Caring for Caregivers

By: Monika Slovinec D’Angelo

During the COVID-19 pandemic, the financial, physical, emotional and mental health impacts on these unsung heroes are going largely unnoticed with potentially huge consequences for Canada’s healthcare system.

This op-ed was originally published by iPolitics on March 29, 2021.

Unpaid, informal caregivers, who are typically family members, friends and neighbours, play a vital role in helping people with dementia reside safely at home and in their communities. During the COVID-19 pandemic, the financial, physical, emotional, and mental health impacts on these unsung heroes are going largely unnoticed with potentially huge consequences for Canada’s healthcare system.

The problems facing those caring for people who suffer from dementia are acute. Currently, more than half a million Canadians live with dementia. This number is expected to nearly double by 2033. According to the Government of Canada, by 2031, the total annual healthcare costs for Canadians with dementia will have doubled to $16.6 billion a year from $8.3 billion currently.

Dementia refers to a group of symptoms associated with a progressive decline in cognitive function characterized by memory loss, difficulties with thinking, behaviour, language, and the ability to perform everyday tasks. While there are many different types and causes of dementia, Alzheimer’s disease is the most common cause in Canada.

Canadians with mild cognitive impairment and early Alzheimer’s disease may have missed the opportunity for timely diagnoses and early therapeutic interventions. These delays in access are expected to further challenge care for these patients in the future, especially if a disease modifying therapy targeting the early stages of Alzheimer’s disease becomes available.

During the global pandemic of the past year, Canadians living with Alzheimer’s disease have experienced a sudden loss of social supports, caregiver networks, cancellation of daily services, and interruptions of routines. Lockdown measures imposed because of the pandemic have contributed to isolation, worsening anxiety and depression, and overall poorer health in people living with Alzheimer’s and other forms of dementia.

In many cases, these people have had to rely more than ever on a network of informal caregivers. According to Statistics Canada, 35 per cent of the Canadian workforce provides informal care to someone experiencing a long-term health condition such as dementia, with women between the ages of 35 and 44 making up a large portion of those caregivers. COVID-19 increased informal care demands affecting entire families and put many people in a situation where they must balance caregiving with the demands of a full-time job and raising children who are learning at home.

Even before the coronavirus, the Canadian Institute for Health Information (CIHI) found that one in three caregivers experiences distress. Contributing factors may be providing nursing and medical care at home with limited instruction, navigating a complex and fragmented healthcare system, and being substitute decision-makers for people who no longer have the mental capacity to make decisions for themselves.

Pandemic restrictions have only served to accentuate the demands on these caregivers. The Ontario Caregiver Organization found that more than half (54 per cent) felt it was more difficult to manage caregiving tasks as respite services were suspended and continue to be limited throughout Canada. Caregivers are enduring more intensive and constant care demands with no breaks, contributing to burnout, distress, and reduced functioning in other roles.

As a result, since the start of the pandemic, nearly 100,000 women have exited the Canadian labour market entirely, compared to less than 10,000 men according to an RBC Economics report. The pandemic has clearly exposed the systemic weaknesses prevalent within our healthcare systems when it comes to caring for people with Alzheimer’s and dementia.

Canada has not implemented large-scale structural changes to health systems required to address the gaps in dementia care revealed by COVID-19. Despite the federal government launching a Canada-wide dementia strategy in 2019, no progress has been made on the priority areas it identified. There is now an even greater need to urgently act on those identified priorities.

As Canada’s population ages, greater investment in infrastructure for optimizing home and community care services is essential. This includes timely diagnosis and early interventions for Alzheimer’s and other types of dementia. Alleviating the demands placed on informal caregivers needs to be a top priority.

Yet, sadly, Canada’s healthcare system is currently lacking when it comes to recognizing the impacts of dementia care on family, friends, and other loved ones. Timely diagnosis and treatment of dementia can improve the prognosis of patients and enhance the health and wellbeing of caregivers in the process.

As the prospect of a disease modifying therapy for treating early-stage Alzheimer’s disease is nearing, timely diagnosis, early interventions, and building an infrastructure to access such therapies is critical.

Building an infrastructure that can effectively support both people with dementia and their caregivers should be a priority for Ottawa and healthcare leaders at the provincial level. Failure to act will only serve to further exacerbate one of the biggest challenges facing this country today and in the years to come.