Monday, May 13, 2019

Dementia: It's More Than Alzheimer's Disease

Say the word "dementia," and most people think about Alzheimer's disease. We can't blame them; Alzheimer's disease affects almost 6 million Americans and many millions more across the world. It is the most common cause of dementia. But dementia is more than Alzheimer's disease.

So, what is dementia? Dementia is a decline in mental ability that affects your daily life. Dementia is not a specific disease on its own. It can be caused by Alzheimer's disease, Lewy body dementia, vascular dementia, or frontotemporal dementia (FTD), among others. It can also be caused by other diseases, like Parkinson's disease and Huntington's disease.

But if the end result is the same and there's no cure, is it really important to know what type, what it's called? Absolutely. We need to know that there are different types of dementia because the research and management differs according to the disease. For example, Alzheimer's disease is caused by plaques and tangles that build up in the brain. It usually strikes later in life, although there is a rare form of early-onset Alzheimer's disease that can strike people in their 40s and 50s. Lewy body dementia is caused by a build up of protein in the brain and it can start in the 50s.  FTD is caused by a degeneration of the neurons (nerve cells) in the frontal and temporal lobes of the brain. It is these parts of the brain that control language, personality, and behaviour. According to the National Institute of Neurologic Disorders and Stroke (part of the National Institutes of Health), there are three main groups of FTD: progressive behaviour/personality decline, progressive language decline, and progressive motor decline. FTD can be defined in other ways though. The Association for Frontotemporal Degeneration defines FTD types as:

What makes FTD particularly brutal is it strikes early, most often from about 45 years on, often when couples still have children at home and may even be caring for their own parents. But it can affect people as young as in their 20s.

It's difficult to tell how many people in North America have FTD. A study published in 2016 found that the diagnostic process was so diverse that it was impossible to tell how many people were truly affected by FTD. The authors looked at 26 studies looking at the incidence or prevalence of FTD, published between 1985 and 2012. They concluded that about 2.7% of all cases of dementia (any age) were caused by FTD. Yet, the National Institute of Neurologic Disorders and Stroke estimates that there may be many more people with FTD than we realize, perhaps as many as 10% of people with dementia.

Aside from the toll FTD takes on the people who have it and the ones who love them, it has a high financial toll. A study published in the journal Neurology in 2017 compared the economic burden of FTD in the U.S. with Alzheimer's disease. The researchers found that the annual cost of caring for someone with FTD was twice that of someone with Alzheimer's disease. Part of the increased cost is the young age of people diagnosed with FTD, compared with Alzheimer's. Younger age at diagnosis means a loss in household income as the patient can no longer work, and the spouse or partner may have to miss work or quit altogether to provide care.

I have a particular interest in FTD. Dear friends have been living with this disease in their family for the past few years. It's a cruel disease that so few people know about. I was glad to see earlier this month, the CBS news show 60 Minutes ran a segment on FTD, called Frontotemporal dementia: Devastating, prevalent, and little understood. If you have 15 minutes, I encourage you to watch it. There is much more to FTD than the segment can show, but it's a good primer for people who have never heard of it.

This blog post touched very briefly on FTD. There is so much more to the disease. To learn more about FTD, visit The Association for Frontotemporal Degeneration and/or the National Institute of Neurologic Disorders and Stroke's section Frontotemporal Disorders: Hope Through Research.  If you suspect that someone you love may have FTD, seek help. If you have resources you would like to share, please leave the information in the comments. While there is no cure, having a diagnosis and support are important.

Monday, May 6, 2019

Do Celebrities Owe Us Health Information? Prince Harry & Meghan Markle, for example

It's all over the news - a new royal has been born. Prince Harry's glowing announcement of his son's birth was delightful. He was awed and in love. But how much does he owe the public about the details and photos, and everything else people want to know?

There was a lot of discussion when people realized that Meghan Markle's delivery wasn't going to be done the same way as her sister-in-law's. Catherine/Kate Middleton, Duchess of Cambridge, was pushed into the spotlight hours after the birth of her three children. Many felt her appearance was unfair to both her and women around the world who know it's not common to look so spectacular after having a baby. Yet, many others felt it was their right to know about Baby Cambridge when he or she did arrive.

We also see this when celebrities become ill or are injured in some way. Some famous people choose to speak out early, often to beat gossip. The most recent example is Alex Trebek, who spoke out about his pancreatic cancer diagnosis and, most recently, about depression and other issues that surround living with such a serious disease. And when they die, the public also wants to know why. Luke Perry and John Singleton both died after having a stroke. This seemed all the more tragic because of their young age. But other times, celebrities die and the cause is never announced. Their fans are curious, but the family may prefer to keep quiet.

Do those in the public eye owe it to anyone to share their health news? Some argue that if people choose to live publicly, all bets are off. And to be fair, when a celebrity does share a diagnosis, public awareness skyrockets. Parkinson's disease saw a big increase in awareness after it became known that Muhammed Ali and Michael J. Fox had/have it. When awareness grows, so does screening, diagnosis, and treatment. Donations for research may increase and this all works for the better. But if someone is living with a serious illness, publicity is an added stress - one that can make life much more difficult.

I have to admit, I was delighted for Prince Harry. I have a soft spot for him. I still picture him walking behind his mother's coffin. As rich and privileged as he is, losing your mom at that age is devastating. So to see him happy pleases me. But do I have to know? No, I don't. And if he chooses to keep certain details secret, then I feel that is his choice. Life will go on, whether we know about Baby Sussex or not.

Wednesday, March 14, 2018

I Remember Martin

This was an essay I wrote many years ago, about a patient who stayed with me throughout my career.  

I remember Martin. I was 20 years old, barely a nurse. He was 53 and about to die.

While I was studying nursing in the late 1970s and early 80s, there wasn’t much emphasis placed on dying. We were focused on saving patients, teaching them how live with chronic diseases, or helping them heal from various medical procedures. Patients did die of course, but that was when we failed to keep them alive. Palliative and hospice care had been introduced, but were not yet mainstream. We were taught that nurses helped save people, and this is what I believed. Until the day I met Martin.
Martin was admitted to our medical unit to die – to 514, a private room across from the nurses’ station. He had been living with cancer for a few years now and had come to the point that his chemotherapy was no longer providing him with a good quality of life. He had stopped all treatment, including kidney dialysis. On his admission papers, we were told that he would likely die within three days – four days at the most.
I was next in line for admissions that day, so Martin became my patient. I watched as he came out from the elevator. He walked slowly, deliberately towards the unit. I noticed that he wasn’t much taller than I was. He had piercing blue eyes in a round, creased face, and fading blond hair. He was so polite, so nice, so alive. I was told to complete the admission like all others – take a nursing history, ask the questions, fill out the forms. In other words, I was to act as if he was like every other patient on our floor. But he wasn’t. At least he wasn’t to me.
Other than a few patients who had died while I was on duty, and grandparents who I barely knew and who had died in country on another continent, I had little experience with death. But I knew that Martin wasn’t just another patient.
For the first few hours, I didn’t know what to say to him. I went in and out of his room more than I normally would have. I was looking for a way to connect with him. But I didn’t know how. What to say? What to do? I had no guidance, no map.
His daughters came. They were my age, another thing to think about. Martin wasn’t just a patient. He wasn’t just a dying patient. He was a father of two young women who would soon be losing their father. His wife came. She quietly cried in the hall for a few minutes before composing herself. She would be a widow in a few days.
I had been warned that Martin would start to lose mental function as toxins built up in his blood – he would become confused, disoriented. I wanted to connect with him before this happened. But I had no idea how. What I didn’t know was that Martin did.
During one of my visits in his room, he said, “Can I talk to you? Do you have a moment?” I had more than a few. I had cleared away all my other work so I could have time for him. He asked me to sit. I did.
I don’t recall all that Martin talked about, but I do remember him saying how he was afraid that he might start not making sense. How he might say one thing but mean another. He told me that certain things just didn’t matter any more. He explained it by comparing shapes and colors – triangles and circles, red and green. He said, does it really matter that the shapes or colors aren’t the same? Does it really matter that we aren’t all the same?
For the rest of that afternoon, I took care of Martin’s physical needs as he talked about his life, what he had done, and his love for his wife and his daughters. He talked about his regrets and the things he wouldn’t get to do. And he talked about dying. How he was afraid, but he knew it was time.
I went off shift at 4 pm. I didn’t want to go to work the next day. I didn’t want to witness Martin’s decline. I didn’t want to see him die. But I did, because that is what nurses do.
The next morning, I listened to our change-of-shift report and the nurse described Martin’s night. It hadn’t been an easy one. The team leader had thoughtfully given me a lighter patient load so I could spend time caring for Martin. As I entered his room that morning, it was obvious that the man I knew the day before was already gone. He barely opened his eyes, barely responded to my questions.
I tended to him, talking to him every step of the way. I talked about some of the things he had mentioned just the day before. And sometimes there was just silence.
The rest of the day, there was always a family member in Martin’s room and I didn’t want to intrude. I popped in to do what needed to be done, and then left the family to themselves. I left at 4 pm again, after saying my good-byes to the family. I wasn’t scheduled to work the next day. I would likely never see them again. I had no idea what to say.
I thought a lot about Martin that night and all the next day. When I returned to work for my next shift, there was a new patient in 514 – someone with hopes of recovering and going home. Martin was gone.
Twenty-five years later, I began working in hospice The time, the place, and the situations were all very different from that first experience with an expected death. I knew what to do. But I never forgot Martin. When I think about him from time to time, I don’t see him as he lay dying, but as the 53-year-old man who walked onto our floor. And those piercing blue eyes.

Friday, February 9, 2018

Over 90,000 Page Views for a Post I Wrote in 2008

Wow. Just wow.

I was poking around in my blog stats this evening. I began writing this blog almost 11 years ago now, so there are lots of posts. Some years, I'm great about posting often. Other years, well, to be honest I don't think about posting here. For a several years, if you Googled "nurse writer," I was one of the top three hits and often the first one. Now I'm not even on the front page. Ouch.  I get busy with paying work and feel guilty about not posting here. But it is gratifying to know that even whien I'm not posting, people are reading. Some of my posts have been read thousands of times.

I try to write about topics that I think you will find interesting. Sometimes I get it, other times I don't. But I sure struck a chord when I wrote, How Can You Die From Pneumonia? Bernie Mac Did. 
The post has been viewed as, of this evening (11 pm EST, Friday night), 90,415 times. This is a particularly interesting post for many cases, but maybe even more now given the flu season we're having. The runner up post, Broken Hips in Elderly Can Lead to Death, has been read almost 45,000 times.

So stay tuned for more stories. Who knows what I may find.