What If It’s Not Alzheimer’s

My husband, age 50, was the architect of the Memphis City schools, president of the soccer association, our homeowner’s association, our college alumni association, and a commander in the Naval Reserve. Within a year he had lost his job and was no longer involved with any community organizations. I felt in my gut that something was wrong, but he was articulate, energetic, and looked the same as always.

An example of his changed behavior was the last meeting with the homeowner’s association. In a previous meeting, our neighbor had offered to bring her site plan to the next meeting to help us all talk about a boundary issue with folks outside our association. So when the subject came up at this meeting, my husband asked her if she had brought the plan. She apologized and said that she had forgotten to bring it. Now one might expect that he would have replied: “Can you run home and get it?” or “Can you bring it next time?” or “That’s ok, we will do without it.”. Instead, he said, “If you don’t bring it next time, I will have a warrant issued!!!”. The meeting broke up with the neighbor crying and general dismay and confusion. I had to tell my husband later why people were upset. This was a change in behavior for him – lack of judgment and social skills. The first changes were subtle, but a pattern began to emerge. Only someone who lives with or works with a person with this disease on a daily basis will recognize it as such in the beginning. After 5 years he was finally diagnosed with frontotemporal degeneration.

Frontotemporal degeneration (FTD) is an early onset dementia. Whereas Alzheimer’s affects people usually 65 and older, FTD affects people in their 40s to 60s, when they are at the peak of their careers and often still caring for families. Whereas Alzheimer’s affects memory, this disease initially impacts judgment, behavior, and executive function ( if it begins in the frontal lobe) or language ( if it begins in the temporal lobes) or movement (if it begins in the posterior frontal lobe and brain stem). Gradually the disease spreads to other parts of the brain, so that memory is affected as well. Alzheimer’s and FTD can be misdiagnosed as each other. The pathology is different but the symptoms over time are similar. FTD is a rare disease and currently is estimated to affect 60,000 people in the United States, although it may be underdiagnosed.

Changes in behavior, judgment, and executive function are very hard to recognize as illness in the early years of the disease. Some common symptoms are behavioral disinhibition (touching strangers, over-talkative), attraction to sweets or alcohol, rigidity, compulsive, ritualistic behavior, hoarding, roaming, apathy, loss of empathy, lack of interest in hygiene, and/or a flat facial expression.

The person may be articulate and seem perfectly fine. Usually, only the immediate family sees something wrong. The person will usually lose his/her job, then perhaps there will be a divorce and gradually friendships and associations will fade away. This is because the person affected becomes more rigid in opinions, and less nuanced in social skills (too talkative or withdrawn or with less recognition of the personal space of others). Lack of judgment may be bad financial decisions (making unnecessary purchases, giving away money he/she does not have, gambling, risking too much, etc.). Loss of executive function might entail the inability to perform tasks, complete reports, etc. Because the person is only middle-aged, a trip to the doctor or to a counselor will often receive a diagnosis of mid-life crisis, depression, or bipolar disorder. Most medical professionals are still unaware of this brain disease. The average length of time to get an accurate diagnosis is currently 3.6 years.

If the temporal lobe is affected, there will be speech and language problems, which will actually provide an earlier diagnosis. Temporal lobe issues can be the inability to make a speech, grammatical errors, or the ability to recognize or remember words. Movement disorders likewise will be easier for medical professionals to diagnose.

Caring for someone with this disease presents unique problems. The person affected is young and healthy and, if aggressive or anxious, will be difficult to deal with. Medication may be required for his/her safety and that of the caregivers. Facilities are reluctant to accept a person with FTD, as the institutions are geared toward caring for the elderly. Care in the home is difficult because the remaining spouse will be employed and there are often children in the home. If the person is single, the care may fall onto older parents, who will find caregiving for a middle-aged person challenging.

There is no cure for FTD at this time, although there is ongoing research. To help caregivers as well as to promote research, the Association of Frontotemporal Degeneration (AFTD) was established in 2002. The website is www.theaftd.org. On the website, you will find information about the disease. You can also find access to our 100+ support groups around the country (6 of them in Texas), including virtual support groups, special groups for persons affected, groups for families with children, and others for young adults caring for parents. In addition, there are Respite grants to help caregivers take respite and Quality of Life grants for those with the disease. There is a helpline 866-507-7222 or info@theaftd.org. AFTD has annual caregiver conferences and tapes of the conferences for those who cannot attend. There is also a Partners in Care Program for professionals and facilities who would like some basic training and access to other professionals in this field for questions. And finally, as the volunteer Ambassador for Texas, I am available to answer any questions at seissler@theaftd.org.

Editor note:  This article is written by Susan who cares for her husband.  Susan reached out to me last month to discuss Dementia Friendly activities in the state of Texas and asked if we would be interested in sharing information about FTD.  Susan spoke passionately about the importance of understanding FTD, especially for caregivers and those living with FTD and how important it is for them to be connected to support systems.  If you have any questions please feel free to reach out to Susan directly as she is happy to help you in any way she can.

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