Although Alzheimer’s disease is likely the most common and well-known dementia, the reality is that there are many other types of dementia. One lesser known but increasingly recognized dementia is frontotemporal. FTD generally presents itself as a baffling change in a loved one’s personality. A recent New York Times story titled The Vanishing Mind: When Illness Makes a Spouse a Stranger illustrates the stunning effect that FTD can have on a long-term marriage.
According to the “Times” story, FTD, also known as Pick’s disease is “…perhaps even more devastating [than Alzheimer’s], because it strikes younger people, progresses faster and, unlike Alzheimer’s, does not attack memory at first but begins with silence, apathy or bizarre personality changes.”
Its these personality changes that can at first anger and then baffle spouses who believed that they knew their husband or wife very well. Personality changes often happen with Alzheimer’s disease, but memory loss generally presents a first clue that some changes in brain function are the underlying problem. With FTD, the person exhibits personality changes before other symptoms of a cognitive disorder are apparent.
Any dramatic physical, mental or emotional change should be looked into by a qualified physician, since medications, infections or other mental conditions can cause dementia-like symptoms. Many of these conditions can be cured, or at least improved, with medication or lifestyle changes. Unfortunately, FTD cannot be reliably treated nor, at this time, can it be cured.
The National Institutes of Health defines FTD, also known as Pick’s disease as:
“… a rare and permanent form of dementia that is similar to Alzheimer’s disease, except that it tends to affect only certain areas of the brain…Symptoms such as behavior changes, speech difficulty, and impaired thinking occur slowly, but continue to get worse…tend to behave the wrong way in different social settings. The changes in behavior continue to get worse and are often one of the most disturbing symptoms of the disease”
Spouses of people with FTD need education and support
The “Times” article points to hopeful research. University of California professor of neurology and psychiatry Bruce L. Miller is quoted as saying, “I think at least some subtypes of frontotemporal dementia will be the first neurodegenerative diseases we find a cure for.”
Meanwhile, the spouses of people with frontotemporal dementia are left to cope with a person who has become a stranger to them, seemingly living in the body of their husband or wife. To help people cope with the effects of FTD, I urge spouses to contact their local Alzheimer’s organization, or go to www.alzfdn.org, for information and support. FTD is not Alzheimer’s disease, but it is a form of dementia. Since FTD is comparatively rare, there is less specific support available for spouses than there is for Alzheimer’s disease. However, people coping with the effects of Alzheimer’s disease can generally offer advice and comfort to those affected by any type of dementia.
The Well Spouse Association is another good source of support. On the WSA website, a spouse will be able to connect with others who share their experience. Isolation - feeling that no one really understands what we are going through - can cause havoc with our own mental and physical health. Seeking support and connecting with others with similar issues helps with that emotional pain.
People often take on unearned guilt when they realize that the arguments they’ve been having with their spouse were caused by lack of knowledge that their spouse has a disease. If general support online or at in-person support groups doesn’t help a spouse cope, some sessions with a trained counselor may.
Some researchers believe that there are many more subtypes of dementia than previously thought or currently understood. We await new information. Meanwhile, we need to consider what resources are available at this time to give support to the person with the disease and his or her spouse.
Bursack, CB (2012, March 5) Is it Alzheimer’s, a different type of dementia or something else entirely? HealthCentral. Retrieved fromhttps://www.healthcentral.com/alzheimers/c/62/150895/alzheimer-type
Grady, D (2012, May 5) The Vanishing Mind: When Illness Makes a Spouse a Stranger. The New York Times. Retrieved fromhttps://www.nytimes.com/2012/05/06/health/a-rare-form-of-dementia-tests-a-vow-of-for-better-for-worse.html?_r=1&nl=todaysheadlines&emc=edit_th_20120506
National Institutes of Health. Semantic dementia; Dementia - semantic; Frontotemporal dementia; Arnold Pick’s disease (Last reviewed: February 16, 2012) Retrieved from https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001752/
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.