The data

Data sources

The study was based on the Neurological Conditions Prevalence File, which was derived from the 2010/2011 Canadian Community Health Survey – Annual Component, the 2011 Survey on Living with Neurological Conditions in Canada, and the 2011/2012 Survey of Neurological Conditions in Institutions in Canada. Detailed documentation for these surveys is available at www.statcan.gc.ca.

Canadian Community Health Survey

The Canadian Community Health Survey (CCHS) is a cross-sectional survey that collects health information for people aged 12 or older in private households, excluding full-time members of the Canadian Forces, and residents of institutions, Aboriginal settlements in the provinces, and some remote areas. Sample sizes/Response rates were 63,542/69.8% (2011) and 62,103/67% (2012). Data from 36,347 CCHS (2011) respondents 45 or older were analyzed to provide comparable estimates for the population who did not have dementia. Respondents who agreed to share their data with the survey’s share partners were included in the Neurological Conditions Prevalence File. The final sample size was 285,971. The response rate was 70.6%.

Survey on Living with Neurological Conditions in Canada

The 2011 Survey on Living with Neurological Conditions in Canada (SLNCC) was a cross-sectional survey that collected information for people aged 15 or older living in private households, excluding those previously described for the CCHS and residents of the three territories. The sample size was 4,569, with a response rate of 81.6%. This study used a subsample of 461 respondents (242 men, 219 women) aged 45 or older with dementia, representing an estimated 67,300 Canadians. Their average age was 78.7, and 56.6% were women.

Survey of Neurological Conditions in Institutions in Canada

The 2011 Survey of Neurological Conditions in Institutions in Canada (SNCIC) was a census to determine the number of people diagnosed with selected neurological conditions, including dementia, who lived in long-term residential care facilities with four or more beds and which were approved, funded or licensed by provincial/territorial departments of health and/or social services. The sample consisted of 4,245 institutions with a response rate of 63.5%.Note 1

Definitions

Respondents were asked to report on chronic neurological conditions (Alzheimer’s disease or any other dementia, amyotrophic lateral sclerosis, brain injury, brain tumour, cerebral palsy, dystonia, effects of a stroke, epilepsy, Huntington’s disease, hydrocephalus, migraine, multiple sclerosis, muscular dystrophy, Parkinson’s disease, spina bifida, spinal cord injury, spinal cord tumour, Tourette’s syndrome) that had lasted or were expected to last six months or more and that had been diagnosed by a health professional. The presence of other selected chronic conditions was similarly reported. Bladder and/or bowel incontinence were combined. Current high blood pressure was limited to those with the condition who had taken blood pressure medication in the past month. Heart disease, diabetes and mood disorder were established with single questions. Respondents were not classified as having diabetes if it had occurred only during pregnancy. Depression, bipolar disorder, mania and dysthymia were listed as examples in the mood disorder question.

Respondents were asked about specific types of assistance they received in the past 12 months at home, work or school because of their neurological condition.

The caregiver was the family member, friend or neighbour who had dedicated the most time and resources to providing informal assistance in the past 12 months. Spouse caregivers included married, common-law, same-sex partner, and ex-spouse relationships. Based on caregivers’ work status in the week before the interview, they were classified as currently working if they had worked at a job or been absent from work that week. The frequency of care from the caregiver was categorized as daily or less than daily. This refers to the frequency of care provided by the caregiver, not the total frequency of assistance received.

Statistical analysis included weighted frequencies, cross-tabulations and means. To account for survey design effects, standard errors and coefficients of variation were estimated using the bootstrap technique.Note 2Note 3

Limitations

Neurological and other chronic conditions were self-reported by individuals (household) or by proxy respondents (institutions) and not verified by another source. Only prevalence data were available for people in institutions. Most of the study pertains to the population in private households and does not represent people in long-term residential care facilities.

CCHS respondents were asked if they, or someone in their household, had been diagnosed with selected neurological conditions. People who were reported to have a neurological condition were selected to participate in the SLNCC and were asked again about the selected neurological conditions. A total of 314 respondents had dementia based on CCHS, but not based on the SLNCC. Conversely, 40 respondents did not have dementia based on the CCHS, but did based on the SLNCC. Additional details are available elsewhere.Note 4

References

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