Compassionate, informed advice about healthcare decision making

Archive for the ‘Dementia’ Category

You Can’t “Prevent” Alzheimer’s! But You Can “Reduce the Risk!”

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She was the most unhappy, most angry, and most sad dying person I ever worked with as a hospice chaplain.

She thought she had done everything to prevent cancer. She was a “fitness nut.” She meditated. She did yoga. She read books on spiritual and self-help topics. She ate the healthiest of diets. She got cancer anyway.

Once diagnosed, she turned to alternative medicine to save her life. She had heard so much about those miracle cures and she wanted that, too. She doubled down on her lifestyle she had adopted to prevent the cancer in the first place.

She never got to acceptance. In my view, her biggest mistake was believing she could “prevent” cancer rather than just “reduce the risk.” Even nonsmokers can get lung cancer.

Reducing Risk vs. Preventing

I thought of this patient as I was rereading an article I had found helpful about reducing the risk of dementia. I was surprised how it was titled — “The SHIELD Plan to Prevent Dementia.” (I referenced this “plan” in a previous blog about Alzheimer’s.) As with cancer, you can’t totally prevent getting Alzheimer’s. But you can reduce the risk.

Below is Dr. Oz’s spin on the research of Dr. Rudolph Tanzi (I would drop the word “prevent” and call it  The SHIELD Plan to Reduce the Risk of Alzheimer’s):

Sleep — Aim for at least eight hours of sleep each night.

Handle Stress — Tanzi recommends a short, one-minute meditation practice.

Interact With Others — Loneliness can lead to additional stress. Talking with friends and family members requires the brain to pay attention and builds new neural pathways.

Exercise — Walk at least three times a week for 30-45 minutes.

Learn New Things — “Leaning new skills can build new nerve connections that maintain optimal brain health. Try adopting a new hobby, learning a new language, or playing a new musical instrument.”

Diet — Drs. Oz and Tanzi recommend The Mediterranean diet. “On the diet, you’ll eat more fruits and vegetables, nuts and olive oil and then cut back on red meat consumption.”

There you have it.

New Drug to Help Alzheimer’s Patients? I Think Not!

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What are they thinking? How can the government approve a drug unlikely to improve the lives of any dementia patients?

I am not a doctor, but I have been around dementia patients my whole professional career as a nursing home and hospice chaplain. I also have been a co-caregiver for both my parents who died suffering from memory loss: Dad from Parkinson’s and strokes and Mom from Alzheimer’s.

I read about this new Alzheimer’s drug, Aduhelm, in newspapers and medical journals and was saddened by the recent approval of the drug. It was approved by the FDA even though there is no evidence it helps patients. An outside panel of experts voted against approval. Three of that panel’s members have now quit in protest.

What was the reason for them to recommend AGAINST approval? The patients in the clinical trial showed no improvement. Some did appear to have reduced amounts of amyloid clumps in the brain which are often found in Alzheimer’s patients. But less clumps in the brain have not been proven to lead to improved cognitive functioning.

The drug is extremely expensive for both the patient and Medicare, over $50,000 a year. Its use requires many PET scans, also extremely expensive. All this for a drug that shows no evidence of improving the life of the patient.

If you or someone you love has Alzheimer’s, don’t listen to me. Talk to your own doctor. But I suggest reading the criticisms about Aduhelm before making a decision on it.

Think of making this decision like you would with any other medical treatment. Do the benefits outweigh the burdens? In this case, there appears to be no benefit and quite significant burdens both financially and clinically.

Who can blame demented patients or their families for wanting to try something — anything — that might slow the losing of one’s mind? This drug is not one that offers such a promise.

Might the $50K be used for something that we know already helps patients or caregivers? What about respite care to give the family a break or in-home health aides? How about expanding Medicare coverage for palliative care for dementia patients?

Do these patients and families need hope? Absolutely! But not false hope. While the medical research continues, let us offer compassion and support to these patients and their families. May their burdens be eased by ways in which we already know the path.

“If I had a daughter, I wouldn’t be in this nursing home!”

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The old lady was stuck with three sons. And because of this — in her mind — she was stuck in a nursing home.

Her sons visited. They met with the nursing home staff to make sure their mother’s needs were met. They were as good of family caregivers as I had ever seen in my years as a nursing home chaplain. But, more than once, she said, “If I had a daughter, I wouldn’t be in this nursing home.” The notion seems a bit old-fashioned in today’s world, where gender equality is such an important issue.

Well, it turns out she might have been correct.

A study reported in the current issue of the Journal of the American Geriatrics Society (JAGS) found that a patient was more likely to die at home (as opposed to in a hospital or nursing home) if you had more family members… especially more daughters.

The burdens of a family caregiver

Being a family caregiver at home is a tremendous burden. In the JAGS study, the average number of caregiving hours in the last month of life provided by the family to someone who dies at home is 210. For those who die in a nursing home or hospice inpatient unit, it is 81.

Interestingly, the emotional burden for families is highest when the patient dies in a hospital and lowest when they die at home. Perhaps the transfer to the hospital in itself is a great emotional strain. Guilt about NOT being able to take care of the patient at home must also be a factor. And though providing hands-on care can be a physical burden, it may give the caregiver the self-satisfaction that they are doing their best. The caregiver feels more in control.

What about the daughters? Why does having daughters make it more likely to die at home? Unfortunately, the study did not tease out why, but we can guess.

Right or wrong, the cultural norm in our society is that nurturing and caring for the young and elderly are duties more often performed by women. Yet, I have witnessed so many men who admirably performed caregiving duties to their elderly parents that I know men can be great caregivers. But in these cases, the men usually stepped in because there were no women available.

Who’s going to take care of mother?

Hank’s mother, Charlotte, after her move to Colorado, with her namesake great-granddaughter, Lia Charlotte

I saw this “Who’s-going-take-care-of-mother?” question play out in my own family. Mom had lived for years independently in a retirement facility in Tampa before moving into assisted living. My brother, sister, and I took turns visiting our mother. I like to think we each took about the same amount of time away from our work and families to serve as long-distance caregivers.

As our mother’s dementia progressed, it became clear that we needed to move her to a facility closer to one of us. We each visited memory care units near our homes in Tallahassee, Boulder, and Northern Virginia. Each of us was willing and able to become “the caregiver.” We weighed the quality and cost of the facilities we had found.

After we all had done our due diligence, my sister declared, “I want to do this. I want mom to come to Colorado.”

I called Janice last week to see if my memory of this decision-making process was the same as hers. “Yes,” she said. “I knew you and Dennis were quite capable of caring for our mother, but I was her daughter. There is a special bond between mothers and their daughters.”

And that was that.

Could COVID Be the New “Old Man’s Friend”?

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Here’s the question: Should a nursing home resident with dementia get the COVID-19 vaccine?

There is no question that nursing home residents are at a high risk of dying should they get the coronavirus. That also goes for the underpaid and overworked staff who care for these vulnerable patients. One might think, “Of course, vaccinate them all.”

Not so fast.

I started thinking about this after reading a recent article from the bioethics think tank The Hastings Center, “Too Taboo to Contemplate? Refusing COVID Vaccination for Some People with Dementia.”

Just a month ago I wrote a blog post, “Making End-of-Life Decisions for Dementia Patients.” In it I wrote, “Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully?

Dena Davis, J.D., Ph.D., takes a similar approach in her Hastings Center article. She states the obvious: that if a person had declared in an advance directive that in the case of advanced dementia, they would refuse vaccines for flu or pneumonia, then that would also apply for COVID-19 vaccine. But, what of the patient who does not have a written advance directive or has failed to give such specific verbal directions?

Dr. Davis refers to several surveys where people expressed their preference to die sooner rather than spiral down with dementia. In one survey, more than half of the respondents were either “very unwilling” or “would rather die” than live in a nursing home. In another study of seriously ill but cognitively competent people a majority believed that either incontinence or “being confused all the time” were states equal to or worse than death.

We hardly need a scientific study to convince us that losing our minds and being totally dependent on others is a state almost all of us want to avoid. Now, a novel coronavirus comes along that is especially hard on elderly nursing home patients. It is also hard on the caregivers and vaccinating patients is partly to protect these folks and their families.

I agree with Davis’s personal preference that if she had dementia and was confined to a nursing home, she would give her surrogates instructions to withhold vaccines. Me too.

Once, pneumonia was thought of as “the old man’s friend” – a relatively peaceful way for the elderly to die, a welcome visitor. Dr. Davis speculates, “Could the novel coronavirus be today’s old man’s friend?”

Making End-of-Life Decisions for Dementia Patients

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“We didn’t want to put him through that again,” she told me. I wrote previously about my childhood friend eventually dying with dementia after years of decline. His wife decided not to send him back to the hospital.

Here’s the question families of dementia patients face as they consider end-of-life decisions: Shall we save his life so he can become more demented and slowly decline further or shall we let him die peacefully? I have been thinking about end-of-life decisions for dementia patients because I just was interviewed for a podcast that focuses on helping family caregivers of these patients. Listen to “Rodger That” for my interview and scores of others.

With almost four million copies of my book Hard Choices for Loving People in circulation, I’m pleased to say I’ve received very few negative comments about the book. One person did push back against my characterizing dementia, like Alzheimer’s, as a terminal disease. People don’t die from dementia, they die from other conditions like pneumonia, they said.

Dementia IS a terminal disease

In my view, dementia has all the earmarks of a terminal disease. The patient declines over many years. The general trajectory is downhill although they may recover temporarily from some setbacks. Had they not had dementia they probably would have lived longer. The end is always in death. Sounds pretty terminal to me.

Me and my mother at a memory care facility the year before she died.

As with any end-of-life decision, trying to discern what the patient would have chosen is paramount. Consider this question the physician asked me and my sister after mom fractured her hip in the memory care facility, “How did your mom feel about her dementia?” He didn’t ask whether or not she would want hip surgery. Mom hated, hated, hated losing her mind. It was clear our goal was just to keep her comfortable.

I would venture that everyone fears ending up living their last years where you do not know your family members, are incontinent, and are dependent on others for dressing, eating and toileting. Who wants this?

Then why, oh why would a family decide to save the life of a patient in this condition when they could have opted for comfort care and allow a natural, peaceful death? I think most of us would choose an earlier exit from such a fate.

My mother’s doctor helped clarify this for us with his pointed question. We said, “No. Mom would not want any treatment that would extend her life.”

Letting go and letting be

A word of encouragement to those who may face making decisions for a demented patient: I have found, in general, families are able to get to a place to allow a peaceful death at the right time. The truth is the patient has been dying bit by bit for years. These families have been grieving the loss of all the pieces that make up the person they love — their memory, their health, their expressions of love, and so much more.

When it comes time to say, “Let them go peacefully,” it is just the next step because they have been letting go all along. It is time to just let things be.

How to Get to “It Doesn’t Matter!”

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“Pass through this brief patch of time in harmony with nature, and come to your final resting place gracefully, just as a ripened olive might drop, praising the earth that nourished it and grateful to the tree that gave it growth.” Marcus Aurelius, Meditations, 4.48.2, quoted in The Daily Stoicby Ryan Holiday, p. 26

 

My father, Hampton Dunn, age 33, managing editor, The Tampa Daily Times

In many ways, my father’s death wasn’t particularly remarkable. His physical and mental abilities just went downhill and after four years in a nursing home — he died.

And, in many ways, his life was not so remarkable when compared to others who grew up in the Depression and fought in World War II.

Further, in many ways, his emotional and spiritual journey in his last days, months, and years were not unlike hundreds of others I had accompanied during my time as a chaplain.

I’ve been thinking about these things as I prepare for a virtual talk I will give on February 4th on the emotional and spiritual concerns at the end of life. Last week, I listed the seven concerns I have noticed in my work and research. One of the concerns is “Gaining a sense that what is happening is okay: ‘Letting be.’”

Writing became my father’s life

Dad (right), age 49, public relations director, AAA

My father never finished college. It was 1936 in the depths of the Depression. He got his dream job as a newspaper reporter and never finished his degree. Some fifty years later he did get an honorary doctorate from his former school, the University of Tampa. Writing became his life: first at the Tampa Daily Times; then on TV in Miami; then back to Tampa as the public relations director for AAA; and finally, after retiring from his day job at age 70, he went back into TV work.

Hampton Dunn, age 73, TV personality

It was that final TV stint, doing a two-minute spot each week featuring an on-location story about Tampa history, that gave rise to my dad teaching me a lesson on how to prepare for death.

Dad developed Parkinson’s and had to give up writing, public speaking, and TV. He could no longer type or turn the page in a book to do research. He eventually needed assistance for all activities and a nursing home was the only answer.

A moment of insight… and acceptance

Me with Dad, age 82, nursing home resident

One day we picked up dad at the nursing home to go out for a drive. I was driving. My father was in the passenger seat. My mother and nephew were in the back seat. We got stuck at a traffic light in the dense suburbs of North Tampa. Across the intersection, on the far corner, stood an abandoned forest lookout tower. The forests are long gone, and the tower is now a historic site. From the back seat, Mom said, “Your father did a TV spot at this corner.”

Dad corrected her, “I did several!”

Still stuck at the light, I thought I could pass the time, so I asked, “When was that tower last used as a fire tower?”

Dad started thinking. That date was locked in his brain somewhere but the damage from Parkinson’s and strokes prevented him from finding it. Knowledge of history was so important to my father. He had written eighteen books on Florida history and now he could not remember a date.

Slowly he turned to me and with a big grin on his face he said, “It doesn’t matter!” He had gotten to the point of “gaining a sense that what is happening is okay.” Others have characterized this as “acceptance.”

My dad never looked forward to his decline, but when it came, so much else didn’t matter. It was “okay” in the sense that the vast majority of humanity follows this same path of decline toward the end and now he had accepted it, too.

Friends, Alzheimer’s and My “Profound Hearing Loss”

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Sixteen years ago, I remember sitting in a movie, not understanding even half of the dialogue. Of course, my family had been complaining about my hearing or lack thereof. But it was the movie that pushed me to have my hearing checked out.

I remember sitting in the sound-proof booth with headphones on listening for the faint sounds the audiologist sent my way. I was so thankful I could hear the faintest of the sounds. It came as a shock to me when I came out of the booth and the audiologist said, “Mr. Dunn, you have profound hearing loss.” What was a faint sound to me would have been a loud noise to others. I had deceived myself.

Over the years I have gone through two sets of hearing aids. On my birthday in 2014, I got a cochlear implant at Johns Hopkins in Baltimore. These devices are not perfect, but I was heading toward complete deafness.

Here’s the scary part. I found a recent article in JAMA that said, “Individuals with hearing loss had a 55% greater risk of developing dementia compared with those with normal hearing. Furthermore, the risk of dementia increased linearly with the severity of hearing loss.”

Friends are good for our mental health

 I once spoke at an Alzheimer’s Association conference where I shared the program with a physician/researcher. He ended his lecture wanting to leave on an upbeat note. We can’t prevent Alzheimer’s, but we can reduce the risk. He then listed three things we can do to reduce the risk of dementia. He said:

  • Walk one-half hour every day.
  • Fight depression at all costs.
  • Have two or three close friends.

Last year, I saw a story on the NBC Nightly News with another list, this time from Rudolph Tanzi, a professor of neurology at Harvard University and the director of neurology at Massachusetts General Hospital. He suggests an approach he calls SHIELD, an acronym for lifestyle factors that appear to help reduce the risk of developing Alzheimer’s. They include:

  • Developing good sleep habits
  • Getting a handle on stress
  • Interacting with friends
  • Exercising daily
  • Learning new skills
  • Eating a healthy diet

Those pesky friends show up again. How do friends help prevent me from losing my mind?

The brain continues to change and friends can help

I got a clue about the friends piece in a recent podcast from Brené Brown with David Eagleman on his book Livewired: The Inside Story of the Ever-Changing Brain. Eagleman is a neuroscientist who is curious about the brain — how it is mysterious, malleable, constantly changing, and up for new challenges. He believes that our brains are “malleable” because they can — and do — change in response to new situations.

Dr. Eagleman also endorses “learning new skills” from Dr. Tanzi’s list above. “Does malleability depend on us trying new things?” he asks. “If you are challenging yourself, you are building new roadways.” He suggests learning new skills from learning a foreign language to brushing your teeth with your other hand.

Where do the friends come in? “Other people is the hardest thing that brains deal with,” he continues. “The degree to which one can maintain an active social life is massively important.” Carrying on a conversation requires that I pay attention. I never really know what the other person is going to say. I build those new roadways in my brain in my response.

He goes on to say that “blind people are generally happier than deaf people because they can communicate.” And this interaction can help ward off dementia.

Social distancing and friendships

So, I’ve adapted. Bluetooth sends the TV audio directly to my brain through the cochlear implant. Headphones make phone calls and Zoom meetings very workable. The most difficult situations are social settings — a crowded party with lively chatter all around or a noisy restaurant. These are exactly the places in non-COVID times where I might meet those friends who are so important to my mental health.

I plan ahead. No more Mr. Nice Guy, “You sit down first, and I’ll just take what is left.” I take the seat at a table where I will be more likely to hear others. I’ll tell people, “I can hear better if I am in this seat” and not have a hint of embarrassment.

Social, or physical, distancing is hard on friendships. I tend to be an introvert who has not developed friendship patterns with a lot of talking and visiting. This year has made me more acutely aware of this missing piece. Turns out my future mental health depends on it.

Feeding Tubes: Guantanamo NO; Our Parents OK

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Here is a great piece that was in the New York Times yesterday. It powerfully tells the truth that feeding tubes for advanced dementia patients cause more pain with no benefit.

http://www.nytimes.com/2015/11/24/opinion/force-feeding-cruel-at-guantanamo-but-ok-for-our-parents.html?smprod=nytcore-iphone&smid=nytcore-iphone-share

Photo by Ye Jinghan on Unsplash

Is the Advanced Alzheimer’s Patient No Longer a Person?

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Good question.

As people lose their memories, can no longer say who they are, can no longer recognize those closest to them … what’s left?

Blame it on the René Descartes

Blame it on the French. Well…actually, one Frenchman, René Descartes (1596-1650). He wanted to know, “What can I really know for sure?” His conclusion was, “I am thinking.” He then gave us, “I think, therefore I am.”

Fast forward to our effort to understand what is going on in the minds of dementia patients. These people are losing the ability to think. Eventually, they cannot recall the stories that made them who they became as adults. They cannot recall what they had for breakfast. They cannot tell you who they are.

So if Descartes is right, who are we when we can no longer think? Could we say, “If I don’t think, therefore, I am not”?

“Consider the phrases used [in the vast medical literature] to describe Alzheimer’s impact: ‘a steady erosion of selfhood,’ ‘unbecoming’ a self, ‘drifting towards the threshold of unbeing,’ and even ‘the complete loss of self.’” I got that sentence from a new book by Anil Ananthaswamy, The Man Who Wasn’t There: Investigations into the Strange New Science of the Self.

I just got back from speaking at an Alzheimer’s conference in Washington state. They wanted my standard talk based on my book Hard Choices for Loving People about making end-of-life decisions. I also had 90 minutes to talk about the emotional and spiritual issues at the end of life. Part of my lecture looked at the loss of the self.

But thinking is not all of who we are

Ananthaswamy’s book has a whole chapter dedicated to Alzheimer’s disease and the self. The chapter is 35 pages so I am looking at just one aspect of all this. It is true that much of what we consider “the self” is lost as dementia progresses. But thinking is not all of who we are. There is an embodied self, that literally is located in our physical body.

We learn to ride a bicycle as a child and do not ride again for 30 years. We don’t have to “think” about it. Our body knows how to ride again as an adult. Quick. Which finger do you use to type the letter “C” on the keyboard? Perhaps you could not tell me which it is but could immediately type it “without thinking.” That’s the point. There is a self unrelated to thinking, an embodied self.

The author related a story from one of the physicians conducting research on advanced Alzheimer’s patients and the self. I personally have experienced the same type of example of the embodied self.

The man said the prayer word for word in Hebrew

While I was a nursing home chaplain a local rabbi invited us to bring our Jewish residents to his synagogue. They had recently received a Torah restored from stolen scrolls hidden by the Nazis during World War II. One of our residents was a man with advanced Alzheimer’s. He could still walk and talk but did not know who he was nor who his wife of 60 years was. The man sat on the front row in the worship room with a yarmulke on his head and a prayer shawl over his shoulders as he had done in his younger non brain-damaged days. This man had not said an intelligible sentence in months if not years.

The rabbi brought the covered Torah to the man and asked him to recite the prayer said before the uncovering of the scroll. The man said the prayer, without hesitation, word for word in Hebrew. His wife next to him wept. I was in tears. A moment of clarity. Had we asked the man to repeat the prayer back at the memory care unit he would not have been able to do it. The synagogue, the rabbi, the yarmulke, the Torah, all connected with the self beyond thinking located in his body.

We all have this self. Only our thinking is so dominant that we do not recognize it. When the thinking recedes we are still there — in our bodies.

Photo by Artem Maltsev on Unsplash

Is Alzheimer’s a Terminal Disease?

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I say yes.

I have sold over 3 million copies of my book Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Disease. Only once, in the 25 years since the First Edition came out, I received a complaint from a reader who took issue with my claim that Alzheimer’s Disease is a terminal disease.

They told me, “You don’t die from Alzheimer’s. You die from something else like pneumonia, or a stroke, or cancer.”

Advanced dementia leads to what finally takes the patient

But I say, in most cases, the advanced dementia leads to what finally takes the patient. For example, pneumonia is a very common cause of death for these people. The end stage of Alzheimer’s is marked by increased eating difficulties and increased frequency of fevers. Getting food or fluid in the lungs can lead to pneumonia that can lead to death. 50% of advanced dementia patients who are hospitalized for pneumonia or a fractured hip are dead within six months.

There is even a recognizable “end stage” of this disease. Persons in the last phase of Alzheimer’s qualify for hospice benefits under Medicare. Families and physicians often modify the goals of medicine for advanced dementia patients. It is not unusual for a family to decline the use of antibiotics to treat pneumonia. This is an accepted standard of care.

It is helpful to think of this being considered terminal

In my view it is helpful for people to think in terms of this condition being considered terminal. You think in terms of how to best keep the patient comfortable rather than curing everything that comes along. It encourages everyone to do the emotional and spiritual work to prepare for dying.

Photo by Aron Visuals on Unsplash

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