A media release from University of California, Berkeley titled, “More clues to midlife dementia that erases personality,” was to me, very enlightening. I’d read a bit about Pick’s disease and had some idea of the part of the brain affected. But I wasn’t educated in the term frontotemporal lobar degeneration (FTLD), nor was I clear on the differences between Pick’s disease, Alzheimer’s and other dementia.
This excellent release explained a lot to me, and has made me wonder if I’ve known people with Pick’s disease and wasn’t aware of what was going on. This must be a dreadful experience for a family to endure, especially when it is still undiagnosed.
FTLD (Pick’s disease) is referred to by these researchers as “a mystifying, hidden dementia that robs its victims of empathy and social skills, and leads to an early death.”
The researchers say that FTLD is easy to overlook “because it goes after the parts of the brain that control emotions while sparing functions such as memory, calculation and navigation.”
Therefore, families and the people themselves have no reason to suspect dementia. The person’s memory is in tact. The reasoning skills are fine. It’s just that there is this mystifying personality change. The person seems cold and emotionless. The person with the disease doesn’t notice anything wrong.
If families have no clue that the person they love has a form of dementia, then there is nothing to explain this cold, unfeeling behavior. Family members become hurt and angry at the way they are being treated by this individual who was once a loving family member.
One thinks of Alzheimer’s and the difficulties faced by families. However, generally there is a diagnosis before the person becomes so disabled socially that they have ruined friendships and family relations. Once friends and family know that dementia is the cause of the new behavior, they are more able to cope.
The researchers say that those with Pick’s disease lose their ability to recognize emotions in others, as well as in themselves, so they don’t understand what their behavior is doing to their friends and family.
According to the release, FTLD generally appears in a person’s 50s. There again, while there is certainly plenty of early on-set dementia around, those types of dementia usually are marked with memory problems. Since a person with FTLD is relatively young when he or she gets the disease, and there are no memory problems, the behavior that goes with the disease is even more baffling.
According to the researchers, death usually occurs within five years, as proteins “accumulate in the neurons of the central nervous system. They particularly build up in the frontal and temporal lobes and literally smother the brain cells to death.”
One note in the report that particularly struck a chord with me was where the researchers mention that with other dementias (they mention Alzheimer’s, but I saw it with my dad, as well), there would be glimpses from time to time of the person we know and love, during this long journey toward death. With Pick’s disease, that isn’t so. The personality is quickly and cruelly changed, “erasing the person once known.”
It must also be painful for families to know that so little research has been done on this disease. Because it is considerably more rare than Alzheimer’s disease, it doesn’t have the research dollars behind it that Alzheimer’s does. For the people and the families affected by Pick’s disease, this must add even more pain to their ordeal. Feeling alone and not understood increases pain. I hope these families, too, can find some comfort in sharing the burden with supportive groups of people who know the unique pain of this dementia.
Carol Bradley Bursack is a veteran family caregiver who spent more than two decades caring for a total of seven elders. She is a newspaper columnist and the author of Minding Our Elders: Caregivers Share Their Personal Stories. Bradley Bursack is also a contributor to several books on caregiving and dementia, and is passionate about preserving the dignity of elders. Her website is www.mindingourelders.com. Follow Carol on Twitter @mindingourelder and on Facebook at Minding Our Elders.