"Invisible second patients"

 Most people know about this, but may not be aware of the extent or severity of the problem...

"Not long after his wife was diagnosed with Alzheimer’s disease, Tom Lee picked up a book on caregiving, one of the many he’d devour in those early, frightening weeks, when the future felt suddenly impossible to imagine. Amid all the information and advice, he read a line that stopped him cold. “It said, make sure you take care of yourself, and leave at least 15 minutes to yourself every day,” he remembers. “I thought, 15 minutes? Are you kidding me? That’s not even enough time to open a book. When I read that, I really started to wonder what I was in for.”

He first noticed something was wrong in 2017, when Antoinette was 69. She started repeating questions and sometimes struggled to grasp complex ideas. For years, she’d done the couple’s taxes, but that fall, for the first time, she had trouble with the calculations. “I sat down with her, and we went over it a dozen times,” Lee says. “And she just couldn’t get it.” By the following summer, they had a diagnosis.

Six and a half years later, she is in what doctors refer to as mid-stage Alzheimer’s. “That’s when things start to really fall apart,” he says. Patients begin forgetting who they are and where they live. They become moody, withdrawn, combative. As their sleep and circadian rhythms unravel, patients sometimes stay up all night, requiring their caregivers to stay up, too. Routine tasks such as getting dressed become difficult without help, and speech gets more confused. “Toni went through a period where about two-thirds of her words were uninterpretable,” Lee says. “They were words she made up, and she would rhyme things as she spoke.” These days, almost nothing she says makes sense. “You ask her if she’s hungry, and ‘no’ could very well mean ‘yes.’” This middle period is also when patients begin to wander, or fall. One day last summer, Antoinette walked away while Lee was out watering tomatoes in the garden. He found her a quarter-mile down the road, talking to a neighbor’s mailbox.

“As a caregiver, you watch bit by bit as your time slips away,” he says, “and then one day you look up and realize that things you once took for granted, like finding an hour to read or listen to music or go for a run—all that’s gone. You become totally absorbed in caring for this person, making sure they are safe and secure and that their basic human needs are met.”

Across the country, there are more than 11 million people like Tom Lee: unpaid caregivers for someone with dementia. Usually, that someone is a family member or a loved one—the burden falls disproportionately on women—and the majority of caregivers spend one to three years in that role. Often they spend many more.

They are all part of an accelerating crisis. Nearly seven million Americans over 65 have Alzheimer’s, the most common cause of dementia. As the population ages, that number is growing—to a projected 13 million by 2050...

I have been a caregiver in similar circumstances (and the same precepts would apply to families who have children with special needs).   The difficulties are intense and unavoidable, and they push you to the boundaries of your compassion.  The discussion excerpted above continues at length in the most recent issue of Harvard Magazine. 

I will add that in my opinion, the people who have the power to effect changes in the system (executives in businesses, state and national congresspeople) tend to be wealthy and are able to turf these caregiving responsibilites on to paid helpers, and they have very little personal incentive to enact meaningful changes in the status quo.

The upside of dementia

Reposted from 2014.

Sign created for a parent with dementia

Anyone who has had a demented parent or loved one will recognize the utility of this simple intervention.

Via the pics subreddit, where the discussion thread includes many family stories.

Minnesota tries to safeguard the money of vulnerable adults

Auditors working in the Minnesota courts have exposed problems ranging from dubious fees to outright thefts by people appointed to safeguard more than $875 million held by dementia patients and other vulnerable adults.

In one Houston County case, the parents of a young man with cerebral palsy used his money to buy a truck for use on the family’s Alpaca ranch, noting that he enjoyed spending time with the animals. The judge ordered them to repay his estate $21,991 and post a bond of $200,000...

Auditors also raised concerns in several cases about professional conservators and their attorneys who charged high fees to handle simple tasks like opening e-mails and answering phone calls. One lawyer, working alongside a conservator in a Hennepin County case, billed $120 to drop a letter at the post office. He’s appealing an order that he repay $9,192 in fees...

[The Minnesota system] has evolved into the only mandatory, online financial reporting system for conservators in the country. It’s called MyMNConservator, and it alerts the court to red flags in a protected person’s financial reports. Under the old system, it was up to judges and their staff to wade through scanned financial reports, unverified receipts and sometimes handwritten account summaries. Anderson said the task was nearly impossible...

McBride said many times there’s a good explanation for expenses the auditors found suspect. But when the expenses involve substantial funds or valuable gifts that are going to the conservator or the conservator’s family, “then you get really suspicious,” he said. “Ultimately they have to manage the ward’s funds to the benefit of the ward and not to their own benefit.”

"Terminal agitation" in the dying person

Useful information from the Hospice Patients Alliance:

Many families may be surprised when a terminally ill (and usually calm) family member becomes restless or even agitated. The depth of such restlessness or agitation varies from patient to patient...

Those who work with the dying know this type of restlessness or agitation almost immediately... Patients may be too weak to walk or stand, but they insist on getting up from the bed to the chair, or from the chair back to the bed. Whatever position they are in, they complain they are not comfortable and demand to change positions, even if pain is well managed. They may yell out using uncharacteristic language, sometimes angrily accusing others around them. They appear extremely agitated and may not be objective about their own condition...

If, and only if, other obvious causes of restlessness and agitation have already been eliminated, then the physician may directly order medications to reduce the restlessness and agitation...

Terminal agitation is a hospice crisis and meets the criteria for starting the continuous nursing care level of care.

More at the link.

Music hath charms...

An article at Long+Short addresses the question "Can music offer the key to treating dementia?"

In most cases of dementia, regardless of whether or not people have had musical training, they retain their capacity to sing, play, whistle, tap, click, clap, drum and dance long after much of the rest of their cognitive apparatus is deeply compromised. Music is often the very last thing to go, especially the embodied memory of music to which people dance or tap out a rhythm. Music anchors patients, Sacks says, in a way that nothing else can, reconnecting them to that sense of self which is in danger of slipping through their fingers. So it can also connect them to other people from whom they often feel estranged.

This is because music is deeply ingrained in the way our brains have developed. Evolutionary psychologists, neuroscientists and experts in music cognition have not yet come up with an entirely convincing argument as to why human brains are so attuned to music. But a growing body of work, much of it only conducted over the last three decades using new techniques for seeing inside the brain while music is being played, suggests that our brains are fundamentally musical. That is why our capacity to play, enjoy and feel music can outlast the deterioration that dementia and other debilitating conditions bring with them...

As science writer Philip Ball argues in The Music Instinct, music is unlike language: it has no dedicated mental circuitry localised in a few areas. Making sense of music is a whole-brain activity: "No other activity seems to use so many parts of the brain at once, nor to promote their integration." When the brain is listening to music it engages the motor centres that govern movement; the primal emotion centres that govern feeling; the language modules that process syntax and semantics; and the cerebellum that helps to keep time. One of the reasons we are so drawn to music is that it is perfectly designed to allow us to make the fullest possible use of our brains...

More at the link.  My mother, who has advanced dementia, experiences special delight from hearing music.

"The present is their only shared realm"

YouTube link.

What would happen if you combined a nursing home with a preschool?

Via ViralNova, with a tip of the blogging cap to Kirsten.

Dementia and identity

Excerpts from an essay at Aeon:

Memory becomes like a flickering signal from a faraway shortwave radio station: people can do and say things, then promptly forget them, and then do and say them again. They can no longer read obvious social cues. They become easily distressed as a thickening fog descends upon them, causing them to lose track of everything. As the disease progresses, only fleeting glimpses of the once capable person can be seen; for the rest of the time, everyone is stuck with an uninvited guest. Eventually, the sufferer fails to recognise even loved ones.

Dementia raises deeply troubling issues about our obligations to care for people whose identity might have changed in the most disturbing ways...

It’s no wonder that carers feel everything from mild annoyance to profound grief as they take on ever more onerous responsibilities of shoring up someone’s fading sense of self. ... ‘The person I’m dealing with, the person I’m yelling at, the person who’s making me weep with frustration, is like a stranger. He looks like my husband, but Howard’s gone.’

...highlights the significance of physical routines, which, like recalling the steps in a dance, become more important as the ability to follow written instructions dwindles. Even the simple act of walking can restore a dementia sufferer to feeling fit, healthy and capable...

If the environment is cognitively overloaded, with bewildering signs, forms and instructions, not to mention smart devices, then it will make someone with dementia feel less capable and more distressed...

People with dementia need environments that are constant and reliable, and so require little new learning. Living with such people entails embracing the pleasures of patient repetition rather than constant novelty.

Young blood reverses some age-related impairments

As reported in the prestigious Nature Medicine:

At the cognitive level, systemic administration of young blood plasma into aged mice improved age-related cognitive impairments in both contextual fear conditioning and spatial learning and memory... Our data indicate that exposure of aged mice to young blood late in life is capable of rejuvenating synaptic plasticity and improving cognitive function.

Discussed at a webpage of UC San Francisco:

Anatomically, it was clear that these mice formed more structural and functional connections between neurons, or nerve cells, while they also turned on more genes associated with the formation of new nerve connections.

Furthermore, the researchers found that a protein called Creb became more activated in the brain region known as the hippocampus, and that this increased activity was associated with the anatomical and cognitive improvements the team observed...

Identifying and getting rid of aging factors in old blood, or supplying youthful factors from young blood, might both be worthwhile strategies to combat aging...

There is an AMA with the lead author at the Reddit Journal of Science.

VSED as an end-of-life strategy

Excerpts from Complexities of Choosing an End Game for Dementia:

Mr. Medalie’s directive also specifies something more unusual: If he develops Alzheimer’s disease or another form of dementia, he refuses “ordinary means of nutrition and hydration.” 

A retired lawyer with a proclivity for precision, he has listed 10 triggering conditions, including “I cannot recognize my loved ones” and “I cannot articulate coherent thoughts and sentences.”

If any three such disabilities persist for several weeks, he wants his health care proxy — his wife, Beth Lowd — to ensure that nobody tries to keep him alive by spoon-feeding or offering him liquids. VSED, short for “voluntarily stopping eating and drinking,” is not unheard-of as an end-of-life strategy, typically used by older adults who hope to hasten their decline from terminal conditions. But now ethicists, lawyers and older adults themselves have begun a quiet debate about whether people who develop dementia can use VSED to end their lives by including such instructions in an advance directive...

Even in the few states where physicians can legally prescribe lethal medication for the terminally ill, laws require that patients be mentally competent and able to ingest those drugs themselves. Mr. Medalie would prefer that option if he were to become demented, preferably with the barbiturates dissolved in “a little vodka.”

But demented patients don’t qualify for so-called death with dignity. VSED is a lawful way to hasten death for competent adults who find life with a progressive, irreversible disease unendurable...

“Neglecting basic human comfort care is a big source of elder abuse complaints and criminal prosecutions.” And if a patient demands that his basic care be withheld in the event of dementia? “Nobody from a legal perspective has really meaningfully grappled with that,” he said.

In several states, including New York, Wisconsin, Minnesota and New Hampshire, legislatures have banned the withdrawal of oral nutrition or hydration at all, no matter what a directive or a proxy says.

More at the link.  Worth a read for those dealing with a family member with dementia.

Cable TV remote for an elderly parent with dementia

I have been recurrently frustrated by the inability of cable television and electronic device makers to offer a remote control suitable for use by people with impaired cognitive function.  My 95-year-old mother does not have a DVR, does not need a picture-in-picture function, and could never navigate through a scrolling channel-guide menu.  When I explained our situation to the staff at the local Charter office, what they offered me was a similar remote with bigger buttons ("for handicapped people.")

I finally had to modify the remote using duct tape.  It's not optimal, because some buttons get accidentally pressed through the tape, but it's way better than the original.

Addendum:   A tip of the blogging hat to the many readers who offered practical advice in the Comments section.  Also on further net searching I see a simiilar solution was devised by Marilyn at Nag on the Lake.

Addendum #2:  Reader Matthew notes that there is a commercial product on the market that effectively does what I was trying to achieve with tape:  Button Blocker.

A physician blogs about the progression of his Alzheimer's

From a story in today's Washington Post:

At the time, he dismissed the incident as a bizarre memory lapse, perhaps a byproduct of his age, then 66. But now, two and a half years later, he recognizes it for what it was: one of the first major signs of his mind’s decline. Hilfiker has Alzheimer’s, a brain disease expected to afflict a record 14 million Americans by 2050, inflicting a terrible emotional and economic toll on communities, families, and the men and women who learn that their memories and identities will slowly be lost. For Hilfiker, a family doctor who has spent decades helping the District’s most vulnerable, that moment came six months ago.

Since then, he has grappled with how to tell those around him, when to let go of responsibilities and, as a man who has always defined himself by his mind, who he will be when it’s gone. He has also taken the unusual step of chronicling his demise in a blog titled “Watching the Lights Go Out,” providing a sobering guide for the millions headed behind him into the darkness.

This passage from the story particularly resonated for me:

“If I live in the future, it’s a very painful disease,” Hilfiker said one recent afternoon as he sat at his kitchen table in Northwest Washington. “If I live in the present, it’s not.”

What music will you want on your iPod in the nursing home?

YouTube link. 

This video is a production of Music&Memory, whose mission is "to improve the quality of life for the elderly and infirm through the use of personalized music and digital technology."

It's not too early to start thinking about what music you would like to have presented to you when you are neurologically impaired, and to share those choices with your family.   I've started the process by creating on the blog a category of Video - music that now has about 200 entries.

Where shall we go for dinner?

A group of 45-year-old guys discuss where they should meet for dinner. Finally they agree on Kelley's Restaurant because the waitresses have low cut blouses and nice proportions.

10 years later at age 55, the group agrees to meet at Kelley's because the food is good and the wine selection is excellent.

10 years later at age 65, the group agrees to meet at Kelley's because they can eat there in peace and quiet and the restaurant is smoke free.

10 years later at age 75, the group agrees to meet at Kelley's because the restaurant is wheelchair accessible and they have an elevator.

10 years later at age 85, the group agrees to meet at Kelley's because they have never been there before.

(Via Miss Cellania)

Is a clock face still an appropriate component of a mental status exam ?

The photo above comes from a StarTribune article about a "mini-cog[nition]" test that was recently given to veterans and revealed evidence of dementia or cognitive impairment that had not previously been diagnosed clinically.

The mini-cog is one of a number of memory tests that have started to pop up in routine checkups for older patients around the country, including at Allina clinics in Minnesota. In this case, the test involves memorizing three words and drawing the face of a clock.

Last summer my mother was diagnosed with dementia when a social worker at a senior housing complex administered the Saint Louis University Mental Status Exam (SLUMS) as part of an entrance evaluation.  For those not familiar with it, here is the full test -

I met with the social worker afterwords, and in our analysis of the results I noted that mom had misdrawn the clock face, but realized that for the past 20+ years, she had not seen one.  She did not wear a watch and had been living in a condo that had a digital clock in the bedroom, a digital clock on the stove, and a digital clock on the microwave.

Our discussion did not change the interpretation of the results in any meaningful way, but it did raise questions in both our minds as to whether interpreting a clock face is such a fundamental piece of knowledge that it should never be impaired, or whether current testing should be altered to reflect new technology.  Now I see interpreting a clock face is still part of an even-briefer screening exam for dementia.

If you're reading this blog, you certainly have no cognitive impairment, but if you'd like to try the SLUMS test on a parent (or spouse), you can view or print it from the Saint Louis University School of Medicine.

Blogging as a preparation for dementia

I believe I started "rating" or assigning "grades" to books and movies about 30 years ago, as I was reading my way through the Agatha Christie canon.

In the era before the internet, I was cruising the used-book stores in Lexington, Kentucky trying to obtain paperback copies of all the Agatha Christie murder mysteries (I eventually found all 66).  As I read my way through the series, I realized that while some were outstanding (Roger Ackroyd, obviously) and would be worth a reread in later years after I had forgotten the details, others were eminently forgettable (think "Tommy and Tuppence").  So, I kept a list, rating each book on a scale from 4+ (outstanding) down to 1+ (poor).  My plan was that when I was old and retired and had more leisure time, I would reread these, starting with the 4+ and working down from there.

I then extended this scheme to the books of the Time Reading Program series; I couldn't find some of the more obscure issues until the internet was created, but I finally read them all, and kept only the dozen or so that have "4+" pencilled inside the cover.  From there it spread to all the books I was reading, so I now have "Books Read" lists as far back as 1988.

Finally, in 2006, I decided to use the ratings for movies.  It's not hard to do; the system is crude but effective:

4+   Excellent, worth watching/reading again someday.
3+   Very good.  o.k. to recommend, but don't watch until finishing the 4+s.
2+   So-so.  Don't recommend and don't rewatch.
1+   Terrible.  Advise friends to avoid if they ask.

I've been doing this with movies for six years now, almost all of them viewed on cable channels or from library DVDs, rather than in theaters.  Of the 600+ on the list so far, there are about 50 rated 4+, about 200 rated 3+, about 250 rated 2+, and about 100 rated 1+.

In the 1980s, I thought doing all this was a way to get ready for a leisurely retirement, but now that I'm actually in my retirement, I find myself still reading new books and watching new movies and not using the ratings -- yet.  It was just in this past year that I've realized what the lists are really good for:  they will help me tolerate dementia if/when it happens.

This past year I've spent increasing amounts of time helping my mother cope with the new onset of dementia, manifested primarily as a loss of short-term memory.  She's 93 years old, so it's not presenile Alzheimer's, and presumably not hereditary, but the experience has keyed me in toward thinking more about my future several decades from now (should I be fortunate enough to live that long).

I've noticed that my mom can get great enjoyment out of reading a book, then will put it on a shelf or table, and perhaps a week later when I ask if I can take the book back to the library, she'll ask "What book is that?" "It's the one about pioneer settlement in the Midwest."  "Oh, that sounds good.  Can you leave it here while I read it?"  "Ummm, sure..."  And she'll get great enjoyment out of it again.

So now I have my lists, and I'm ready, if/when dementia starts to develop, to begin re-reading and re-watching my favorite books and movies.

But now there's one more consideration:  TYWKIWDBI.  For the last 4+ years I've been storing stuff here I thought was interesting.  Later this year the archive will reach 10,000 posts.  A lot of them now have dead links, and lots of the YouTube videos have been pulled.  Others are no longer of interest because the material was political or economic or dependent on a situation that no longer exists.  And some, frankly, just don't interest me any more.  But there's lots of good stuff.

So here's my plan:  If/when I start to sense the beginnings of dementia (or when my wife tells me it has started), I'm going to stop writing, and go through this blog to select out perhaps a thousand posts and reblog them into "The Best of TWYKIWDBI."  That would be reading material for about a month.  I'll read through that blog every month, again selecting the best stuff - perhaps a hundred - and when the situation warrants, I'll assemble them into a third blog of "the very best" material which I can then look at every week, thinking I'm seeing new material.

I just hope I never have to distill that last group down into the best dozen posts, to be looked at every day...


Addendum:  I wasn't going to list my 4+ movies in this post, because my ratings are totally arbitrary and dependent on personal interests and biases, and because my opinion might have been influenced by variable degrees of intoxication during viewing.  But... as I was proofreading this post I looked for my list of ratings for the Agatha Christies, and to my utter dismay - I can't find it!  And many of the books don't have ratings pencilled inside.  I'll keep searching, but for the moment this reminds me that everything important in life needs to be backed up, so I'll store my list of 4+ movies here for now.  You're welcome to browse.

84 Charing Cross Road, All the Kings Men (2006), An Affair to Remember, As Good as it Gets, Brief Encounter, Brother Can You Spare a Dime, Cinema Paradiso, Da Vinci Code, Das Leben der Anderen, Dirty Pretty Things, Everest (Beck Weathers interview), Face/Off, Fahrenheit 911, Fair Game (2010), Girl Interrupted, God Grew Tired of Us, Harvard Beats Yale 29-29, Hot Shots, Invasion of the Body Snatchers (1978), Juno, Million Dollar Baby, Miss Potter, Nanking, Never Let Me Go, No Way Out, Once Upon a Time in the West, Pan’s Labyrinth, Pay It Forward, Peter and the Wolf (Templeton), Planet Earth series, Stardust, State of Play (BBC miniseries), Storm over Everest, Sunshine, Temple Grandin, Tender Mercies, The Bourne Identity, The CCC [Amer. Experience], The Civil War (Ken Burns), The Cove, The Curious Case of Benjamin Button, The Departed, The English Patient, The Fall,The Kite Runner, The New World [Pocohontas], The Pat Tillman Story, The Polar Express,The Pursuit of Happyness, The Shawshank Redemption, The Turning Point, The U.S. vs. John Lennon, The Usual Suspects, The White Countess, Up, Why We Fight.

Riding with the pizza guy demonstrates "crystallized intelligence"

From a column at the New York Times discussing mental fitness in the elderly:

Many researchers believe that human intelligence or brainpower consists of dozens of assorted cognitive skills, which they commonly divide into two categories. One bunch falls under the heading “fluid intelligence,” the abilities that produce solutions not based on experience, like pattern recognition, working memory and abstract thinking, the kind of intelligence tested on I.Q. examinations. These abilities tend to peak in one’s 20s.

“Crystallized intelligence,” by contrast, generally refers to skills that are acquired through experience and education, like verbal ability, inductive reasoning and judgment. While fluid intelligence is often considered largely a product of genetics, crystallized intelligence is much more dependent on a bouquet of influences, including personality, motivation, opportunity and culture.

To illustrate how crystallized intelligence can operate, Gene D. Cohen, a founder of the field of geriatric psychiatry, related a story about his in-laws from his book “The Mature Mind: The Positive Power of the Aging Brain.” The couple, in their 70s, arrived in Washington for a visit during a snowstorm and found themselves stranded by the train station. When they saw a pizzeria across the street, his father-in-law had an idea. The couple went inside, ordered a pizza to be delivered to their daughter’s house, and then asked if they could ride along.

An excellent story - and a tip to remember.

More at the link, with a hat tip to CCL.

"Failing Memories"

I like this painting.  It's by an English painter, Charles Spencelayh (1865-1958)

Many of his subjects were of domestic scenes, painted with an almost photographic detail... Spencelayh was a favourite of Queen Mary, who was an avid collector of his work. In 1924 he painted a miniature of King George V for Queen Mary’s dolls house.

Found at a very interesting blog entitled Victorian/Edwardian Paintings:

Please note over 70,000 painters of this period, many very obscure, have been identified and this blog concentrates on those that have come up for auction in the last ten years or so. It is mainly compiled using old auction catalogues with help from the many reference books I own.

Via Sloth Unleashed.

When the amnesia of dementia is a good thing

An elderly man was sitting alone on a dark path. He wasn't sure of which direction to go, and he'd forgotten both where he was traveling to...and who he was. He'd sat down for a moment to rest his weary legs, and suddenly looked up to see an elderly woman before him.

She grinned toothlessly and with a cackle, spoke: "Now your third wish. What will it be?" "Third wish?" The man was baffled. "How can it be a third wish if I haven’t had a first and second wish?"

"You’ve had two wishes already," the hag said, "but your second wish was for me to return everything to the way it was before you had made your first wish. That’s why you remember nothing; because everything is the way it was before you made any wishes." She cackled at the poor man. "So it is that you have one wish left."

"All right," he said hesitantly, "I don't believe this, but there's no harm in trying. I wish to know who I am."

"Funny," said the old woman as she granted his wish and disappeared forever. "That was your first wish..."

Anecdote credit to doriangray.

Meet Paro - the "furbot" for dementia patients

He's a robotic seal developed by Japanese researchers to help dementia patients feel that they have companionship and a feeling of security, without the responsibilities of a living pet. Made to emulate a live pet as much as possible, he can cuddle, nod and blink his big black eyes. Paro is currently being tested with patients in Baden-Baden and there are already 1,000 robot seals deployed in long-term care homes in Japan.

The image comes from a gallery at Der Spiegel featuring submissions to Focus magazine's "Beauty in Science" photo competition. Paro has been on the market for several years and was featured in an article at AARP's website:

...the world's first therapeutic or "mental-commit" robot - designed to provide relaxation, entertainment and companionship through physical interaction. This adorable furbot was modeled after a baby harp seal literally from the inside out. Sensors beneath Paro's fur and whiskers trigger the seal to move and respond - wriggling with delight when petted and showing displeasure when ignored. Its eyes open and close, and its flippers can move as well. Other built-in sensors allow Paro to respond to sight, sound, temperature and even posture. Covered in soft white antibacterial fur, Paro's artificial intelligence means it can mimic animal behavior and over time, even develop its own character. The latest Paro model, (8th generation) can recognize seven different languages: Chinese, English, French, Japanese, Korean, Portuguese and Spanish...

I don't know whether to be delighted that mankind has developed a robot that learns and recognizes seven languages, or to be saddened that such technology is necessary to replace a function that used to be performed by humans...

Paro's homepage.