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Dementia care in Canada: Implementation considerations and the lived experience perspective

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By Ashley Baddeley and Tamara Rader

More than 700,000 Canadians are currently living with dementia, a syndrome that leads to progressive memory loss and a deterioration in cognition over time. Associated symptoms range from mild and not debilitating (i.e., forgetfulness, limited attention span, mood swings, and mild coordination issues) to all-encompassing (i.e., inability to communicate and/or care for oneself). Dementia (and Alzheimer disease — the most common form of dementia) may not only significantly interfere with a person’s daily living but can also lead to a high burden of stress for affected individuals, their caregivers, and the health care system.

There is currently no cure for dementia, but 4 drugs are available in Canada that may modestly improve cognitive and behavioural symptoms: donepezil, rivastigmine, galantamine, and memantine. However, these treatments do not slow down or stop cognitive decline associated with dementia and Alzheimer disease. Adjunct medications and other non-pharmacological treatments can also be prescribed to alleviate related symptoms (e.g., depression, sleep disturbances, agitation), which may improve general well-being and quality of life.

For the first time since 2003, several new drugs are in the pipeline for future review by regulatory bodies — an exciting prospect after nearly 20 years. Although these new drugs have yet to receive regulatory approval in Canada, CADTH recognizes the importance of proactively assessing the readiness of the Canadian health care system in case the drugs are, indeed, approved. CADTH is an independent, not-for-profit organization responsible for providing health care decision-makers with objective evidence to help make informed decisions about the optimal use of drugs, medical devices, tests, and procedures.

To assess system readiness, CADTH is investigating a number of “implementation factors,” including the availability of health care staff, treatment centres, and medical equipment to diagnose, treat, and support people with dementia. CADTH is currently reviewing published literature, health system data, and real-world evidence to better understand which implementation factors would require significant changes if new drugs were to be introduced. As a first step, CADTH assessed the availability of neuroimaging services in Canada should new amyloid-targeted drugs for treating Alzheimer’s disease become available. Findings suggest that, if amyloid-targeted drugs are approved, investment in new imaging equipment may be required. In addition, it may be necessary for decision-makers to seek opportunities to maximize the use of existing capacity. (See The Role of Neuroimaging in Drugs Targeting Amyloid-Beta in Alzheimer Disease Part 1 and Part 2.)

CADTH recognizes that a fulsome assessment and review of dementia treatments must include the knowledge, perspectives, and experiences of people living with dementia and their caregivers. Therefore, CADTH is collaborating with people with dementia, their families, and communities so they can provide their insight on the diverse, individual needs that currently exist for dementia care and support.

CADTH held an open call (November 2021) for people with lived experience of dementia to share their perspectives, concerns, and any other considerations that may inform CADTH’s future work (and prioritization of work) in the dementia space. In December 2021, CADTH hosted a Patient and Caregiver Panel — 7 individuals living with dementia were invited to discuss their top treatment goals and support needs related to dementia care. They shared their expectations and hopes for new treatments; concerns about diagnosis, traveling to appointments, covering the cost of treatment, quality-of-life issues, safety, and ethics; and interest in other non-drug treatments for mild cognitive impairment.

The panel fostered an engaging conversation that brought forward many interesting and insightful ideas. For example, some panelists suggested that confusion and distress during hospital visits could be reduced if family members were allowed to accompany a person during a test or scan, key details for the reason of the visit were written down, or a reassuring staff member was made available to guide families through clinic visits. Panelists also emphasized the importance of having access to interventions for keeping people vibrant and active and maintaining overall health. Examples of these interventions include medication patches, technologies to give people freedom to “live at risk,” and technologies that can increase a sense of connection with others and reduce isolation, particularly for people living in long-term care.

A full summary of the panel’s insights will be published in CADTH’s Canadian Journal of Health Technologies to ensure they are available to the broader health system and the medical and research community. These insights could be used by CADTH to inform future reviews of medical procedures, devices, diagnostics, and drugs for dementia.

Other examples of CADTH work in the area of Alzheimer disease and dementia include a recent report on homelike models of long-term care, a report on GPS locator devices, a brief summary of evidence for dementia villages in long-term care, a review of the evidence for patient navigation programs for people with dementia, and an ongoing review of aducanumab for the treatment of Alzheimer disease. Additional reports can be found in our evidence bundle on aging and health.

Subscribe to New at CADTH (cadth.ca/subscribe) to stay updated on CADTH’s latest reports, including those on dementia.

To learn more about CADTH, please visit cadth.ca, follow us on Twitter @CADTH_ACTMS, or speak to a Liaison Officer in your region: cadth.ca/Liaison-Officers. More information about the Patient and Community Engagement program at CADTH can be found at cadth.ca/patient-and-community-engagement.

Ashley Baddeley (M.Sc.) is a Program Officer at CADTH. Tamara Rader is a Patient Engagement Officer at CADTH. They would like to thank people with lived experience for joining the panel to comment and share perspectives from the dementia community.

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