What’s Good For the Heart is Good For the Brain

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I generally avoid posting news about the latest food, vitamin, supplement, or lifestyle factor that may or may not affect your risk of dementia, for better or worse. Most of the time, it’s a one-off study that is unlikely to pan out as something that will significantly benefit most people, or else it’s just plain common sense (like the recent study that said smoking is bad for your brain health – we needed to do a study to prove that??).

Exercise, in my mind, fits the latter category, but it’s so important that I am happy to share the latest study from today’s Annals of Internal Medicine (pay-wall to access). This was a cohort study from the Cooper Center in Dallas, Texas, looking at over 19,000 people whose fitness levels have been monitored since the early 1970s.

Medicare claims in recent years have been analyzed and the incidence of claims using dementia as a diagnosis was correlated with the fitness data for the group. The bottom line: more fit meant a significantly lower incidence of dementia, even in people who had a history of a previous stroke.

Of course there are drawbacks to this kind of study. The population was mostly Caucasian and had a higher educational level than the national average. Also, the study measured overall cardiovascular fitness levels, but not what was specifically being done by each person to get fit. And the use of “dementia” on the claim forms could have been an incomplete representation.

But the study is worth reporting because when thinking about lowering our risk of cognitive loss, we need to start by reminding people to get back to the basics: Dementia is closely associated with aging of the body and of the brain. The brain is nourished by the cardiovascular system. Ergo, what’s good for the heart is good for the brain.

What’s more, the cardiovascular system is without a doubt the most important variable in good health of all kinds. I believe time will show us that what we are calling “Alzheimer’s” is more closely linked to the health of our circulatory system than we realize.

So get fit now, and worry about the blueberries, sudoku puzzles, and vitamin supplements later. This is where the money is!

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Don’t Hold Person-Directed Care to a Higher Standard

Recently, I have been thinking a lot about the “lack of empirical evidence” label that hounds culture change enthusiasts. Here are two examples:

 
1) I just read an article from The Gerontologist, (2008), in which Rahman and Schnelle reviewed the history of the long-term care culture change movement in the U.S. over the previous decade. They noted an increased interest, momentum and visibility in the prior three years, but pointed out (correctly) the lack of well-published empirical data to date.

 
2) After writing the New England Journal of Medicine to criticize the recent antipsychotic withdrawal study (see my January 15, 2013 post), the authors responded by saying that person-directed approaches were certainly promising, but had yet to be well tested in empirical trials.

 
I was trained in science and am a big believer in empirical methods, wherever they can be applied. I would also love to see more published evidence of the efficacy of transformational models of care. These are often difficult to study, due to the slow, multifaceted nature of transformation, but at the very least, we need more well-planned studies that compare a variety of outcomes between culture change adopters and traditional models.

 
All of that is well and good. Here’s my problem: Innovation is too often held to a standard that traditional approaches never had to meet.

 
Let’s go back to the two examples above:

 
1) There have never been empirical studies to evaluate whether our current system of long-term care produces quality outcomes. Maybe that’s because it’s the only system we’ve known for half a century. But consider these: staff turnover rates, antipsychotic and physical restraint usage, reports of abuse, failures to meet regulatory standards, and the public perception of life in a nursing home. We actually have a wealth of data proving that our current long-term care system is an abject failure. And yet we hold up change efforts, because we need better evidence.

 
2) Next, let’s talk about person-directed approaches to dementia. Once again, they are hard to study empirically for a variety of reasons, not the least of which is the hold of Big Pharma on funding of research in this area. But once again, let’s look at what we do now: off-label use of antipsychotics—the best studies showing no more than 18% improvement, with 60-70% higher mortality, and yet over a million Americans with dementia take these drugs and it is still accepted as good practice; drugs like Ritalin and Nuedexta have been liberally sprinkled into the dementia cocktail with little empirical study to back them up; FDA approval of a larger (read: newly patented and expensive) form of Aricept, even though the studies showed no added benefit and increased side effects.

 
So my problem is that new ideas shouldn’t have to jump over so many hurdles to funding and implementation if the old ideas have such a terrible track record. Let’s apply the same scientific standards to both, rather than throwing up smokescreens to preserve a failed status quo.

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Pacing the Brain

The news outlets were abuzz this week with a new line of research going on in Toronto and several US centers. This research uses deep brain stimulation (DBS) to help improve the cognitive function of people living with Alzheimer’s.

Here’s how it works: electrodes are implanted in certain affected areas of the brain, which are accessed through holes made in the skull. The electrical impulses are hoped to reawaken nerve endings that are malfunctioning, thus staving off the decline that can be seen with the condition.

The research is just beginning, with a few dozen people scheduled to be studied. The article (http://www.cbc.ca/news/health/story/2013/01/21/alzheimer-brain-implants.html) lists some anecdotal reports of improved memory and other skills, including one man who appears to have had little or no decline over four years (though the article allows that no one knows what his rate of decline would have been without the DBS).

Several people are hailing this new step in our approach to Alzheimer’s as a possible breakthrough in the making. So why do I not get filled with hope when I read about studies like this? At the risk of being seen as a “wet blanket” or having an overly simplistic understanding of the process, I will share some concerns I have.

First of all, I want to better understand what we are trying to accomplish. Most available approaches to Alzheimer’s are focused on increasing the presence of certain chemicals in the brain synapses, to fight the loss of these chemicals. So we use drugs to squeeze out a bit more acetylcholine, or to keep it in the synapse a bit longer before it gets broken down. This does nothing to slow the nerve changes in the condition, but it may give people several more months at a certain level of function before they begin to lose the beneficial effect.

It’s not a cure, not even effective in slowing the illness, but if it buys several more months of improved function, it can have an important effect on people’s lives—six more months before needing a nursing home, for example. But I have to ask how DBS works and what added benefit it might offer?

It seems to me that “overdriving damaged nerve cells” is likely to be the major effect of the procedure. DBS may also awaken cells that are not being adequately used, but we all have those; might that not also happen in people without Alzheimer’s? We’ll never know, because there will never be a control group who gets these implants.

If we are simply overdriving the damaged nerves, won’t the effect wear off, or exhaust those nerve reserves? And how long will that take? These are important questions, because this is an invasive surgical procedure, with associated risks and costs. Are we looking toward a future that will see this approach being used for the millions of people who will develop memory loss over the next few decades? Who will pay for these surgical procedures that may offer little more than the benefit that our current pills have given?

These questions are important to me because there are non-invasive and non-medication techniques that also awaken brain connections and revive previously lost abilities. One perfect example is Dan Cohen’s iPod Project, which has shown the power of personalized music to cause impressive “awakenings” in people who had become withdrawn, non-communicative or distressed.

There are many other examples I have seen with pets, art, therapeutic touch, storytelling, even good-old-fashioned attention to good communication and connection with people who have been disempowered and disengaged by our stigmatized approach to care. And while the anecdotal reports of DBS sound exciting, I can tell stories of these approaches that are far more numerous and just as striking.

So…I don’t want to discount the exciting frontiers that people are exploring, but I have to ask: Why do we rush to fund studies that drill holes in people’s heads, but fail to fund studies that put iPod headphones over their ears?

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Psychotropic Drugs in the News

A few news reports on psychotropic drugs have come across my desk recently and, although completely unrelated, they share a common thread. Each case documents either widespread overuse or gross abuse of a powerful drug. And in each case, the abuse or overuse could have been reduced through a more person-centered approach.

Here is a summary, with my comments:
1) Last week, the FDA recommended lowering the dose of the popular sleep medication zolpidem (brand name Ambien). They felt that the usual 10 mg dose was too high for many people, particularly women, as many people have persistent blood levels in the morning that could interfere with activities, such as driving to work. The levels were highest with the extended-release forms.
This is emblematic of a recurring problem for drug manufacturers: namely, deciding on the optimal dose and being willing to give people the option to start lower. Companies often refuse to produce scored tablets that can be easily split, probably to maximize profits. Ambien is such a pill (though there is now a 5 mg pill available, also un-scored).
I recall my old private practice days when Prozac first came out. It was only available as a 20 mg. dose and I had many patients, particularly younger women, who complained that it made them feel too anxious. Many of them solved the problem by taking the pill only every 2-3 days. Prozac does have a long half-life, and I have avoided it in older adults for that reason.
We need to adhere to the maxim of “start low and go slow”, and produced pills that can be split to reflect the diversity of our population.

2) McKnight’s posted an article last week about a former Director of Nursing from California, who was sentenced to prison for “elder abuse”, having freely used the anti-seizure / mood-stabilizing medication Depakote to sedate a number of people with dementia when they declined direction, such as going to the dining room for meals. There were 23 people judged to have suffered adverse consequences, and the medication was felt to have contributed to three deaths. The doctor who signed off on the orders and the former CEO received sentences of 300 hours of community service.
There was a criticism in the Comments section about the fact that the drug was referred to as an antipsychotic, which it is not, and McKnight’s corrected the text to remove the error. Here’s the comment I posted on the site:

“The bigger issue is the inability to realize that much distress comes from our institutionalized, dehumanized approach to care for people with dementia that often leads to their distress. The real problem lies not so much with one particular class of drugs, but rather the idea that ANY pill is the solution to unmet needs or environmental stressors. This article reflects the dangers of ‘drug diversion’ to other potentially harmful classes of drugs simply to avoid antipsychotics.” (http://www.mcknights.com/woman-gets-3-years-in-prison-for-giving-antipsychotics-to-nursing-home-residents/article/275674/?DCMP=EMC-MCK_Daily)

3) What about that New England Journal study? If it seems I have been strangely silent about a study from the October 18th New England Journal of Medicine, it’s because I wrote a Letter to the Editor that was accepted for publication, and I agreed not to pre-release my comments. That letter was finally published on January 10th.
To catch you up, the researchers studied people with dementia living in nursing homes who were taking an antipsychotic for various forms of distress (in this case, risperidone). They then randomized the group and half were continued on the medication, while the other half were quickly switched to a placebo. Guess what? Those who were switched to the placebo had more increase in distress.
There was no effort to identify unmet needs or to create individualized non-pharmacologic approaches. The meds were simply stopped. The authors’ conclusion that the study indicated that there was some ongoing need for antipsychotics was the final straw.
Many people I know write letters about this one; three were published including mine and one from the CMS team. The authors did not dispute my concerns, but rather stated that while there was a role for person-directed approaches, it had yet to be elucidated in head-to-head trials.

A synopsis of the original study is here: http://www.nejm.org/doi/full/10.1056/NEJMoa1114058.

The letters and authors’  response can be seen here: http://www.nejm.org/doi/full/10.1056/NEJMc1214030
What I couldn’t fit into the allotted space was a rejection of the dominant paradigm that continues to infuse and inform our research. There are so many assumptions that a person-directed approach contradicts—that those who were quieter on risperidone were necessarily better off, rather than sedated to varying degrees; that education alone is adequate to test as an “intervention”, without consideration of supportive operational transformation; that a simple “head-to-head” trial of meds vs. “non-pharmacologic interventions” will be adequate to test this approach; and seeing those interventions wholly from a reactive perspective, rather than proactively working to create well-being.

However, the above study did have one important implication that should not be ignored: It showed that simply reducing psychotropic drugs without offering a better path to well-being is likely to fail. Those who have pledged to reduce antipsychotics in their nursing homes without a clear plan to help staff care differently should take note!

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See This Film

When Emi Kiyota and I attended our Bellagio residency last spring, one of the other residents in our group was Dr. Loree Sutton, a psychiatrist and retired Brigadier General of the US Army. Loree works with Dr. Laurie Leitch to develop psychological resilience strategies for people who have experienced post-traumatic stress disorders.

Loree was also an instrumental part of a recent documentary that was previewed for us last year. That documentary, The Invisible War, was nominated this morning for an Academy Award.

The film documents the ongoing and under-recognized problem of sexual abuse and rape in the 5 branches of the US military. It is powerful and stunning, to say the least. In spite of the great benefits we have gained from our military, this has been a serious issue that had not been adequately addressed to date.

The movie is making waves. Ever since its screening (and award) at Sundance last year, it has garnered the attention of Secretary Leon Panetta, Congress and the Pentagon. They are beginning to act, and the culture of abuse is finally being shaken at its foundation.

When you see the film, you will be reminded of the incredible bravery of the women (and men!) who came forward to publicly share their stories. This is a true example of a film that is creating social change. Check it out!

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An Orchestral Conductor Breaking the Stigma of Mental Illness

Today’s BBC News profiled conductor Ronald Braunstein, who rose quickly to prominence at Juilliard and held an internship with the Berlin Philharmonic after winning an international award.

Braunstein lives with bipolar disorder, and the highs and lows he experienced often sidelined him from his work. Even worse, Braunstein discovered that the stigma he experienced from his fellow musicians created even steeper barriers to success in his profession.

Braunstein now works in Vermont with the ME2 (as in “Me too”) orchestra, composed entirely of people who have lived with various forms of psychiatric illness. In coming together to perform their music, the orchestra members find creative and supportive engagement, and work to de-stigmatize psychiatric illness as well.

Many of the features of bipolar illness can fuel the creativity and extroversion that can actually propel performers to greater heights. But the downsides of mania or severe depression can derail one’s career and life. Some (like comedian Jonathan Winters or golfer Hale Irwin) have been able to negotiate that terrain, while others (like John Belushi) have suffered tragically.

We need to foster an enlightened society that understands and supports people living with bipolar illness through good times and bad. Kudos to Braunstein for turning his personal struggle into a force for a better world for all.

I would love to see more initiatives along this line for people living with dementia, too!

Here’s a link to the story: http://www.bbc.co.uk/news/magazine-20732070

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Private Heaven, or Personal Hell?

“The neighborhood is so immaculate that it resembles a set from Leave It to Beaver, but Wally and the Beaver are nowhere to be seen. There are no bicycles or baseball mitts littering the yards; no school buses; no swing sets; no children playing street hockey. For that matter, there are no children. There aren’t even any young couples holding hands. Aside from the droning of a distant lawn mower, the neighborhood is ghostly silent. Mr. Wilson would be in heaven.”

Welcome to The Villages, “Florida’s Friendliest Hometown”. A few years ago, my friend, Saby Reyes-Kulkarni suggested I read Andrew Blechman’s book, Leisureville: Adventures in America’s Retirement Utopias (© 2008, Atlantic Monthly Press). I finally got around to it this week.

Through extended visits to The Villages, Sun City and Youngtown, Arizona, Blechman reveals the lives of those who have embraced the rising trend of segregated (often gated) communities for older adults (the new marketing term is “age-preferred”).

The book details communities of those who wish to carve out a life among their peers, without the annoyances of the rest of society outside their doors. To be sure, the communities are not completely as quiet as the street descibed above. There are a variety of planned activities, shared-interest clubs, karaoke bars, restaurants and even pickup joints. In fact, The Villages made news a while back for the alarming incidence of STDs among their residents.

To me, the community seemed somewhere between 1984 and a childless Truman Show. Every day is “a beautiful day”, as the radio and newspaper proclaim. Easy listening is piped in through lampposts along the streets. Most people get around the
20,000 acre properties via golf carts, some tricked out in preposterous ways. “Big Brother” (developer Gary Morse) lives unseen in a private compound in the center, blanked out on village maps. The completed project comprises a total of 110,000 residents in a cluster of villages covering 33 square miles and extending across three Florida counties. It is 97% caucasian. Young adults and kids have a 30-day visitation limit per year, and the community offers little to attract them even for a short stay.

The residents are wildly enthusiastic about the format and the “lifestyle”–so much so that they basically have no governance body and are content to have the developers make all their decisions for them, (even though, for example, resort improvement costs are passed on to them in wildly inflated amounts). There is little coverage of the world outside, and most are content to be ignorant of the larger troubles beyond their gates.

Are you sold yet? I’m not, and neither was Blechman. The book is worth a read for anyone who is interested in this growing trend and all the nitty-gritty details about what life is like inside these compounds. But why is this happening?

In his concluding chapter, the author starts his critique by railing against the exclusion of young families with children, as if he feels a personal target of prejudice. I thought he had missed what I considered to be the larger points, but he got around to them a bit later.

One of those points is that this trend is, in part, a response to ageism and exclusion of older adults in our larger society. In these communities, elders are visible, engaged, and live life on their own terms (at least within the rules and structure designed for them). They happily trade complete autonomy for visibility and recognition. That’s a strong statement.

A second important point is that the community design is clearly more age-friendly than our usual suburban neighborhoods, although there are few sidewalks, and there still appears to be a denial of frailty and a tendency to move the less able to assisted living homes on the grounds. So there is even ageism (or at least able-ism) within these communities. And the word “dementia” isn’t mentioned.

Finally, Blechman makes an interesting claim–that even though ageism is rampant in American society, the ballooning Baby Boomers will all be over 65 by 2030, and he believes their numbers and economic power will eliminate or even flip the age discrimination seen in our media, advertising, etc. I rejected this idea when I first read it, but I must admit that I am intrigued by the hypothesis.

Accommodations are not cheap, but what is the real cost of this trend? There is a loss for both sides when the older generation segregates themselves. As older adults lose daily contact with the young (family and otherwise), there is also a lost opportunity to share wisdom and create a legacy for succeeding generations.

A woman at Sun City told the author that “things were different at my husband’s last job. He taught on an Indian reservation. It was a traditional community, with elders. If a child misbehaved, my husband only needed to report the child to his elders and the trouble stopped.”

If you think we’re a society that no longer needs community and elder wisdom, open the newspaper.

Fortunately for Blechman, he lives in a community in Massachusetts that embraces all of its members and has both the physical and social infrastructure to help young and old alike live well. We should all be so lucky. Otherwise, this rapidly expanding trend will continue to fragment our society.

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More Trouble for Antipsychotics

Amid the roar over off-label use of antipsychotics in nursing homes, a new study from the Journal of Clinical Psychiatry raises some new questions.

 
This study looked at the four most commonly-used atypical antipsychotics in 332 people for up to 2 years. They found (1) lack of significant improvement, (2) a high discontinuation rate, and (3) high rates of both serious and minor adverse events for all four drugs.

 
But here’s the shocker (two, actually):

(1) Rather than just studying people of advanced age, the subjects were aged 41 and up (mean age in the 60s).

(2) This was not simply a study of people living with dementia. It also included people living with schizophrenia, mood disorders, and post-traumatic stress disorders.

 
The authors concluded that, “Notwithstanding the limitations, the results of our study are sobering.” Unfortunately, they fall into the common trap of saying, in effect, that “there’s no better pill to date, so we’re stuck.” But many of us working with people who live with dementia have found that the idea of a pill is often a flawed approach to the larger problem of eroded well-being.

 
One could certainly argue that the neurochemistry of schizophrenia (with up-regulated dopamine activity) still demands some pharmacologic approach. And many will follow the standard disclaimer that “this is just one study, and corroborating studies need to be conducted before we can jump to any conclusions.” But we cannot ignore the growing evidence that we need to seriously re-think our current use of antipsychotics, which garnered over $12 billion in US sales in 2011 (29% of which was dispensed by long-term care pharmacies).

 
We are bucking a rising trend. Antipsychotics have become a mega-industry in search of consumers. Here are two examples of this disturbing trend:

 
          (1) Last fall in Psychiatric News¸ Army officials discussed the growing use of antipsychotics in our military personnel; not just for PTSD, but also for insomnia, as they were felt to be safer than drugs like Ambien, which can occasionally cause sleepwalking.

 
          (2) There is also a growing trend to medicate our schoolchildren, including the use of antipsychotics for such new diagnoses as “oppositional disorder”.

 
Do we really know the long-term risks of these trends? What are we doing when we create more categories to justify the use of such questionable medications in so many people?

 
This article should spur more serious debate about the paradigms we follow and the adoption of new approaches that focus on the person. That’s not just a buzzword anymore.

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Should We Drop “Dementia” from the DSM-5?

     I was recently asked if I would be willing to write a blog post about the American Psychiatric Association’s plans to drop the word “dementia” from the 5th edition of their Diagnosis and Statistical Manual of Mental Disorders, due out next May. The new manual will replace “dementia” with two classifications: “minor and major neurocognitive disorders”. This announcement has caused a good deal of advance consternation, and an article by geriatric case manager James Siberski in the latest issue of AgingWell (http://www.agingwellmag.com/archive/110612p12.shtml) highlights many of these concerns.
     As you might expect, I have a lot to say on the topic. Would it surprise you to know that I am not totally opposed to the concept? It is a very complex issue, so I will try to tease out some of the nuances here. I will start by describing what I think is good about the decision, then address some of the concerns that have been raised, and some lingering concerns of my own.

 
     The APA decision to remove the word “dementia” was a response to concerns that the term was contributing to the stigma of the condition. According to etymologists, the earliest English usage was in the early 1500s, taken from the Old French word démence, meaning “madness” or “insanity”. At that time, insanity was a concept applied broadly, centuries before cognitive disorders were understood and separated from psychiatric illnesses. (We still struggle with that separation today—see below.)
     Is there stigma attached to the word “dementia” in our society? Absolutely! We see it every day, in all walks of life (though I personally have seen more stigma attached to the word “Alzheimer’s”). A lot of the concerns raised about the new terminology have been centered on the potential effects of removing a word that is in such common usage throughout society. This is the first case where my feelings are decidedly mixed.
     In theory, I strongly support the word change, because I am a staunch advocate of culture change and I believe that language choices help define our worldview. This makes any argument about word familiarity less convincing in my mind. After all, the majority of people use terms like “difficult behaviors”, but I would never let that fact stop me from avoiding the term in my own speech and trying to convince others to change their language too. So if the word “dementia” truly creates stigma, we should be equally insistent on changing it as well.
     I also do not necessarily buy the argument that the DSM changes will increase the workload of most clinicians. My psychiatric colleagues are quite faithful in reporting the various DSM diagnoses and axes on their consultation notes, but I don’t know many internists or other practitioners who ever bother to do that. In my practice, I described diagnostic categories like schizophrenia, bipolar disorder, etc., but I never wrote out the official classifications, nor did the people with whom I practiced. (The fact that the DSM on my own office bookshelf is the 3rd edition—released in 1980 and revised in 1987—is a testament to how often I pull it out for reference.)
     Furthermore, we are required to update medical classifications all the time. New scales, diagnostic criteria, and terminology are constantly appearing in the literature. So I don’t buy the doomsday predictions of the extra work that this might create. And the directive to try and distinguish different forms of dementia is really no more than what we already do.
     My last supportive comment is that this is coming out of our national psychiatric association, which to me represents a major step forward in their thinking. I have seen a lot of stigma come out of this body over the years and I applaud their bold step in addressing a major aspect of stigma head-on.

 
     But I do have concerns. The first is that there seems to be no coordination of decisions that are made on such a large scale and affect so many stakeholders. Mr. Siberski makes the excellent point that major organizations (Alzheimer’s Association, NIA, CMS, Americal Neurological Association, etc.) continue to parse out and classify “dementia”, apparently totally out of the loop of what APA is doing. Why can’t these groups talk to each other about such a huge issue? If we really want to remove stigma, then such changes need to be part of a more global movement to reform our language, one that has the support of many such stakeholders. (A shining example of better collaboration is the document of new dining standards for nursing homes, which was developed in conjunction with regulators, physicians, dieticians, culture change organizations, etc., before it was released.)
     I also have issues with the classification itself. The use of “major” vs. “minor” neurocognitive disorder mirrors the way the DSM has long classified different types of depression. This can be problematic, however, when there appears to be such a spectrum of ability, rather than two clearly distinct categories. It almost suggests two different disorders, and as the AgingWell critique mentions, it ignores the concept of “mild cognitive impairment”. Once again, given all the work going on with neurologists around classification of MCI versus dementia, there should be more communication and collaboration here.
     Regarding the actual terminology, I am as yet undecided. “Neurocognitive disorder” is, in my mind, less stigmatizing than “dementia”, but it doesn’t exactly roll off the tongue, particularly for the general public. If we want society to move away from the stigma of the word “dementia”, we need to give them an easier term to substitute than this.
     I have been slowly moving away from using the word “dementia” myself—not so easy when it’s the title of my book! I often say “cognitive disability”—I like the mindset that comes with viewing dementia as a different ability, rather than a fatal disease. I sometimes say “forgetfulness” and have friends who strongly advocate for the term. I agree it’s far less stigmatizing and helps you see the whole person, though I also understand others’ objection that these conditions represent far more than simple memory loss.

 
     But while I struggle with better language choices, there is a word in the new DSM that bothers me a lot more than any of these: and that is the simple word another. Each description of the neurocognitive disorders contains the caveat that the symptoms must not be “attributable to another mental disorder” (my emphasis). This revives the debate of whether dementia should be considered a psychiatric disorder at all.    

     Just today, British advocate (and person living with “whatever-it-is”) Norm McNamara posted the question to his Facebook friends as to whether dementia should “come under the mental health banner”. The majority of respondents said “yes”, but I continue to have concerns.
     I have expressed before that seeing dementia as mental illness is one of the factors that leads physicians to treat the experiences of dementia in a similar manner to psychosis. This is a huge problem, because there is no neurochemical basis for using these drugs in dementia. The delusions of schizophrenia result from up-regulated dopamine activity, whereas in dementia, dopamine levels are generally low to normal. So dopamine-blocking drugs (i.e., antipsychotics) should not be expected to provide a similar benefit—why does no one talk about this?? Furthermore, one does not have to be “psychotic” to have a different experience of her surroundings, if normal processing pathways have been altered or lost. This “mental disorder” view is a big part of why we are mired in antipsychotic drugs to begin with.
     At the same time, I am not advocating for dropping this family of conditions from the DSM entirely. If someone expresses something that seems abnormal to us, our reference books should list all possible causes, whether psychiatric or neurologic.
     And just to muddy the waters a bit more (as Jesse Ballenger pointed out after a recent post), seeing dementia as neurologic illness can also lead to an overmedicalized view of people, so terminology and classification are only a part of the larger problem of stigma.

 
     Confused yet? I am! This is tough stuff, but we must do whatever we can to not make life more difficult than it needs to be for people living with dementia and their care partners. If forced to summarize all of the above musings into a set of recommendations, I would suggest the following:

 
       1) Rather than simply coming up with their own terminology, the APA should consult with other major organizations, to try and find some consensus. Lack of common wording is ultimately more confusing to the public than any one term alone.
       2) We should continue to challenge the use of the word “dementia” (which is indeed stigmatizing), but do so in the larger context of a re-vamp of much of our language around the condition, moving toward a discourse that better reflects and centers on the whole person.
       3) We should continue to include this family of conditions in the DSM-5, and keep it in the section that lists neurologic, rather than primary psychiatric illnesses.
       4) Both psychiatrists and neurologists need to bone up on the extensive literature around person-centered approaches to dementia, to help them continue to evolve their views, language, and approaches.

     This is the beginning of a new dialogue on cognitive disabilities. Let’s keep it up!

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Catching Up with the Blog

I’m back on the blog after a 2-month hiatus. Things got a little crazy there, but I’ve finally had a chance to catch my breath.

Since my last post, I’ve had a wonderful trip to Europe, where I facilitated my first European “Dementia Beyond Drugs” course, in Brogården, Denmark (hosted by Eden Denmark’s Karin Dahl and Aase Porsmose). I wasn’t sure how it would translate to a somewhat different culture, but the reviews were very positive. One nurse mentioned that it was the first time in her career that she had ever “seen people with dementia as normal people.” I’ve never gotten that comment before, but given our efforts to de-stigmatize the condition, it was a very gratifying remark.

After that, it was off to England. First, I spoke at the annual Eden UK-Ireland conference, where I got to catch up with UK-Ireland Regional Coordinators June Burgess and Paul Bailey. I also got to meet and spend time with Rayne Stroebel, the new Eden Coordinator for South Africa. Rayne is a warm and energetic guy who has been doing great things in support of South African elders.

I capped the trip with a keynote speech at the UK Dementia Congress, where I talked about the critical role of transforming care environments in supporting people with dementia. In between there was a lot of camaraderie, good food and amazing sights. I even got to attend a music gathering in a Wimbledon pub and shared a few of my songs with fellow musicians.

Along with this trip, talks were interspersed in Florida, Ontario, and New Hampshire. This week, I’ll be speaking in Rochester, of all places. On Monday night, I am giving a talk about The Eden Alternative sponsored by the Nazareth College Gerontology Club; on Wednesday a talk about dementia for Lifespan at Baywinde’s Sage Harbor; then I am giving a webinar for Mississippi’s QIO on Friday.

Our Green Houses had a busy month, hosting visits from my friend Becky Case from Colorado, (who is working on her Doctorate in Nursing Practice through Vanderbilt University); Jennfier Carson, Bob Kallonen and Jessica Luh Kim from Waterloo, Ontario; and Hanne Madsen from Denmark, who teaches nursing and therapy staff there. During the coming week, we and the Eden Home office are also co-hosting journalist Howard Gleckman, who kindly wrote about my blog in Forbes.com last August.

Next week, we are launching an exciting series on dementia in Nashville, Tennessee. On Monday December 3rd, I will be joining Dr. Bill Thomas and Dr. Kort Nygard for an all-day seminar on person-directed approaches to dementia, followed on Tuesday and Wednesday by my 2-day Dementia Beyond Drugs class, (this time re-arranged for an audience of 150 or more, with several co-facilitators). Denise Hyde will round off the week with her 2-day course on “Growth-Six Steps to implementing Change”, while I go off to Durham, NC to speak for the Triangle J Area Agency on Aging.

The Tennessee dementia seminars will be repeated in January and February, in Eastern and Western Tennessee, and a CMP grant will provide scholarships to send 2 people from every nursing home in the state to attend. (The sessions are also open to other participants–more info at www.edenalt.org.)

After that, things will settle down for the Holidays. But I have a Letter to the Editor coming out in the next New England Journal of Medicine, critiquing the recent antipsychotic withdrawal study (which was not easy to do in fewer than 150 words!).

Look for another post very soon about the recent decision to drop the term “dementia” from the DSM-V manual. Cheers!

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