June 3rd, 2008 by Dr. Val Jones in Expert Interviews
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The following interview with Alzheimer’s researcher, Dr. Jeffrey Cummings, is a continuation of part 1…
Dr. Val: Tell me about the comorbidities associated with Alzheimer’s and how caregivers can prepare for them.
Dr. Cummings: Being a caregiver is a real challenge. It’s so difficult to take care of someone who may be incontinent, agitated, psychotic or depressed. All of these symptoms occur with increasing frequency as the disease progresses, and can challenge even the most devoted caregiver.
There are educational programs that can help to explain to caregivers where these behaviors are coming from, and can teach them how not to exacerbate the symptoms. For example, it’s important to avoid confrontation with the patient. If he or she doesn’t want to take a shower in the morning, then it’s better just to let it go.
Reducing friction between the caregiver and the patient has been shown to delay the time to nursing home placement, so there are behavioral interventions on the part of the caregiver that can be very beneficial.
Dr. Val: What can online companies like Revolution Health do to support patients with Alzheimer’s disease and their caregivers?
Dr. Cummings: We’ve learned that there are things that people can do to protect themselves against getting Alzheimer’s disease. This includes physical exercise (at least 30 minutes per day 3 times per week), active engagement in leisure time activities, eating a diet high in anti-oxidants (such as salmon, green leafy vegetables, and blueberries), avoiding head trauma (e.g. wear helmets while cycling), controlling high blood pressure, and controlling cholesterol.
It would be great if Revolution Health included all of these healthy lifestyle strategies in a comprehensive Alzheimer’s prevention agenda.
Dr. Val: Is there a role for the “brain games” movement in Alzheimer’s disease?
Dr. Cummings: That’s an interesting question – though I’ve seen very little data supporting brain games in particular. We do know that active intellectual engagement reduces the risk of Alzheimer’s disease, but once one has the disease, it’s less clear whether these kinds of programs can actually reduce progression. At the very least they may reduce agitation by active engagement of the patient, leaving less time for them to be unoccupied. I’d really encourage the people who are developing brain games to test them in well controlled trials. The games could be tested in the same way that drugs are tested.
*Listen to the full interview here*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
May 19th, 2008 by Dr. Val Jones in Patient Interviews
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I met Patty Smith and her husband Jay at the Alzheimer’s Association gala in Washington, DC. Patty was diagnosed with early onset Alzheimer’s at the age of 51, and has devoted her life to raising awareness of her condition. She agreed to deliver a short message to the large audience, including political celebrities like Nancy Pelosi, Chris Matthews (of Hardball) and Newt Gingrich. I was able to spend some 1:1 time with Patty in a quiet press room prior to the event.
What struck me most about Patty was her courage and determination. Although her symptoms were troublesome to her (she had some difficulty concentrating, remembering details of her past, and couldn’t offer robust answers to questions) she was prepared to be vulnerable in a very public way. I was moved by Patty’s bravery, and her willingness to sacrifice personal comfort for public education. Of all the important donors and benefactors at the event, Patty was (in my opinion) the one who sacrificed the most- because she was the one who was willing to expose her frailty to us all. I became quite misty-eyed during this interview, as I witnessed a beautiful and brilliant woman slowly being robbed of her faculties (as was my own grandmother) by a relentless disease. I am honored that Patty took the time to tell me a little bit about what it felt like to be living with Alzheimer’s. My prayers are with her and her family.
Dr. Val: How were you first diagnosed?
Patty: I was working downtown on K Street for BB&T as one of their top consultants (I was 49 years old). But I slowly started missing some things and forgetting to follow through with my work. I remember being devastated when I was written up by my superior for poor performance. I decided to take some time off to figure out what was going on with my brain.
I went to see a neurologist who ordered an MRI. The MRI was normal because it was too early in the disease process to see changes. The neurologist then sent me to a psychiatrist to check me for depression. After several sessions, the psychiatrist sent me back to the neurologist saying “If this woman doesn’t have a neurological problem, I’ll eat my hat.” Then I had a PET scan which showed the Alzheimer’s disease. It took a really long time to get the diagnosis because no one thought of Alzheimer’s as a possibility for someone so young. Also there’s no history of Alzheimer’s in my family and my father is one of 17 kids.
Dr. Val: Did you undergo any genetic testing to find out if you carry a gene for Alzheimer’s?
Patty: Well, the neurologist ordered some tests on my spinal fluid, but unfortunately the person who tried to do the spinal tap missed so many times that we gave up because it was painful. [Patty’s husband adds: In the end the test results don’t make that much of a difference. You either have it or you don’t.]
Dr. Val: What is the most difficult part of being diagnosed with early onset Alzheimer’s?
Patty: The thing that frustrates me the most is that I lose my thoughts for a moment. They come back relatively quickly still. It’s hard to see it affecting my children. They’re 22 and 20. My diagnosis has been difficult for them but they’re taking it pretty well I think.
Dr. Val: If there’s one thing you’d like others to know about early onset Alzheimer’s disease, what would that be?
Patty: I’d like doctors to consider it as a possibility when they’re seeing patients with complaints like mine. It shouldn’t take years to get diagnosed. We have to break the stereotype of Alzheimer’s being exclusively a disease of the elderly. Younger people with Alzheimer’s get diagnosed with “stress” or depression, even though the symptoms are the same whether you’re 85 or 50 years old.
Also, I’d like more research funding for drug development. I’d like the FDA to move a little faster on getting the drugs out as well. I’m willing to volunteer for clinical trials, but I’m afraid that I’ll be placed in the placebo group, and I’d really like to get the drug.
Dr. Val: Are you taking any drugs now?
Patty: Yes, I’m on Aricept, Wellbutrin, and Namenda.
Dr. Val: Are you bothered by any side effects?
Patty: At the beginning we had to adjust the dosage of the Aricept because I was getting “night terrors.” I’d wake up in the middle of the night and sit bolt upright in bed and scare my husband half to death. Of course I didn’t remember any of it because I was still asleep. We cut the dosage of Aricept in half and the problem resolved.
Dr. Val: What are your plans going forward?
Patty: I’m going to continue helping the Alzheimer’s Association to raise awareness about the disease. Our healthcare system is not equipped to handle all the additional people who will be diagnosed with Alzheimer’s in the near future. We must get the message out so that we can prepare better. I’ll continue on giving speeches across the country for as long as I can do this.
*USA Today profiled Patty and Jay in an article published last year.*This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
November 14th, 2007 by Dr. Val Jones in News, Opinion
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“Grow old along with me! The best is yet to be, the last of life, for which the first was made.”
— Robert Browning
As a rehabilitation medicine specialist I do a lot of work with cognitively impaired men and women. The brain is a fragile and fascinating organ, and perhaps the most perplexing one to treat. Alzheimer’s disease, of course, has no known cure – and those who contract it meander through a frustrating cognitive web towards a final common pathway of dementia, dependence and eventually death.
Former Chief Justice Sandra Day O’Connor has been in the news lately because her husband, an Alzheimer’s patient who requires nursing home assistance for activities of daily living, has forgotten who she is. But even more emotionally difficult is the fact that he has fallen in love with a fellow nursing home resident, and has been behaving like a love-sick teen – holding hands, staring into her eyes and kissing her tenderly.
The New York Times reports that Ms. O’Connor is “happy for her husband” that he has found joy in the midst of his cognitive decline. I wonder if there truly isn’t part of her that mourns the loss of those kisses that were once for her.
My fondest hope is that I can grow old with my husband, and that we will enjoy our final years together, in possession of all our faculties. I hope that Robert Browning’s poem will ring true at the end, and that I never have to watch my husband forget who I am. Sadly, since my grandmother passed away from Alzheimer’s – I wonder if it will be my husband, and not me, who watches the other decline?This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
June 9th, 2007 by Dr. Val Jones in True Stories
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My grandmother was a kindly woman. She grew up in a frontier town in Alaska, the daughter of
a photographer. She lived simply, and
spent the majority of her waking hours figuring out how to stay warm. Much to her delight, her mother eventually
moved to San Francisco,
where she was able to thaw out and bloom.
She went on to marry a charismatic business man (one of the
early founders of Technicolor Films) and had 6 children, the first of whom was
autistic. It was a great challenge
taking care of all those kids, with her husband away on business much of the
time. And there were no special services
for children with autism then. So it
came as no surprise when my grandmother seemed a little forgetful and frazzled. But that forgetfulness was not so innocent as
it turns out.
Memory lapses grew into more advanced confusion, as her
children noticed that she was becoming unreliable. She would forget to pick them up from school,
couldn’t remember where they were going next, and didn’t recall what they had
told her only moments prior. My
grandmother had early onset Alzheimer’s disease – and it would take her on a
path of no return.
By the time I was old enough to know my grandmother she was
being cared for by home health aids. She
was still extremely sweet and gentle, and could have short conversations that
were interesting and engaging, but she had no idea who I was, or why we were
speaking. Still, her Victorian
upbringing caused her to be extremely well mannered – never letting on that she
secretly wondered why this “nice young girl” (a perfect stranger) was spending
time with her in her house.
But the strangest part of grandma’s journey with Alzheimer’s
was that it took her on a reverse tour of her former life. She seemed to be reliving each day that had
had the most emotional impact on her – in descending chronological order. So that some weeks she believed that each day
was her 60th birthday… and then she’d move on to each day being her
58th birthday, and so on… But the most heart-wrenching span of weeks
were when she thought it was the day of her husband’s death. She wept all day long, reliving the
experience. We would ask her why she was
crying, and she’d look at us incredulously, “Well, don’t you know that Kay died
today?” Our lack of appreciating that
obvious fact added to her extreme loneliness… as if she had lost her husband
and no one else cared or noticed. We
would try to dissuade her of that notion, reminding her of the actual date and
who each of us was. But alas, the
neurons that housed her emotions seemed to outnumber those that ordered her
memories, and so only time could change her of her perception of reality.
We all watched grandma deteriorate over the years, being
dragged backwards through time by some invisible force, verbalizing her
experiences as she relived them. It was
a kind of bizarre way to learn about her life – through the eyes of a woman who
told old stories as if they were currently occurring.
But eventually the stories ceased, and she regressed to a
non-verbal state. Her mind had finished
its story telling long before her body was ready to let go.
Grandma lived until the age of 96, and passed away
peacefully in her sleep. I can only hope
that she was dreaming of pleasant events in her early childhood when she
slipped into the ether – a baby in a shadow of memory.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
April 28th, 2007 by Dr. Val Jones in Opinion, True Stories
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A psychiatric nurse once relayed an observation to me that I
have been pondering for the last decade.
We were working together in an inner city “dementia unit,” populated
with patients with end stage Alzheimer’s, vascular dementias, and brain
disorders of unclear etiology.
Individuals were parked in geri-chairs in institutional hallways, others
were in bed in 4 point restraints for their own protection, still others were
muttering to themselves in wheelchairs.
We were discussing the case of a particularly unpleasant
patient – he would swing at people as they got near him, trying to hurt them –
scratching, punching, even biting if you got close enough. His favorite thing was to grab nurses’, or
other female staff’s, breasts or crotches. He rarely succeeded at this, since most staff
were aware of his tactics, though he sat in his chair nearly motionless, like a
Moray eel in a reef cave, small eyes and snaggle teeth, mouth open slightly at
all times, taking slow deliberate breaths as he waited for an unsuspecting ocean
dweller to wander inadvertently into his reach.
I asked the nurse how she thought he had gotten to be so
rotten. She replied simply, “When people
get older they become more like themselves.”
That one sentence has fascinated me ever since. Could it be that as we age (and our minds
lose their ability to maintain the social graces we were taught), we slip into saying
things in an uncensored manner, and behaving the way we truly want to? Or is the difference between “sweet little
old ladies” and “mean old biddies” a matter of how much damage there has been
to their frontal lobes?
The scientist in me would like to explain away all agitation
as an organic brain disorder. But I just
don’t think we can reduce human behavior to neuroanatomy. The complexity of a lifetime of circumstances
and individual choices – and their interaction with personality – are soul-defining.
Perhaps age brings wisdom and life experience… or maybe it
unveils the truth about who we’ve been all along. Either way I have a feeling that when the time
draws near for our bodies to give up our souls, we can catch a glimpse of what people
are “made of” in their final words and deeds.This post originally appeared on Dr. Val’s blog at RevolutionHealth.com.
