A new tool has been designed that can predict risk of death for dementia patients, as well as potential admission to a long-term care facility.
The recent tragic outbreaks of COVID-19 in long-term care homes highlight the need to have care discussions with residents and their caregivers. According to new research in CMAJ (Canadian Medical Association Journal) this new tool may help conversations between health care providers, patients and their families.
Dementia is a progressive, life-limiting illness, and personalised information about survival and potential transition into long-term care facilities, like nursing homes, can help patients and care providers with prognosis and planning. This is, however, not always done, perhaps partly because easily accessible tools have not been available.
The global prevalence of dementia is increasing and is expected to triple by 2050.
Preparing for the future
Dr Peter Tanuseputro, a family physician and researcher with the Bruyère Research Institute, the Ottawa Hospital Research Institute and ICES, Ottawa, Ontario, said: “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.
“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 five years. This information can be used in conversations about what to expect.
“For newly diagnosed dementia patients and their families, personalised information about their trajectory may be helpful to plan for the future, including advance care planning and planning for additional supports.”
Findings from the study
The researchers found that more than half of individuals from the data used for the study (55%) died within five years of diagnosis and almost half of those who died (28%) lived in institutions. Only one in four people were still alive and living in the community five years after diagnosis.
Older age, male sex and presence of chronic obstructive pulmonary disease (COPD), congestive heart failure and kidney failure at the time of diagnosis of dementia were the most important factors that predicted death and admission to long-term care. The impact of organ failure on prognosis in people with dementia has not been well documented in other studies.
The researchers used data from the paper to develop an online dementia calculator.
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 maximise the quality of life remaining.”