. Implementation. The present treatment recommendations will be disseminated through various vehicles, such as this publication. Other didactic tools might be developed, based on the formats recommended by the members of the focus groups who participated in the development process. Recommendations for the Use of Donepezil The present recommendations are presented as a a step-by-step approach reviewing the various elements to consider in the initial clinical evaluation, and subsequent follow-up visits, of patients with AD in whom treatment with donepezil is indicated. The following section reviews the various key steps to undertake during each visit. A treatment algorithm (Figure 1) provides a quick reference tool that summarizes the different steps described below. A patient sheet that may be used to record results while following a patient also is included (Figure 2). 1. Baseline Assessment This step takes place when a diagnosis of AD is established. Diagnosis is established as per recommendations from The Canadian Consensus Conference on Dementia. 1 It is important to mention that baseline assessments may be conducted over the course of several visits. Cognitive and global functioning. Once a diagnosis is made, evaluate cognitive and global functioning, activities of daily living and behavioral symptoms (e.g., apathy, agitation, irritability). Interview the patient and caregiver to evaluate problem areas and potential treatment 6 The Canadian Alzheimer Disease Review July 2000

6 Figure 1 DONEPEZIL TREATMENT ALGORITHM Baseline assessment after diagnosis is made Evaluate cognition, global functioning, ADLs and behavior Evaluate health status, treat concomitant illnesses and evaluate concomitant drug usage Discuss potential treatment benefits/expectations, side effects and compliance Baseline assessments may be done in several visits Initiate donepezil 5 mg/day at bedtime Ask patient/caregiver to contact you if any side effects If side effects are severe, persist or worsen rapidly, withdraw treatment 2 weeks Discuss and evaluate tolerability and compliance during a visit or by phone Adjust drug regimen if appropriate (e.g., switch to morning regimen if sleep disturbance) 4 to 6 weeks Assess compliance, check vital signs (heart rate and blood pressure) Even if too early to determine treatment benefit, discuss first impression of change with patient/caregiver Increase dose to 10 mg/day unless there are some concerns 3 to 6 months Evaluate benefits by comparing performance from this visit to that of baseline visit No Is there evidence of improvement, stabilization or some slowing of losses? Yes Caregiver and physician feel there is continued deterioration at pre-treatment rate Discuss stopping therapy with patient and caregiver Monitor patient closely; consider restarting medication within 2-3 weeks at previous dose if patient clearly is worse and no other reasons are found If worsening is observed, consider the following before withdrawing donepezil therapy: worsening may be disease-related (e.g., onset or aggravation of behavioral manifestations, consider non-pharmacologic treatments or introduction of psychotropic medications deterioration may be due to superimposed health or compliance problems Continue therapy and reassess every 6 months using the performance level from the previous evaluation If benefits are still observed, the following are not necessarily grounds for discontinuation: patient has an MMSE score of < 10 patient has been placed in a nursing home patient scores fall below initial baseline level The Canadian Alzheimer Disease Review July

7 benefits. In particular, ask the patient and caregiver to identify three to five target symptoms they would hope to see improved or stabilized as a result of donepezil treatment. Health status and co-morbidity. Evaluate health status (i.e., measure blood pressure and vital signs), verify potential precautions to take or contraindications to drug treatment, treat co-morbid illnesses (e.g., depression), and evaluate concomitant drug usage (e.g., drugs to be avoided). Discuss the following topics with the patient and caregiver: Potential treatment benefits and expectations. The safety and efficacy of donepezil have been studied in several double-blind, placebo controlled studies with durations of six months and one year, and in openlabel studies spanning more than two years. 3-6 Treatment benefits, defined as an improvement, stabilization or some slowing of losses (i.e., decline is less than expected based on the rate of deterioration in the six to 12 months prior to initiation of donepezil therapy) in performance levels, have been observed in global and cognitive functioning, activities of daily living and neuropsychiatric symptoms. 7-9 Benefits usually are observed after six to 12 weeks of continuous treatment. It also is known that these benefits are lost six weeks after withdrawal. Potential side effects and how to handle them. The most common adverse clinical events (occurring in at least 5% of patients) associated with donepezil are predictable consequences of its pharmacologic properties, and include nausea, diarrhea, insomnia, vomiting, muscle cramps, fatigue and anorexia. 10 These events often are mild and transient, resolving with continued treatment without the need for dose modification. Treatment with the 5 mg/day dose for over four to six As for all medications, maximum therapeutic benefits are observed when the medication is taken as recommended. weeks prior to initiating treatment with the 10 mg/day dose is associated with a lower incidence of gastrointestinal intolerance. Compliance. As for all medication, maximum therapeutic benefits are observed when the medication is taken as recommended. A pill count at each visit may help assess compliance. The available blister pack also may be useful in this regard. Stress the fact that compliance increases possible treatment benefits. Precautions. It is important to initiate donepezil therapy, at 5 mg/day, for four to six weeks at night to minimize gastrointestinal side effects. Instruct patients to switch to morning administration if insomnia develops. Ask the patient and/or caregiver to contact you if any side effects appear. 2. At Two Weeks This step takes place when there is concern for side effects or noncompliance, and is optional for other patients, who should contact you if necessary. Evaluate tolerability. Donepezil usually is well tolerated. Adverse events, when they are experienced, usually are mild and transient, and few patients need discontinue treatment due to side effects. However, in the case of side effects that are severe, persistent or worsen rapidly, treatment should be withdrawn. Evaluate compliance. Compliance to the prescribed regimen is essential for the patient to receive optimal treatment benefits. A pill count can be done. 3. At Four to Six Weeks Increase dosage. After four to six weeks of treatment, the dose of donepezil should be increased to 10 mg/day, unless there are specific concerns (e.g., in low-weight patients). Check compliance. Again at this stage, a pill count can be performed to determine how closely the patient has been following the prescribed drug regimen. Assess vital signs. This should include measurements of heart rate and blood pressure in all patients. Evaluate perception of benefit. Although it is too early to expect significant therapeutic benefits, it may be useful to ask the patient and/or caregiver for their first impressions of treatment benefits. 4. At Three to Six Months Evaluate benefits by comparing the performance from this visit to that of the baseline visit. Improvement, stabilization or slowing of decline. Continue therapy and reassess in three to six months if the patient is better, the same or demonstrates some slowing of losses (i.e., decline is less than expected based on the rate of deterioration in the six to 12 8 The Canadian Alzheimer Disease Review July 2000

8 Figure 2 DONEPEZIL PATIENT FOLLOW-UP SHEET Name: Date: Accompanied by / Relationship: Date of birth: Age: D I Medical history: From patient and reliable informant (onset, duration, evolution of symptoms, precipitating factors and family history). Physical exam: Rule out adverse drug effects, depression, metabolic or systemic illness. A G N O S I Medication: Laboratory: θ CBC Electrolytes Calcium TSH Glucose Scan Alzheimer s disease diagnosis date: Issues to address with patient/caregivers: Diagnosis and prognosis Power of attorney and legal issues Information about the disease process Support organizations/alzheimer Society S Driving competencies Offer TriAd Disease Management Program Before initiating treatment, discuss with patient and caregiver: Potential treatment benefits Potential side effects Compliance Donepezil starting date: Dose increase date: Psychometric testing Baseline 3-6 months Follow-up date: Follow-up date: Cognition: M O N (e.g., memory,aphasia, apraxia, executive function) MMSE score: Function: Instrumental activities of daily living (e.g., shopping, housekeeping, I money management) Basic activities of daily living T O (e.g., bathing, feeding, grooming) FAQ/PSMS score: Behavior: (e.g., hallucinations, agitation, R depression, anxiety, disinhibition) I N Caregiver input: (specify problem areas) G Global clinical impression of severity/change: When using donepezil: Contraindications: Hypersensitivity to cholinesterase inhibitors. Precautions: Anesthesia, cardiovascular, gastrointestinal, genitourinary, neurological and pulmonary conditions; renal and hepatical impairment. Medication not recommended, or to be used with caution: Anticholinergics, antipsychotics with strong anticholinergic effects, cholinomimetics, MAO inhibitors, neuromuscular blocking agents, other cholinesterase inhibitors, tricyclic. The Canadian Alzheimer Disease Review July

9 months prior to initiation of donepezil therapy). Rapid decline. Faced with a rapid decline, consider the following before withdrawing the medication: superimposed depression, acute infection, delirium, drug reaction/interaction or stroke. Moreover, if the worsening is related to the onset of new or aggravated behavioral manifestations, consider non-pharmacologic treatment or introduction of psychotropic medications before withdrawing donepezil. Continued deterioration. If the caregiver and physician feel there is continued deterioration at pretreatment rate, discuss the option of discontinuing therapy with the patient and caregiver. If a decision is made to discontinue the medication, provide information to caregivers about potential outcomes and monitor the patient closely. Due to its long half-life, gradual tapering of donepezil is not necessary. Consider re-starting the medication within two to three weeks, at the previous dose, if the patient clearly is worse and no other reasons can explain the deterioration. Make sure the patient has medication to re-start treatment if necessary, or that the patient is seen during a followup visit. The following should not necessarily be considered grounds for discontinuing medication: MMSE < 10 or psychometric test scores below baseline 8 nursing home placement 9 new or aggravated behavioral symptoms 10 If the clinician, patient and caregiver still note benefits, continuation of therapy is recommended. Referral. Consider referral to a specialist if difficulties are encountered in assessing treatment benefits, or for a second opinion. Physicians also may refer patients to specialized dementia clinics to give patients access to new drug trials. Caregiver. Interview the caregiver for possible depression and/or to assess the stress and burden associated with caring for the patient. 5. Every Three to Six Months (Follow-up Visits) Assess treatment benefits using the treatment assessment measures. Evaluate benefits by comparing the performances from this visit to those of the evaluation performed three to six months ago. Conclusion The development of these treatment recommendations required that a great wealth of information derived from the scientific literature and physician interviews be adapted in a concise fashion. The participants (specialists and primary care physicians alike) felt any effort to make the management of AD patients simpler would improve care. The only way to ensure that more patients with AD are identified and treated adequately is to simplify the management of these patients. It is our hope that these treatment recommendations will facilitate the practice of primary care physicians, improve the quality of life of AD patients, and alleviate caregiver burden and stress. References 1. Patterson CJS, Gauthier S, Bergman H, et al. The recognition, assessment and management of dementing disorders: conclusions from the Canadian Consensus Conference on Dementia. CMAJ 1999;160(12). 2. IMS Global Services, August December Rogers SL, Farlow MR, Doody RS, et al. A 24-week, double-blind, placebocontrolled trial of donepezil in patients with Alzheimer's disease. Neurology 1998; 50: Burns A, Rossor M, Hecker J, et al. The effects of donepezil in Alzheimer's disease: Results from a multinational trial. Dement Geriatr Cogn Disord 1999; 10: Doody RS, Geldmacher DS, Gordon B, et al. An open-label, multicenter, phase III extension study of the safety and efficacy of donepezil in patients with Alzheimer's disease. Accepted for publication in Archives of Neurology. 6. Rogers SL, Doody RS, Pratt RD, et al. Long-term efficacy and safety of donepezil in the treatment of Alzheimer's disease: final analysis of a US multicentre open-label study. European Neuropsychopharmacology 2000; 10: Feldman H, Gauthier S, Herker J, et al. Benefits of donepezil on global function, behavior, cognition and ADLS in patients with moderate to severe Alzheimer's disease. Neurology 2000; 54(3): , A Cummings JL, Katz IR, Tariot P, et al. Donepezil in the treatment of Alzheimer's disease in a nursing home population. Neurology Mega MS, Masterman DM, O'Connor SM, et al. The spectrum of behavioral responses to cholinesterase inhibitor therapy in Alzheimer Disease. Arch Neurol 1999; 56: Aricept Product Monograph, May 2000, Pfizer Canada Inc. 10 The Canadian Alzheimer Disease Review July 2000

10 A Home Away From Home: Choosing A Nursing Home For A Loved One The decision to move a patient from the home-care setting to a substitute care facility carries great emotional impact. Healthcare professionals must understand this complex process to help patients and their caregivers cope with this major life event. by Lilly Katofsky, BA, BSW, MSW, S.W. Ms. Katofsky is Director, Social Work Department, St. Mary s Hospital Center, Montreal, Quebec. The decision to place a loved one in a nursing home can be traumatic and anxiety-provoking for the patient and his/her family. Indeed, this decision can be characterized as a low point in the lives of the family members. 1 It evokes a range of emotions, both negative and positive. Caregivers can experience guilt about not having done enough, about abandoning their loved one, and about breaking promises of caring through illness and health. They also may feel grief at the loss of their relationship with a partner, parent or sibling. At the same time, caregivers may feel anger towards their loved one for being ill and placing them in this position, towards other family members for not helping enough, or towards the system for not providing sufficient support so their affected relative could remain at home. Disagreement over the decision to place a loved one in a nursing home can lead to family conflict. 2 Caregivers can feel a sense of relief at the thought of receiving assistance with the caregiving. This feeling of relief, however, also may add to the feelings of guilt. Although the family can unite in planning for the future, these types of conflicting emotions themselves can cause stress. Healthcare professionals must recognize that there are no right or wrong feelings, and that their role is to acknowledge these feelings and help caregivers manage them in a positive and healthful way. There is apprehension associated with the thought of placement in a nursing home, as many people have a negative image of nursing homes. 2,3 Furthermore, placement may be seen as socially unacceptable, since families in the "olden days" took care of their elderly family members. 2,4 As the population ages and more people are diagnosed with The Canadian Alzheimer Disease Review July

11 Table 1 STAGES IN THE PLACEMENT PROCESS 1.Precipitating Factors Timing of placement varies Caregiver burnout, health decline Patient health decline 2.Preparing for the Move Anticipate and plan (up to 1 year) Involve patient in planning 3. Searching for a Home Choose public/private system Evaluate level/type of care required 4.Moving Day Involve patients in process Furnish room with familiar articles, chosen by patient 5.Adjustment to Placement Family should visit regularly Modify family caregiving role 6.Impact of Placement Positive for patient Less benefits for caregiver; depression, physical symptoms, loss of informal supports, stress Alzheimer s disease (AD), there will be a greater need for the relocation of dementia sufferers. 5 The placement process is complex, 6,7 and involves numerous stages as well as disease-related and social factors. 2,8 The interplay between patient and caregiver characteristics 9-13 and the services and social supports available to the family 14 will predict nursinghome placement. Predictors For Placement Patient characteristics. Researchers have identified several factors associated with nursinghome placement of people with dementia. These include severity Healthcare professionals must recognize that there are no right or wrong feelings, and that their role is to acknowledge these feelings and help caregivers manage them in a positive and healthful way. of cognitive impairment (i.e., language disability, memory loss and other cognitive functions), 9,12 dependency in activities of daily living, behavior changes (such as agitation, restlessness, sleep disturbances and night wandering), 12 delusion, depression, 15 incontinence 10 and living alone. 16 A combination of behavior disorder and functional impairment predispose dementia patients to nursinghome placement. 15 Caregiver characteristics. Caregiver coping strategies, 14 sense of burden 17 and level of stress culminating in fatigue and strain, 9 physical and mental well-being, 14 and level of satisfaction derived from the caregiving role 14 are some factors which may influence the decision to institutionalize a loved one. The caregiver s wish to leave the care to someone else 11 also is associated with nursing-home placement. Supports and services available to the family 18 may not be sufficient to palliate the burden of care required by the AD patient as the disease progresses. Even the most determined families may turn to placement when their loved ones care requirements become excessive. While not every factor described above will predict nursing-home placement, the complex interaction between them will result in institutionalization. 14 Stages in the Placement Process From various factors that precipitate placement to planning the move and coping with the change, the placement process can be broken down into several standard stages (Table 1). These stages are explained in detail below. Stage 1 - Precipitating factors. The timing of the decision to place varies from family to family. For some, placement 12 The Canadian Alzheimer Disease Review July 2000

12 occurs when keeping the patient at home becomes too difficult and the family is unable to sustain the caregiving. 2,3,8 Caregivers who suffer from burnout and experience health decline or mental fatigue may turn reluctantly to the professional formal network to seek assistance for long-term care. 2,8 Placement may occur when home-care recipients become acutely ill and are hospitalized. 3 Caregivers may realize how the strain of caregiving has affected them, and may feel relief when no longer required to provide 24- hour care. In other cases, placement becomes a necessity when caregivers become ill or die. Stage 2 - Preparing for the move. Ideally, it is preferable to anticipate the move to a nursing home, and to plan for it accordingly. 2,8 About one year may elapse between the introduction of the idea and the actual relocation to a nursing home. It is important to involve the patient in this relocation process, to the extent that this is feasible. 2 Adjustment to the new environment is easier if the patient is involved in the relocation process It may be necessary to deal with the patient s feelings of sadness, loss, separation, and anger when preparing for placement. 2 Stage 3 - Searching for a home. The term "nursing home" is used for a wide variety of substitute care facilities, from those that provide some care to those that provide a great deal. Two parallel systems, the privately and the publicly funded, exist. To select the type of facil- Table 2 SELECTING A SUBSTITUTE CARE FACILITY a) Determine the level of care the patient requires Multidisciplinary pre-placement assessment b) Evaluate the facility Medical and nursing care? Nutrition? Location? Type of license? Staff trained for AD patients? Activities geared towards AD patients? Social workers and/or therapists available? c)assess financial costs of the facility Private or public? ity that best meets the needs of the patient, the following procedure (Table 2) should be implemented: 2,8 a) Determine the level of care the patient requires (a multidisciplinary pre-placement assessment). b)evaluate the nursing home, including such aspects as the medical and nursing care, nutrition, location and type of license it holds. It is critical to assess whether the home has designed its environment to respond to the special needs of AD patients. For example; Are the staff trained to understand these special needs, and are the activities designed to respond to these needs? Will the home restrict or liberate the patient? Are there social workers and occupational, physical and recreational therapists on staff or available for consultation? c) Assess the financial costs of the facility, and decide whether the placement will be in the private or public system. Each system has its advantages and disadvantages. In the private sector, access is quicker and there is a greater choice of nursing homes. However, the quality and range of services will be linked to the cost, which may be prohibitive. Following placement, family members should be reassured that their caregiving role is not at an end, and that they must assume new roles. Access to public institutions can be difficult because of restrictive criteria and long waiting lists, but the cost is geared to any income (i.e., usually with caps on upper limits of fees and lower limits determined by the value of public pension) and the quality is more likely assured because of government standards. The Canadian Alzheimer Disease Review July

13 Stage 4 - Moving Day. As discussed above, it is preferable to involve patients, to the best of their ability to participate, in planning the move and in the move itself. Patients should be told where they are going. The room should be furnished with familiar articles, and the patients should select items they would like to take with them. 19 It is important to remain matter-of-fact during this time, even if the patient expresses anger and hostility about the move. Caregivers must remember that the relocation is necessary for the well-being and safety of both the afflicted individual and themselves. 8,l2 Stage 5 - Adjustment to placement. It will take some time for the patient and the caregiver to get used to the placement. The family should be encouraged to visit regularly. Placement should not be viewed as the end of family relationships. Following placement, family members should be reassured that their caregiving role is not at an end, and that they must assume new roles. Although caregivers no longer provide direct care, they retain responsibility for the patient, and should be seen as partners in care provision within the substitute care environment. 5 Stage 6 - Impact of placement. Available data suggest that placement may be positive for the care recipient. 2,21-23 It is less clear that there are benefits to the caregiver. 24 An environment designed expressly for AD patients can help to restore or maintain remaining mental and physical functioning of the patient. Moyra Jones reports that the outcomes of the Gentlecare TM Prosthetic Life Care Systems are improved levels of functioning, greater participation in self-care, increased The professional may need to give "permission" to caregivers who feel reluctant to relinquish caregiving in favor of placement. socialization, a reduction in disruptive behavior and improved family comfort and participation in care. 24 Baumgarten et al 24 reported that, although caregivers were no longer responsible for the hands-on care of their loved ones following institutional placement, they were more likely to experience an increase in depressive and physical symptoms. Colerick and George 18 noted increased use of stress-reducing drugs amongst caregiving daughters after they relinquished care of their relatives. Some also lost their informal supports immediately prior to and following their loved ones institutionalizations. These findings underscore the importance of including the family in planning for the transition to the new environment and in assisting with the daily routines of their loved ones. Such actions will promote adjustment to the placement for the care recipient and the development of a new role for the caregiver. Role of the Professional Healthcare professionals must note the impact of the placement decision on caregivers and provide support, guidance and reassurance to them at every stage of the process. 2,3,5,8 The caregiver and/or family should be evaluated at the same time as the patient to assess the level of stress generated by caregiving. 14 The level of caregiver distress will be related to the type of relationship the caregiver and patient have had, the extent of caregiving tasks taken on by the caregiver, and the physical and emotional impact of caregiving. Healthcare professionals must recognize and understand this relationship within the context of the caregiving role in order to be helpful to both the patient and the caregiver. Assessing the adequacy of informal and formal supports and services available for homecaregiving is a key element in the evaluation of the patient and family. Following a comprehensive evaluation, the professional should review options for, and alternatives to, maintaining the patient at home. The professional may need to give "permission" to caregivers who feel reluctant to relinquish caregiving in favor of placement. Caregivers should be referred to social workers and community health clinics for assistance in navigating the complex placement system. 3 This support does not end at the point of placement, and must continue as the patient and caregiver adjust to the new living arrangement. 14 The Canadian Alzheimer Disease Review July 2000

14 The placement decision is never an easy one. It can be extremely distressing, however, if it is precipitated by a sudden deterioration in the patient s health or a change in the status of the caregiver. In these cases, neither the patient nor the caregiver has had the opportunity to pass through the stages of the placement process at an acceptably slow pace. Instead, the process is compressed into a short period of time, causing much pain in addition to the multitude of other feelings described earlier. Healthcare professionals must be especially sensitive to the added emotional impact of such crises, and remember to support both the patient and the caregiver as they struggle to adjust. Conclusion Professionals deal with nursinghome placement on a daily basis. For the caregiver, however, it usually is a first-time experience. 3 Caregivers have much to learn about the placement process while coping with the range of feelings provoked by such a major life event. With proper attention to the needs of their patients and an understanding of the many emotions attached to the placement process, healthcare professionals can assist in mediating that journey. References 1. Cath SH. The geriatric patient and his family: the institutionalization of a parent - a nadir of life. J Geriatr Psychiatry 1972; 5: Mace NL, Rabins PV. The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer s Disease, Related Dementing Illnesses, and Memory in Later Life. The Johns Hopkins University Press, Baltimore, McAuley WJ, Travis SS, Safewright, MP. Personal accounts of the nursing home search and selection process. Qualitative Health Research 1997; 7(2): Nydegger CN. Family ties of the aged in cross-cultural perspective. The Gerontologist 1983; 23(1): Becker R, Lindesay J. Institutional Care. In: Gauthier S (ed). Clinical Diagnosis and Management of Alzheimer s Disease. Martin Dunitz, London, Gonyea JG. The family and dependency: factors associated with institutional decision-making. J Gerontological Social Work 1987; 10: Groger L. Decision as process: a conceptual model of Black elders nursing home placement. J Aging Studies 1994; 8: Silverstone B, Kandel Hyman H. You and Your Aging Parent: The Modern Family s Guide to Emotional, Physical, and Financial Problems. Pantheon Books, New York, Heyman A, Wilkinson WE, Hurwitz BJ, et al. Early-onset Alzheimer s disease: clinical predictors of institutionalization and death. Neurology 1987; 37: O Donnell BF, Drachman DA, Barnes HJ, et al. Incontinence and troublesome behaviours predict institutionalization in dementia. J Geriatr Psychiatry Neurol 1992; 5(January - March): Haupt M, Kurz A. Predictors of nursing home placement in patients with Alzheimer s disease. Int J Geriatr Psychiatry 1993; 8: Bannister C, Ballard C, Lana M, et al. Placement of dementia sufferers in residential and nursing home care. Age and Ageing 1998; 27: Severson MA, Smith GE, Tangalos EG, et al. Patterns and predictors of institutionalization in community-based dementia patients. Journal of the American Geriatrics Society 1994; 42: Jerrom B, Mian I, Rukanyake G. Stress on relative caregivers of dementia sufferers, and predictors of the breakdown of community care. International J Geriatr Psychiatry 1993; 8: Steele C, Rovner B, Chase GA, et al. Psychiatric symptoms and nursing home placement. Am J Psychiatry 1990; 147: O Connor DW, Pollitt PA, Brook CPB, et al. Does early intervention reduce the number of elderly people with dementia admitted to institutions for long term care? British Medical Journal 1991; 302: Tsuji I, Whalen S, Finucane E. Predictors of nursing home placement in community-based long-term care. Journal of the American Geriatrics Society 1995; 43: Colerick EJ, George LK. Predictors of institutionalization among caregivers of patients with Alzheimer s disease. Journal of the American Geriatrics Society 1986; 34: Wilson SA. The transition to nursing home life: a comparison of planned and unplanned admissions. J Adv Nurs 1997; 26: Krichbaum K, Ryden M, Snyder M, et al. The impact of transition to nursing home on elders cognitive status, wellbeing, and satisfaction with nursing home. J Mental Health and Aging 1999; 5(2): Grant PR, Skinkle RR, Lipps G. The impact of an interinstitutional relocation on nursing home residents requiring a high level of care.the Gerontologist 1992; 32(6): Kennedy Holzapel S, Powley Schoch C, Dodman JB, et al. Responses of nursing home residents to intrainstitutional relocation. Geriatric Nursing; 34(July/August): Jones Moyra. Gentlecare TM : Changing the experiences of Alzheimer s disease in a positive way. Hartley and Marks Publishers Inc., Vancouver, Baumgarten M, Hanley JA, Infante- Rivard C, et al. Health of family members caring for elderly persons with dementia. Ann Intern Med 1994; 120: The Canadian Alzheimer Disease Review July

15 A Caregiver Satisfaction Survey of TriAD TM A large part of the TriAD program is aimed at informing and empowering Alzheimer patients and caregivers to best cope with and manage this devastating disease. This article looks at the results of a caregiver satisfaction survey of TriAD participants, and examines what those results mean about the future of this important initiative. by Linda LeDuc, RN, BA Ms. Leduc is a consultant in project development and Alzheimer care. TriAD helped us understand the disease and start preparing for the future. Those were the words of one of the 150 caregivers who responded to the TriAD Program Survey. TriAD is a disease management program aimed at providing information and resources on Alzheimer s disease (AD). It was developed to address the needs of the three key participants in every AD case (the patient, caregiver and healthcare professional) to help them recognize the symptoms and manage the day-today challenges of the disease. Developed by an expert panel with the Alzheimer Society of Canada and financed by an educational grant from Pfizer Canada, TriAD provides information and resources to physicians and other healthcare professionals to help make and communicate AD diagnoses. In addition, the program offers practical information and guidance for patients and caregivers as they begin to learn to live with this devastating disease. At the time of diagnosis, physicians provide the program s Welcome Kit to patients and family members. The kit includes the TriAD brochure, a video and workbook entitled The Alzheimer Journey: The Road Ahead (Module 1), and a business reply card to receive a series of five information bulletins called Day by Day. These bulletins guide patients and caregivers through the first nine months following diagnosis, with information on living and coping. Each bulletin is devoted to a specific issue regarding the disease, with several sub-topics within each issue (Table 1). The video discusses the early stages of the disease, and how to The Canadian Alzheimer Disease Review July

16 Table 1 DAY BY DAY BULLETINS: ISSUES AND TOPICS Issue / Program Timeline Topics Issue 1: Responding to AD (At enrollment) Responding to the news of AD A family affair What is AD? Should you be the one? Remaining independent Issue 2: Getting Organized (At week 6) Helping children adjust Adapting to the role of caregiver Is it time to move? Putting the legal paperwork in order Watch for the signs of depression Making the home a better place to live Everyday life Issue 3: Learning to Communicate (At week 12) How to communicate effectively Where to go for help Driving: knowing when to stop Living at a distance Your healthcare team The importance of exercise Telling friends and neighbors Chasing down important papers Issue 4: Coping with AD (At week 24) The ABC s of behavior management Keeping active Intimate relations: Adjusting to change How to handle wandering The Alzheimer Wandering Registry Eating well Fear of embarrassment Issue 5: Handling Caregiver Stress (At week 36) How to handle caregiver stress Introducing new people and situations Participating in research Is it time to move to a long-term care facility? Keeping healthy You are not alone 18 The Canadian Alzheimer Disease Review July 2000

17 come to terms with the diagnosis. Its emphasis is on managing the disease early so the patient can be involved in the personal, financial and health-related issues that will need to be considered. The video focuses on real-life experiences of individuals and caregivers. The accompanying workbook expands on the subjects discussed in the video, and gives patients and their caregivers a checklist of questions to address when planning for the future. Survey Methodology In June 1999, a survey about the program was mailed to caregivers who registered with TriAD. The objectives of the survey were to understand how the resource was being used and to determine how helpful it was to caregivers, with the intention of using the information obtained for future development of the program. The 28-question survey was sent to approximately 700 patients and caregivers who had voluntarily enrolled in TriAD. Of the participants who received the survey, 150 (21%) responded. Results The majority of respondents said they became aware of TriAD through their physicians (36% from specialists and 27% from family doctors). Over 60% of respondents completed and sent the enrollment card within one week of receiving their Welcome Kit. The resources. Ninety-two per cent of respondents said they had watched the video. Of those, 89% found it helpful. Some respondents commented that hearing the caregivers in the video talk about their experiences was very helpful. Others found the statements made by the individual AD particularly eye-opening. Eighty-two per cent of respondents said they had read the booklet. Of these, 92% found the information helpful. Some commented that the booklet helped them to plan for the future. Others stated that the practical tips were easy to follow. Ninety-two per cent of respondents read the bulletins, which 95% found helpful. Comments on the bulletins included that they were easy to read, contained very practical tips and left caregivers feeling that they were not alone and that help was available. Those who did not find the video, booklet or bulletins helpful said there was nothing new in these resources. They seemed to have been well informed on AD and how to give care. It is possible that some of these respondents did not receive the TriAD Welcome Kit immediately after diagnosis, but only later in the disease process. It also is possible that the program is less useful for caregivers who already are knowledgeable about AD, compared to caregivers of recently diagnosed individuals. When asked their preference regarding format of program material, 47% of respondents preferred bulletins, 27% preferred videos, and 25% preferred booklets. Overall, respondents rated the TriAD program and each of its resources between four and five on scale of one to five, with one being poor and five being excellent (Figure 1). Sharing the Resource. Eighty per cent of respondents said they Overall, respondents rated the TriAD program and each of its resources between four and five on a scale of one to five, with one being poor and five being excellent. had shared the information from TriAD. Forty-four per cent said they had shared the resources with more than four people. The future. Seventy per cent of the caregivers said they still needed more information on AD. Ninety-one per cent would be interested in receiving additional Day by Day bulletins. Thirtysix per cent of these respondents said they would like to see information on new treatment developments in in future bulletins, while 32% said they would be interested in reading about new developments in research and 17% said legal information would make for interesting bulletin content. The Alzheimer Society. Participants were asked if they contacted the Alzheimer Society after receiving the TriAD program. Forty-four per cent said they did not contact the Society, and 28% said they already were in contact with their local Society. The Canadian Alzheimer Disease Review July