by Sharon Mayfield, BSN

This article demonstrates different challenges that caregivers and an experienced nurse are faced with when their loved ones/clients have an FTD (frontotemporal disorders). The behaviors associated with this disorder do not respond to the usual techniques such as distraction. The diagnosis almost always causes deterioration in the relationship between the caregiver and the person with the disease because of the indifference and changes to their personalities.

I have been working with people who have Alzheimer’s disease and related dementias for many years as a registered nurse, assisted living administrator, and hospice palliative care admissions nurse, and consider myself fairly familiar with different techniques to make caregiving easier. This past year I have encountered a number of cases that are not dementias affecting the posterior parts of the brain as with Alzheimer’s, but affect the temporal and frontal lobes. People who have frontotemporal disorders (FTD) present different symptoms and the caregiving approaches that have worked in the past with people who have Alzheimer’s disease do not necessarily apply.

Frontotemporal lobe disorders are often described as a slowly progressive deterioration of social skills and changes in personality or impairment of language. These clients often are 65 years of age or younger and might still be employed. The symptoms are often misunderstood as the disease progresses, and misdiagnosis occurs about 50% of the time. One of the hallmarks of this dementia is that the person with FTD lacks empathy or sympathy for the caregiver even when the caregiver is in pain or critically ill. Another key feature, unlike with Alzheimer’s disease, is that there may not be any short- term memory loss. I have learned many lessons while assisting families in their caregiving roles and will share some of my experiences.

Some behavioral changes were present in a gentleman that I took on a shopping trip to the local

Wal-Mart. Our conversation in the car was normal except for occasional word searching. But because I have learned to “speak” dementia, he felt understood without any anxiety. Once inside the store, his social disinhibition began to surface. He met the Greeter like a long lost friend, shaking his hand and giving him a hug. I took a deep breath and thought this was a good omen. The next man we encountered was rather large and tall. Before I could intervene, my companion remarked for all to hear, “He is as big as a barn! Say do you eat hay?” I maneuvered us away from that scene and into the next aisle where two children were bouncing the balls from a display. “Put those balls back,” he shouted. I had to say, ”Now you did not wear your referee shirt so you can’t give orders!”

The next adventure occurred when he needed to use the bathroom. I told him I would wait for him just outside of the restroom. Then I could hear him introducing himself to everyone and I could just picture him shaking their hands. One man came out and saw me with a worried look. He asked if he could help. I asked him to direct the man he had just “met” out to me, as he could not find his way out of the restroom. Later we encountered this same man with his wife. He too, must have had some experience with dementia because he greeted my client by name and shook his hand and introduced him to his wife. What a good encounter! But before we could get out the door he had asked another gentleman for $2.00 and the man had his billfold out before I could add that he was kidding. Luckily this was another person with experience with persons with dementia, as he said he would lend him a couple of bucks anytime. All this occurred in a forty-minute shopping trip. I was grateful to leave the store intact without any shoplifting, which he had done in the past when his wife had taken him shopping. It was still challenging.

Contrast that episode with another client who lives to shop and is fixated on having access to money. It occupies his mind most of the time. Before he had been definitively diagnosed, he had run up quite a gambling and shopping debt online. Even though he had been an accountant, he seemed completely unaware of his spending. His wife has had to return to work to help to pay off the credit card debts. She has also tried to take steps to be sure that this spending is not repeated. She has also had to lock her purse in the trunk and hide the car keys to keep them from him to be sure that she has some money for parking, etc. She was surprised to discover that he had intercepted the delivery of the new checks and had removed several checks from the middle of the check books for his later use.
He has had a companion that takes him out for lunch one day a week, and the presumption had been that he could take him on some errands so that his wife would not have to do these errands after work. He has brought his wife’s silver certificates to purchase a birdhouse. He once went to the bank, and with only his driver’s license and no account number or checks, was assisted by the bank staff to withdraw money.
Sometimes he compulsively eats and drinks. He drank 14 containers of V8 juice in 5 days. He often calls his wife at work 20 times a day to ask her to bring home more ice cream. He does not have short-term memory loss to account for this, but once he is on a task like this he persists until his goal is obtained. He cannot be diverted from his cause. He smokes continuously.

Despite all of this, he can carry on a good conversation at other times and appears perfectly normal when he is groomed to go out.

Another lady that I worked with had difficulty with language. She would search for words and often used words that did not make any sense. She appeared unkempt, as she had become resistant to grooming and bathing. She was about 55 years old when her husband had noticed that things were not right and was diagnosed at age 58. This lady would greet me like an old friend, and initially I could take her to get her hair and nails done if I stayed by her side in the stylist chair and kept up the conversation.

She seemed to be deteriorating quickly. Her husband was her sole caregiver and he tried very hard to keep all the conversations light and silly (she responded to silly). He felt most at ease when she was seat belted in the car listening to music that they loved.

She could no longer figure out the order for doing tasks. She was totally continent but could not figure out the toileting sequence. She would begin to pace around as her bladder filled. When they were out in public, a public restroom with signage aided in giving her enough clues so that she could complete the task. At home she would pace around the apartment, seemingly not hearing requests to help her to the bathroom. Then something would “click” and she would go to the bathroom, navigate the button and zipper on her jeans and successfully sit down on the commode and void. This cycle continued about every 2 -3 hours. If the pacing was interrupted, she would strike out.

Sometimes she would strike out for no apparent reason. It got very difficult for her husband to take her out in public, as sometimes she would not get back in the car, and he would have to pace around with her hoping nobody thought he was trying to kidnap her. She also had some visual deficits that prevented her from seeing depths, and she was unaware of others around her.

Her husband was very concerned that she was not stimulated enough. She had been very artistic and had made beautiful quilts and had lived abroad and enjoyed many different cultures. She was apathetic toward most activities. But researchers say that they are not bored.

When she paced, it was as though she was in a trance. Intrusion by others at such times resulted in aggressive behaviors. One effective tactic for me during these times was to try to blend into the background while monitoring for safety. I even resorted to wearing clothing that blended in with the sofa.

Sadly the lady in the above scenario had symptoms that escalated very quickly. In the course of three months she went from shopping with me at the mall to a secured dementia unit that required that a 24/7 caregiver be with her. She physically aged in appearance and lost weight, as she only ate when she paced. She eventually became incontinent and was very resistant to being changed. Medications were changed, and she underwent a stay in a geriatric behavioral unit. When she takes her medication and it has time to get into her system, she can have a social side and is able to arrange fabric strips to her liking. Her doctor describes her condition as being one of “global brain deterioration” with frontal lobe involvement. There some reports that state the life expectancy of people with frontotemporal lobe disease is half that of those with Alzheimer’s disease.

There has not been much progress in finding medications that are effective in managing FTD symptoms. There has been some success with SSRI (selective serotonin reuptake inhibitors), but some medications used with Alzheimer’s have been thought to make the symptoms worse. I spoke with a researcher at the Duke Conference about the dilemma regarding medication when there is this extreme resistance to care. He replied that the usual drugs like Ativan, Respiradol, and Haldol may make things worse. Bruce Miller, MD stated that we have to use these drugs now to deliver care until there is something better.

I have found the best way to improve the quality of life of the families that I have worked with has been to make sure that the primary caregivers have had some respite and support. They often have shared relief when I, too, was not able to provide care and experienced the same resistance from their loved ones. I encouraged them to seek out support groups for frontotemporal diseases. (However, even though the Western North Carolina Chapter of the Alzheimer’s Association has 58 support groups, there is currently only one that focuses on FTD. Although there are only 50 centers for FTD in the entire country, it is thought that this form of dementia may occur as often as Alzheimer’s disease.)

Another caregiver found some solace in yoga and goes into his “yoga state” when he has to deal with his wife’s difficult periods. All would agree that you will not be successful if you are stressed and exhausted. A local caregiver, Bill Matson, has written about his struggles in the Mooresville Tribune. He states, “I often sign my correspondence by saying ‘from the foxhole’ because that’s how I feel.”

I can only begin to appreciate the battle that is waged every day by these caregivers. There is no cure but my mission is to try to ensure that this disease is not fatal for the caregiver as well.
Sharon Mayfield attended the Ohio Valley General Hospital School of Nursing and received her BSN from West Liberty University, West Liberty, WV. She has owned and operated her own assisted living community as well as worked as Director of Operations for Hunt Assisted Living. She is a former hospice nurse.

Sharon currently owns the Seniors Helping Seniors franchise in Charlotte, NC where she matches seniors who need non-medical care with other seniors who can provide it. She has a special interest in providing care for the “caregiver,” especially those who are dealing with dementia.

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Reprinted with permission from Advocare Care Management is the place to go when caring for an aging loved one.