Making the “Right” Decision

For many care partners supporting people living with dementia, choosing between long-term care or home care can feel like an impossible choice

One of the biggest decisions people with dementia and their care partners face is choosing whether to stay at home or move into long-term care. Helping people remain at home is a pledge many care partners of people living with dementia make — often, their perception is that staying at home can offer more comfort, dignity and individualized support. But for others living with dementia, a long-term care home may be a better fit for their specialized needs. Regardless of where someone ultimately ends up, the quality of the care provided and if the relationship with the person or people offering care is healthy and respectful are key.

Neither choice is an easy one. In Canada, finding support — both financially and from a care perspective — to stay at home can be difficult. Meanwhile, concerns about the lack of personalized supports in long-term care, on top of the inadequacies revealed by recent COVID-19 outbreaks, are deeply troubling. Indeed, there are challenges and benefits to both options, and myriad factors to consider before making a choice. But for Torontonian Frank Palmer, the decision to care for his wife, Irene, at home was clear from the start.

Frank and Irene’s experience

After Irene’s Alzheimer’s diagnosis in 2004, Palmer wanted to challenge the assumption that eventually moving her into a long-term care home was unavoidable. Irene had enjoyed a successful career as an RN, and the couple had previously scouted care homes for her elderly mother, so the family was aware of the limitations of long-term care homes. Palmer was still working in the early days of Irene’s dementia, but he felt like he had both the means and the fortitude to care for her at home even as her disease progressed.

“It had always been my inclination to keep her at home as long I could,” Palmer says. “I just could not accept the conditions at many of the LTCs [long-term care homes] I looked at. I did not see dignity. I saw a lot of things I didn’t like, even in the private LTCs. So, I was not prepared to do that with Irene.”

In the beginning, Irene’s symptoms were manageable. The couple continued to visit with family and friends, travel extensively and eat in restaurants. But in 2013, Irene had a major health crisis while travelling that landed her in the ICU in Florida, before she could be flown home to further recover in Toronto. Typically, hospitalization can be the instigating factor that leads to a person with dementia moving into long-term care. Despite concerns from family, Palmer, who readily describes himself as “stubborn,” insisted on caring for her at home.

After Irene returned from the hospital, Palmer set up a home care system that was essentially as comprehensive as what one would find in a long-term care home. Eventually, Irene had care professionals with her from 8 a.m. through to 10 p.m. Palmer did get some provincially funded agency help. Still, he also paid out of pocket for a lot of the care staff — which is similar to the idea of families of people in long-term care “topping up” care home staff with private caregivers. Palmer compares his role in managing and finding caregivers who fit his specifications to a full-time job. The price was comparable to what it would have cost to put her in a higher-end private care home. The difference, of course, was that home care required a lot more work on his part. “I have for a number of years been telling people that I’m the CEO of my home address,” Palmer says. “Luckily, I had the knowledge of how to do that, being a chartered accountant, but many families don’t know how to do it.”

A question of funding

A big part of the reason why home care can feel so challenging is a lack of financial support. According to an article published earlier this year in the Globe and Mail, when it comes to public funding, Canada has one of the lowest rates of home care support in relation to funding received by long-term care homes among G8 countries. The same article cites that in Ontario, $3 billion is spent annually on home care as opposed to $4.3 billion on long-term care. Yet there is an annual average of 700,000 Ontarians requiring care at home, compared to approximately 100,000 care home residents, meaning that that province is spending less on home care and spreading it much more thinly among a larger cohort of patients. Because of this financial prioritization of institutions, once people get to a point where they need round-the-clock support, a move into a care home can seem to be inevitable.

Rethinking how public funding is used by increasing or reallocating funds to home care could help ease the burden from care partners. But for many, funding alone isn’t enough — the freedom to choose exactly how they use that financial support is key. Luckily, there are programs working to make aging in place more accessible. For example, Alberta Health Services Edmonton Zone Enhanced Home Living Client & Caregiver Supports Pilot is attempting to improve quality of life for both care partners and people living with dementia. Implemented in January 2019, the pilot is working with cohorts across the province made up of home care clients and care partners. Its three objectives include supporting caregivers’ well-being, creating real choice for home care clients to stay at home and examining the impact of enhancing support services as opposed to health services. So far, the pilot has explored enhancing assessments, including to determine at-risk caregivers sooner. It’s also increased services and funding, while still allowing care partners and home care clients the ability to choose the support they actually need. For example, participants can select the provider they want to use, whether private or public, such as a housecleaner or respite service, and invoice AHS monthly for reimbursement.

Finding support for care at home

An essential part of helping people stay at home longer is post-diagnostic support, often the sooner the better. Recreational programming, support groups and caregiver training can all extend the time that a person with dementia can stay at home without going into a long-term care home.

But the period immediately after diagnosis can be overwhelming, and a lot of families don’t feel comfortable reaching out. This is where Carrie McAiney, associate professor, Schlegel Research Chair in Dementia at the University of Waterloo Research Institute for Aging, appreciates programs like the Alzheimer Society’s First Link program, where family doctors get permission to pass their patients’ contact info to the Society, who can then be proactive about reaching out.

“It’s important to get information into people’s hands and help them with preparing and to understand what’s happening and what to expect moving forward,” McAiney says. “People often do wait to ask for help until they’re really in a difficult state. At that point, it’s hard to know how much a service can help. The potential benefit of having earlier intervention can be so much more helpful.”

McAiney suggests that people newly diagnosed with dementia contact agencies like the Alzheimer Society as soon as they feel ready or ask their doctor or a nurse in their doctor’s office for other local resources.

Making the “right” decision

While extensive home care works for some families, including the Palmers, it doesn’t work for everyone, and families need to evaluate which options will best meet their individual needs. McAiney says that it’s important not to position the choice as “care homes versus home care.” One model is not universally better than the other, and that dichotomy can create guilt for families who choose what is seen as a less noble option. Both models can certainly fall short, especially when underfunded, but both can also offer excellent care and personal fulfillment for both the people with dementia and their care partners.

“Especially with everything that’s happened with COVID, this issue has been framed as a this or that: staying at home or going to a care home. I don’t think that’s a helpful way to think about it,” McAiney says. “Most people want their loved ones to stay home as long as possible and to do everything they can to ensure that will happen. But for a good percentage of people there can come a time when they need that extra support and it can be better and likely safer for the person to have a care circle around the clock.”

As for Frank Palmer, he has no regrets. After spending seven years in an intensive home care environment, Irene peacefully passed away at home this past May. Although his grief is still fresh, Palmer knows that he did what was best for both of them. He feels like Irene lived for several years longer than she would have if she had left their home and also feels like they both enjoyed being together.

“In her later stages, yes, Irene sat at home,” Palmer says. “But we could still talk, we could still tease each other, and we used to do that all the time. There would be smiles or chuckles out of her. Even the day before she passed away, she still looked at us. She was smiling at us. She was still there.” [ ]