Supporting Ontario’s unpaid caregivers

Anne Harrison lives in Huron County with her husband.  For nearly two and half years, her husband was medicated for anxiety and stress he was experiencing at work.  The medication didn’t help.  They didn’t know what was wrong, and worried he might have a brain tumor.

In June of 2011, her local family health team, in conjunction with the Alzheimer Society of Ontario, set up a memory clinic, which was able to determine that her husband’s stress and anxiety at work were the result of early onset dementia.  He was only 55 when the diagnosis was made.  Anne’s husband continues to live at home, with Anne as his caregiver.

Many caregivers experience significant distress associated with caring for a loved one.  However, while her husband’s condition poses many challenges, Anne feels confident that she will be able to continue to care for him at home, thanks in large part to the support she receives from the Alzheimer society.

After her husband’s diagnosis, their family doctor called the Alzheimer Society.  Anne was immediately contacted by one of the Society’s social workers, who connected her with an education program about her husband’s condition, as well as counseling services and support groups to help her deal with the emotional strain and avoid the social isolation that often comes with caring for a loved one with dementia.  As a result, Anne feels better prepared to deal with her husband’s condition as it progresses.  She feels very lucky, because she knows many Ontarians face the challenges of caregiving without this kind of support.

Unpaid Caregiving in Canada

Anne is one of at least 2.7 million Canadians who provide care to a loved one.  Frequently these caregivers are women.  The annual market value of unpaid caregiving in Canada is estimated to be roughly 25 billion dollars.  As the population ages, these numbers will only go up.

While most caregivers find looking after their loved ones personally rewarding and value the close relationship it can foster with the person in their care, more than half of caregivers also experience serious challenges.  Many find caregiving emotionally demanding.  Forty-six percent experience stress and 15% report the people they care for are verbally or physically abusive.  Approximately 20% of caregivers are frail, disabled, or need care themselves.

Caregivers are at high risk for illness and injury, and may become emotionally exhausted (often called caretaker burnout), which can in some cases result in abuse or neglectAt highest risk are those providing more than 21 hours of care a week, as well as those who provide care to people with depression, dementia, or behavioral problems.

Samir Sinha, chair of the Ontario Senior’s Strategy says “Supporting caregivers is one of the keys to keeping the healthcare system sustainable as our population ages.”  When caregivers suffer from burnout, illness or injury, they are often unable to continue giving care, which usually means the person receiving care will wind up in a nursing home.  A single day in a nursing home in Ontario costs the healthcare system $153 (more than $55,000 per year), so finding cost-effective ways to support caregivers is essential not just for the long-term health of caregivers and care recipients, but also the healthcare system itself.

Ontario’s patchwork of caregiver supports

Historically, support for caregivers almost exclusively took the form of respite, where temporary, short-term care is provided in order to give caregivers some relief.  Over the years, the range of support has grown.  Joel Sadavoy, Head of Geriatric Psychiatry at Mount Sinai Hospital’s Reitman Centre for Alzheimer’s support and training says that in addition to respite, “caregivers also need support in the form of emotional interventions, skills, knowledge, and a range of material supports like home care, transportation, etc.”

In recent years, the needs of caregivers have received increased attention by the Government of Ontario, which has engaged in long-term scenario planning of caregiver needs over the next twenty years.  The Ontario legislature is also currently debating the Family Caregiver Leave Act, which would provide up to eight weeks of unpaid job leave to care for a sick or injured family member.  However, Ontario still has only a patchwork of support programs for caregivers.  While respite services of some kind are available in every region through Community Care Access Centres, the availability of adult day programs varies greatly, as does the availability of community services for caregivers such as skills training and emotional interventions.

This patchwork coverage is likely due in part to overlapping jurisdictions.  The Ministry of Health and Long Term Care, the Ministry of Community and Social Services and the Ministry of Children and Youth Services all provide some funding for caregiver support programs, usually aimed at different groups (for example, the Ministy of Children and Youth services funds programs to support caregivers of disabled children).

Supporting Caregivers in Ontario’s North

Despite the unevenness of services across the province, some regions have developed innovative approaches to supporting caregivers in their communities.

One example is Wesway, a non-profit organization that has begun providing caregiver support for the entire north west region of Ontario.  For decades, Wesway has provided a flexible range of respite services in Thunder Bay for caregivers of children, adults and seniors.  A few years ago, it began to work with the North West LHIN through the Aging at Home Strategy to expand its services across the region.  “As we looked beyond Thunder Bay, we quickly realized a bricks and mortar approach was not going to work – the population is just too dispersed up here,” explains Carol Neff, manager of corporate development for Wesway.

Instead of trying to build respite centres all over Ontario’s north, Wesway adapted an approach they call Family Directed Respite Funding that has been used in the past to provide respite for families raising children with disabilities.  This program allows caregivers to identify an assistance worker, friend or neighbor they trust to give care, and then reimburses caregivers for the cost of having them provide respite care, up to $4,500 per family per year.  “Respite has to be flexible,” says Neff.  “With this system, caregivers can arrange for the kind of care that meets their needs – for some that means having a friend stay in to let them get out of the house – for others it means having a neighbor take their loved one out to a local hockey game to give the caregiver some time alone at home.”

The program has proved enormously popular.  It currently serves 183 caregivers across 34 communities in North Western Ontario, and many more are on the wait list (the program has limited base funds, and so can currently only support a limited number of families at a time).

David Harvey, Chief Public Policy and Program Initiatives Officer for the Alzheimer’s Society of Ontario believes self-directed care initiatives like Wesway’s Family Directed Respite Funding are an excellent solution for Ontario.  He does caution, however, that “caregivers out in the community can be very vulnerable.”  In particular, he believes a major expansion of self-directed care must include mechanisms to protect caregivers if something goes wrong with the care they arrange (in the case of abuse or neglect, for example).  “Consumer protection must go hand in hand with consumer-driven support,” he says.

Skills Training and the Caregiver-Patient Dyad

Another innovative approach has been developed at the Reitman Centre for Alzheimer’s Support and Training at Mt. Sinai Hospital in Toronto, which specializes in dementia care.

The Reitman Center seeks to change how healthcare practitioners think of caregivers.  “Most often, healthcare professionals are focused on the patient,” Sadavoy says. “They see caregivers as a resource, but not as someone who is part of the treatment plan.”  The approach at the Reitman center is different.  “We believe the patient and caregiver together should be the unit of care,” he explains, “when we develop a treatment plan, it is for both the patient and their caregiver; we address both their health needs.”

At the Reitman Centre, the caregiver and the dementia patient attend a ten week program together (one half-day a week).  The program offers day programming and medical services for the dementia patient, while the caregiver goes through an extensive educational process, based in part on how doctors are trained.  The program begins with an individualized needs assessment for each caregiver, and is followed by group education about Alzheimer’s disease.  Caregivers then work with trained actors, who simulate real-life scenarios one-on-one, giving caregivers experience and personalized coaching about how to deal with difficult situations.  Caregivers are also provided group and solo counseling services to help them manage the difficult emotions that can come with caring for a loved one with dementia.

The Reitman Centre has trained 116 caregivers since beginning three years ago.  Caregiver satisfaction with the program is very high.  The ten week program costs the healthcare system approximately $1500 per caregiver, the equivalent cost of a ten day stay in long term care.

Sadavoy’s team has already developed a culturally appropriate version of their program for Toronto’s Chinese community, and hopes to soon begin replicating the program across the province.

Of course, programs like the Reitman Centre’s are relatively new, and evidence about which caregiver supports are the most beneficial is still evolving.  While a number of caregiver interventions have proved effective in the past, not all programs appear to have been successful.  If programs like the Reitman Centre’s are to expand, it would be important to evaluate their impacts upon patients and caregivers, including whether they delay or prevent placement in a long-term care insitution . It would also be important to know if their multifaceted approach, with its emphasis on skills training, should be adapted for other (non-dementia) conditions.

All the building blocks

Many of the building blocks for supporting Ontario’s unpaid caregivers are already in place in a patchwork fashion across Ontario.  However, many innovative programs have not yet spread beyond their respective regions, and some successful programs (such as Wesway) do not currently have the financial resources to meet the demand.

As the baby boom generation ages, more and more Ontarians will be providing care to their loved ones at home.  To keep our citizens and our healthcare system healthy, it is important that ways are found to support these caregivers.

If you are a caregiver in need of support, click here to view a list of resources that may be able to help.

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  1. Madonna Gallo

    Thank you for raising awareness of this important issue. Earlier this year, the research team at Saint Elizabeth released a report identifying promising practices and 20 indicators of effective caregiver education and supports programs. The project (funded by Echo Ontario) involved caregivers as co-investigators as well as participants. As you stated, caregivers have many needs, but the researchers concluded that no single caregiver support program is likely to be able to meet them all. What is needed is not only improvement on individual supports, but also collaboration and partnership among support programs to meet caregivers’ broad range of needs as they change over time. To assist other organizations, tools are available on our website to review and improve caregiver programs in alignment with the study findings. Saint Elizabeth will be launching a new Caring for Caregivers Online Resource Centre next week.

  2. Micky

    Hello…thank you for the insighful article! This is definitely an issue that is often overlooked by both the healthcare system as well as the caregivers themselves. It is certainly very important for the caregivers to know of their resources. I was just wondering if there any resources out there for caregivers for people with Young Onset Parkinson’s Disease.

  3. Marion Morris

    I am a long time care giver for my now 92 yr old mother. We have just this week placed her because of total physical burnout. No caregiver support. Seeing the kind of care in “long term’ care I am very discouraged and think I have made the wrong decision. The shear agony of this is hard to bear and I don’t know where to turn. There are 2 groups in Hawkesbury – both in french. Alzheimer but the demential is not severe. Lewy body type so mobility took her from her home. Any suggestions?!

  4. Jayne Anderson

    I am getting burnt out and now stress levels are very high. I live with a elderly lady that has hypochondriac symptoms, It is a unpaid position, her sons approached me and asked if I could help, so I moved in about 1 and a half moths ago. I don’t drive and have had only 2 days off. I feel like I am always on a scheduled, as she has a touch of vertigo , and can’t take the stairs. I bring her meals, take her to the doctors office, by cab. Clean her home but I do have someone to come in to make sure she is bathed. Whew! Is there any caregiver relief for just a day now and then, funded by the government red cross or any other place. I love helping her and the friendship is rewarding but latley she has only been talking about her illness. It is depressing, and the doctor has told her there is nothing wrong with her. I also take her to the restaurant which she likes to go and I am sitting there for 2 hours usually going out side to explore the strip mall. I am tired and it’s been less than a month.

  5. Audrey Miller

    Thank you for this helpful and resourceful article. I think employers need to come to the table as well in order to support employed carers. An elder care program through an employee assistance provider is the first step. In addition , greater flexibility such as work from home options and job sharing should be considered. Supporting valued employees allows them to continue making contributions both at work, at home and in the community.

  6. Heather

    Hi, my mom lives with my common law hubby and myself, she has for a year and a half, she has gotten really bad lately and should not be left alone, but unfortunately i have no choice as we have to work!! we get a worker to come in an hour a day and 4 hours on fridays,while we are at work but we are gone 12 hours a day five days a week, i am at my wits end as to what i am suppose to do, wait till she gets hurt???we try our best to make the home safe, turning off breaker to stove and other things ,but lately she is putting things into toaster that should not be in there and dangerous……doctor has said he will send a letter stating she is high risk now …we have been waiting for a bed in a nsg home but until then ,what am i suppose to do !! there should be some type of financial help for a person who has to stay home with them till they can get a bed…they could make limits for example…they must be on a waiting list of 4 or more homes..and put a time frame as to how long you can draw 6 months or something…. its sooo sad that our seniors who have worked their whole lives get treated this way ! she would get better services if she was a criminal and in jail !!

  7. Cindy

    I am praying for some kind of funding for caregivers, my husband is terribly ill but I have to work I wish there was a way I could stay home and give him the care he needs and still be financially ok..I really am disgusted that the government allows able bodied people to get a cheque at the end of each month , while people like myself work 50 hrs a week and have to care for a loved one on top of their job.

    Its not easy and I am exhausted, it is no wonder so many caregivers die before the one they are caring for.

    • Saskia Jennings

      Hello Cindy, I acknowledge your “cry for help”. Informal caregiving is a real job. Maybe some of the previous mentioned resources will help you, especially about getting support through CCAC if that applies to your region. It is important to set fear and anger aside and grab the phone to connect with resources. What may also help is to talk to your employer and express your needs. If no measurements for “caregiver leave” are in place, then maybe you can make a personalized arrangement. After all, an exhausted worker is less productive and that situation is not beneficial for anyone. Starting a conversation may turn into a win-win-win.
      Seeking help and support for yourself through local Family Services, your Doctor, a Social Worker is helpful to. Hope this info is valuable for you. Take good care, Saskia

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