Dementia is a progressive and neurodegenerative disease that affects 50 million people globally. People living with dementia may die before they reach the advanced stage, or they may live in the advanced stage for several years.
The independent contribution of dementia to mortality is currently difficult to assess, as older people commonly have comorbidities that may or may not be related to dementia, which can also shorten their lives.
The dementia trajectory is variable, with progressive decline disrupted by acute events (such as an infection or falls) where the person may recover or experience an increased rate of decline in health until the end of life. Prognosis is unpredictable and can vary between and within individuals.
Components on how end of life is defined in dementia included: limits in current measures to define end of life in dementia, family knowledge, and staff knowledge.
There is a tendency to use single-domain validated tools: some studies focus on cognitive impairment and others on functional decline, but most do not consider the holistic needs of the individual.
Dementia should not be considered life limiting in clinical practice, because it may result in a lack of specialized care for patients approaching the end of life whereby their physical, spiritual, and psychosocial needs are not addressed in a timely manner.
Given the complexity of defining end of life and the unpredictable trajectory in dementia, focusing on the needs of the individual may be more suitable than focusing on defining end of life.
Physicians can best help their patients establish goals of care and levels of medical intervention that are most consistent with existing medical knowledge and family/patient preferences.
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Adapted from Browne B et al. Defining End of Life in Dementia: A systematic review. Palliat Med. 2021 Jun 17:2692163211025457. Internet. Available at https://journals.sagepub.com/doi/full/10.1177/02692163211025457. Accessed on November 26, 2021.