Posts Tagged Frontotemporal dementia

Our Story to Diagnosis on the Alzheimer’s and Other Dementia Roller Coaster

Hello, readers! I am excited to share a post with you that was written by a guest contributor. This caregiver’s journey toward getting a diagnosis for her husband was quite the roller coaster and took many twists and turns. Please read on to learn more about her and her spouse’s experience, and her advice for other caregivers. 


It all began in August of 2016, when after answering the same question for the fifth time in as many days to my husband of 26 years I decided to keep track of things I thought might not be normal. In mid-October I sat my husband down and told him I was going to go to with him to his annual check-up in November. He asked “Why?”.  I simply stated that I had noticed some things that concerned me about his cognitive state. He looked puzzled but agreed.

On November 22, 2016, with a little over two pages of notes and the Alzheimer’s Association’s Preparing for Your Doctor’s Visit sheet in hand, we were ready for our visit.  Dr. H. came in after reviewing the documents, sat down across from us, and said he would like to do some testing. Dr. H. administered a mental status exam, and unfortunately, the test results indicated that my husband was cognitively impaired. With a series of blood tests and a CT scan scheduled to take place before our next appointment in December, we left the doctor’s office with our heads swimming!  I asked my husband, through tears, if he was mad at me. I told him it was ok to be mad at me.  This is not what I wanted, but I couldn’t stand by with my head in the sand and pretend that nothing was wrong!

During this time, I was watching my husband go to work and come home with nothing left to give because he was trying so hard to keep it together at work. I decided that we needed some advice so I called the Alzheimer’s Association Helpline on a snow day off from school. They helped to talk me through the situation and even talked to my husband

As roller coasters do, ours was about to take a plunge down a steep hill!  At our neurology appointment in April, we were wretched about the tracks as Dr. R. told us he feels certain that Jack does NOT have Alzheimer’s but another form of dementia, possibly Frontotemporal Dementia (FTD). Dr. R. explained that my husband’s behavioral changes and his age were indicative of FTD.

One of the hardest things about dementia and especially the one we may be facing is:

  • That family and friends don’t understand he looks healthy and can hide it well for short periods of time.
  • They don’t see this man sobbing because he’s afraid he’s going to forget you and he does not want to be alone going through this.
  • They don’t see the fear in his eyes when he can’t figure out how to turn the shower off.
  • They don’t see the agitation that he can’t explain.
  • They don’t see how much you just want your old life back.
  • They don’t see that you will go to the ends of the earth for this man to keep him safe and at home with you.
  • They don’t understand how isolating it is for us both.

I know that one day this roller coaster ride will be over but for now it’s the ride we’re on. And it’s definitely not one to be on alone!  So friends, if you are on a similar roller coaster ride, pick up that phone and call for help!  You are not alone! Call the Alzheimer’s Association 24/7 Helpline at 1.800.272.3900 for support.

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Frontotemporal Dementia: What is it and how to cope?

Although Alzheimer’s disease may be credited as the most notorious memory loss disorder, it is certainly not the only dementing disease. There are many other types of dementia — upwards of 50 different types. Depending on the type of dementia, the disease may have different symptoms, trajectories, or treatment options. Frontotemporal dementia is one non-AD type of dementia.

What is it?

Frontotemporal dementia (FTD) accounts for approximately 15% of cases of dementia. It is characterized by degeneration in the frontal (executive functions) and temporal lobes (memory, language, emotions) of the brain.  In Alzheimer’s the person may have stark cognitive deficits early on in the disease (e.g. short term memory problems, word finding difficulties), but the person with FTD may have more obvious behavioral symptoms  in the early stages (such as spending copious amounts of money, eating without restraint, apathy, disinhibition, etc.). FTD also typically affects individuals at a younger age than those who are diagnosed with Alzheimer’s. Most people are diagnosed in their 50s or 60s.


FTD can be grouped into three different types

  • Behavioral variant frontotemporal dementia (bvFTD) takes its greatest toll on personality and behavior. It may begin with subtle changes that may be mistaken for depression. As bvFTD progresses people often develop disinhibition, a striking loss of restraint in personal relations and social life.
  • Primary progressive aphasia (PPA) affects language skills in early stages, but often also affects behavior as it advances. The two chief forms of PPA have somewhat different symptoms:
    • In semantic dementia, people speak easily, but their words convey less and less meaning. They tend to use broad general terms, such as “animal” when they mean “cat.” Language comprehension also declines.
    • In progressive nonfluent aphasia, people lose their ability to generate words easily, and their speech becomes halting, “tongue-tied” and ungrammatical. Ability to read and write also may be impaired.
  • FTD movement disorders affect certain involuntary, automatic muscle functions. These disorders also may impair language and behavior. The two primary FTD movement disorders are:
    • Corticobasal degeneration (CBD), which causes shakiness, lack of coordination, and muscle rigidity and spasms.
    • Progressive supranuclear palsy (PSP), which causes walking and balance problems, frequent falls and muscle stiffness, especially in the neck and upper body. It also affects eye movements.

How to cope?

As with other types of dementia, managing the behavioral changes that occur with the disease is a daunting task for any caregiver, potentially leading to burnout and distress.  Furthermore, research indicates that FTD caregivers may experience a greater financial, emotional, and psychological burden than their AD caregiver counterparts. Because of the extreme toll that caregiving can pose, the caregiver must take good care of themselves! Support groups and/or therapy may be very helpful outlets. Taking time out and enjoying free time as a caregiver is not frivolous but an essential component in preserving the caregiver’s mental and physical well-being.

Managing behaviors is a common issue when the diagnosis is FTD. Validating the person’s feelings and reality, taking time out for one’s self, implementing a regular routine, and consulting with a physician are all viable methods for tackling this issue.

Research continues to emerge which indicates that physical activity may help to stimulate learning and memory and effectively manage some of the symptoms associated with dementia (Ahlskog et al., 2011). Engaging the person in activities, particularly physical exercise, may be another helpful intervention for managing behaviors.


Ahlskog, J. E., Geda, Yonas E,M.D., M.S.C., Graff-Radford, N., & Petersen, Ronald C,P.H.D., M.D. (2011). Physical exercise as a preventive or disease-modifying treatment of dementia and brain aging. Mayo Clinic Proceedings, 86(9), 876-84. Retrieved from

Rabinovici, G. L. (2010). Frontotemporal Lobar Degeneration. CNS Drugs24(5), 375-398.

Seltman, R. R. (2012). Frontotemporal Lobar Degeneration: Epidemiology, Pathology, Diagnosis and Management. CNS Drugs26(10), 841-870.

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