Informal caregivers have faced significant challenges supporting those they care for, and themselves, for a long time. These are the family members, friends and neighbours who provide care to seniors in need of support with daily living.
The Canadian Institute for Health Information indicated one in three caregivers in Canada are distressed, “which can include feelings of anger or depression or the inability to continue with caring activities.” This research also shows unpaid, distressed caregivers are providing the care of a full time job: 38 hours per week. And this was before COVID-19 reached our communities.
This week, United Way’s COVID-19 Community Response Table focused on the issue of caregiver distress during COVID-19. We also launched the Eastern Ontario Caregiver Strategy: a collaborative report created by the Champlain Community Support Network, the Champlain Dementia Network, and United Way East Ontario.
A community-wide effort
When COVID-19 first entered our communities in early March, Ottawa Public Health asked United Way East Ontario to work with local social services to address the social needs in our communities.
By Michael Allen
President and CEO,
United Way East Ontario
Since then, United Way East Ontario has led the COVID-19 Community Response Table: a group of public health authorities, municipalities, frontline agencies, corporate partners, elected officials from all levels of government, and many others committed to supporting people through the effects of COVID-19.
As in past meetings, this week’s Table included attendees from different levels of government, including Hon. Christine Elliott, Minister of Health, Minister of Provincial Parliament for Newmarket—Aurora and Deputy Premier; Marie-France Lalonde, Member of Parliament for Orléans; and Jeremy Roberts, Member of Provincial Parliament for Ottawa West—Nepean.
Minister Elliott joined our meeting to commend the tireless work caregivers commit to their loved ones, especially in these current challenging conditions. She also laid out the provincial government’s commitment to supporting caregivers.
“Caregivers have been the silent heroes of our communities. Now more than ever, we are grateful for their compassion and commitment to those they care for, and their efforts to protect the health and well being of their communities”
In 2017 and 2019, United Way produced reports on the state of vulnerable seniors in both urban and rural contexts. The recommendations in both of these reports called for a strategy to better understand the needs of informal caregivers, who play a fundamental role in supporting seniors in our communities.
In 2018, the Champlain Dementia Network conducted a literature review of best practices to support caregivers. Following that, United Way, the Champlain Dementia Network and the Champlain Community Support Network convened a working group of caregiver service providers to consult on the issues, gaps, and innovations affecting caregivers identified by the dementia network.
In early 2019, we consulted with caregivers across Eastern Ontario about their experiences.
“The needs profiled in this strategy, although amplified by the pandemic, are not new.”
We completed consultations for the Eastern Ontario Caregiver Strategy before the pandemic, but we know COVID-19 has increased isolation and burnout while decreasing respite opportunities for caregivers. We do not yet know the extent of COVID-19’s impact on caregivers, but we do know the circumstances are not heartening.
We designed this strategy to be a roadmap for planning, programs, and action that will better support caregivers and their families. Take a look at the strategy here.
Centering caregiver voices
The recommendations in the Eastern Ontario Caregiver Strategy are built on extensive consultations with local caregivers. These took shape through a series of surveys, focus groups, and in-person interviews with more than 200 local caregivers.
Natasha Poushinsky of the Champlain Dementia Network shared some of the needs we heard from caregivers:
A reworking of the system is necessary and long overdue
- Caregivers find the current system of seeking and accessing help to be uncoordinated and confusing. Caregivers struggle with getting the help they need because they aren’t sure where to look. Often, when they did end up in the right place, it was by accident.
A need for a place-based approach
- Caregivers need more tailored services to address the unique needs of rural and urban living. This also includes awareness of different cultural and linguistic needs in our communities.
Caregiver distress is rarely recognized
- Services and resources focus on the needs of the person receiving care, without acknowledging that caregivers need their own support to access respite, wellness, education and more.
Caregivers lack education and training
- Many informal caregivers understand the specific needs of the people they care for. But, they still need education and training in basic caregiving practices, which they don’t always receive. Caregivers also lack information on how to care for themselves.
The financial strain on families
- Many caregivers pause or give up on their own professional careers because of the time requirements associated with caregiving. They also find it stressful to seek employment accommodations for their caregiving duties.
Caregivers need attention from both healthcare and social service sectors to bridge the gaps and ensure better outcomes for caregivers and the people who rely on them.
Personal Support Workers: The silent supporters of caregivers
Robin Meyers from Carefor Health and Community Services spoke to the Table about Personal Support Workers (PSWs): PSWs offer targeted care while giving the caregiver a break from their support duties. PSWs can also help the caregiver learn how to better care for their family, making them a valuable part of a caregiver’s support network.
Robin shared anecdotes from caregivers she works with:
Danielle takes care of her husband, John, who lives with dementia. For five years, they used community support services, home care services and PSWs. When the pandemic hit, they stopped accessing support services because they were afraid John would be at greater risk of catching COVID-19. The pandemic has made Danielle a 24/7 caregiver.
Michelin, who cares for her husband who lives with dementia, uses PSW services five times a week. Michelin uses this time to run errands, visit friends, or have time alone to herself. Now, she’s experiencing the isolation of being a full-time caregiver coupled with the isolation that comes with COVID-19.
Eli, whose daughter cares for him, wanted to continue living at home—like many seniors. When PSWs arrive at Eli’s home for an hour each week, his daughter gets to be his daughter again. Eli’s daughter resisted support for 10 years, caring for her father on her own. By accepting help, Eli’s daughter ensured her father was able to stay comfortable and healthy in his own home.
Before the pandemic, Carefor provided 12,500 hours of personal support services in the Ottawa region each week. As COVID-19 entered our communities, many caregivers were afraid to have people in their homes and they stopped their services. Soon, Carefor saw a drop in services by about 30 per cent.
Caregivers are even more distressed and burdened because the respite PSWs were providing has diminished.
Robin also noted that there is a human resources crisis in the healthcare system right now: there aren’t enough PSWs, nurses and other healthcare professionals to meet the increased demands of the pandemic. Caregivers and PSWs alike are overworked, exhausted, and are struggling to find support.
A personal reflection
Janet Luloff’s testimonial is one of many that informed the creation of the Eastern Ontario Caregiver Strategy. Janet shared a first-hand account of the challenges she faced as a caregiver to her parents for more than 15 years.
Caregiving responsibilities consumed Janet’s life, and she felt lonely and isolated. She recalled how she was someone others didn’t want to be around because “that’s all you have to talk about.”
“I can't emphasize enough the need for proactive mental and physical relief and financial support for caregivers and to ensure caregivers are recognized as key pillars in the circle of care.”
Janet recalled her personal experiences caring for her mother, who was diagnosed with mixed dementia later in life. Her father developed physical disabilities and succumbed to complications arising from caregiver fatigue.
Janet’s caregiving duties initially included menial tasks like making and delivering meals, driving them to appointments, helping with laundry and other personal care tasks. Eventually, her responsibilities became all-encompassing, and she had to stop working completely to care for her parents full-time.
Janet is one of the millions of caregivers in Ontario, and her story of distress and helplessness is not unique. The percentage of long-term informal caregivers who reported being distressed or unable to continue providing care doubled from 15.6% in 2009-10 to 33.3% in 2013-14.
Paired with the added challenges of COVID-19, this number is likely to continue growing.
A collaborative approach to supporting caregivers
While the road ahead to supporting caregivers seems daunting, many frontline services have adapted to support caregivers during the pandemic.
Monique Doolitte-Romas of the Good Companions Seniors’ Centre noted that, within 48 hours of closing their doors to COVID-19, the Good Companions modified their programming to be available virtually with support from United Way.
Monique also highlighted the United Way-supported expansion of the Seniors Centre Without Walls program: a telephone-based, barrier-free program that offers creative engagement activities for seniors like musical performances, cognitive workshops, wellness checks, and more.
“We're doing everything we can to provide even 45 minutes to an hour of respite to the caregiver.”
A francophone perspective
“We already knew the challenges facing caregivers pre-COVID, but what the pandemic added was the fear of the unknown: will I be able to help my loved one?” — Claude Sauvé
Claude Sauvé, of the Fédération des ainés et retraités francophones de l’Ontario (FARFO), echoed many of the sentiments heard at the Table. He also touched on the added challenges francophone caregivers in rural areas experience:
- physical distance between a caregiver and their loved ones,
- distance between service providers and caregivers,
- lack of public transportation,
- struggles accessing high-speed internet and connection to the digital world,
- not wanting to leave the family home where generations have lived, and
- challenges finding support and training in French.
“The caregiver and their loved one are a team. Anything we can do for one or the other will benefit both.”
One of the recommendations in the Eastern Ontario Caregiver Strategy is to better address the cultural, linguistic and place-based needs of caregivers, so challenges like this don’t persist.
Recommendations for a way forward
The purpose of the COVID-19 Community Response Table is to address the inequitable impact of COVID-19 on our community, and to build collaborative solutions. Kelly Mertl, Director of Community Initiatives at United Way East Ontario, summarized the recommendations to support informal caregivers.
Informal caregivers must be recognized as a key partner in the health, financial and social aspects of care for seniors. They are an essential pillar in the circle of support for the health and wellbeing of seniors.
To achieve this, we propose the following:
Invest in immediate, coordinated research and data collection to establish a better understanding of the impacts of COVID-19 on caregivers. Develop and deploy best practices and innovative solutions.
Mobilize the community to provide critical respite to reduce caregiver distress and exhaustion. Strengthen current programs, and expand options for mental health and physical relief for caregivers.
Work with community partners and government to put in place recommendations from the Eastern Ontario Caregiver Strategy.
Advocate to close the pay gap of front-line workers, ensure wage parity for in-home care providers and improve working conditions for personal support workers.
The road ahead
United Way East Ontario, the Champlain Dementia Network and the Champlain Community Support Network and our partners at the COVID-19 Community Response Table are committed to addressing the needs of caregivers across our region. The Eastern Ontario Caregiver Strategy provides a strong foundation we can build upon to support caregivers and their families now, and over the long term.
“The real message of this strategy is that it's only through coordinated and collective action that we can really do the redesign that caregivers are begging us to do.”
While the pandemic delayed the release of this strategy, we have not wavered in taking care of those who need us most. This work is critical, and it does not stop.
In early March, in partnership with Ottawa Public Health and dozens of organizations across the community sector, United Way launched an initiative to help support the most vulnerable in response to COVID-19 in our region. This collaboration has enabled local problem solving, prioritization of needs, and collaboration. To learn more about supporting the initiative, or if you require community service assistance, please visit unitedwayeo.ca/covid-19.
