It’s Time to Shift Our Thinking on Long-Term Care
John Lord, an order of Canada recipient, is a researcher and author living in Waterloo. He is the author of several books, including “Pathways to Inclusion: Building a New Story with People and Communities.” He is a member of Seniors for Social Action Ontario.Dr. John Lord’s recent opinion piece in The Record is a clarion call to rethink elder care in this province. Lord, a long-time friend and ally of the community living movement, distinguishes between the two approaches being advanced to remedy the dysfunctional senior support system and provides three clear recommendations that are required to lead the necessary reforms. With thousands of people who have a developmental disability aging and likely in need of additional assistance, either at home with family or in a range of supported living programs offered by local associations for community living, the requirement for a more robust and effective home care option is critical to maintain people in their own home, as they wish, and to prevent needless institutionalization in long-term care facilities. Home care currently accessed by some 700,000 Ontarians is one of the key pillars of the sorely needed reforms for all citizens to live a safe and dignified life with as much autonomy and support as needed.
There is widespread agreement that the crisis in long-term care has been exacerbated by the pandemic. While the failures in long-term care have been well-documented for more than two decades, there are now calls to ‘fix’ the crisis that continues to include significant deaths of our elders. There are two approaches being advocated by critics, families, academics, and advocates.
The first approach calls for more staffing, increased number of hours of care, and more accountability for the homes. While this approach seems to have merit, it assumes that one can improve long-term care with more money. The goals of this kind of reform are narrow, ensuring that large institutions will continue to be the focus of long-term care. The government of Ontario strongly supports this approach and has recently allocated $1.75 billion to build more facilities.
The second approach that is gaining momentum is focused on alternatives to the institution. Support for this position comes from Seniors for Social Action Ontario, the Canadian Association of Retired Persons, the Ontario Community Support Association, the Ontario NDP, and several physicians, such as leading gerontologist Dr. Samir Sinha. The goal of this reform calls for us to understand the systemic issues in long-term care and to create meaningful community alternatives to institutionalization.
Research is clear — people’s conditions get worse after they enter an institution. Frail elders often suffer from chronic pain, dementia, or other illnesses. In a long-term care facility, suffering unnecessarily increases, brought about by a rigid, institutional system that focuses on disease rather than wellness.
Lack of personal control is also standard in institutional care. It is no wonder that physician and author Atul Gawande has found that the most common complaint he hears from nursing home residents is “It just isn’t home.”
The pandemic has shown that high rates of infection and social isolation are two other significant impacts of the current long-term care system.
People often have a difficult time imagining a long-term care alternative to large institutional buildings. In part, this is because our culture has ingrained the ‘nursing home’ image in our minds. We will need imagination and courage to rethink and redesign a system that is personalized, community-based, and focused on well-being and dignity. The recent report, “Aging Well,” by Don Drummond and Duncan Sinclair of Queen’s University, proposes such a redesigned holistic approach for long-term care that considers healthcare needs in conjunction with housing, lifestyle and social needs.
As we look around Canada and the world, we can learn from existing redesigned systems. Several countries, mostly in Europe, have reallocated significant resources from institutional care to community supports and home care. Countries such as Germany, Denmark and Japan have done much better than Canada at lowering the rates of institutionalization of frail elders. As an example, in Japan 33.6 per 1,000 people aged 65 and older are institutionalized compared to Canada at 58 per 1,000 in the same age range.
Redesigning long-term care in Canada will need to focus on three major areas.
First, since Canada spends far less on home care than many other countries, we need to fund enhanced home care that enables more people to remain in their own homes. Home care that provides funding directly to the person and their family will enable people to have control over the supports they require. Allowing people to age in place is also cost-effective. As Dr. Sinha points out, Ontario spends $183 per day to support a high-needs person in a nursing home, compared to just over $100 per day to provide home care.
Second, we need to fund caring community networks. Aldred Neufeldt, professor emeritus at the University of Calgary, points out that neighbourhoods, apartments and condos exist where many elders reside that can create supportive connections. Radical Rest Homes, based in Montreal, offers workshops and supports for people to create networks where people share staff or create shared living situations. Governments need to support this kind of cost-effective innovation.
Third, we need more community housing options for those who require congregate care. These can be homelike settings where people have choice and connections with family, friends and community. These should be non-profit entities and could be provided by community support organizations or municipalities. The Green House Project in the United States is an example of such a community enterprise, and there are Canadian projects in the development stage.
It is time to rethink our approach to long-term care and to embrace more alternatives to dominant institutional models. With an aging population, the demand for long-term care is expected to double in the next 20 years. Since polls show more than 90 percent of Canadians do not want to end up in a nursing home, we need to take bold action to ensure that our elders can live in dignity as they age.