alzheimer’s disease

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Heroism At Home: An Intimate Look At Growing Ranks Of Caregivers

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If you’re an adult living in the U.S., it’s a good bet that you (or your neighbor or close friend or colleague) are caring for an elderly family member. Indeed, more than 43 million Americans — about 18 percent of adults — care for a family member or friend 50 or older, according to the Family Caregiver Alliance; 15 million of these caregivers tend someone who has Alzheimer’s disease or some form of dementia.

Currently, family (read: unpaid) caregivers are the largest source of long-term care in the U.S. and health scholars expect that by 2050 the demand for such care will nearly double — and that family caregivers will have to continue meeting the greatest part of that need.

But the statistics don’t reveal the intimacy of such caregiving relationships: the terror of a mind slipping away, the humiliation and messiness of chronic illness, the often violent and shocking ways that bodies unravel. In her new book “The Caregivers: A Support Group’s Stories of Slow Loss, Courage And Love,” journalist Nell Lake details her two years observing a caregivers support group that includes a 50-year-old botanist who moved in with her aging mother to care for her, and a survivor of Nazi Germany who devotedly tends to his ailing wife, and others in the group (some of whom are dealing with serious health problems of their own). While documenting their lives, Lake offers views into the complexities of caregiving: the profound stress, the upheaval of family roles, the slow, often excruciating grief, as well as the graceful humanity of it all.

Here, lightly edited, is my Q & A with Lake, who lives with her family in Northampton, Mass.

RZ: You begin your book on a personal note, with a memory of your grandmother. Can you tell us a bit about her and how her story moved you to write about the larger issue of caregiving in America?

Journalist and author Nell Lake (photo: Sarah Prall)

Journalist and author Nell Lake (Courtesy Sarah Prall)

NL: My grandmother was a poised woman who lived her life with great energy. She had raised three children, kept a beautiful home, was active physically and also politically—involved in environmental causes and in the nuclear freeze movement in her community. She prized her independence and physical vitality, and, as she aged, she expressed a fear of ending up frail and in a nursing home. She kept materials from the Hemlock Society in a kitchen drawer.

In the summer of 1984, when I was 18, she found out from a doctor that she might have cancer. That night, she went to her garage, sat in her car, and turned it on. A neighbor found her the next day.

While my grandmother’s suicide didn’t directly spur me to pursue a story about long-term care and family caregiving, once I was sitting in on the caregivers support group, it was clear to me that I was immersing myself in the stage of life, an experience, that my grandmother had feared and successfully avoided. It became especially moving, then, for me to follow others who were making their way through the “shadow part of life,” as I put it in the book.

My memories of her shaped my lens: I wondered, Can we find ways to embrace this part of life, to meet it with less fear? Can we also try to make it better for everyone?

How did you connect with the hospital caregiver support group?

In late 2009, I went to a dinner party, a birthday celebration for a friend. I ended up seated next to a man whom I call Ben in the book. He told me that he was the lead behavioral health counselor at our local hospital, and that he also facilitated a weekly support group there for family caregivers. I told him I was a journalist interested in healthcare and mental health issues. He suggested I might want to sit in on the group, and later he asked the group members’ permissions. Before long I was listening to their stories.

Is there any particular quality you discovered about these caregivers that you didn’t expect?

It may sound surprising, but spending two years with the support group gave me a new and better sense for what constitutes heroism. I saw heroism in Penny, who had taken her forgetful mother, Mary, into her home. Caring for Mary was not easy, but Penny met Mary’s needs as best she could, sought to provide her mother with as much comfort, care, and happiness as seemed possible. I saw heroism, too, in Daniel, a caregiver who was himself quite frail, and whose wife was bipolar and in pain. Daniel also bravely did his best to meet his wife’s needs.

Their heroism, to me, was a willingness to keep returning to difficult circumstances, to persevere and act compassionately, to try to ease others’ suffering.

This idea of heroism is similar to the notion that bravery is not the quality of being free from fear; rather, bravery is a willingness to act in spite of fear.

Some (many?) caregivers are reluctant to take on so much responsibility, but feel they have no choice. Is this true for most informal caregivers these days and how does our modern notion of caregiving differ from past generations?

In the most important sense, there was less choice a century ago. The word “caregiver” didn’t exist; the words “daughter” or “wife” or “sister” sufficed to describe a caregiving role. Continue reading

Why To Exercise Today: Preserve Your Brain, Avoid Dementia

Shreyans Bhansali/flickr

Shreyans Bhansali/flickr

It’s raw and miserable out, with snow on the way: a perfect day for a long, sit-down lunch, or just hunkering down to work at home with a laptop, a warm cocoa and a soft couch. Right? No, no and absolutely no.

A new study that followed men in South Wales for 35 years puts numbers on what now should be obvious to us all: exercise is one of the most powerful tools you possess to help prevent dementia and cognitive decline in older age. So get up now and go sweat.

To me, the most eye-popping finding here is that by following a fairly simple health regimen, the chances of a “disease-free” life as you age increase dramatically:

Researchers report that people who consistently stuck to four or five “healthy behaviors” (regular exercise, no-smoking, a low bodyweight, a healthy diet and low alcohol intake) “experienced a 60 percent decline in dementia and cognitive decline – with exercise being the strongest mitigating factor – as well as 70 percent fewer instances of diabetes, heart disease and stroke, compared with people who followed none.”

More from the news release:

“The size of reduction in the instance of disease owing to these simple healthy steps has really amazed us and is of enormous importance in an aging population,” said Principle Investigator Professor Peter Elwood from Cardiff University’s School of Medicine. “What the research shows is that following a healthy lifestyle confers surprisingly large benefits to health – healthy behaviours have a far more beneficial effect than any medical treatment or preventative procedure.

“Taking up and following a healthy lifestyle is however the responsibility of the individual him or herself. Sadly, the evidence from this study shows that very few people follow a fully healthy lifestyle. Furthermore, our findings reveal that while the number of people who smoke has gone down since the study started, the number of people leading a fully healthy lifestyle has not changed,” he added.

Recent surveys indicate that less than one per cent of people in Wales follow a completely healthy lifestyle, based on the five recommended behaviours, and that five per cent of the population follow none of the healthy behaviours; roughly equating to a city with a population the size of Swansea (240,000).

Professor Elwood continued: “If the men had been urged to adopt just one additional healthy behaviour at the start of the study 35 years ago, and if only half of them complied, then during the ensuing 35 years there would have been a 13 per cent reduction in dementia, a 12 per cent drop in diabetes, six per cent less vascular disease and a five per cent reduction in deaths.” Continue reading

What Happens Early In The Brains Of People Who Get Alzheimer’s Late?

Alexis McKenzie, right, executive director of The Methodist Home of the District of Columbia Forest Side, an Alzheimer’s assisted-living facility, puts her hand on the arm of resident Catherine Peake, in Washington, Feb. 6, 2012. (Charles Dharapak/AP)

Alexis McKenzie, right, executive director of The Methodist Home of the District of Columbia Forest Side, an Alzheimer’s assisted-living facility, puts her hand on the arm of resident Catherine Peake, in Washington, Feb. 6, 2012. (Charles Dharapak/AP)

As we reported on Here & Now, this week brought news of a promising advance on Alzheimer’s disease: A study in the journal Nature that helps illuminate what goes wrong early on in the brains of people who get late-onset Alzheimer’s, the most common form. The researchers aimed to connect the dots between the gene APOE4, the strongest known genetic risk factor, and development of the actual disease.

Please read the Here & Now report for more detail, but for the bigger picture, here are some clear insights from Dr. Robert C. Green, a medical geneticist at Brigham and Women’s Hospital and Harvard Medical School. (To sum up in an adjective: Here & Now host Robin Young asked me if this was “great” news on Alzheimer’s; I only felt comfortable going as far as “promising.” Dr. Green takes it all the way to “exciting.”) His points:

It’s the kind of breakthrough we need to help us be smarter about the drugs that we take to multi-million-dollar clinical trials.

“What I think is the really exciting part of it is that, for nearly 20 years, we’ve known that APOE was a robust risk factor for Alzheimer’s disease, but we really didn’t  know why. And this paper is actually the first paper that begins to offer an answer as to why APOE4 is a risk factor at a molecular level. 

The way they did it is quite remarkable: They did it with gene expression profiles, a hot new area, and they found that certain genes were turned up or down by the APOE4,  and they were genes that appeared to regulate the production of the bad amyloid protein associated with Alzheimer’s disease. So the APOE4 didn’t directly influence the production of the amyloids; it seemed to regulate up or down these signaling genes, sort of like a cascade effect, to regulate some of the amyloid up and down. Continue reading

Study: Your Brain Makes Hundreds Of New Neurons A Day

(Digital Shotgun/flickr)

(Digital Shotgun/flickr)


This just in from the journal Cell: Your hippocampus, a key region for memory in your brain, makes a few hundred new neurons every day.

Does this mean you can now drink Tequila shots with impunity because you can more than make up for the brain cells you damage? Nope, no reason to think so. But the findings in Cell could have implications for future research in areas from antidepressants to Alzheimer’s disease.

Mainly, the new study helps cement the long-controversial claim that new neurons keep a-borning in the human brain all through life. And it does so in a creative new way, using carbon-14 left in humans by above-ground nuclear tests in the mid-20th century to measure the ages of brain cells.

I asked Prof. Joshua Sanes, director of Harvard University’s Center for Brain Science, to explain what the study could mean — why it matters whether our hippocampi keep making new neurons or not. His reply, lightly edited:

The basic dogma of neurobiology has been that you’re born with all the neurons you’re ever going to get, and then everything goes downhill from there.

But there was heated debate about this, and eventually, it was found in experimental animals that you do actually get new neurons throughout life — but weirdly, only in a few places. Where would depend on the species, but for mammals like us, it’s your olfactory bulb — what the heck that is about, nobody has any idea — and the other place is the hippocampus.

The hippocampus has proven to be critical to memory, and I’m not sure whether you’d say memories are stored there, but they certainly seem to be made there. You probably know about the famous patient HM: When he lost his hippocampus, he lost his ability to make memories.

So the idea arose that maybe if you’re making new neurons in the hippocampus, that’s to help you make new memories. In mice, there’s some evidence that favors that idea. I think nobody thinks it’s going to be as simple as that — that every time you need a new memory, you make a new neuron — but there are lots of experiments where they prevent the making of new neurons and somehow degrade memory in mice. And it seems that a lot of the things that a mouse does can affect how many new neurons are made, or at least how many of the new neurons that are made wire up.

One of those things is exercise: if you exercise more, you make, or keep, more new neurons. If you suffer a lot of stress, you make fewer neurons. Depression has been implicated; nobody knows how but there’s some idea that antidepressants can help you make new neurons, and if you’re depressed, you make fewer neurons.

So people have been interested in these new neurons, but nobody knew whether they were made in the human hippocampus, and this new study tells you that they are. Continue reading

Report: Alzheimer’s Cases Could Triple By 2050

In the not-too-distant future, Alzheimer’s will likely get very personal for many more of us as the nation confronts an “epidemic” of the progressive brain disease, according to a new report based on 2010 census data. Cases of Alzheimer’s could nearly triple over the next 40 years, researchers say.

Here’s USA Today on the study, just published online in the journal Neurology:

Numbers are projected to rise from about 5 million now to 13.8 million. The disease robs people of their memory, erases personality and makes even routine tasks like dressing and bathing impossible.

Ann Gordon/flickr

Ann Gordon/flickr

“We’re going to need coordinated efforts for this upcoming epidemic,” says lead author Jennifer Weuve, assistant professor of medicine at Rush Institute for Healthy Aging in Chicago. “People have trouble getting their heads around these numbers, but imagine if everyone in the state of Illinois (population 12.8 million) had Alzheimer’s. I look around Chicago and can’t imagine it…”

Researchers analyzed information from 10,802 black and white Chicago residents, ages 65 and older, from 1993 to 2011. Continue reading

Another Blow To Alzheimer’s Drug Development


Yet another drug that was hoped to fight Alzheimer’s has failed a crucial clinical trial – at least for patients with the genetic form of the brain disease.

For decades, doctors have been trying different approaches in their attack against Alzheimer’s, but so far, each one has failed. It’s not clear if that failure is due to the way science works – in which early tests are done on mice, whose brains are obviously less complex than people’s – or because patients aren’t treated until late in the disease, when extensive damage has already been done, or because of a lack of understanding of Alzheimer’s.

The latest approach, a drug called bapineuzumab made by Pfizer, Johnson & Johnson, and Irish pharmaceutical company Elan, was intended to go after beta amyloid, a protein that is toxic to brain cells and believed to be a primary driver of Alzheimer’s.

Dr. Reisa Sperling, director of the Center for Alzheimer Research and Treatment at Brigham and Women’s Hospital, told The New York Times that the drug failed to improve either day-to-day activities or brain power more than a placebo. Continue reading

Why To Exercise Today: Fight Your Genetic Risk Of Alzheimer’s (Maybe)

I know, we’ve already linked to this study on exercise and Alzheimer’s, but I just wanted to come back to it because the findings struck me as so dramatic. As Bloomberg reports:

Carriers of the Alzheimer’s gene APOE-4 who regularly exercised over a decade were five to 10 times less likely to have brain plaques linked to the disease than those with the gene who weren’t physically active.

It was only one study, and only followed a couple of hundred people, and a half dozen other caveats apply, but still, five to 10 times less likely to have brain plaques? If borne out, that is not minor.

When I see “APOE-4,” the well-established Alzheimer’s-risk gene that nearly a fifth of us carry, I think “Dr. Robert Green,” the Brigham & Women’s Hospital geneticist who has surely done more research than anyone on how people react when they find out they carry it. I wondered whether this study would affect what APOE-4 carriers are told when they find out they are at higher risk for Alzheimer’s — would they all be sent right to the gym?

In a word, no, but here’s Dr. Green’s bottom line: “As we get older, there are an awful lot of things that influence brain health. The way I think of it is that if you’ve got a disease that’s slowly brewing in your brain and you keep yourself as healthy as possible, and you keep the vascular load on top of that disease — the stuff gumming up the arteries in your brain — if you can keep that to a minimum, then with whatever genetic load you have, and whatever underlying developing disease you have, you do better.” Continue reading

Literary Rx For Alzheimer’s Caregivers: The Prizewinning Candor Of ‘Keeper’


WBUR’s “Fade To Darkness” series on Alzheimer’s this week offers a highly helpful resource page here, including a list of books and even a link to an Alzheimer’s bookstore. But I’d like to add one personal recommendation for a book newly out in paperback: “Keeper,” by the British writer Andrea Gillies. It is literary alchemy: it takes the nightmare of a woman who makes the awful error of committing to take care of her mother-in-law with Alzheimer’s in a remote house in northern Scotland, and turns it into something beautiful. Beautifully expressed, that is.  I suspect some among the legions of Alzheimer’s caregivers may not want to read any more about all-too-familiar daily challenges, but others may glory in seeing familiar thoughts and feelings so gratifyingly put into words. And they could use “Keeper” as a teaching tool to help others understand the strains of life in the Alzheimer’s trenches.

Here are several brief excerpts from “Keeper,” which won the 25,000-pound Wellcome Trust Book Prize in 2009. And at the end, I’ve added the 19th-century poem that Andrea Gillies uses to open the book. “Nancy” is the mother-in-law, “Chris” the husband.

If I had to pick one catch-all descriptor for Nancy’s life in the last few years it would be misery. Profound misery, unceasing and insoluble. She knows that something is wrong, very wrong, but what is it? She’s had a series of terrible daily encounters with herself and her environment that might have come directly from an amnesiac thriller: waking to find she has aged fifty years overnight, that her parents have disappeared, that she doesn’t know the woman in the mirror, nor the people who claim to be her husband and children, and has never seen the rooms and furnishings that everyone around her claims insistently are her home. Time has slipped, gone seriously askew. Every day for her is spent in an ongoing quest to put things right. The trouble is, she can’t seem to concentrate on the question or on possible clues to it. She can’t navigate the problem. When she left us for the nursing home, she was daily engaged in a very protracted, slow-motion form of panic. It’s been over eight years now since the formal diagnosis and eleven years at least since symptoms began, but even after all this time, she’s only at stage 6 of the disease. Stage 7 looms, the cruelest and last phase, with its loss of continence, motor control, speech and ability to swallow. Eventually her lungs will forget how to breathe, her heart forget how to beat, and her quest will come to an end.

(This scatological scene stuck in my mind for a long time — for both its actual and symbolic content:) Continue reading

When You Think It’s Alzheimer’s But It’s Not




For listeners who are now paranoid about Alzheimer’s Disease after this week’s WBUR series, one heartening response came from a colleague’s father, Dr. Jack N. Alpert, a Houston neurologist with 43 years of experience. He pointed out that though Alzheimer’s disease is indeed common, so is misdiagnosis. Of the many patients he has treated who were initially thought to have Alzheimer’s, he said, perhaps 5 to 10 percent of them turned out to have something else — often something far more treatable, like depression.

When Alzheimer’s is suspected, he noted, patients need a full work-up for other possible causes of their symptoms, checking everything from their sodium levels to their thyroid function, as well as an MRI scan of the brain. Other tests may also cast light on the patient’s condition, including a look at the spinal fluid, but in his experience, neuropsychological testing remains the gold standard for the diagnosis at this point.

“So instead of saying ‘shoe,’ he might say ‘flubscum.’”

So if a patient seems to have Alzheimer’s, with all the confusion and memory loss we’ve heard about so vividly this week, what else might it be?

Dr. Alpert listed the other possibilities in order of how common they are in his experience, with the most common first:

Depression

There is something called “pseudo-dementia of depression.” Patients are brought to me sometimes when their thinking has slowed, their movement has slowed down, and if you ask them, ‘Are you depressed?’ they might say ‘No,’ but their behavior suggests depression, and we call that ‘psychomotor retardation’: Slow thinking, slow responses.

Dr. Jack N. Alpert

You can often distinguish that from dementia because there’s a sleep disorder, insomnia, and lack of motivation, preference to stay in the house, loss of appetite, a facial expression which is sad. Those are things that raise the question of depression. So depression causes a type of dementia which is reversible with medical treatment.

Alcoholism

People who are heavy drinkers can show the same symptoms as Alzheimer’s, the same short-term memory loss. This is called “Korsakoff’s psychosis,” and it looks the same. Continue reading

Don’t-Miss Radio: WBUR Alzheimer’s Series Begins Monday


I know, I know: It’s depressing. But the coming wave of Alzheimer’s Disease looms so large that it is too important to ignore. Beginning tomorrow and every day next week, WBUR will be running a series of special reports on Alzheimer’s Disease, every day at 6:35 and 8:35 a.m. It will live on the Web here, and include stories from the public as well as reported pieces. The overview:

It is predicted to be the defining disease of the baby boom generation – Alzheimer’s – the incurable brain disorder that destroys memory, as well as the ability to speak and function. As the country’s 78 million baby boomers turn 65, the age when the disease significantly increases, cases of Alzheimer’s are expected to skyrocket.

According to the Alzheimer’s Association, ten million — or one in eight baby boomers — will develop Alzheimer’s. By the age of 85, nearly one in two will get the disease.

There is still no way to prevent or cure Alzheimer’s and experts warn that unless progress is made soon, the coming explosion of cases may be the greatest health crisis facing the nation, causing widespread suffering as well as huge strains on the country’s health care system.

And here are each day’s offerings:

10/17: Part 1, Ralph and Ruth

Dr. Ralph Kelly, a prominent cardiology researcher and former VP at Genzyme, was diagnosed with early- onset Alzheimer’s at age 59. With the diagnosis, Ralph’s active life as an executive, world traveler and father of four came to a halt. In part 1 of the series, we will get inside the Kelly family life to learn how they live with this life-altering disease. We talk to Ralph, who shares his first-hand experience of living with Alzheimer’s, as well as his wife Ruth, who must manage her husband’s care, her career and their three young children. Continue reading