Grant: Project Grant

Dementia is associated with a limited life expectancy and has become the leading cause of death of females in many Western countries. Among Canadians who are diagnosed with dementia, the average life expectancy is just 3.3 years. Despite these trends, clinicians rarely have discussions about the impact of dementia on life expectancy with their patients. This lack of discussion is partly because there are no tools that provide personalized and easy to understand information on how long a person with dementia has left to life. As a result, less than one in three Canadians dying of dementia receive palliative care before death. This gap is also partly a result of how we have designed the delivery of end-of-life care; its focus is on patients with terminal diseases, such as cancer, which have a clear pathway of often quick decline. Dementia, on the other hand, has the trajectory of gradual cognitive and physical functioning decline which makes the task of identifying a terminal phase difficult. Consequently, clinicians are often faced with the difficulty of deciding when to introduce palliative care. In this project, we propose to look at the survival trajectory of those with dementia, capturing patients at various points of healthcare contact-including at diagnosis, home care start, long-term care (i.e., nursing home) entry. We will focus on the delivery of palliative care to identify gaps in care and assess the impact of palliative care on the dying experience at various points of the disease progression. Finally, we will create user-friendly online calculators that will be hosted on our team's web platform, www.projectbiglife.ca, which will allow patients, families, and caregivers to answer personalized questions, such as "how long can this person be expected to live?" or "what typical healthcare experience and outcomes can be expected for this person?". Our ultimate goal is to enable better care planning and delivery for people with dementia.