Parkinson's disease: Prevalence, diagnosis and impact

by Suzy L. Wong, Heather Gilmour and Pamela L. Ramage-Morin

Parkinson’s disease is the second most common neurodegenerative disorder after Alzheimer’s disease.Note 1 It results from the loss of cells in the brain that produce dopamine, a chemical that controls the body’s movements. As dopamine decreases, tremors can develop, muscle movements become slower and more rigid, and reflexes become impaired contributing to a loss of balance. Other symptoms may include depression, anxiety, emotional changes, cognitive impairment, difficulty swallowing, chewing and speaking, masked facial expressions, urinary problems, constipation, fatigue, and sleep problems. Parkinson’s disease is a chronic, progressive disorder, meaning that symptoms continue and worsen over time. The cause is unknown, and although there is currently no cure, medications and other treatment options are available to manage its symptoms.

This study presents two prevalence estimates of Parkinson’s disease. The first is for the population in private households and is based on data from the 2010/2011 Canadian Community Health Survey. The second is for the population in long-term residential care facilities and is based on data from the 2011/2012 Survey of Neurological Conditions in Institutions in Canada (see The data). The detailed analyses are based on data from the 2011 Survey of Living with Neurological Conditions in Canada and pertain to people who lived in private households. The time from symptom onset to diagnosis was estimated for everyone with Parkinson’s. The social, financial and physical impacts and the characteristics of caregivers were examined for people with Parkinson’s, but not any of the other neurological conditions covered in the survey.

Prevalence of Parkinson’s disease

An estimated 55,000 Canadians aged 18 or older living in private households reported that they had been diagnosed with Parkinson’s disease. This represented 0.2% (95% CI: 0.2%, 0.3%) of the household population, unchanged from the 2000/2001 CCHS prevalence estimate.Note 6 As well, 12,500 residents of long-term residential care facilities—4.9% (95% CI: 4.8%, 5.0%)—reported a Parkinson’s diagnosis. Among the household population, 79% with Parkinson’s were 65 or older; in institutions, almost everyone (97%) with the condition was 65 or older.

Overall, men were more likely than women to have Parkinson’s disease: 0.3% versus 0.2% (p < 0.05) for those in private households, and 6.6% versus 4.0% (p < 0.05) for residents of institutions.

In general, the prevalence of Parkinson’s disease increased with age, although in the institutionalized population, prevalence decreased in the oldest age group (Figures 1 and 2). This may reflect greater disease severity and higher mortality among older people in institutions compared with those in private households.Note 7 As well, being male and the presence of symptoms such as severe motor impairment, psychosis and dementia have been associated with earlier death among people with Parkinson’s.Note 8

From symptoms to diagnosis

The average age at which people first experienced symptoms was 64.4 years, with a diagnosis of Parkinson’s 1.9 years later at 66.2. The period between symptom onset and diagnosis was longer for younger people—an average of almost 7 years (Table 1). Physicians may initially rule out Parkinson’s in younger people, since it predominantly affects older adults.Note 9

Interactions with others

Considerable numbers of people with Parkinson’s reported feeling embarrassed by the condition (43%) or left out of things (29%). Some perceived that others were uncomfortable with them (28%) or avoided them (19%). More than half (58%) reported that they had at least one of these concerns (Figure 3).

Out-of-pocket expenses

Almost two-thirds (61%) of people with Parkinson's reported out-of-pocket expenses during the past 12 months as a result of the condition—expenses that would not be reimbursed by insurance or government programs. Most people with Parkinson’s took prescribed medication for the condition (94%), but just 47% of them reported that they incurred out-of-pocket expenses for their medications (prescribed or over the counter) (Figure 4). It is possible that they did not count or remember expenses such as dispensing fees, insurance deductibles, or the costs of non-prescription medications. Close to half (46%) of those who reported out-of-pocket medication expenses in the past 12 months indicated that these amounted to $500 or more.

In addition to medications, substantial percentages of people with Parkinson’s disease incurred out-of-pocket expenses for assistive devices (23%) such as mobility and agility aids, rehabilitation therapy (18%) such as physical and speech therapy, and home care (15%) including health care, homemaker and other support services. Almost half (45%) of those with out-of-pocket expenses for assistive devices or rehabilitation therapy reported that these expenses amounted to $500 or more in the past 12 months. And although just 15% reported expenses for home care, 67% of this group spent at least $500.

Assistance

In the previous 12 months, 56% of people with Parkinson’s disease received formal and/or informal assistance at home, work, or school because of their condition. The types of assistance most frequently reported were help with activities such as housework, home maintenance or outdoor work (80%); emotional support (77%); transportation including trips to the doctor or for shopping (70%); and meal preparation or delivery (64%). Fewer needed assistance with personal care such as eating, dressing, bathing or toileting (57%); making appointments or managing personal finances (53%); or medical care such as taking medicine or nursing care (39%). Previous research has shown that seniors who need assistance with personal care are more likely to live in institutions.Note 10

Caregivers

Among those who received assistance because of Parkinson’s disease, 84% relied at least in part on family, friends or neighbours.  Referred to as “informal” assistance, or caregiving, this is distinguished from “formal” assistance provided by organizations with paid or volunteer workers. Sources of assistance may be influenced by the availability of caregivers and volunteer and paid services, as well as financial resources. More than half (56%) relied solely on informal assistance.

The main caregiver was typically a woman (62%), lived in the same household (72%), and provided assistance on a daily basis (76%) (Table 2). For the most part, the recipient’s spouse was the main caregiver (64%). On average, spouse caregivers were aged 69; 22% were employed at a job or business. Main caregivers who were other family members, friends or neighbours were younger—52, on average (p < 0.05); 66% of them were employed full or part time.

Conclusion

This study highlights the prevalence and impact of Parkinson’s disease in Canada. An estimated 0.2% of adults in private households and 4.9% of those in residential care facilities had the condition. Younger age of symptom onset was associated with a longer period to disease diagnosis. More than half of people with Parkinson’s reported that it negatively affected their social interactions, and almost two-thirds reported out-of-pocket expenses as a result of the condition. Spouses were the primary caregiver for the majority of people with Parkinson’s. Most caregivers provided assistance on a daily basis.

Acknowledgements

Statistics Canada thanks all participants for their input and advice during the 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 input from PHAC’s expert advisory group members who specialize in the study of neurological conditions. Content was selected 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.

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