Approximately 175,000 people in Ontario live with dementia, a significant contributor to mortality, morbidity and health-system expenditure.
Ongoing research suggests that the risk of acquiring the problems we dread – dementia, disability and dependency – can be modified by taking steps to limit damage to the brain caused by stress, sleep problems and inactivity throughout the life course. Additionally, we know that persons living with dementia can remain at home if given early access to a coordinated mix of supports, including clinical and non-clinical services (e.g., memory clinics, respite care, meal programs), community support services (e.g., supportive housing, adult day programs, Medic Alert Safely Home), and home adaptations (e.g., accessibility and orientation aids, monitoring technology).
But dementia makes living at home difficult when four key functions are affected: looking after your financial affairs; self-care and personal hygiene; cleaning and maintaining a living space; and driving. Ontarians with dementia already cost millions of dollars each year. Forecasts show Ontario’s growth in its older adult population within 20 years will result in a several-fold increase in dementia in the coming decades.
In Ontario, 14,000 family physicians are situated in an opportune setting – primary care – to improve the management of dementia. Although clinical practice guidelines provide recommendations for diagnosing and managing dementia, reviews of this evidence reveal physicians’ lack of familiarity with diagnostic criteria, time and financial constraints, stigma when disclosing the diagnosis and minimal confidence. Physicians are hesitant to reveal dementia diagnoses to nearly half of patients, and population-level studies reveal that family physicians prescribe cholinesterase inhibitors (that are approved to treat dementia due to Alzheimer’s disease) to only a fraction of patients living with dementia.
A recent systematic review graded four models of post-diagnostic primary care:
- Primary care provider (PCP)-case management partnership models offered the most promise, with impacts on neuropsychiatric symptoms, caregiver burden, distress and mastery and health-care costs.
- PCP-led care with specialist consulting support did not have additional effects on clinical outcomes or costs over usual primary care.
- PCP-led care led to better caregiver mental health and reduced costs compared with dementia clinics.
- Integrated primary care memory clinics had limited evidence for improved quality of life and cost-effectiveness compared with dementia clinics.
Although the model does not operate in Ontario, the review found that PCP-case management partnership offered the most promising evidence. The review also concluded that post-diagnostic dementia primary care models need further evaluations.
In 2019, Health Quality Ontario commissioned a system-level evaluation of Ontario’s MINT clinics (previously known as Primary Care Collaborative Memory Clinics). MINT clinics provide post-diagnostic dementia primary care and are family physician-led and operate in Family Health Teams. These inter-professional teams are funded through a blended capitation and salary payment model by Ontario and typically include primary care physicians, nurses, nurse practitioners, social workers, pharmacists, dietitians and sometimes other health professionals. Patients are referred to neurologists, psychiatrists and geriatricians when the MINT clinic judges support is needed. Thus, MINT clinics are most like the PCP-led care with specialist consulting support.
Using health administrative data from IC/ES, Ontario’s leading health and social data research organization, and other methods, the report generated important evidence about 102 MINT clinics. The study included a longitudinal cohort design to assess the health system impact of MINT clinics compared to dementia care in other settings and revealed a high adoption rate– 102 of 113 family physicians who attended training successfully established these clinics.
MINT clinics operate with many challenges, including limited resources from the local health authority or the provincial government. Therefore, the operations of MINT clinics (in terms of resources, space, patient volume, referral sources) varies. In contrast, primary care of diabetes is provincially funded to entice family practice physicians to step into the role of operating a clinic.
People with dementia can remain at home with early access to a coordinated mix of supports.
Corroborating other evidence, the use of population-wide health administrative data showed that specialist referrals to neurologists, psychiatrists and geriatricians was significantly reduced among MINT patients compared to dementia patients receiving care elsewhere. MINT patients were found to have fewer and delayed admissions to long-term care, more admissions to home care, longer periods until the first emergency department visit, delayed hospitalizations and lower cost per day to the health system following the identification of dementia.
However, MINT clinics are not accessible in all regions of Ontario, including in areas with a relatively higher dementia prevalence (e.g., Toronto, Ottawa, Peterborough, Thunder Bay and the upper Great Lakes). The clinics are primarily located in southwestern Ontario, near the original clinic in Waterloo, and reach only 6 per cent (10,500 of 175,000) of persons living with dementia in Ontario.
In addition to MINT clinics, the Health Quality Ontario report identified other types of dementia clinics that are not led by family physicians with specialist consulting support that operate across Ontario. These clinics most closely resemble integrated primary care memory clinics, but some do not include primary care teams and are hospital-based. In contrast to MINT clinics, these benefit from different funding approaches, operate within different agencies (e.g., hospitals), and can involve health practitioner teams (e.g., nurses, social workers, pharmacists, nurse practitioners).
- The Geriatric Assessment and Intervention Network (GAIN) Clinic providing coordinated clinical care and education for frail older adults and their families.
- An aging clinic with a multidisciplinary team in an urban area.
- A memory clinic consisting of a team of health professionals (e.g., neurology, geriatric psychiatry, occupational therapy, neuropsychology) within a tertiary mental health hospital that provided care only to patients from specialty clinics and MINT clinics, and usually involves one or two sessions with the caregiver.
- A specialist geriatric clinic in a northern Ontario general hospital and a clinic in a northern Ontario academic hospital.
- A neurologist providing geriatric services in an urban teaching hospital.
- An urban specialty memory clinic that is the only dedicated memory clinic in the region receiving 95 per cent of the referrals from family physicians.
- An urban specialty memory clinic within a mental health hospital with no geographical restrictions for referral.
- An aging clinic in an urban teaching hospital with a central intake function for all specialized geriatric services.
In summary, Ontario does not have a standardized post-diagnostic dementia primary care model. There is variation in access by different geographic locations, variation in target populations and an absence of policies that facilitate funding.
For other prevalent health conditions, Ontario has provincial clinical networks. For example, CorHealth Ontario is a network of cardiac, vascular and stroke clinics across 38 hospitals. Another is the Ontario Renal Network, a network of 23 regional renal programs. Delivery in these networks involves all key organizations across the province.
A dementia care board should take the lead in setting up a network, defining the population with respect to Ontario Health Team catchment populations and local authority boundaries where teams have yet to be established.
The network should produce an annual report for the populations served, using a single set of criteria, with the network organizations learning from one another as a community of practice.
The network should take the lead in changing the culture from one which expects people living with dementia to be viewed only as passive recipients of care to one that sees them as a subgroup of the population able to stay at home with appropriate community supports and as valued members of our community.
This method based on leadership and management principles of systems, networks and culture change are being used by the Ministry of Health in establishing Ontario Health Teams and a similar approach should be established for a province-wide dementia network.
As demonstrated by CORHealth Ontario and Ontario Renal Network, establishing a province-wide dementia clinical network would foster collaboration among family physicians, neurologists, psychiatrists and geriatricians. In addition, a dementia clinical network would drive evidence-informed practice, inform planning, access and resource allocation and measure and report on quality and outcomes.