Opinion

Let’s ditch the ‘fear of long-term care’ narrative; instead, let’s uncomplicate aging at home

If you have been following social and traditional media, you will have read that the main reason Canadians want to live, age and receive care at home is fear of long-term care (LTC) homes. Negative commentaries and reports focused on death, infection control issues, staff shortages and social isolation have contributed to this pervasive and dominant narrative since March 2020.

However, instead of focusing on setting/ place of residence, the starting point should be understanding individuals’ physical, functional and social care needs through holistic, standardized assessments. Then, we should consider how those needs may be sustainably met in their preferred setting or place of care and offer options across the continuum.

While the COVID-19 pandemic has certainly highlighted longstanding challenges within the LTC home sector, it has also kick-started positive reform efforts that will vastly improve care and overall experiences within these settings, including the development of the National LTC Service Standards and commitment from various provinces  to build more LTC beds.

What social and traditional media should be prioritizing is raising awareness that we will not be able to build or staff enough hospital or residential LTC beds to meet our needs.

With these positive moves forward, the fear narrative is unhelpful and counterproductive. For some, moving to residential LTC or some other form of assisted living or congregate-care setting will be the optimal environment for meeting their needs.

What social and traditional media should be prioritizing is raising public awareness that we will not be able to build or staff enough hospital or residential LTC beds to meet the needs of the population of Canadians 85 years+, which is set to triple in the next 30 years. And with more than 90 per cent of Canadians currently planning to live, age and receive care at home, we need to shift public discourse away from “avoid residential LTC at all costs” toward “we need additional LTC options.”

As a group of applied health services researchers, we understand Canadians steadfast preference to age at home and recognize the importance of expanding the health and social care system to include more home-based LTC alternatives. We have been working to develop a sustainable, evidence-informed, new model of care called Long-Term Life Care at Home that is focused on meeting the needs of people in their own homes.

The model prioritizes individual life-care needs that encompass the physical aspects of health and daily functioning, as well as quality of life, mental health, meaningfulness and societal participation. It involves nurse-led interdisciplinary care from a wide range of providers, with care packages including more than 65 types of care and support services.

We anticipate that implementation of this new model would not only better match the care preferences of Canadians but will also enhance capacity within hospital and residential LTC sectors by facilitating access and reducing wait times for those whose medical, functional or social care needs are best served in these settings.

As part of the research study to develop our model, we played host to a series of six focus groups with 67 older adults, caregivers and community-based health and social care providers. As experts-by-experience, they helped us identify essential and missing components of the model, implementation challenges and opportunities.

To start our collaboration with them, we asked, “What is the first word that comes to mind when you think of aging at home?” The word cloud below shows their answers, with the size of the words correlating to the frequency they were shared.

These unfiltered reactions reveal thoughts and experiences related to “aging at home” for older adults, caregivers and health-care providers. Their voices reflect the current system of care: “complicated,” “physically inaccessible,” “inadequate.” Their voices provide insights into why aging at home is important: “comfort,” “safety” and “independence.”

The words “frightened” and “scares me” only came up once each and were in the context of having to leave home, not to enter LTC. This word cloud demonstrates the tension between unmet needs in the current system of care while highlighting the many reasons why Canadians value being able to age in place.

Traditional and social media have highlighted a lot of individual stories of despair during the pandemic; while compelling, the details are often hard to generalize to the broader population. Though the word cloud exercise was not detailed, it allowed for the collective voice of a group of aging Canadians to be shared. This pulse-check can help to inform the public, policymakers and other decision-makers about the future of aging-focused care in Canada.

Let’s ditch the fear of LTC narrative and uncomplicate aging at home so that more people can make the choice to receive care that will meet their goals, help to maintain independence, promote safety, and keep them comfortablein any setting across the continuum, including home.

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3 Comments
  • James Dickinson says:

    To do it well, we need to get away from the penny-pinching private contract care providers, who exploit both the carers and the patients (and the public purse, since they are often being paid for care not given). We need to pay the carers sufficiently well that they can make a longer-term commitment, and be there regularly for their patients. But that requires the political will to increase their wages and treat them well, with a different organizational approach.

  • Barbara Weigelt says:

    As a caregiver the home care we received allowed my loved one to be with family, have dignity and comfort, and have the hope and will to heal and have a much better recovery prognosis.
    Ageism seems almost inevitable in our society but with choices such as home care and alternative LTC options the elderly can live more meaningful lives. We are all humans in every stage of life, and as long term contributing members of this society we all deserve to live our best lives through our whole lives.

  • Larry W. Chambers says:

    A timely report in this Ontario election year — provincial(June) and municipal (fall).
    The new book “How your beliefs about aging determine how long and well you live: Breaking the Age Code by Becca Levy” strengthens the call for action you outline. Her book reports on her multi-year program of research that demonstrates that many health problems formerly considered to be entirely due to the aging process, such as memory loss, hearing decline and cardiovascular events, are instead influenced by negative age beliefs.

Authors

Valentina Cardozo

Contributor

Valentina Cardozo is a Research Associate in the SE Research Centre at SE Health; she holds an MSc in Public Health with a Global Health specialization.

Justine Giosa

Contributor

Justine Giosa, PhD, is the managing director of the SE Research Centre of SE Health and adjunct assistant professor in the School of Public Health Sciences at the University of Waterloo.

Paul Holyoke

Contributor

Paul Holyoke, PhD, is the executive director of the SE Research Centre of SE Health.

Margaret Saari

Contributor

Margaret Saari is a Clinical Scientist in the SE Research Centre at SE Health, and Adjunct Faculty in the Lawrence S. Bloomberg Faculty of Nursing.

George Heckman

Contributor

George Heckman is a geriatrician and internist in Kitchener-Waterloo and holds the Schlegel Research Chair in Geriatric Medicine at the University of Waterloo.

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