April 3, 1941 to Sept. 4, 2011, a life well lived
September 4, 2011
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Amber Smith, awareness, death, dementia, early-onset Alzheiemer's, grief, personal, Uncategorized | 
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Pre-mourning for the father dementia stole
February 4, 2011
I’ve been away from the blog for a while, and it finally dawned on me why: I’m in mourning. Or, at least anticipatory mourning. For the past several weeks, everything reminds me of my Dad.
I slice cantaloupe, and I remember how he favored melons. I remember the stories he told of an illicit watermelon patch growing up, one that he tossed seeds into, never tended, but that grew prize-worthy melons every summer growing up in Texas. Dad loved his watermelon, but also cantaloupes and honeydews.
I glance at the sky in the morning, in spectacular pink, and I remember the “red sky in morning, sailors take warning” ditty Dad planted in our brains as children. I know the day holds a storm. And of course that gets me thinking about watching thunderstorms from the porch, and counting seconds between lightning strikes and thunder booms with my Dad.
I pour wiper fluid into my car, and I remember it was Dad who taught me what I know about cars. He made me change a tire, so I’d know how to in an emergency. He taught me driving; we practiced donuts in shopping mall parking lots. That memory leads to stories he shared of his youth – sanitized, no doubt – about racing around in Corvettes with his sister’s husband.
When I’m particularly melancholy, I look at my children and see my Dad. I hear the words he spoke when each was born. I see him caring for them, joking with them, and those visions become of him caring for me, joking with me.
All of this is pleasant enough. My memories are all good, except… Each of my recollections ends with a jolt: the sweet memory, then the bitter reality. Dad is not gone yet. Frontotemporal dementia stole him but has not yet released him to heaven.
So I’m mourning, but not for his death. I’m mourning for his loss of life.
Sometimes I imagine what I will feel when my father’s soul leaves this earth. I wonder if I will get a phone call, or if I will just know. I wonder if, once he’s gone, my memories will lose their bitter aftertaste. I wonder, without the anticipation, will mourning be able to bring comfort?
1 Comment | Amber Smith, death, frontotemporal, grief, personal, Uncategorized | Permalink
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Researchers explain link between type 2 diabetes and Alzheimer’s
October 14, 2010
Elderly people with Type 2 diabetes are twice as likely to develop Alzheimer’s disease–and now researchers think they know why.
A gene associated with diabetes is also found at lower-than-normal levels in people who have Alzheimer’s, according to research published in this month’s Aging Cell journal. Researchers from Mount Sinai School of Medicine used mice that were genetically engineered to have Alzheimer’s disease, and they discovered lower levels of the gene known as proliferator-activated receptor coactivator 1, PGC-1, which is a key regulator of glucose.
The research team led by Dr. Giulio Maria Pasinetti reported that the decrease might be causally linked to promotion of Alzheimer’s, because PGC-1 promoted the degradation of a specific enzyme known as beta-secretase. This enzyme is directly involved in the processing and eventually generation of beta-amyloid, an abnormal protein linked to Alzheimer’s and brain degeneration.
“This new research is of extreme interest, especially since approximately 60 percent of Alzheimer’s disease cases have at least one serious medical condition primarily associated with Type 2 diabetes,” Pasinetti says.
The next step is to determine if PGC-1 can be manipulated with drugs, to prevent the beta-amyloid accumulation in the brain.
The news release from Mount Sinai School of Medicine.
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Changing the way we look at dementia deficits, to change our stress level
September 23, 2010Our “default” when it comes to caring for a loved one with dementia often is to focus on his or her deficits. Dad can’t drive anymore. He cannot read books. He no longer can prepare meals as he used to. Dementias are a progressive deterioration, so we watch new deficits emerge. It’s depressing, and stressful.
Some kitchen tasks may be appropriate.
Clinical psychologist Cynthia Green writes on The New York Times’ New Old Age blog about the importance of engaging with our loved ones. The trick is to tailor activities to their abilities.
If Dad can’t focus on the written word, maybe he can listen to a book on tape. Preparing a whole meal is out, but he may delight in some kitchen tasks–such as mixing batter.
Green says ask yourself, first, what your loved one enjoys. “New activities aren’t impossible, but something totally outside his previous interest may be more challenging to get off the ground. You’re unlikely to make a baker out of a man who spent every spare hour on the golf course — but he may get a real kick out of watching golfing videos or teaching his grandson to putt,” she writes. ”Then, find ways to modify hobbies so that they’re accessible. Some activities may now be too complex, but with imagination you can find similar nonverbal, multisensory avenues that still bring satisfaction. If your mom took great pride in her beautiful flower garden, perhaps she can plant small pots of flowers, look with you through garden books (big coffee-table volumes are ideal), or help you mix potpourri to use in sachets.
The post by Green is garnering many comments, including mine. It is also prompting at least one doctor to be reflective. Dr. Ken Covinsky writes on www.kevinmd.com about reading through all the comments.
“Several family members noted that when they stopped mourning what their loved ones could no longer do, and instead learned to find joy in activities they could do together, their stress decreased and they found new meaning in their relationships,” he writes. “I wonder if I would do more good for my patients by just referring them to these snippets of advice than by writing another donepazil or memantine prescription.
“The post is making me think about a number of issues in terms of the how we learn to care for patients with dementia, and the dominant research paradigms in the field. We are rather dominated by a model in which the focus is on reversing and/or preventing declines in cognitive function. The problem is that current options, when directed towards that goal, are quite poor. Would management of dementia be improved if the “cure” paradigm were replaced with a quality of life paradigm?
“And why is there such limited research into practical approaches such as these towards improving quality of life and well being in persons with dementia? Why don’t we ever see any research examining this type of issue in medically oriented geriatrics and gerontology journals?”
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Those senior moments may not just be ‘old age’
September 16, 2010
I don’t know whether this is good news, or bad, but here’s what I know:
Dementia researchers from Chicago’s Rush University Medical Center are saying that “old age” may have nothing to do with why older people become forgetful.
“Our results challenge the concept of normal memory aging and hint at the possibility that these lesions play a role in virtually all late-life memory loss,” study author Robert S. Wilson says in a news release from the journal, Neurology, which published Wilson’s study online Sept. 15. “It appears these brain lesions have a much greater impact on memory function in old age than we previously thought.”
For the study, 350 Catholic nuns, priests and brothers were given memory tests annually for up to 13 years. Tests included word list recall, naming, verbal, number and reading assessments. After death, the participant’s brains were studied for lesions.
The study found that memory decline tended to be gradual until speeding up in the last four to five years of life. Tangles, Lewy bodies, and stroke were all related to gradual memory decline. Almost no gradual decline was seen in the absence of tangles. Both Lewy bodies and stroke approximately doubled the rate of gradual memory decline. Tangles and Lewy bodies were also related to rapid memory decline but explained only about one third of the effect.
“Understanding how and when these brain lesions affect memory as we age will likely be critical to efforts to develop treatments that delay memory loss in old age,” says Wilson.
The National Institute on Aging helped pay for the study.
It seems to support what’s known as mild cognitive impairment, MCI, sort of a precursor to dementia. People with MCI have memory problems that are not as severe as people with Alzheimer’s, and more of them go on to develop Alzheimer’s than those who do not have MCI. Here’s the rub: no test can detect MCI. It’s more a diagnosis of exclusion.
“Mild cognitive impairment (MCI) is a disorder of the brain in which nerve cells involved in one aspect of cognitive processing (thinking abilities) are impaired,” according to the Mayo Clinic, whose neurologists first identified the characteristics of MCI. “Individuals with MCI are able to function reasonably well in everyday activities, such as managing finances and purchasing items at stores without assistance, but have difficulty remembering details of conversations, events and upcoming appointments. Most (but not all) patients with MCI develop a progressive decline in their thinking abilities over time, and Alzheimer’s disease is usually the underlying cause.”
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Spinal fluid test for Alzheimer’s raises interesting question
August 10, 2010
Today’s news of a new and accurate way of diagnosing Alzheimer’s disease through a spinal fluid test is both promising — and troubling.
Researchers writing for the Archives of Neurology told of a nearly 100-percent accurate test of cerebrospinal fluid for biomarkers that signal Alzheimer’s disease. The disease was confirmed in some of the study subjects through an examination of the brain after they died. What surprised the scientists was the presence of the Alzheimer’s disease signature in more than one-third of the cognitively normal subjects–suggesting that the disease “pathology is active and detectable earlier than has heretofore been envisioned,” the abstract says.
Dr. Steven DeKosky, dean of the University of Virginia medical school, told The New York Times “this is what everyone is looking for, the bull’s-eye of perfect predictive accuracy.”
Most experts believe that Alzheimer’s starts before symptoms become obvious, so having a way to identify victims early might lead to ways of slowing or preventing deterioration. Lots of drug studies are in various stages of experimentation and development for that purpose.
Here’s what’s a little troubling: Should doctors offer, and should patients accept, a test for a disease that has no treatment?
An accompanying editorial tackles this issue.
My thinking has always been that more information is better than less. However, as patients, we have to ask ourselves, what will we do with the information?
Say we are having memory troubles and fear Alzheimer’s. Would having such a test done (once it’s ready for prime time, that is) alleviate our fears? If the results said no, would it encourage our doctor to explore other causes? If the results said yes, would knowing that make things worse for us–especially now, when there’s really not much that can help someone in the early stages of Alzheimer’s?
Maybe there will come a day when such a spinal fluid test would become something of a screening, like a mammogram to spot breast cancer or a colonoscopy to spot colorectal cancers. But we’re not there yet.
My other concern would be that a long term care insurance policy be firmly in place before the test. Because once someone is diagnosed with a dementia, good luck purchasing coverage. The costs of caring for someone with dementia are enormous. Without that coverage, I honestly don’t know how we would have cared for my father.
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Preventing dementia the same way we prevent infectious disease via hand-washing
August 8, 2010
French researchers say increasing fruit and vegetable consumption and eliminating depression and diabetes are likely to have the biggest impact on reducing the incidence of dementia. In their study published in the British Journal of Medicine, they say this is important, since dementia rates are expected to increase by 100 percent in developed countries between 2001 and 2020.
Public health strategies — such as hand-washing to prevent puerperal fever or controlling water sources to prevent cholera — have been shown effective. So, senior research director Karen Ritchie says it’s timely to launch a general population approach to prevention of dementia, targeting specific risk factors. To determine those risk factors, Ritchie’s team studied 1,433 people over age 65 with mild cognitive impairment in Montpellier, France.
“The aim of the study was to determine, on the basis of current epidemiological knowledge, which interventions at a population level might be most efficient in reducing the burden of dementia in the coming years if no effective treatment is found,” the abstract says. Researchers focused on modifiable risk factors for which strong empirical evidence already exists.
They found that “reduction in the incidence of dementia over the next seven years would be maximised by the elimination of diabetes and possibly also depression,” assuming that depression is found to be a risk factor for dementia and not an early symptom of the disease. They also say that exposure to intellectual activity, and an increased consumption of fruits and vegetables “also seem to have a potentially high impact at a population level,” though they admit these steps are difficult to implement as health prevention targets since we don’t know how much exposure and how much consumption provides protective effects.
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Technology helps adult children monitor aging parents from afar
August 3, 2010“In the general scheme of life, parents are the ones who keep tabs on the children. But now, a raft of new technology is making it possible for adult children to monitor to a stunningly precise degree the daily movements and habits of their aging parents,” Hilary Stout writes in the New York Times.
Her story goes on to explain how many companies, large and small, have sprung up to offer ways for the elderly to stay in their homes and avoid moving into a nursing home, by allowing their adult children to keep tabs on them.
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REM sleep disorder may signal dementia, Parkinson’s disease
July 28, 2010
My Dad for years had these crazy sleep patterns, where he’d startle just as he hit REM, the Rapid Eye Movement stage of sleep.
Of course I thought about that as I read of a new study in the journal, Neurology showing that an REM sleep disorder may signal dementia or Parkinson’s disease up to 50 years before the disorders are diagnosed. For the study, researchers used Mayo Clinic records for 27 patients who experienced REM sleep behavior disorder for at least 15 years before developing one of three conditions: Parkinson’s disease, dementia with Lewy bodies or multiple system atrophy, a disorder that causes symptoms similar to Parkinson’s disease.
The study found that the time between the start of the sleep disorder and the symptoms of the neurologic disorders ranged up to 50 years, with an average span of 25 years. Of the participants, 13 were diagnosed with dementia, 13 others were diagnosed with Parkinson’s disease and one person was diagnosed with multiple system atrophy.
“Our findings suggest that in some patients, conditions such as Parkinson’s disease or dementia with Lewy bodies have a very long span of activity within the brain and they also may have a long period of time where other symptoms aren’t apparent,” said study author Dr. Bradley F. Boeve. His work did not give an indication how many people with REM disorder may go on to develop Parkinson’s or dementia.
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More studies showing exercise can help stave off dementia, Alzheimer’s
July 14, 2010
Encouraging research being shared at the International Conference on Alzheimer’s Disease in Honolulu this week shows that exercise may be a powerful antidote to cognitive decline in Alzheimer’s and other dementias.
Physical activity has long been related to cognitive decline, through several long-term epidemiological studies, but up until now, published research has not been consistent, and several large studies failed to show an association. Most of the studies followed participants for fewer than six years and/or lacked substantial follow-up. In fact, a panel convened by the National Institutes of Health recently reported that no proof exists for ways of preventing dementia.
Researchers have yearned for a long-term study of people within the age brackets at higher risk for developing Alzheimer’s, in order to show a true relationship between exercise and cognitive decline. The Framingham Study, a population-based study that has followed participants residing in the town of Framingham, Massachusetts since 1948 for cardiovascular risk factors, is one such study, and it is now also tracking cognitive performance.
In work presented in Honolulu, Dr. Zaldy Tan of Boston’s Brigham and Women’s Hospital and Harvard Medical School, and colleagues, estimated the levels of 24-hour physical activity of more than 1,200 elderly participants from the Framingham Study. They included 742 females, within five years of age 76 in 1986 and 1987, and followed them for the development of dementia. They divided the participants into five groups based on level of physical activity, from lowest (Q1) to highest (Q5).
Over two decades of follow-up, 242 of the women developed dementia, including 193 with Alzheimer’s. The researchers found that participants who performed moderate to heavy levels of physical activity had about a 40 percent lower risk of developing any type of dementia. Further, people who reported the lowest levels of physical activity were 45 percent more likely to develop any type of dementia compared to those who reported higher levels of activity.
“This is the first study to follow a large group of individuals for this long a period of time,” Tan says in a news release. “It suggests that lowering the risk for dementia may be one additional benefit of maintaining at least moderate physical activity, even into the eighth decade of life.”
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