Designing Dementia Care

Designing Dementia Care Unit

Green Chinese takeaway boxTakeaways

  • Recognize that the inherent ageism in our society permeates policy and practice
  • Appreciate the need to create residential care facilities that afford full and dignified lives for older adults with cognitive or physical limitations
  • Understand that in an institutional setting, the conditions of care and the conditions of work are fundamentally connected, and that good policy takes this into account
  • Recognize that the deinstitutionalization era as a complex historical period which included trans-institutionalization for client groups who didn’t fit the primary policy directive

Three green gears working togetherArtefacts

COVID-19 focused attention on the deficits in Long-Term Residential Care, but images, testimonies, documents like this 1956 memo and critical reflections such those shared by historian Jim Struthers in the clip below show that this problem has a long history.  Visit Artefacts: Dementia Care Self-Guided for a complete set of unit artefacts.

Green kitchen weigh scaleEvaluating the Artefacts

Green hand-held magnifying glassLearning Lens

middle aged man with beard and glasses
Canadian Historian Jim Struthers.

Jim Struthers is a noted Canadian historian of aging, dementia and social policy and a team member of the multi-disciplinary Re-Imagining Long Term Care Project, an international study of promising practices in residential care for the elderly funded by the Social Science and Humanities Research Council of Canada.  Four years ago he discovered a forgotten archival file dealing with Metro Toronto’s Greenacres Home for the Aged, a set of historical documents which told a scandalous story of vulnerable old people, fiscal cost-cutting, and disturbing conditions of life and work in a home for seniors with dementia. 

Greenacres had opened with public fanfare in 1956, part of program of functionalist modernization that resulted in the creation of Metropolitan Toronto.  Yet as Struthers makes clear, Greenacres was not a progressive institution inspired by new ideas about dementia care and the needs of an aging population, but a warehouse for people who were not wanted in other facilities. By the 1970s Greenacres was drawing media attention due to crowded conditions and poor care, then in November 1981 a political storm broke when the Canadian Union of Public Employees (CUPE) Local 79 made public a damning report detailing dreadful conditions at the public institution.

Artefacts in this unit include historical documents, excerpts from the 1981 CUPE report, and the voice of a former Greenacres nursing assistant.  In a series of video clips, Struthers himself speaks to questions raised through his research into Greenacres and his engagement with the Re-Imagining Long Term Care Project, arguing that we can – and should – use the study of the past as an exercise for envisioning a better future, particularly in the critical realm of elder care for people with mental health difficulties.  This story of Greenacres is useful for teaching future mental health practitioners because it challenges educators and learners to approach the question of best practices in long term care from the perspective of institutional residents and staff.  But a second and more nuanced takeaway is that, because we live in a society which stigmatizes and disregards both the elderly or those deemed mentally incompetent, crafting good dementia care policy and practice models must be appreciated as a continued exercise in self and social awareness and critical thought. 

Three green gears working together within a picture frameArtefacts in Context

Canadians have long had complicated thoughts and feelings about long-term residential care for our aged. We are ambivalent about institutionalizing aging kin.  Many of us gendered female – particularly if we are from racialized groups – find work in these institutions.  Media reports of violence, excessive drug use, and even murder in eldercare institutions surface periodically and then fade away.  But as the pandemic took hold in nursing homes across the country in the spring of 2020, the tragic vulnerability of residents and workers across this second-class health sector became starkly apparent and impossible to ignore.

The World Health Organization has declared that, “A society that treats its most vulnerable members with compassion is a more just and caring society for all.”  In the wake of COVID-19, we must reflect on Canada’s collective failure to acknowledge the important work of caregiving, and to develop and fund policies to keep seniors in care safe.  Jim Struthers is an author of, “Re-Imagining Long-term Residential Care in the COVID-19 Crisis,” a thoughtful and informed comment on the deficits of our current situation.  Download this report from the Canadian Centre for Policy Alternatives website and use it as a valuable addition to this unit.  

Canadians are well aware that we live in a rapidly aging society, where the number of people over the age of 65 will double over the next two decades. However, most of us do not think of the impact this demographic shift will have on residential accommodation for our elders.  Although the percentage of elderly Canadians living in long-term care facilities has declined since 1981, our burgeoning population of seniors will likely put increasing and intense pressure on our mixed system of commercially owned, charitable and public facilities, 35% of which already resemble small hospitals with over 100 beds and a high ratio of shared accommodation.  Women have been and will remain the majority population in residential homes for the aged, but numbers of male residents are increasing alongside younger residents with physical and mental health difficulties. In addition, the populations of Canadian old age facilities are becoming more ethnically diverse as the post-World War Two immigrants age. 

Statistics collected in 2004 tell us that more than 200,000 Canadians collectively contributed 414 million hours of waged work in homes for the aged, a significant figure that leaves out volunteer labour and unpaid overtime. Women typically make up more than 90% of the staff at any given institution, taking on employment as registered nurses, care attendants and support workers providing dietary, housekeeping, laundry and maintenance services.  With the obvious exception of registered nurses and licensed care attendants, the majority of these workers are trained on the job.  While nearly half of workers in long-term care would like to work on a full-time basis, 45% work on a casual or part-time basis.  Minimum staffing requirements vary across provinces. For example, Newfoundland requires that a least 3 staff be on duty for every 60 residents while Alberta has a minimum standard of 1.9 nursing hours per resident (hprd) of nursing and personal services.  Similar variations can be found in average staffing hours from one province to another.

As the Greenacres unit demonstrates, history provides a useful lens for considering societal attitudes and policy decisions regarding residential care for our elderly.  In the 19thand for much of the 20thcentury, the elderly in public old age homes were Euro-Canadians who were often physically fit, but lacked the finances or family support to live independently.  To take up residence in a public home for the aged – often called “The Workhouse” – was a mark of stigma and dishonour.  Even in British Columbia, where the elderly European settlers were venerated as worthy pioneers, old men entering the Provincial Home lost the right to vote.  Able-bodied inhabitants in early public facilities contributed to the institutional economy by doing laundry, helping with kitchen chores, working on institutional farms and performing caregiving tasks.  After World War Two Ontario, like other provinces, provided funding for the construction of public and philanthropic homes for the aged.  With the expansion of old-age pensions, fewer impoverished elderly Canadians were being forced into public institutions, and the populations of new post-war homes for the aged were meant to be modern, middle class “senior citizens.”  BC had established a geriatric mental facility on the grounds of the provincial psychiatric hospital in 1936 and added two other sites in the late 1940s, but Metro Toronto’s Greenacres Home for the Aged – the subject of this unit – was unusual for its time because it was a public old-age home created specifically for elderly people with cognitive or behavioural difficulties.  In terms of its residential population and location outside a psychiatric hospital, Greenacres looked to the future, but its administrative practices spoke to the heritage of the workhouse.   

Apart from a shared perception of residential care for the aged as a sign of failure and shame, few Canadians today would recognize the typical resident of our earlier elder institutions as a suitable senior client for institutional care.  Indeed, the health profile of people who enter residential accommodation in their last years has altered dramatically over the last few decades.  Across the country, an average of 60% of long-term care clients have dementia while 56% suffer from arthritis and other musculoskeletal conditions.  Critically, residential care for our elderly falls outside the scope of the 1984 Canada Health Act and is not funded under the umbrella of our national Medicare program. Our current system is a patchwork of provincial support for long-term care, putting pressure on acute care hospital beds and placing the burden of care on family and friends.  Analysts do not see an increase in funding in the future, but rather a growing trend toward private for-profit long-term care homes, and privatized home care in Canada, and a corresponding set of hierarchies of care and ability to pay.  The growing convergence of demography, need, and policy deficit is leading Canadians toward a crisis in residential care for some of our most vulnerable citizens.

The Re-Imagining Long Term Care Project, which provided the historical artefacts for this unit, is working to address this situation by locating and assessing promising practices in homes for the aged in Canada, Germany, Norway, Sweden, Britain and the United States.  This allows for a useful and thought-provoking consideration of jurisdictions with different models of funding, different work cultures and different practices.  Project researchers have found that good long-term care practices include models of work that facilitate relationships between caregivers and residents, building designs that meet the specific needs of residents (particularly those with dementia), and the integration of food, sociability, music and nature in the activities of daily living.