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Guest Editorial
Geriatric Psychiatry: A Subspecialty Whose Time Has Come
Nathan Herrmann
(PDF)

Special Geriatric Psychiatry Section
Canadian Outcomes Study in Dementia: Study Methods and Patient Characteristics
Robert Sambrook, Nathan Herrmann, Réjean Hébert, Peter McCracken, Alain Robillard, Doanh Luong, Amanda Yu
(PDF)

Exploring the Links Between Depression, Integrity, and Hope in the Elderly
William T Chimich, Cheryl L Nekolaichuk
(PDF)

Driving and Dementia in Ontario: A Quantitative Assessment of the Problem
Robert W Hopkins, Lindy Kilik, Duncan JA Day, Catherine Rows, Heidi Tseng
(PDF)

GABAergic Function in Alzheimer’s Disease: Evidence for Dysfunction and Potential as a Therapeutic Target for the Treatment of Behavioural and Psychological Symptoms of Dementia
Krista L Lanctôt, Nathan Herrmann, Paolo Mazzotta, Lyla R Khan, Neil Ingber
(PDF)

Surrogate Decision-Making: Special Issues in Geriatric Psychiatry
Carole A Cohen
(PDF)

Defining Best Practices for Specialty Geriatric Mental Health Outreach Services: Lessons for Implementing Mental Health Reform
Mary Pat Sullivan, Linda Kessler, J Kenneth Le Clair, Paul Stolee, Whitney Berta
(PDF)

Review Paper
Preventing Postpartum Depression Part I: A Review of Biological Interventions
Cindy-Lee E Dennis
(PDF)

Original Research
Suicidal Ideation in Inpatients With Acute Schizophrenia
Vassilis Kontaxakis, Beata Havaki-Kontaxaki, Maria Margariti, Sophia Stamouli, Costas Kollias, George Christodoulou
(PDF)

The RCPSC Oral Examination: Patient Perceptions and Impact on Participating Psychiatric Patients
Philip Tibbo, Kelly Templeman
(PDF)

Brief Communication
Symptoms Defined by Parents’ and Teachers’ Ratings in Attention-Deficit Hyperactivity Disorder: Changes With Age
Bedriye Öncü, Özgür Öner, P1nar Öner, NeÕe Erol, Ayla Aysev, Saynur Canat
(PDF)

Book Reviews
(PDF)

The Therapist’s Notebook for Families: Solution-Oriented Exercises for Working With Parents, Children, and Adolescents
Review by
Lance Taylor, Karl Tomm

Implementing Early Intervention in Psychosis: A Guide to Establishing Early Psychosis Services
Review by
George Voineskos

Dementia: Presentations, Differential Diagnosis, and Nosology. 2nd ed.
Review by
Matthew Robillard

Letters to the Editor
(PDF)

Mirtazapine-Induced Shopping Spree

Age at Onset of Bipolar II Disorder

Venlafaxine-Associated Hypomania in Unipolar Depression

Hypnopompic Hallucinations During Olanzapine Treatment

Atypical Neuroleptic Malignant Syndrome Caused by Clozapine and Venlafaxine: Early Brief Treatment With Dantrolene

A Case of de Clérambault Syndrome in a Male Stalker With Paranoid Schizophrenia

Calcitonin Treatment for Phantom Limb Pain

The Use of Atomoxetine Adjunctively in Fibromyalgia Syndrome
Re: Autism—Its Detection, Causes, and Treatment

Special Geriatric Psychiatry Section

Canadian Outcomes Study in Dementia: Study Methods and Patient Characteristics

Robert Sambrook, MSc¹, Nathan Herrmann, MD, FRCPC², Réjean Hébert, MD, MPhil³, Peter McCracken, MD, FRCPC⁴, Alain Robillard, MD, FRCPC⁵, Doanh Luong, BSc (Pharm)⁶, Amanda Yu, BSc⁷

In 1991, the Canadian Study on Health and Aging (CSHA) determined that 316 500, or 1 in 13, Canadians over age 65 years are affected by Alzheimer’s disease (AD) and related dementias (1). The age-standardized rate of dementia ranged from 2.4% among those aged 65 to 74 years to 34.5% among those aged 85 years and over, with the overall ratio of women to men being 2:1 (1). By 2021, the health care system and affected families will likely have to care for over 500 000 Canadians with dementia. If prevalence estimates remain constant, this will further increase to over 750 000 patients by the year 2031 (2). Regionally, the estimated number of persons with dementia (among those aged 65 years or over) ranged from 23 600 in the Atlantic Provinces to 90 200 in Ontario. In the CSHA study population, 64% of all patients suffered from AD and 19% suffered from vascular dementia. Approximately one-half the remaining 17% had no identified cause.

The cognitive degeneration and associated personality changes that characterize dementia drastically reduce patients’ ability to perform routine activities, learn new information, work, or carry out normal social activities. Further, significant psychological comorbidity, including depression, psychosis, and other behavioural disturbances, often accompanies dementia (3). As a result, dementia carries an enormous socioeconomic burden. The estimated annual cost of dementia in Canada is over $3.9 billion, ranking third only in the cost to heart disease and cancer. This includes direct costs, such as paid medical and social services, and indirect costs, such as the unpaid services provided by family and the loss of productivity in the workplace (4). With the increasing age of baby boomers and the projected increase in the number of dementia patients in the next few decades, the cost of treating and managing dementia patients is of significant interest.

The CSHA has provided valuable information on the epidemiology and etiology of dementia. Since its completion, new pharmacologic therapies for dementia, such as cholinesterase inhibitors, have demonstrated a role in delaying the cognitive decline seen in patients with AD. Although these new drugs provide promise and choices in the management of AD patients, they raise several questions about whether their clinical benefits are sustained in longer-term use and whether their effects are symptomatic or disease-modifying (5). At present, the longest randomized controlled trials (RCTs) are 1 year in duration. Though there are open extension studies for 1 to 3 years, these studies provide limited information on patient characteristics, which restricts comparability among different patient subgroups and limits the generalizability of study findings to the wider patient population, including those seen in general practice. Moreover, there are many unanswered questions concerning the human, social, and economic costs of the disease. Further research is required to establish the diagnostic, demographic, and functional factors associated with important outcomes such as behavioural decline or the risk of institutionalization (6,7). There are very little data on how treatment varies across regions and among care-setting types, including the associated variation in costs. Any strategic planning of dementia care in Canada requires a greater understanding of current practice across the provinces, which is best achieved through broad-based epidemiologic research (5).

Objectives

By collecting clinical, treatment, health status, and economic data, this longitudinal study examines the current management and outcome of 750 patients with dementia. We examine the links between demographic variables, prognostic features, care-setting types, and treatment options. We also examine clinical, economic, and health-status (that is, activities of daily living and caregiver impact) outcomes. This practice-based approach is increasingly widely used. It is a useful tool for elucidating the relative effectiveness of different management strategies and for exploring the relations between patient characteristics, treatments, care settings, and outcomes (8). Here we present the study methodology and the characteristics of the patient population at the time of enrollment. We describe the patterns of resource use as well as the costs and outcomes of treatment across 5 Canadian regions and between academic and community care settings.

Methods

Study Design and Organization
We used a modified, nonprobabilistic cluster sampling method to conduct this prospective, pharmacoepidemiologic (9) study at 31 academic and community sites across Canada. We obtained informed consent from both the patient and the patient’s designated caregiver. Each patient and caregiver was interviewed every 6 months for a total of 36 months. Clinical data were collected directly from the principal care site and were obtained either from electronic forms on a secure Web site or by fax, which was sent directly to an optical character recognition system. Resource use data were collected predominantly from the patient’s caregiver, with or without the patient’s direct involvement. To maximize accuracy, compliance, and uniformity of data among investigators, each site received training over the telephone in correct completion of the data collection forms. Each site was provided with detailed written data entry guidelines. The study underwent ethical review by local boards and scientific review by a panel of 4 experts in Canadian dementia research. The review panel members also served as an advisory committee to the study. At key stages, joint meetings were held between the advisory committee and sponsor representatives.

Participating Sites
From the 5 major regions of Canada (that is, British Columbia, the Prairies, Ontario, Quebec, and the Atlantic provinces), we selected 31 sites to represent the range of clinical practice settings and populations across Canada and within each region. We defined sites according to size and location. Type 1 was predominantly academic or tertiary and was located in a large urban centre. Type 2 was predominantly community-based or primary.

Eligibility Criteria
To be registered in COSID, patients were required to be aged 60 years or over, with a diagnosis of dementia according to DSM-IV criteria (5), and with early or mild disease severity (that is, Global Deterioration Score of < 5). All patients were required to be fluent in either English or French. We excluded patients living full-time in an institution at the time of enrollment. Both the patient and a designated caregiver provided written informed consent to participate.

Differential Diagnosis
The National Institute of Neurological and Communicative Diseases and Stroke–Alzheimer’s Disease and Related Disorders Association criteria (10) were used to make a differential diagnosis of AD, the National Institute of Neurological Disorders and Stroke–Association Internationale pour la Recherche et l’Enseignement en Neurosciences criteria were used to make a diagnosis of vascular dementia (11), the Lund-Manchester criteria were used to make a diagnosis of frontotemporal dementia (12), and the Consortium on Dementia with Lewy bodies consensus guidelines were used to diagnose dementia with Lewy bodies (13). We provided all participating sites with copies of these consensus papers or guidelines.

Data Collection
Clinical Data. The following information was collected at baseline: site information, including resources available through the site such as home support, respite care, or caregiver support; patient information, including date of birth, height, weight, sex, marital status, ethnicity, income, level of education, and type of residence; diagnosis by DSM-IV criteria, including subtype of dementia (if applicable) and method and result of brain imaging (if performed); all previous hospitalizations owing to unconsciousness; and reasons why the patient sought treatment and who prompted treatment seeking.

At baseline and every 6 months, we collected full information regarding the dosage, unit, frequency, and dates of the following types of medication: antidementia; behaviour modifiers and antipsychotics; nonsteroidal antiinflammatory drugs (NSAIDs); estrogen; vitamins C, E, and B12; and herbal preparations for dementia. All other medication types were recorded only if they were being taken at the time of registration or of a follow-up visit. We also collected information concerning patients’ clinical history, all ongoing comorbid conditions, adverse drug reactions, overall level of caregiver and physician satisfaction with treatment (taken at follow-up only), and patient driving status (that is, never drove, quit driving, or still driving). At baseline and every 6 months, we recorded global, cognitive, behavioural, and functional status, using the GDS (14), the Modified Mini-Mental State Examination (3MS) (15), the Neuropsychiatric Inventory (NPI) (16), and the Functional Autonomy Measurement System (SMAF) (17), respectively. We recorded caregiver burden, using the Zarit Burden Interview (ZBI) (18). Depending on the preference of the patient or caregiver, validated English or French versions of each of the 5 instruments were made available. With supplementary questions included in the 3MS, it was possible to derive the Mini-Mental State Exam (MMSE) score.

Resource Use Data. A detailed resource-use questionnaire was completed monthly by the caregiver, with or without the patient’s assistance. The questionnaires were mailed directly to the central coordinating centre in prepaid envelopes. Included in the form were questions regarding the time spent in hospital and the frequency with which such community resources as home care nurses, meals on wheels, and respite care were used. Also included were questions concerning how often the caregiver and patient were prevented from carrying out usual work and leisure activities because of the dementia; this was used to estimate indirect costs of the disease. Questions were asked regarding the caregiver’s employment status, his or her relationship to the patient, and the patient’s level of coverage for prescription medications.

Queries and Quality Assurance
Queries were generated for missing, inconsistent, or illogical data on all clinical and assessment forms. Resource utilization (RU) forms were not routinely queried, because they were completed and submitted directly by the patients or caregivers. However, inconsistencies between the clinical and RU forms were flagged and resolved by each study site. Third-party review was carried out on 100% of the data submitted and processed. Additional manual data review captured within-patient inconsistencies in all forms, including the RU forms.

Resource and Medication Costs
A unit cost for each service collected on the RU form was taken from a detailed cost dictionary that was compiled by surveying many service providers for each item. Direct resource costs included inpatient costs (that is, stays in an intensive care unit or general hospital unit) and outpatient costs. Indirect costs were generated from the questions regarding how often the patient and caregiver were prevented from carrying out usual activities because of the disease. A unit cost of $102 daily was applied to this time. This cost is derived from Statistics Canada’s 1997 domestic help hourly wage (19), which was adjusted for inflation.

The drug-cost dictionary was compiled by taking unit costs from a British Columbia-based wholesale pharmacy 2000 price list. Mean monthly drug costs were calculated by establishing the total cost of each drug for each patient (according to the dosage, frequency, and duration of drug consumption) and dividing this total by the number of months the patient was in the study. The overall mean was derived from the total of all patients’ mean monthly costs divided by the total number of study patients. Thus, many factors contributed to the mean monthly drug cost, including the unit cost of the drug, the proportion of patients taking the drug, and the duration for which the drug was being taken. For example, an inexpensive drug taken by 90% of the patients for the entire time that each of these patients participated in the study would result in a mean monthly cost higher than that for a more expensive drug taken by 10% of the patients for an average duration of one-half the follow-up period. The same procedure is used for calculating the resource-use costs. Figures from British Columbia were used to calculate all drug costs and most resource costs. These figures have been applied across Canada. Therefore, province-specific costs reflect differences in resource or drug use rather than differences in unit costs among provinces.

Results

We recruited a total of 14 type 1 and 17 type 2 sites, with between 4 and 50 patients enrolled in each site (Table 1). A total of 766 patients were enrolled between August 2000 and March 2003.

Overall mean age at registration was 76.8 years, and mean age at onset of dementia was 73.1 years. The baseline characteristics of the patients are presented in Table 2. Of the total patients, 98% were white, 82% lived in their own home, 54% were female, and 43% reported a family history of dementia. Most patients were diagnosed with AD: 10% were aged under 65 years and diagnosed with early onset AD; 73% were aged 65 years and over and diagnosed with late onset AD. Of the 7% of patients with dementia labelled Other, most suffered from mixed dementia (that is, AD and vascular dementia).

The most common comorbid condition (> 40%) was hypertension. Depressive disorders and osteoarthritis were each present in over 20% of the COSID population. Comorbid conditions occurring in over 5% of patients are presented in Figure 1.

Figure 1   Comorbid conditions at baseline in over 5% of patients: academic vs community

Table 3 shows the GDS frequencies of the patients at baseline. Almost one-half the patients (48%) scored moderate on the GDS (that is, the patient has a deficit in areas such as knowledge of recent events, concentration, ability to travel, and ability to handle finances), and 16% were in the moderately severe category (that is, the patient has substantial memory loss and cannot survive without assistance). Overall SMAF scores averaged 18.30 (Table 4). Instrumental Activities of Daily Living, which captured patients’ ability to carry out such tasks as meal preparation, housekeeping, shopping, and budgeting, contributed the most to the total. The mean score of 1.40 across patients represents moderate disability (0 = no disability and 3 = total inability to carry out the activity). At baseline, the mean total NPI (that is, frequency multiplied by severity) was 9.5 (range 0 to 72). The mean baseline 3MS was 66.5 (range 3 to 97) with an MMSE score of 21.8 (range 3 to 30).

Tables 5 and 6 show the dementia diagnosis by site type and region, respectively. Table 5 also presents patients’ place of residence and patient-reported family history of dementia.

The major cost-driving resources of dementia were adult day care and home help, owing primarily to heavy service use rather than high unit costs (Table 7). There were few differences in resource use and costs between academic and community sites. However, some large differences emerged when resource use was compared among regions (Table 8). The most dramatic difference was the heavy use of home help in the Atlantic Provinces, which accounted for a mean monthly cost of $172, compared with $13 monthly in British Columbia and $31 in the Prairies. Home care nurses accounted for a cost of just $1 monthly in British Columbia and $38 monthly in the Prairies.