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.

Apartarse de las intervenciones médicas habituales puede parecer a los de afuera como una forma de negligencia o abandono, especialmente cuando la persona es más joven. Pero las investigaciones actuales sugieren que las intervenciones médicas agresivas (para infecciones, fracturas, problemas para tragar, etc.) pueden causar más angustia e incomodidad a quienes viven en las etapas avanzadas de la demencia, sin mejorar la calidad de los días que les quedan. La colaboración con cuidados paliativos de calidad presenta una oportunidad: empoderar a las personas con FTD y a sus familias: para lograr consuelo en una enfermedad que implacablemente se lo ha quitado.