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.

Att avvika från sedvanliga medicinska insatser kan för utomstående framstå som en form av försummelse eller att ge upp, särskilt när personen är yngre. Men aktuell forskning tyder på att aggressiva medicinska ingrepp – för infektioner, frakturer, sväljproblem, etc. – kan orsaka mer ångest och obehag för dem som lever i de avancerade stadierna av demens, utan att förbättra kvaliteten på deras återstående dagar. Samarbete med högkvalitativ hospice erbjuder en möjlighet: att ge personer med FTD och deras familjer makt: att ordna tröst i en sjukdom som obevekligt har tagit bort den.