Commentary

Who is caring for caregivers? The hidden wave of caregiver challenges during COVID-19

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As a working professional, spouse, mother and caregiver to my father with early Alzheimer's disease, I have experienced unprecedented levels of burnout, grief and loss in the COVID-19 pandemic [...] This past year has been [about] endless risk-benefit calculations between his safety and social well-being while cobbling together resources and respite.

Caregiver (Anonymous)

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.

COVID-19: Get all the insights

Monika Slovinec D'Angelo

Monika Slovinec D'Angelo

Director, Health

Isabella Moroz

Isabella Moroz

Senior Research Associate

Lyra Halili

Lyra Halili

Research Associate

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