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.

Desviarse de las intervenciones médicas habituales puede parecer a los extraños como una forma de negligencia o abandono, especialmente cuando la persona es más joven. Pero la investigación actual sugiere que las intervenciones médicas agresivas (para infecciones, fracturas, problemas para tragar, etc.) pueden generar más angustia e incomodidad para quienes viven en las etapas avanzadas de la demencia, sin mejorar la calidad de los días que les quedan. La colaboración con el cuidado de hospicio de calidad presenta una oportunidad: para empoderar a las personas con FTD y sus familias: para hacer arreglos para el consuelo en una enfermedad que lo ha arrebatado implacablemente.