Alzheimer’s disease and other dementias in Canada
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by Suzy L. Wong, Heather Gilmour and Pamela L. Ramage-Morin
Dementia is the most common type of neurodegenerative disorder.Note 1 In 2010, an estimated 35.6 million people worldwide were living with dementia, a number that is expected to double in 20 years.Note 2
Dementia is a general term used to describe a range of symptoms associated with a decline in mental function severe enough to reduce a person's ability to perform everyday activities.Note 3 It is caused by a variety of diseases and injuries that affect the brain. Alzheimer's disease is the most common, followed by vascular dementia, dementia with Lewy bodies, and frontotemporal dementia; individuals can also have a combination of different types of dementia.Note 4 Dementia mainly affects older people, but it is not a normal part of healthy aging.
Mental functions that may be impaired include memory, communication and language, ability to focus and pay attention, reasoning and judgment, and visual perception.Note 3 Emotional control, social behaviour and motivation may also deteriorate. As the condition progresses, the need for assistance increases, and eventually, almost constant supervision is required.
Thus, dementia may be overwhelming not only for those who have it, but also for their caregivers and families. The impact on caregivers, family, and society can be physical, psychological, social and economic.Note 3 Total estimated worldwide costs of dementia (direct costs such as medical and social care, and indirect costs such as unpaid caregiving by families and friends) were US$604 billion in 2010.Note 5
Estimates of the prevalence of dementia in Canada vary. According to a 2012 study commissioned by the Alzheimer’s Society of Canada,Note 6 747,000 Canadians were living with cognitive impairment, which included, but was not limited to, dementia. In a 2010 report,Note 7 the estimated prevalence of dementia alone was 500,000, based on previous studies in Canada and Europe. By contrast, based on administrative data from British Columbia,Note 8 the estimated prevalence in Canada in 2011 was 340,000.
Using data from nationally representative self-report surveys, this study examines Canadians aged 45 or older living with Alzheimer’s disease or other dementia (see The data). Separate estimates are presented for resident of long-term health care facilities (Survey of Neurological Conditions in Institutions in Canada) and for those living in private households (Canadian Community Health Survey Neurological Conditions Prevalence File). Additional details, including the types of assistance received and information about caregivers, are examined for people with dementia in private households.Note 9 For context, some characteristics are compared with other household populations—specifically, people without dementia (2011 Canadian Community Health Survey) and those with Parkinson’s disease, (Survey on Living with Neurological Conditions in Canada) the second most common neurodegenerative disorder.
Dementia in long-term residential care facilities
An estimated 45% (118,000) of people aged 45 or older in long-term residential care facilities had a diagnosis of dementia. Dementia was more common at older ages: 12% at ages 45 to 64, 42% at ages 65 to 79, and 56% at age 80 or older (Table 1).
In the older age groups, the number of women in long-term care with dementia substantially exceeded the number of men (Figure 1). This may reflect women’s longer life expectancyNote 10 or the lack of caregivers in the community.
Dementia in the household population
Among people aged 45 or older in private households, an estimated 0.8% (109,500) had a diagnosis of dementia. As was true in institutions, prevalence rose with age: 0.1% at ages 45 to 64, compared with 5% at age 80 or older (Table 1). Among those aged 45 to 75 with dementia, nearly all (99%) were not working—over half of them (54%) cited their neurological condition(s) as the reason.
The majority of household residents with dementia received formal or informal assistance. Formal assistance is provided by organizations with paid or volunteer workers; informal assistance, or caregiving, is provided by family, friends or neighbours. Among those with dementia, 85% relied, at least in part, on family, friends or neighbours for assistance—43% also received some formal assistance; the remaining 41% relied solely on informal assistance. An additional 15% received neither formal nor informal assistance. Sources of assistance may be influenced by the availability of caregivers, volunteer and paid services, as well as financial resources.
Informal assistance was provided for a variety of tasks (Figure 2). The vast majority of people with dementia received help with medical care such as taking medicine or nursing care (81%); housework, home maintenance or outdoor work (83%); meal preparation or delivery (88%); emotional support (90%); transportation including trips to the doctor or for shopping (92%); and managing care such as making appointments or managing personal finances (92%). Fewer needed help with personal care such as eating, dressing, bathing or toileting (58%). Previous research has shown that seniors who need assistance with personal care are more likely to move to institutions.Note 11
People with dementia often had other medical conditions that could increase their need for assistance and make caring for them more complex. Almost a third (32%) had at least one of the other neurological conditions that were examined in the survey; 63% had incontinence; and 53% had high blood pressure (Figure 3). Between a third and a quarter had heart disease, a mood disorder or diabetes.
People without dementia also have these conditions, although not to the same extent (Figure 3). For example, in 2011, 6% of the general population without dementia reported incontinence; the likelihood of a person with dementia having incontinence was 10-fold higher. Age contributes to these differences. Among people with at least one of the chronic conditions, those with dementia were, on average, almost 15 years older than those without dementia: 79 versus 65. When age was taken into account, those with dementia were significantly more likely to also have heart disease, a mood disorder, or incontinence, but were no more likely to have diabetes or high blood pressure than those without dementia (data not shown).
Usually, the primary informal caregiver for people with dementia was a spouse (46%) or an adult child (44%), typically, a daughter (71%) (Table 2). A smaller percentage of informal caregivers were other relatives, friends or neighbours (9%) (data not shown in table). Most spouse caregivers lived in the same household as the person with dementia (99%) and provided daily care (97%). Their average age was 74, and 15% were employed at a job or business. Among adult child caregivers, the majority (71%) lived in the same household as their parent and provided daily care (77%). Their average age was 54, and 60% were employed.
Similar percentages of those with dementia and Parkinson’s disease received informal care, mostly by caregivers in the same household who provided daily care.Note 12 However, the demands on caregivers of people with dementia were likely greater, since nearly twice as many received assistance with all seven types of tasks, compared to those with Parkinson’s (43% versus 22%, p < 0.05).
This study highlights the prevalence and impact of dementia in Canada. An estimated 0.8% of Canadians aged 45 or older living in private households, and 45% of those in long-term residential care facilities, had a diagnosis of dementia. Prevalence rose with age. Most people with dementia received assistance from family, friends or neighbours for a variety of tasks. Primary caregivers tended to be spouses or adult children, and nearly all caregivers provided care on a daily basis.
Statistics Canada thanks participants for their input and advice during development of the neurological content for the Canadian Community Health Survey, the Survey on Living with Neurological Conditions in Canada, and the Survey of Neurological Conditions in Institutions in Canada. The content was developed jointly by the Health Statistics Division at Statistics Canada and the Public Health Agency of Canada (PHAC), with significant input from PHAC’s expert advisory group members who specialize in the study of the neurological conditions. Content selection was based on objectives and data requirements specified by PHAC. Sponsorship was provided by PHAC as part of the National Population Health Study of Neurological Conditions.