Dementia is a progressive, life-limiting illness that impairs cognitive function. Personalized information about survival and long-term care is critically important to help dementia patients and care providers with prognosis and planning.
The new tool will help facilitate important conversations about what comes next after dementia diagnosis.
Dr. Peter Tanuseputro is a family physician and researcher with the Bruyère Research Institute and the Ottawa Hospital Research Institute.
“For patients, families and caregivers, these conversations can be difficult and too often they don’t happen at all,” said Dr. Tanuseputro. “If we can help patients and families understand what is likely to happen to their health, and what the next few years may hold, it can help with planning, perhaps provide some peace of mind, and ensure they maximize the quality of life remaining.”
The investigation was focused on data from more than 108,000 people living in Ontario who were diagnosed with dementia between 2010 and 2012.
The researchers found that 55 percent of the individuals had died within five years, and almost half of those who died lived in an institution.
The study also revealed that only around 25 percent of the study subjects were still living in the community five years after diagnosis.
The greatest indicators of death and admission to long-term care facilities were older age, chronic obstructive pulmonary disease (COPD), congestive heart failure, and kidney failure at the time of diagnosis.
“The majority of residents in long-term care homes have been diagnosed with dementia. Our study shows that the survival of many people with dementia is poor. It may be that many would choose care that focuses on comfort care and quality of life should they become acutely ill,” said Dr. Tanuseputro.
“We have developed a tool that asks simple questions about a person at the time of dementia diagnosis and translates it to the chance of dying and of entering a nursing home over the next 5 years. This information can be used in conversations about what to expect.”
Data from the study was used to develop an online dementia calculator.
“For newly diagnosed dementia patients and their families, personalized information about their trajectory may be helpful to plan for the future, including advance care planning and planning for additional supports.”
The study is published in the Canadian Medical Association Journal.