Although my dad was 54 when he was diagnosed, he was having predominant behavioral changes before then. That is why we were seeking answers from doctors to begin with. Frontotemporal Dementia is one of the forms of dementia that does affect a younger generation. Typically, from what I've read, onset is between the ages of 40 - 70 years old.
So, aside from all the other difficultes with this disease, the behavioral changes and loss of emotion for example, age is another giant issue to deal with. Like my dad, a lot of people who get this are still of working age with bills to pay and families they are caring for. There's a loss of income, working spouses/(often times) children still in school have to become caregivers and all future plans (because at age 40 - 70, you still expect you have a future with a loved one) are out the window.
And that's once you get a diagnosis! Because of his age, no one really thought about dementia outside of us speculating at first. We only knew about Alzheimer's before this and although my dad had his memories, we went even that route trying to find answers, or at least to rule it out. A specialist's office shrugged everything off that was going on with my dad as depression - exercise, take some anti-depressants and all should be well soon. Then when that wasn't working, maybe it was his blood pressure medication. In the end, an MRI was the only thing that really got us a solid answer once a specialist saw it. From there, some more testing was done to see how advanced he was with it.
In hindsight, I'm not sure what's worst ... not knowing and being so confused before or getting an answer and having it been this.
Link of the day: The Enigma of Early-Onset Dementi