April 1, 2015

The National Psychological Association’s End-of-Life Care Fact Sheet

In addition to its many other functions, the National Psychological Association (NPA) produces a fact sheet that addresses the mental health needs of older adults who are nearing the end of life. The information it provides – reproduced here -- should be required reading for all seniors (preferably well in advance of dementia or other debilitating illness), their families, and caregivers.

In the interest of space, I have removed the many study references in the NBA’s piece. If you’d like to check the study citations, you’ll find them in the original document at the bottom of this post.

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The U.S. Supreme Court agreed that Americans should expect palliative care, which combines active and compassionate therapies to comfort and support individuals and families nearing the end of life. End of life is defined as that time period when health care providers would not be surprised if death occurred within about 6 months. Older Americans with chronic illness think about how they would prefer their lives to end, and want a “good death” without burdensome pain, symptoms and technology.

Most deaths (70 percent) occur in those aged 65 and older. Older adults want better discussions, information, and a chance to influence decisions about their care — whether to be at home or in the hospital and to have CPR (cardiopulmonary resuscitation).

Most Americans die in hospitals (63 percent), and another 17 percent die in institutional settings such as long-term care facilities. In addition, most people are referred too late to hospice or palliative care, so they are unable to get the most benefit possible from these specialized services.

What do older adults fear most?
People fear that their pain, symptoms, anxiety, emotional suffering, and family concerns will be ignored. Many critically ill people who die in hospitals still receive unwanted distressing treatments and have prolonged pain.

March 31, 2015

Another Success for Parkinson’s Vaccine Development

Just over a week ago, we learned some interesting news from the Irish biotech company Prothena: the vaccine they produced to slow the progress of Parkinson’s disease (PD) had passed its Phase I trial -- the initial testing of a drug on a small group of people to evaluate its safety, determine a safe dosage range, and identify side effects.

This new Prothena vaccine in development introduces an antibody (PRX002) directly into the body. That particular antibody works to unclump the build-up of alpha-synuclein protein in the brain, and those accumulations are now convincingly linked to Parkinson’s disease.

The vaccine also apparently prevents continuing protein clumping in the brain, thereby protecting it from further degradation of neurons, a breakdown associated with the development and progress of PD.

Positive Findings from Phase I Trial
To establish the vaccine’s Phase I success in the clinical trial, the Prothena researchers tested it on 40 healthy volunteers. Not only did those study subjects tolerate the drug without incident, their average levels of alpha-synuclein -- the suspect protein that clumps – was reduced.

Dr. Gene Kinney, Prothena’s chief scientific officer and head of research and development, said:
We look forward to building upon these data with results from the on-going, multiple ascending dose study in patients with Parkinson's disease expected in the first half of 2016, where we will also be measuring levels of PRX002 in the cerebrospinal fluid and assessing additional biochemical, imaging and clinical biomarker endpoints.

Having shown its vaccine’s safety generally, Prothena is now recruiting people with PD for another Phase I trial.

Earlier Positive Vaccine Results from Austria 
This recent report from Ireland adds punch to news last summer from Austria, where biotech company AFFiRiS had similar Phase I success with its vaccine PD01A. The Austrian researchers administered two different doses of its vaccine, both of which proved safe and tolerable.

March 27, 2015

Two Favorite Poems, Two Interesting Videos

It's been a busy week and I need to start preparing for a family reunion next week. So I'm taking it easy today.

I keep a folder where I store things I come across and I like. Here are a few of the items from that grab bag.

First, two poems: 


When you see me sitting quietly,
Like a sack left on the shelf,
Don’t think I need your chattering.
I’m listening to myself.
Hold! Stop! Don’t pity me!
Hold! Stop your sympathy!
Understanding if you got it,
Otherwise I’ll do without it!
When my bones are stiff and aching,
And my feet won’t climb the stair,
I will only ask one favor:
Don’t bring me no rocking chair.
When you see me walking, stumbling,
Don’t study and get it wrong.
‘Cause tired don’t mean lazy
And every goodbye ain’t gone.
I’m the same person I was back then,
A little less hair, a little less chin,
A lot less lungs and much less wind.

But ain’t I lucky I can still breathe in.

--from Maya Angelou's And I Still Rise, published in 2011 when she was 83.
Ms. Angelou died last year.

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As a queen sits down, knowing that a chair will be there,
Or a general raises his hand and is given the field-glasses,
Step off assuredly into the blank of your mind.
Something will come to you.
. . . 
As for what turn your travels then will take,
I cannot guess. Long errantry perhaps
Will arm you to be gentle, or the claws
Of nightmare flap you pathless God knows where,
As the crow flies, to meet your dearest horror.
Still, if you are in luck, you may be granted,
As, inland, one can sometimes smell the sea,
A moment’s perfect carelessness, in which
To stumble a few steps and sink to sleep
In the same clearing where, in the old story,
A holy man discovered Vishnu sleeping,
Wrapped in his maya, dreaming by a pool
On whose calm face all images whatever
Lay clear, unfathomed, taken as they came.

--beginning and end of Richard Wilbur's poem "Walking to Sleep" 

March 26, 2015

If Your Doctor Has Just Made an Alzheimer’s Diagnosis for You, There’s a Good Chance She Won’t Tell You

On March 24, 2015, the Alzheimer’s Association released its 2015 Alzheimer's Disease Facts and Figures report, which recaps some disturbing observations about the way doctors communicate – or don’t communicate -- with Alzheimer’s patients, their families, and caregivers.

Based on its review of Medicare patients, the association found that only 45% of patients diagnosed with Alzheimer's disease (AD) said that their doctors shared the diagnosis with them.

In case you’re wondering if perhaps the AD patients may have forgotten who said what, only 53% of those patients’ family members and caregivers said the doctor communicated any AD diagnosis.

Alzheimer’s as the New Cancer
Compare those low numbers with the percentage of cancer patients who said their doctors shared the cancer diagnosis with them – 90%.

Beth Kallmyer, vice president of constituent services for the Alzheimer's Association, put it this way: "What we found is really shocking. This is reminiscent of what happened in the 1960s and 1970s with cancer. But that's changed now, and it really needs to change for Alzheimer's as well."

Why are so many newly diagnosed AD patients not told by their doctors?

It’s a sad excuse, but Keith Fargo -- director of scientific programs at the Alzheimer's Association – said it’s often about time: "It's difficult to disclose a diagnosis of a fatal brain disease in just a few minutes.” 

I find those typical 15-minute appointments – during which the doctor’s attention is focused on his laptop screen, not me – inadequate even for the most routine matters. In cases involving AD disclosures, doctors should simply schedule more time.

March 25, 2015

Dealing with Insomnia Without Pills


Last week, I wrote a post about anticholinergic drugs, medications that, according to a new study, can carry irreversible dementia risks. Many of them are popular with seniors and include most of the over-the-counter sleep aids, like the Tylenol PM that I used and abused for years. But since then I've learned to deal with insomnia without pills.

My Struggles with Insomnia:
I'm no stranger to insomnia. Here is my history:
My alcoholic years:  I was a very successful practicing alcoholic until age 49. During those years, I didn't worry about insomnia since I most always went to bed half drunk. My wife and I usually downed at least two martinis before dinner and then sipped vermouth later in the evening. But to be sure that I would be able to get back to sleep when I woke in the middle of the night to go to the bathroom, I kept a small glass of vermouth hidden under my side of the bed and would drink it before going back to bed.

In a classic example of alcoholic denial, I knew my wife was an alcoholic because she took a drink before going to work. I was convinced I was not an alcoholic because I did not do that. Taking a drink at 7am was alcoholic behavior; taking a drink at 3am was not.
Intermittent insomnia:  During the early years of my sobriety, I slept okay except when I traveled, which was often. In those days, jet lag meant constipation and constipation meant insomnia. My remedy was drinking lots of coffee and lots of water first thing in the morning. But it usually took a few days for that regimen to work.
Eight years of big-time insomnia;  My longest and worst spell of insomnia occurred when I was in my 60s, and it lasted about eight years. During that time, whenever I tried sleeping in my bedroom, my body would jerk just as I started to doze off, and I'd be awake until 4am or later. I finally discovered that I could get a good night's sleep if I bedded down on the living room couch. Every time I tried to return to the bedroom, the body-jerk insomnia recurred.

It finally occurred to me (d'uh!) that I had no trouble taking my afternoon nap in the bedroom. That led me to wonder if the nighttime culprit might be the streetlight on the other side of the road from my bedroom windows. I installed blackout curtains to replace the Venetian blinds and... what do you know? The body jerking stopped and I could sleep in the bedroom again. Yeah!
The "Summer from Hell":  Even when body-jerk insomnia ceased, I continued to have intermittent insomnia. I often used Tylenol PM to deal with the problem. When these pills began to lose their efficacy, I got a prescription for Ambien instead.
About 10 years ago, I returned from a trip to Nepal with a particularly bad case of jet-lag insomnia. For about a week, I took a half tablet of Ambien at bedtime along with a Tylenol PM.
By the end of that week, the sleeplessness was accompanied for the first time by major attacks of anxiety and depression. Over the next few months, I consulted with my regular internist, a sleep therapist, and a shrink who specialized in prescribing medication. We tried a variety of antidepressants and sleep aids over that summer. None of them worked, and several made things worse.
Finally, the pill shrink recommended a holistic approach since the usual meds weren't working. I tried a variety of things, including hypnosis and even a trip to New York City to see a therapist who's work had been featured on NBC's "Today Show." She recorded my brain waves and converted them into a customized CD of sleep music. It didn't work but I've still got the CD.
Continuing to try everything, I read The Insomnia Solution, a new book that recommended a variety of approaches, many of which combined meditation with body exercises. One turned out to be a winner.
My Recovery from Insomnia Began With Meditation
I'm a neophiliac -- someone with a strong affinity for novelty -- so I've tried various forms of meditation over the years. But none really worked on slowing down my grasshopper mind.