Friday, October 30, 2015

The Gift of Caring: A Wonderful New Book

Taken at the National Zoo in Washington DC

Many books have been written about caregiving over the years, some very good and some that just repeat the same old things.  The Gift of Caring: Saving Our Parents from the Perils of Modern Healthcare by Marcy Cottrell Houle and Elizabeth Eckstrom is the most important book on this topic in years.  It is a book that should be required reading for anyone entering the field of gerontology, whether they are researchers or clinicians or for any of you who are caring for a family member or might be in the future—in other words, practically everyone.  There are some things that can only be understood on a personal level as done in this book, rather than in the more objective terms of research findings.  I wish I had been able to assign it to all my students so that they could become sensitized to the many ways our health care system fails our most vulnerable patients.

There are many things to like about the book.  It has a clever format.  Much of the book was written by Marcy Houle, a writer and biologist, who tells a story that spans many years of her parents’ illnesses, care and deaths.  She and her family faced many of the most challenging problems—strokes, dementia, falls, to name a few.  No matter how severe the problem, Houle was able to find strategies and resources that made it somewhat better.  Interspersed with Houle’s story are chapters written by Elizabeth Eckstrom, a geriatrician who provides background and commentary about the problems that Houle and her parents encounter.  This balance of personal experience and expert medical perspectives makes the book enormously useful.

Houle has a wonderful ability to see what can be done to make even the most dire situation a bit better.  She doesn’t accept usual care as an acceptable standard.  When her father was living in a lackluster nursing home, she and her daughters brought music and pictures into his room and began having parties.    Despite his advancing dementia, he perked up.  At a later point when Houle found him suddenly slumped over and unresponsive, she didn’t accept the physician’s explanation that the mood stabilizer he had been placed on was necessary to protect the staff from his violent behavior.  Instead, she reached out to her pharmacist and to a geriatrician, who identified that the “violent behavior” started after the facility had inexplicably stopped her father’s pain medication.  He was in pain and reacted to efforts of staff to do hands-on care by striking out.  Substituting Tylenol for the mood stabilizer led to dramatic improvements.  “We watched my father transform from limp and unresponsive…to smiling again” (p. 94).   This example is not an aberration.  We have seen many similar medication problems over the years.

A major part of the problem is that health care staff hold negative expectations that create a self-fulfilling prophecy—when you assume older people will only decline, you don’t bother to do the things that might prevent that decline or reverse transitory symptoms. Also contributing to this problem is that some, shall we say, entrepreneurial, skilled nursing and rehab facilities see therapies not as a way to improve the functioning of the patient so much as a way to increase their own bottom line.  Over time, even well-intentioned therapists may find their morale undermined by being expected to do therapy on patients with little chance of improvement, causing them to miss the opportunity to make a difference when it is possible.  Another example from the book illustrates this issue much more dramatically then the past three sentences.  Sent to the nursing home after a fall in the hospital, Houle’s mother was supposed to receive physical therapy.  Instead of gaining strength, she became weaker and weaker. Although the staff checked off that she was receiving PT, the helper the family had hired to stay with her said they never gave her therapy.  When Houle discussed the situation with the facility’s social worker, she was told that she needed to accept that her mother would not improve.  But Houle did not accept that.  She brought her mother home and found a physical therapist who provided appropriate treatment that helped her mother regain a portion of her functioning.

There are many other examples throughout the book of how Houle and her family found creative ways for dealing with the small and large problems related to her parents’ illnesses and care, and helpful suggestions by Eckstrom as well.  The larger lesson that emerges is that many of the problems that older people experience are not part of disease or old age, but are iatrogenic – generated by uninformed medical care, poor nursing care, inept physical therapy, and lousy social work.  Did we leave anyone out?

The book shows that things don’t have to be that way.  We expect too little when it comes to care of older people.  We should expect that doctors and nurses and other health professionals who treat older people should have training in geriatrics, so that they at least know how to do no harm.  Likewise, nursing homes should be expected to provide high standards of care that are achieved in countries such as Sweden.  Good care may at times cost more, but there will also be cost-savings by avoiding some of the problems associated with bad care. 

We want to add that we know there are many people working in care of older persons who provide the right kind of care that maximizes a person’s functioning and quality of life.  We also have been in nursing homes that due to diligent and far-sighted leadership provide excellent care.  But the situations described in The Gift of Caring are all too common.  Reading about all the small and occasional large triumphs in this book is uplifting.  It also is the best primer we know that will prepare you for the challenges that might lie ahead for a parent or spouse.  Or for you.

The title of the book is The Gift of Caring:  Saving our Parents from the Perils of Modern Healthcare, by Marcy Cottrell Houle, M.S., and Elizabeth Eckstrom, M.D., M.P.H.  Here is a link for the book on Amazon:

Sunday, October 11, 2015

The Best Thing About Retirement, So Far

I have been reflecting about my experiences so far as a semi-retired person.  That has involved not having a set schedule or responsibilities for tasks that I don’t want to do.  I am working with my talented doctoral students and on research and papers, all things that I enjoy.  I don’t go to meetings and am not doing any teaching, except for an occasional guest lecture.  So what is the best thing so far?

Judy and I have begun doing some of the big things we planned.  We had a leisurely two weeks in Paris last May.  It was a marvelous trip that we thoroughly enjoyed.  But it was not the best thing so far.

We have been seeing our grandchildren more often.  In a couple of weeks we will be spending a long weekend with two of them and their parents in Washington, visiting the zoo to see the pandas,(including the new baby panda), elephants and other animals that tweak a three year old’s fancy.  This is certainly one of the things we have most been looking forward to.  Is it the best?  In the long run, seeing them grow up will be the best thing, but there is something else each week that for me embodies the real promise of retirement.

The best thing so far?  It’s on Sundays. I no longer start to feel by mid-afternoon the dread about the tasks undone at work or that need to be done the next week.  I no longer feel uneasy in the pit of my stomach about what looms ahead on Monday, or believe I have to use Sunday to catch up. Instead, I can do what I want.  Watch football.  Walk outside to look at the leaves, which have nearly reached their peak colors.  Read a book for pleasure.  Or watch The Great British Baking Show with Judy.

This feeling of freedom on Sunday is at the core of what can be best about retirement.  Judy has observed that retirement is the first time since we were on summer vacation as children that we could do whatever we want.  There is no one telling us what to do. It is entirely up to us.  This is truly the opportunity that retirement brings.  For some retirees, this freedom is frightening, and they don’t know how to fill their time without the structure of work.  But both of us have had ideas and interests we have wanted to pursue, if only we didn’t have work.  There is a wonderful Calvin and Hobbs book about summer vacation titled The Days Are Just Packed.  We’re on summer vacation.

So if you are going off to work tomorrow, think of me.  I’m going to kick back and listen to the Mamas and Pappas’ classic, Monday, Monday, with a big smile on my face.

Coming Soon:  Part 2 of “There’s No Place Like Home.”  We’ll look at helping keep parents at home and what you need to do to stay at home.

Tuesday, October 6, 2015

Newsflash: Alzheimer’s Disease Has Been Cured!

We happened to encounter a flurry of postings and blogs about Alzheimer’s disease on the web today.  The research these postings were based on was not new, but had generated considerable enthusiasm on the web about possible breakthroughs in treatment of Alzheimer’s.  That would, of course, be wonderful news.  But as with much that is written about Alzheimer’s disease, it can be hard to distinguish between science and hype.

Article 1.  The headline of this blog read “Happy New Year!  Stanford May Have Just Cured Alzheimer’s.

Ok, we aren’t up to date on this blogger, and we don’t hold Stanford University responsible for the content or title.  The science behind this study is kind of interesting.  The premise is that Alzheimer’s may be caused by the failure of cells that are part of the immune system and clean out the brain of various substances that may lead to the damage found in Alzheimer’s disease.  Apparently, by getting these immune cells working again, memory loss is reversed.  In mice.

As you may know, mice don’t get Alzheimer’s disease, but to study the disease, scientists have created a “mouse model” by introducing genes that cause changes similar to Alzheimer’s disease.  Going from mouse to man is the issue.  Mouse studies can provide interesting leads, but since mice don’t get the disease normally, treatments like in this study may help in an abnormal condition imposed unnaturally on mice, but not in people.  So far the translation to humans of other results based on mouse models has not been encouraging.

Article 2.  New Alzheimer’s treatment fully restores memory function.

This is an Australian study reported in March.  According to the article, which was published in the prestigious journal, Science Translational Medicine, ultrasound removes amyloid-╬▓, one of the main types of pathology found in Alzheimer’s.  And memory improves.  In mice.

One of the authors is quoted on the web as saying that the word “breakthrough” is overused, but he believes this is one.  Maybe this treatment will pan out in humans, but the plaque busting drugs that worked well in mice have bombed in humans.  Even when these medications eliminate amyloid plaques in the brain, memory does not seem to improve.  And they are not without nasty side effects.

Article 3.  How Can We Detect Alzheimer’s Early

A longstanding goal in research has been to be able to detect Alzheimer’s early, and treat it before too much damage occurs in the brain.  How to detect Alzheimer’s early remains a problem, and there is much controversy over the meaning of findings of amyloid plaques and mild memory loss found in humans.  Do these kinds of changes signify early Alzheimer’s or not? 

Now comes an answer to identifying early cases.  We have to admit we overlooked this report when it burst upon the scene two years ago.  According to researchers at University of Florida, you can tell who is going to get Alzheimer’s disease by their ability to smell peanut butter!  We couldn’t bear to track down the original papers from that study.  The literature is filled with studies that claim that one single factor will tell us who will get Alzheimer’s or who has it, and these studies never pan out.  Alzheimer’s is too complicated and varied for any single marker to always indicate the disease in a reliable way.  But on second thought, maybe there is something to peanut butter.  We use it to bait our mouse traps and we can attest that mice are able to smell it.  And they don’t have Alzheimer’s.  Makes you wonder about the mice who are given the Alzheimer changes…maybe someone needs to do a study to see if they lose their ability to smell peanut butter.

Article 4.  Memory Loss Associated with Alzheimer’s Reverse for First Time

This is the headline of a news release from UCLA from a year ago.  The release is based on a paper published in the on-line journal, Aging.  Here, the idea was to give people multiple treatments in the hope that something would change.  There were 36 parts to the treatment including diet changes, brain stimulation, exercise, increasing sleep, medications and supplements. 

The idea of using multiple treatments is appealing.  There may be factors that slow the disease a little bit.  Exercise, weight control, and cognitive stimulation are the most promising of these factors.  The idea of multiple treatments is that if you put all of the things together that might work, they might add up to something useful. 

Ten people participated in the UCLA study.  Case studies are presented on three of those people and subjective information along with some lab tests are reported.  But what is not clear is how many of the people actually have Alzheimer’s disease.  One person is described as having severe Alzheimer’s and did not improve during the treatment.  Diagnostic information is not presented about any of the others.  Instead, they are described as suffering from mild cognitive impairment or subjective cognitive impairment, that is, they report a problem with memory but it was not actually confirmed.  Though the article claims their memory improved, that is again apparently based on self-reports and there are no objective tests showing improvement.  Maybe the treatment works, but maybe the people who elect to participate in an intensive study where they make a lot of lifestyle and diet changes and get lots of attention and are expected to improve are going to report that they are doing better, whether they do or not.  Did we say there was no control group?   There was none.  To claim Alzheimer’s has been reversed for the first time is rather overstated.  In fairness, one of the authors is quoted as calling the findings “anecdotal.”  He got that right. 

All the fear that has been created around Alzheimer’s disease in recent years means that people will grasp at anything positive that comes along.  The media and internet fan the flames, because they know it gets attention.

Maybe it doesn’t matter, but it seems wrong to us to raise fears and false hopes about a terrible and heartbreaking disease like Alzheimer’s.  There are serious studies going on that are incrementally increasing our understanding of Alzheimer’s and other forms of dementia.  We hope someday this research will give us treatments to ease the symptoms and maybe even arrest the disease.  Maybe the studies we looked at here will even contribute to that breakthrough.  But, frankly, we don’t yet understand the disease well enough to know where to look for those treatments.  We’ve been like the proverbial man looking for his car keys under the lamppost.  When asked if that was where he lost them, he replies “No, but it’s where the light is.”

For now, we might better put our energy toward supporting those families who are caring for someone with dementia.  We can do things that help make each day easier by being there, listening and helping out the caregiver and the person with dementia.

The photo is Lake V├Ąttern in Sweden, a very lovely and peaceful place.

Thursday, September 24, 2015

There’s No Place Like Home – Part 1

If you ask people the question, “Where would you rather be, at home or in a nursing home?” the response will come back overwhelmingly “At home!” 

If that’s you, you should read on.  Because if you really want to stay at home, it will take more than clicking your heels together three times, while you chant, “There’s no place like home.”  If you are going to succeed, you need to put plans in place now.  Otherwise, when a crisis develops, your children or next of kin or a case worker from some government agency will swoop down and pack you off to the nearest nursing home.  That crisis may be many years off, and we know it’s hard to think about a time when we are not fully in control of our lives, but this is the time to start planning.

Why It’s Good to Stay at Home

Let’s start with why it’s good to stay at home.  There are the obvious reasons.  You have created a place where you are comfortable, and you get to make all of your own decisions.  Your home reflects who you are, and you like being around all the furnishings, tchotchkes, and photos that are rich with memories.  But more than that, people really do better if they can stay at home.  There is no one telling them when to get up and when to go to bed.  They can stay more active, doing all the little things around the house.  When people don’t have beds to make or meals to prepare (or even heat up food in the microwave), they tend to decline in daily functioning.  This can happen at home, too, but having routines helps keep people involved and active longer.  They are in control of their life and that helps them keep going, too.

What It Takes to Stay in Your Current Home

While it is easy to imagine staying in your home, it is harder to think about what your life would be like if you become frail or disabled in some way.  The key to staying at home is making it possible to continue living there even if you become limited in the things that you can do.  That’s where planning comes into play.

We have organized our discussion around 3 questions.  The answers to these questions will help you decide if you want to remain in your current home, move to another home, or move to housing designed for older persons that take care of these potential problems for you.  We will address in the next blog some other issues about staying in your own home, and in later blogs the pros and cons associated with other housing choices.

1.     Is your current residence the right kind of place for you to live for a time when you might have difficulties getting around? 

Take a cold, hard look at your home.  Some homes are frankly not good places to grow old.  We love our house, but it is not a house that can be adapted to meet our needs should we become less mobile or, ultimately, frail.  Here are some of the points to consider.  Can you live all on one level without going up and down stairs? (This could be important if someone fractures a hip.)  Are there steps to get into the house? (A few steps can be modified by adding a ramp, and sometimes a wheelchair elevator can be added.) Is there a walk-in shower that is big enough to accommodate a seat or wheelchair?  Are there other potential hazards or quirks in the house that cause problems?

Here’s a little exercise to try:  Imagine that your friend’s 95 year old grandmother is coming to your house to visit.  She has recently had hip surgery and she uses a walker.  What obstacles will she encounter?

While you’re looking at your house through the lens of your much older self, there are probably things you can change and update that will make your house more age-friendly.  You may have been putting off remodeling a bathroom anyway.  Do it now, but make it accessible, with rails and a walk in shower.  If the washer and dryer are in the basement, can you move them to the main floor?  There are other changes that you might be able to make that make the home safer and more accessible.  But if the house requires too many changes, this may be the time to think about making a move to a place that would provide more accessibility and safety. 

2.     Is your home likely to require more work and more repairs than you are willing to make? 

Like people, all homes age and develop problems.  If you live in an older home, you know how constant the problems are.  Even after extensive remodeling our old house still springs an occasional leak or something breaks. We are on a first name basis with the plumber, electrician and a contractor who does the bigger jobs. 

Many older people defer maintenance on their homes, or put patches on problems that will only then recur.  They may feel that since they don’t expect to live too many more years, they won’t get their value from a new furnace or a remodeled kitchen or bathroom.  But if the heat goes out in the middle of a northern winter or the AC goes out during a Florida summer, that may be when family says “It’s enough,” and hauls you off to the nearest old age home.  If you have an older home that requires a lot of upkeep, and you don’t want to have to do it, then you might consider moving now or in the near future to a newer, lower maintenance residence, or to a retirement community that takes care of at least a portion of the maintenance.

Even if your home is currently in good shape now, you will inevitably need to make upgrades and repairs in the future.  Are you willing to do the ongoing upkeep, especially if it means hiring someone to do work that you can't do or are no longer able to do, or investing significant amounts of money?  That will be what is needed to keep your home comfortable and safe.

We’ve seen over the years that one of the real keys to staying at home is finding a handyman (or woman) for the small jobs.  Older people who have someone to do the little things like replacing the light bulbs in a high ceiling or cleaning out the gutters have a sense of ease about their home.  Unfortunately, a good handyman can be hard to find.

3.     Will you have access to services if you can no longer drive? 

How far is your current home from essential services--the grocery store, your doctor’s and dentist’s office and other vital services?  We would like to think that we will be able to drive forever, but that is usually not going to happen.  Are there alternatives to driving where you live?  In some ways, being in a city with good public transportation seems to be ideal, although there may come a time when you can no longer safely get on or off of a bus or train.  Many communities have transportation for Seniors, although most often it is not nearly as convenient as driving oneself. 

Looking through Our Future Lens

We plan to continue to live independently, that is, we do not plan to go to a retirement community or skilled nursing facility.  What we know from our work in those settings is that the same services and even nursing care can be provided at home, and that the cost is actually similar.  In order to carry out this plan, we will make one more move, this time to a somewhat smaller home that is all on one floor with handicapped capabilities, and that is somewhat near one of our adult children.  When one of us needs care, the other will supervise the services provided in the home.  Later, the children will take over the supervision for the remaining parent. 

It may seem cold or harsh to consider all of the possibilities, but by facing them squarely now, making provisions for an optimal living situation, and making our wishes clearly known to our children, it increases the likelihood that we can carry out our plan to live independently.  Without this advance planning, decisions will have to be made during a crisis, when the choices are often fewer, and when emotions are running high. 

A Final Note

One last note about public transportation.  We have spent a lot of time in Sweden over the past 25 years because of Steve’s work there.  One thing we have noticed is there are always a lot of older people out and about.  One reason is the busses.  When a bus comes to a stop, it does a little curtsy, lowering gently to curb level so there is no big step to climb up to board.  A person with a walker or a wheel chair can also easily roll on.  It’s kind of cool and it does seem to help older persons to get around.  Of course, an extensive bus system helps, too.