Personality change is the hallmark of frontotemporal dementia (FTD), but a small percentage of people with FTD experience an additional problem. They lose the ability to understand the meaning conveyed by words that describe emotion.
People who love someone with this variant of FTD, which is called semantic dementia have to live with increased heartache knowing that their loved one is now unable to understand emotionally expressive phrases such as “I’m sad” or “I love you.”
According to the University of California San Francisco’s website which examines the many known types of dementia:
"Semantic dementia, which has also been called ‘temporal variant FTD,’ accounts for 20% of FTD cases. Language difficulty, the predominant complaint of people with SD, is due to the disease damaging the left temporal lobe, an area critical for assigning meaning to words. The language deficit is not in producing speech but is a loss of the meaning, or semantics, of words."
When interviewed by ScienceAlert.com, Dr. Sharpley Hsieh from Neuroscience Research Australia describes the difference between merely forgetting the name of an object and forgetting the meaning of emotion conveying words. He says, "Losing the concept of a toaster, for example, will impact upon a person’s quality of life, but the prevalence of words used to communicate feelings and emotion in our language must make the lack of understanding of these words devastating for patients and their carers."
Is one type of dementia more painful for family than another?
According to Stanford School of Medicine, it’s believed that FTD accounts for approximately 10 percent of all cases of dementia. Researchers believe that semantic dementia is present in only a small percentage of these cases. Yet for the person with semantic dementia and their caregivers, percentages mean little.
Most of us come to the conclusion that all types dementia are difficult and often devastating. The degree of pain felt by the person with the disease or the caregiver often depends on the moment at hand. However, I agree with Dr. Hsieh that not being able to understand or convey emotion must be particularly devastating.
There is still much to learn about the brain and how it functions. Whether research is targeted toward Alzheimer’s disease, frontotemporal dementia, depression, Parkinson’s disease, or any other brain related disease, we can hope that much of the information discovered will translate across boundaries and become helpful in finding a way to prevent or cure many brain diseases. Until that happens, we must press for continued funding for research on all types of dementia - even those that are rare. No person’s pain should be excluded.
Neuroscience Research Australia (2012, July 27) Emotion words lost in dementia. Retrieved from https://www.sciencealert.com.au/news/20122607-23612.html
University of California San Francisco Memory and Aging Care Center. Forms of Frontotemporal Dementia. Retrieved fromhttps://memory.ucsf.edu/ftd/overview/ftd/forms/multiple/sd_
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.