Increases in dementia will drive long-term care reform

Canada’s philosophy and approach to supporting seniors in long-term care (LTC) needs a fundamental re-think, including how, why and when people access LTC. We’ve just begun to deal with the consequences of a broken system during the COVID-19 crisis, where system failures resulted in tragedy previously thought unimaginable. Facing this challenge head-on means confronting one of the greatest health policy challenges Canada has faced: understanding and acting upon the diverse needs of Canadians living with dementia, now and in the future.

The number of older Canadians who are expected to live with a cognitive disability is set to increase dramatically. The prevalence of dementia in Canada is projected to nearly double between 2020 and 2038, with rapid increases beginning around the year 2030. Already, in 2015/16, 69 per cent of residents in long-term care homes had dementia.

In light of this, LTC reform plans should reimagine the physical design of LTC institutions, how care is provided in those facilities, and find ways to expand and improve home-care services – an underused and much-preferred alternative to institutional care. Finally, and perhaps most importantly, Canada must adopt policies and provide funding to support informal caregivers: family and friends who are essential in any plan to allow seniors to age in safety and dignity.

Several reviews into the devastation that COVID-19 wrought upon residents, families and staff of Canada’s long-term care and residential homes highlighted various underlying causes. They include underfunding, overcrowding, aging infrastructure, inadequate staffing and lack of standards. Although this retrospective analysis is important, none of this information is new.

Governments must make immediate investments to address infrastructure issues, improve sustainability and viability of the workforce and make more home-care options available. But increased spending alone is unlikely to change anything: spending on “more of the same” has been the customary response of governments to addressing most health-care issues, and Canadians have more or less accepted that approach without question. A 21^st century approach is less rigid and more personalized – focused on funding needs rather than beds – in short, providing the right care in the right place at the right time in active partnership with patients and families.

Decades of inaction in LTC

As a staff member in two provincial health ministries, a consultant working with multiple and diverse stakeholders, a health policy analyst, a health minister, and now a caregiver, I’ve had nearly 40 years to think about why it’s so difficult to achieve transformation in health care that can benefit all Canadians. Many of the health and social services that support aging fall outside of the original list of Canada’s universal health care services and are rarely considered as alternatives to institution-based models. Think about the challenges of accessing meal preparation, housekeeping and friendly visiting for an isolated senior as one example.

Like mental health, public drug coverage and other “orphans” of the universal health care in Canada, understanding LTC and the nature of change requires an honest assessment of how we arrived where we are. André Picard’s new book, Neglected No More, covers the trajectory of LTC in Canada, from asylums and workhouses to houses of refuge, homes for the aged and ultimately today’s long-term care and retirement living options. Picard shows how today’s stated policy objectives supporting independence and more home-based care are at odds with the bias of the default institutional approach, now the norm.

Attempts at reform in recent years have been largely focused on adaptations to institutional care. Where funding has increased for home care, the focus is largely nursing care with an understandable emphasis on freeing up much-needed beds in acute-care facilities.

A lot of money is on the table for LTC in the near future. For instance, in the 2021 budget, the federal government announced $3 billion over the next five years. The Ontario government announced an additional $4.9 billion over the next four years. Other provinces have announced billions more. What’s lacking is clarity about the purpose and measurable outcomes associated with this funding that governments desire to achieve. How will the future be different? In this vein, adapting LTC to a rising number of Canadians with dementia is essential.

A focus on dementia within LTC – fast growth in cognitive disabilities in Canada

The main risk factor for dementia is age – it is more common after the age of 65. While dementia affects both men and women, women make up approximately 65 per cent of those living with dementia. Their higher proportion is due to their longer average life spans and, as emerging research suggests, their higher incidence of non-modifiable risk factors for dementia – such as genetics.

In a report published in April by the Institute for Research on Public Policy, researchers projected the future prevalence of dementia in Canada by assuming that the most recent prevalence rates of dementia by age and gender (from the Canadian Chronic Disease Surveillance System) would remain constant in the future. With these assumptions, Statistics Canada’s medium-case demographic forecasts are used to project the number of Canadians likely to have dementia in each province and nationally.

The results show that the prevalence of dementia in Canada is expected to about double between 2020 and 2038, with sharp increases in prevalence beginning around the year 2030 (figure 1). By 2038, the number of women living with dementia over the age of 85 is expected to surpass the total number of men living with dementia across all age groups in all provinces. At a provincial level, dementia prevalence is projected to be highest in the relatively older provinces in central and eastern Canada.

What to do?

Canada’s policy-makers must prepare for this surge in demand for care and support. They must do so by finding the right balance between providing more and better options to receive care at home, and when that is no longer feasible, provide high-quality facility-based care. For those with dementia who can continue to live at home – and there are many – we need to ensure the health system does not prematurely admit them to institutional care because home and social supports for them and their caregivers are lacking. This will necessitate not only looking at additional funding for home care, but will force deliberate reallocation of funds from institutional to community-based care.

Delaying institutionalization through community-based supports will be critical from both a quality of life and affordability perspective.

There are already some promising signs that policy and funding may be moving in this direction.  Alberta’s recent continuing care review proposes shifting the distribution of services to a ratio of 70 per cent long-term home care and 30 per cent facility-based care from the current ratio of 61:39. The shift is expected to result in savings of $452 million in annual operating costs and a cumulative capital cost savings of $1.7 billion. Most importantly the review documents expected improvements in quality of care as a result. The challenge for Alberta and all provinces moving in this direction will be to ensure that these savings do not fall into the “black hole” of acute care but rather are strategically reinvested in high-value services that respond to the needs of seniors, especially those living with dementia.

Local governments will also have to prioritize community support services and access to appropriate care networks to reduce the impact of the aging population on provincial health-care services.

For those who need facility-based care, the way in which long-term care homes are built, designed and run must be re-imagined to better accommodate those with cognitive disabilities. This includes providing funding for behavioural support programs, hiring specialized staff, improving staff training and support, all with the goal of maximizing quality of life for residents with dementia.

Of course, caregiver support and resources will be critical. The quality of life we are able to offer growing numbers of citizens living with dementia will depend largely on how well we “care” for informal caregivers who deliver the vast majority of support for diagnosed with the disease, especially in the early stages.

The way forward

Although the shortcomings in LTC were obvious to informed experts and families with loved ones in care long before the pandemic, the difference now is that more people now recognize the lamentable state of seniors care as one of the most pressing issues in Canadian health care. With the growing prevalence of dementia in Canada, LTC reforms must account for the anticipated demographically driven increase in need.

André Picard rightly concludes that the starting point for a meaningful action is neither a lengthy bureaucratic review nor a political blame game,  it’s about articulating, committing to and ultimately “giving life to our values.”  A year from now, Canadians expect that LTC reform will be well underway. It’s arguably the most important “call to action” since the first days of medicare in this country.  Let’s hope we’re up to the challenge.

This article is part of the Kick-starting Reform in Long-Term Care special feature. 

This article first appeared on Policy Options and is republished here under a Creative Commons license.