Introduction
Over half a million Canadians live with dementia.1 This number is expected to nearly double by
2033.2 Dementia refers
to a group of symptoms associated with a progressive decline in cognitive function characterized by memory loss,
difficulties with thinking, behavior, language, and ability to perform everyday activities.3 While there
are many
different types and causes of dementia, Alzheimer’s disease (AD) is the most common cause.4
Unpaid, informal caregivers, typically family, friends, and neighbours play a vital role in the lives of people with
dementia while helping them reside safely at home and in their communities. During the current COVID-19 crisis, the
financial, physical, emotional, and mental health impacts on caregivers risk going unnoticed.
Challenges facing those living with dementia or AD
- Restricted access to in-person clinical services and diagnostic assessments means Canadians with mild cognitive
impairment (MCI) and early AD may have missed the opportunity for timely diagnoses and early therapeutic
interventions.5 MCI is characterized by a noticeable decline in cognitive abilities and associated with
an
increased
risk of developing AD or another dementia.6 The delays in access are expected to further challenge care
for these
patients in the future, especially if a disease-modifying therapy (DMT) targeting the early stages of AD becomes
available.
- Those living with dementia or AD have experienced a sudden loss of social supports, caregiver networks,
cancellation of daily services, and interruptions of routines. The pandemic contributed to further isolation,
worsening anxiety and depression, and overall poorer health in people living with dementia.7,8
- During the first wave of the pandemic, dementia or AD were identified as the most common comorbidities linked to
COVID-19 deaths.9
Caregiver challenges
- Thirty-five per cent of the Canadian workforce provides informal care to someone experiencing a long-term
health
condition such as dementia,10 with women between the ages of 35 and 44 making up a large portion of those
who care
for
someone with dementia.11 COVID-19 increased informal care demands affecting entire family systems and
compromising
the
balance of caregiving with paid employment and caring for young children.
- Employed caregivers, particularly women, must take time off work or significantly reduce their paid work
hours.
The societal disruptions associated with the pandemic exacerbated financial hardships and increased reliance on
women as mothers and as caregivers. Since the start of the pandemic, nearly 100,000 women exited the Canadian
labour
market entirely, compared to less than 10,000 men.12
- More than one in three Canadian caregivers experienced distress before the pandemic.13 Contributing
factors
included
providing nursing and medical care at home with limited instruction, navigating through complex and fragmented
health and social systems, and being substitute decision-makers.14
- Pre-pandemic, caregivers of people living with dementia provided an average of 26 hours per week of unpaid
care,
relative to 17 hours for seniors.15 Pandemic restrictions accentuated daily caregiver demands: 54% felt
it was
more
difficult to manage caregiving tasks as respite services were suspended and continue to be limited.16
Caregivers
are
enduring more intensive and constant care demands with no breaks contributing to burnout, distress, and reduced
functioning
Where do we go next?
The COVID-19 pandemic has exposed the systemic weaknesses prevalent within our health systems when it comes to caring
for society’s most vulnerable. Canada has not yet implemented large-scale structural changes to health systems that
are needed to address the gaps in dementia care revealed by COVID-19. Despite launching a Canada-wide dementia
strategy in 2019, no progress has been made on the strategy’s priority areas. There is now an even greater need to
urgently act on these priorities.
As Canada’s population continues to rapidly age, greater investment in creating an infrastructure for optimizing home
and community care services is essential. This includes timely diagnosis and early interventions for MCI and AD to
alleviate caregiver demands. Canada’s health systems are currently lacking in this regard. Timely diagnosis and
treatment can improve the prognosis of patients with dementia and enhance the health and wellbeing of their
caregivers. As the prospect of a DMT for treating early-stage AD is looming, building an infrastructure that can
effectively support access to such therapies ought to become a parallel priority.
Acknowledgement
This research was made possible through the financial support of Biogen Canada.
1 Alzheimer Society (2016), “Prevalence
and Monetary Costs of Dementia in Canada”
2 Ibid
3 World Health Organization, “Dementia”,
4 Ibid
5 Geddes (2020), “Remote cognitive and
behavioural assessment: Report of the Alzheimer Society of Canada Task Force on dementia care best practices for
COVID-19.”,
6 Alzheimer's Association, “Mild
Cognitive Impairment (MCI).”,
7 Chu (2020), “Remote cognitive and
behavioural assessment: Report of the Alzheimer Society of Canada Task Force on dementia care best practices for
COVID-19.”,
8 Hwang (2020), “Loneliness and social isolation during
the COVID-19
pandemic.”,
9 Statistics Canada (2020), “COVID-19 death
comorbidities in Canada”,
10 Government of Canada, “When Work and
Caregiving Collide:
How Employers can Support their Employees who are Caregivers.”,
11 Statistics Canada (2013),“”,
12 RBC (2021), “COVID
further clouded the outlook for Canadian women at risk of disruption.”,
13 CIHI, “1 in 3 unpaid
caregivers in Canada are distressed.”,
14 Stall (2019), “We should care more about
caregivers”,
15 CIHI, “Unpaid caregiver
challenges and supports”,
16 Ontario Caregiver Organization (2020), “2020
Spotlight on Ontario Caregivers – COVID-19 Edition”