Alzheimer’s disease is the most prevalent but it is only one of several neurodegenerative diseases that lead to dementia. The heterogeneity among types of dementia and people impacted is part of what makes dementia care such a challenge for the US Healthcare system. For those facing one of the “related dementias” like frontotemporal degeneration (FTD) the challenge is compounded by the fact that most people and many medical professionals will have never heard of FTD before or realize that there are other types of dementia that do not affect memory and can impact people decades before they turn 65.
In order to ensure quality, compassionate care for all people impacted by dementia, any new tool or technology must address the full range of symptoms and impairments experienced. This includes personality changes and disinhibited or irrational behaviors, loss of executive function and poor judgment, communication problems and loss of language, and loss of motor and muscle control. New tools or technologies must also address the care coordination and/or care navigation for people who are under age 65 and still working when diagnosed, and who may have children or teens at home. Their financial situations and eligibility for benefits and services is vastly more complicated than navigating aging services and systems related to Medicare.
In order for The Eureka Prize to really help advance dementia care for all those affected by any of the many forms of dementia, it needs to be about more than memory loss in an aging population, because dementia is far more complicated than that.
It may not be possible to fully address the wide range of complex needs with a single prize; therefore, we urge NIA to consider separate prizes for Alzheimer’s disease and for the “related dementias”, especially those with a typically younger onset.
Susan L-J Dickinson, MS, CGC
CEO, The Association for Frontotemporal Degeneration