March 9, 1998

To: Community and Neighbourhood Services Committee

From: Commissioner, Community and Neighbourhood Services

Subject: Report of the "Dementia Task Force"

Purpose:

To summarize the findings and recommendations from the "Dementia Task Force", which was comprised of staff from the municipalities of Toronto, Hamilton-Wentworth, Halton, Peel, Niagara, York, and Durham.

To provide facts related to dementia projections specific to the population of the City of Toronto, and to detail additional recommendations based on assessed potential impact relevant to the City of Toronto.

Funding Sources, Financial Implications and Impact Statement:

There is no net impact as a result of the recommendations contained in this report. Rather, the report sets out the urgent need for the Ministry of Health to make immediate and future investments in care and service for individuals with dementia. Without significant new and sustained financial investment in this area of health care delivery, there will be a growing and unacceptable gap in service for individuals suffering from Alzheimer's Disease and related dementias, and their families. As a result, these individuals will be placed at significant risk.

Recommendations:

It is recommended that:

(1) City of Toronto Council support the recommendations detailed in the report of the "Dementia Task Force", namely:

(2) City of Toronto Council advocate for the enhancement of funding and resources to provide care and service for individuals with dementia and their families within the City of Toronto, which focus on supporting the individual in an environment that is as normalized as possible, and includes both facility and community options, and:

(3) future care and service delivery for those with dementia within the City of Toronto be planned and implemented with recognition of unique needs encountered as a result of the multicultural and linguistic diversity of the City's population;

(4) future financial investments by the Ministry of Health include dedicated enhanced funding for the provision of (short-term) respite services, in both facilities and the community; and

(5) the appropriate City officials be authorized and directed to take the necessary action to give effect thereto.

Background:

In April 1997, Dr. Robert Hopkins, Ph.D., Psychogeriatric Unit, Kingston Psychiatric Hospital, shared his clinical research bulletin, "Dementia Projections for the Counties, Regional Municipalities and Districts of Ontario", at a panel presentation hosted by the Alzheimer Society of Durham Region.

Dr. Hopkins' projections were based on population projections prepared by the Province of Ontario and dementia prevalence rates validated in clinical research. His dementia rates focused on "severe and moderate" dementia only, identifying that these are the individuals who will require support from the health care system. As a result, Dr. Hopkins' projections should be seen as conservative, at best.

Persons with dementia are defined as having "severely impaired memory and reasoning ability, usually with disturbed behaviour, and associated with damaged brain tissue". Individuals with "severe to moderate" dementia require 24-hour supervision, assistance with daily functions such as eating and dressing, and experience a range of behavioural problems, including hallucinations, depression, paranoia, aggression, etc.

Based on the significance of the data shared by Dr. Hopkins at the abovementioned conference, Durham Regional Council initiated an invitation to the Regional Chairs from the seven regions in the Greater Toronto Area to have staff knowledgable in the care of individuals with dementia participate on a Task Force mandated to study and respond to this serious issue. Two staff from the Homes for the Aged Division participated on the resultant "Dementia Task Force", on behalf of the former Municipality of Metropolitan Toronto. In addition, staff from the Regional Municipalities of Durham, Peel, Halton, Niagara, York, and Hamilton-Wentworth participated in the initiative.

The task force met on a number of occasions over the period of April 1997 until December 1997, and finalized and released its report to the relevant Mayors/Chairs of the participating municipalities in January 1998.

This report attempts to provide members of the Community and Neighbourhood Services Committee with an understanding of the significance of Dr. Hopkins' findings, in terms of the capacity of the current health delivery system to respond to the growing dementia rates; to summarize the findings and recommendations of the "Dementia Task Force"; to outline the significance of the demographic projections specific to the City of Toronto; and to comment on the enhancements that will be required in the current health delivery system to ensure that it is adequately prepared to meet the needs of individuals with dementia residing within the City of Toronto who will require care and service now and in the future.

Discussion:

Both population projections and dementia projections are critical in determining the health care needs of a future population and the health delivery system's capacity to meet these needs. First, Dr. Hopkins' clinical work identifies that the elderly population (ie., over the age of 65) will increase 53 percent by the year 2010, and by nearly 120 percent by the 2021. This growth will result in a significant increase in age-related medical disorders and an expanded demand for services to seniors in a variety of areas, including social and recreational programming, transportation, assistance with financial management, safety and security, home help, and personal support.

Second, there is evidence that the prevalence of dementia in society is increasing, as our capacity to successfully treat physical illnesses improves. Dr. Hopkins' clinical research studies detail a projected increase in Ontario's dementia rate of 85 percent by the year 2010 and 150 percent by the year 2021. In terms of numbers of individuals with dementia, statistics show that Ontario was caring for 82,000 persons with dementia in 1992; this number swelled by over 15,000 by 1997; by 2021, there will be 206,000 persons with dementia who will require care and support.

Dr. Hopkins' data indicated that these problems will be especially dramatic in the municipalities across the province which have grown rapidly during the 1970s and 1980s. As an example, the dementia rate in Durham Region will grow by 209 percent. The average increase in the combined municipalities of Durham, Halton, Hamilton-Wentworth, Niagara, Peel, Toronto, and York is 124 percent. The increases in individual communities within this group range from 80 percent in Niagara to a 250 percent increase in Peel Region. The projected increase for Toronto is 81 percent. Appendix 1 illustrates the projections in dementia cases in each region.

In terms of numbers of individuals with dementia dependent on Toronto's health delivery system for care, there were 20,367 individuals with dementia in 1992, and 22,315 in 1995. Based on projection rates, there will be 35,988 individuals with dementia by the year 2011 and 44,251 by the year 2021.

(a) Work of the Dementia Task Force

It is clear that these increases will present a significant challenge to the respective communities' ability to service the health, social, and economic needs of this target population. The public and private costs to society as the number of individuals with dementia increases will be high, given the nature of the care and service that they will require.

Due to the nature of dementia, there is a need for enhancement in the full range of services, from community-based options to long-term care facilities, specifically designed to meet the unique needs of a population with severe dementia. It is imperative for planners to realize that physical environments in both existing and future long-term care facilities will require appropriate design and structural changes to effectively care for the dementia population. Funding to support augmented staffing levels will be required; staff will require additional training with respect to the specialized care that individuals with dementia require.

Next, there is a need to address this serious and complex issue within a framework of health policy planning. Early intervention from all levels of government is crucial in order to adequately prepare, plan, and fund organizations to meet the needs of this target population. Significant investment is required in both research and service delivery. Health research is a key initiative in the development of prevention and treatment for dementias. Current health care deliverers must work collaboratively to improve coordination of information, care and service.

Consideration must also be given to reinvesting a substantial portion of the savings realized from hospital restructuring in order for the overall health system to be able to adequately respond to the future demands for dementia care; reinvestment is required in both community-based care and long-term care facilities.

Last, legislation regarding financial (eg., tax) incentives to assist caregivers in the community, on both the provincial and federal levels, should be considered to alleviate some of the financial burden associated with the challenge of providing care at home.

(b) Other Issues Relevant to the City of Toronto

There are 68 long-term care facilities within the City of Toronto (including nursing homes and homes for the aged), offering a total of approximately 11,850 beds. There are currently 5,020 individuals on the waiting list for placement in these long-term care facilities. The City of Toronto owns and operates 10 of these facilities; there are 2,641 beds within the City's 10 Homes for the Aged (ie., 22 percent of the total number of beds); and 1,050 persons are currently awaiting admission in one of the City's homes (30 percent of the total waiting list). Currently, 65 percent of the residents living in the City's homes suffer from cognitive impairment, mental health problems, and/or dementia. In addition, the severity of dementia is evidenced to have increased amongst both applicants/residents of the Homes for the Aged and clients of the Division's supportive housing and homemakers programs.

Within the Homes for the Aged, a total of 19 beds have been approved by the Ministry of Health to offer short-term (respite) admissions; a significant number of the admissions done to these beds are for individuals with dementia whose caregivers require short-term relief in order to continue coping with the day-to-day pressures of providing care. In addition to the 19 short-term beds within our own Homes for the Aged, there are an additional 64 short-stay beds in the other 58 long-term care facilities within the city boundaries. This level of resource will be grossly insufficient to respond to the projected future need.

Although the Division operates five Adult Day Centres and provides service to a number of individuals with dementia in these Centres, none of the Centres receive the higher level of funding set aside for designated Alzheimer's Day Programs.

In addition to the care and service directly provided by the Homes for the Aged Division, the Community Services Department funds a number of community-based organizations that deliver service to this client group. There are 15 Alzheimer's Day Centres within the City of Toronto; in addition, there are six Day Centres which specialize in services to the frail elderly, and five integrated Day Centres which provide service to both cognitively impaired and cognitively intact clients. The Community Services Department also provides a grant to the Alzheimer's Society.

Notwithstanding the levels of service currently provided within Toronto, and the commitment of the City's service providers to respond to the specialized needs of individuals with dementia, there will be substantial gaps in future service delivery if provincial planning and investment does not occur now. First, the huge increase in individuals with dementia will place extra significant demands on the hospital system. Already, the decrease in emergency room capacity is having a negative effect on the elderly; individuals are waiting long periods of time for admission, or are being turned away; this introduces significant risk as individuals with dementia require comprehensive assessment for possible acute medical problems, as they do not have the communication skills to detail their own complaints. The frail, confused elderly do not have the capacity to cope with long waits in emergency departments, and their health may be further compromised when emergency department staff have other legitimate priorities.

Second, there are no funded Regional Geriatric Programs (RGP) in the municipalities that surround Toronto. Without the creation and funding of such programs in the broad Greater Toronto Area, all individuals with dementia from the GTA will rely on the RGP in Toronto, for the specialized assessment and treatment available for this target group. This reliance and gravitation to the larger urban centre will increase the health care costs in Toronto, and negatively impact the system's ability to care for its own citizens.

Next, the long-term care facilities within Toronto are not universally designed to care for a dementia population. The Ministry of Health must commit to making an investment in retrofitting a number of existing physical plants to meet the specialized needs of this growing target group. It is worthy of note that a number of individuals with dementia currently residing in our facilities are below the age of 65; younger persons with dementia are able-bodied, have high energy levels, and present a number of challenges with respect to designing their care programs. Specific design features should be built into new construction to meet the needs of this special group.

Next, there is a marked need for a major increase in the number of long-term care "spaces" available for community care. Short-stay/respite program must be increased and funded adequately. Adult Day Centres must be designed and staffed to provide quality programming to individuals with dementia.

The Health Services Restructuring Commission (HSRC) recognized the growing need for enhanced long-term care services and recommended that 5,207 new long-term care beds be added within the City of Toronto; the Commission also recommended that 4,181 non-institutional spaces be added, including attendant care, respite care, and supportive housing. This expansion is a critical step to ensure that hospital restructuring does not totally incapacitate the already over-burdened and under-resourced long-term care system.

Last, the cultural diversity of the City of Toronto poses a number of issues related to dementia care not generally seen in other communities. For example, 19 percent of the residents in our Homes for the Aged speak a language other than English; 9 percent speak no English at all. These statistics are approximately double the provincial average. This profile presents a unique challenge to staff, that is further exacerbated when the individual also suffers from dementia. Many individuals with dementia lose the ability to speak English, especially if it is a second language. Loss of culture and language familiar to the individual has the impact of adding to anxiety and exacerbated behavioural problems. In turn, these issues place higher demands on the staff providing care and service.

Conclusions:

The prevalence of dementia and its associated health care costs are staggering; Dr. Hopkins notes that the estimated costs of treating individuals with dementia throughout Canada in 1991 was over $3.9 billion. Dr. Hopkins' dementia projections provide evidence that unless significant changes are made in the level and type of resource available to this population in the future, there will be a crisis in health care which will result in a heavy burden on their communities and on society as a whole.

There is an urgent need for proactive action at the provincial level. The "Dementia Task Force" has made a number of recommendations, which are fully endorsed by staff, in order to respond to this growing crisis. In addition, the health delivery system within the City of Toronto could be improved by enhanced planning and coordination, and by advocating for and securing much needed funding, in order to meet the needs of our future population.

Contact Name:

Sandra Pitters, General Manager, Homes for the Aged Division

Tel: 392-8907; Fax: 392-4180; E-mail: sandra_pitters@metrodesk.metrotor.on.ca

General Manager, Homes for the Aged Division

Commissioner, Community and Neighbourhood Services