The number of persons with dementia is expected to triple to 13.2 million over the next 40 years, and many will die in nursing homes.1 Up to 90% of those with advanced dementia require nursing home level of care at some point in their lives, and 67% of dementia-related deaths in the United States occur in nursing homes today.2,3 Yet, many nursing home residents with advanced dementia do not receive optimal end-of-life care.3 Advance care planning is underused; burdensome interventions such as tube feedings are overused; and distressing symptoms such as dyspnea, pain, pressure ulcers, agitation, and aspiration are common and not adequately managed.4 A major barrier to improving end-of-life care is that very few nursing home residents with advanced dementia are recognized as being at high risk for death. For example, one study found that only 1% of nursing home residents with advanced dementia were perceived to have a life expectancy of less than 6 months, when, in fact, more than 70% died within that period.3 Therefore, while improving end-of-life care for nursing home residents with dementia will require a multifactorial approach, a critical first step is recognizing dementia as a terminal illness in nursing home residents.
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