Professional dementia literature shows that most people will not choose aggressive medical interventions to prolong life if they enter an advanced stage of dementia but would rather opt for measures like comfort care. Unfortunately, people with terminal dementia often instead receive aggressive medical treatment that does not meaningfully improve quality of life.

Studies of advanced dementia are usually based on elderly people with Alzheimer’s disease. People with FTD, however, face an even more difficult road to receiving the comfort care they may prefer. Typically, a young-onset dementia, FTD occurs long before many people consider advance care directives. Additionally, FTD poses an acute threat to family stability. Its high emotional, social and financial toll leaves many dedicated family caregivers isolated, exhausted and overwhelmed. The behavioral changes that FTD causes can tear families apart, leaving the person diagnosed without loved ones to advocate health care providers on their behalf.

Departing from customary medical interventions may appear to outsiders as a form of neglect or giving up, especially when the person is younger. But current research suggests that aggressive medical interventions —for infections, fractures, swallowing problems, etc.—may pose more distress and discomfort to those living in the advanced stages of dementia, without improving the quality of their remaining days. Collaboration with quality hospice care presents an opportunity: to empower persons with FTD and their families: to arrange for comfort in a disease that has relentlessly taken it away.