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.

At afvige fra sædvanlige medicinske indgreb kan for udenforstående forekomme som en form for omsorgssvigt eller opgivelse, især når personen er yngre. Men aktuel forskning tyder på, at aggressive medicinske indgreb - for infektioner, brud, synkeproblemer osv. - kan udgøre mere angst og ubehag for dem, der lever i de fremskredne stadier af demens, uden at forbedre kvaliteten af deres resterende dage. Samarbejde med hospice af høj kvalitet giver mulighed for: at styrke personer med FTD og deres familier: at sørge for komfort i en sygdom, der ubønhørligt har fjernet den.