Saturday, March 21, 2015

Judy: Another Life Lesson: The Value of Kindness

One of my former clients died recently, which prompted me to think about kindness.  During my working years, I did a fair amount of nursing home consultation.  Often the consultations were focused on residents who were having difficulty adjusting to the regimentation that comes with institutional living.  I believe that no one really wants to end up in a nursing home, but there are times when circumstances dictate that as the safest and best alternative.  Residents that I met with had a variety of problems, but the common denominator was a feeling of loss of control over their environment.  They often complained about the food, about not getting prompt attention from the staff, about having to follow a schedule that they had no say in, about roommates (roommates in nursing homes will be a topic for another post), and about feeling disliked by staff or other residents.  In response, depending on the person's personality, they might respond to the situation by becoming angry, anxious or depressed.  In turn, these negative emotions tended to cause the staff to avoid the resident, reinforcing the person's feelings of isolation, and becoming a vicious cycle.

The gentleman who died recently had led a truly good life, dedicating himself to making the world a better place.  He had a long marriage to a woman that he placed on a pedestal, believing her to be a much better person than he.  Rather than having that lower his self-esteem, he used those feelings to motivate him to strive to improve himself.    When I met him, his wife had already died, and he was in his mid-nineties. They had four children, and he was extremely proud of all of them, and while they lived thousands of miles away, they alternated monthly visits to him.    He lived in a skilled nursing home, where he had turned his room into a comfortable replica of the home he had shared with his wife.  There were family pictures everywhere, and his familiar books surrounded him.  While his body was failing him, his mind remained sharp.

What I immediately noticed was that every member of the staff treated him with love and respect.  They went out of their way to be sure that he had every comfort, and even spent some of their personal time visiting with him.  They had asked me to see him because they wanted him to be able to talk to someone about his losses.  While the loss of his wife and his physical abilities weighed on him, he was not depressed.  Rather, he wanted to review his life and be sure that everything would be in order for his children when his time came.  We met off and on for a few years, and he told me wonderful stories about his life.  He was never the hero in the stories, but he was often the agent for change.  During this time, I never heard a negative word from him about anyone.  When a staff member came into his room to provide care, he unfailingly thanked them sincerely for their help.  He got to know them personally, and asked about their families.  In short, he developed real relationships with them.  As a result, they saw him as a wise elder, whom they could turn to for advice.

The lesson I learned from him was to recognize each person in your life as valuable, to treat each person with respect, and to be as kind to others as you would wish them to be to you.  While I haven't seen him since I retired, I have heard that at the end he was surrounded by family and staff who he treated like family, and that his end was peaceful, as he wanted it.

Tuesday, March 17, 2015

Judy: Lessons My Clients Taught Me

San Francisco, 2013

The decision to retire is a very idiosyncratic one.  I was a private practice clinical psychologist for over 30 years, working with many older adults, so I had the opportunity to learn from them.  One of my earliest clients had absolutely gorgeous skin, so I asked her about it, and she said she had avoided the sun all of her life (and this was in Los Angeles!).  From that time on, I used sunblock and avoided tanning, with good results.

I heard wonderful stories, and learned about life at the turn of the century, during the Roaring Twenties, the Great Depression, and during World War II, both in this country and in Europe.  I always listened carefully because there were life lessons to be learned, and also because the coping mechanisms developed during these times of struggle would usually be the same skills that the individual would be able to use to deal with their current problems.  

The Depression had a profound effect on my parent's generation.  It caused them to be very frugal, and to seek a great deal of financial security.  At times this made it difficult to spend money "frivolously," which included taking a vacation just to enjoy themselves.  They were the first generation to benefit from Social Security and Medicare, and they believed that they had truly earned it, first by their service during the war, and second by their hard work and taxes.   Many more people were affected by mandatory retirement at age 65, which had both positive and negative effects.  If you know you are approaching retirement and you have no choice, you begin thinking about what you will do as that age nears.  My parents, for example, took up golf in mid-life, and it became the social center of their lives when my father retired, and for many years after that.  

Fifty years ago, people expected to "down-size" when they retired because they anticipated living on a "fixed income."  Their lives literally shrank to match their decreased income.  Because they were considered "old," financial planners believed that they would have less energy and less interest in activities.  The mental image I get is of a couple sitting in rocking chairs on a porch watching the world go by.  There have been many changes since then, and while many fewer people have employer-provided pensions, most people have their retirement funds in a variety of investments, some of which are tied to the stock market.  This creates the ability to have some degree of control over one's income stream, which is no longer "fixed."  

In the past twenty years, I have seen "seniors" who look and behave much younger than their predecessors.  They travel extensively, and participate in active endeavors, like going the gym and hiking.  Many of them do have more disposable income, and they seem to feel much more comfortable spending it on themselves.  

Early in my career, I remember a number of clients who told me that they regretted not having traveled with their spouse when they were young and able.  They kept thinking they would do it when the children were grown, when they had retired, when they had "enough" money.  By the time I saw them, they might have lost that spouse, or one of them could no longer travel.  I came home and said to Steve, "We're going to travel when we're young enough to do it.  Period."  He loves traveling, so it really wasn't a hard sell.  And as soon as our youngest left the house and was well-established in college, we started traveling internationally.  We've been to Europe and Asia many times, and have several trips planned in the near future.  No regrets. 

Another thing I learned was that there are so many different unknowns in trying to plan for the future, that it is wise to have fairly short-term goals.  It's impossible to know exactly what will happen with your health and mobility for the next thirty years (which the financial planners seem to think we will have), but it is possible to plan for the next five to ten years.  That seems like a much more manageable and predictable period of time.  

Steve: How My Career Began

Leiden, The Netherlands 2013

I told Judy I was going to do a blog on some recent research on caregiving and she suggested that I write instead about how I got involved in doing research on family caregivers.  This is the area of work that Judy and I are best known for, and so here is the beginning, in three parts.

It Began on the South Side of Chicago

My graduate school mentor at the University of Chicago was the late Robert L. Kahn, one of the pioneers in the clinical psychology of aging.  Unlike most experts at that time, Bob believed that older people could respond positively to treatment, even those suffering from dementia.  He would often say that how we look at a problem determines whether or not we can see a solution.  If we think of dementia as only a medical problem that has no effective treatment, then we will conclude that there is nothing we can do.  But if we view dementia as a bio-psycho-social phenomenon, we can address treatable components of the psychological and social aspects of dementia.  And that means helping family members who are providing care.  We can help them figure out how to best provide care, and make sure they get regular breaks so that they can continue providing care at home, despite high levels of stress.  Care at home when it’s possible is the key—that’s what people want and the alternatives are often (but not always) not very good.  But home care is only possible if the family gets support.

A Small Study on Caregivers’ Burden

After I took a position at University of Southern California in 1975, two other events happened that influenced my work with caregivers.  I had the opportunity to run a small demonstration clinic, the Andrus Older Adult Center, where we trained graduate students and provided clinical services for older adults and their families.  We were located off-campus so that we could reach out to the community.  This was the late 1970s and many of the people who came to us were family members who were caring for someone with dementia.  They would often tell us that they had sought help from other places and were told there was nothing that could be done.  The doctor would say, “It’s chronic brain syndrome,” the term used at the time, “There’s nothing you can do.  You might as well put him in a nursing home.”  Social services were also reluctant to help.   When caregivers came to us, we talked with them and helped them with strategies for managing the day-to-day challenges they were facing.  And with two graduate students, Karen Reever and Julie Bach, I did a study of caregiver burden.  Although this was a small-scale and unsophisticated study by today’s standards, it established a fundamental point, that caregivers’ subjective feelings of burden were not determined by the severity of dementia symptoms, but by how caregivers viewed and adapted to those symptoms and to the help they received from other family members.  This suggested that if we build coping and family resources we could lower burden.

Unintended Consequences of Training Memory

About the same time, I applied for a grant to the National Institute of Mental Health to study the effects of memory training for older people who did not have dementia.  This was the first time Judy and I worked together.  The reviewers liked the study but thought we needed to add another component, memory training for people with dementia.  After all, memory loss is the main problem in dementia, so it made sense to see if training might help reduce those problems.  So we developed a plan for memory training, but we felt that for training to work, we needed to include the family caregivers of the persons with dementia in the groups so they could help the person to implement the strategies at home.  And it worked, sort of.   The training improved memory a bit, but not to what it was before the disease, and this brought home to the caregivers how limited their relative was.  As a result, their depression increased during the several weeks of training.  But they told us something important.  They said the training was not helpful to them, but they really liked getting together with each other.  So we decided to offer an ongoing support group for caregivers of persons with dementia.  It was the first or second group in Los Angeles—depending on who you ask---and helped build interest in the needs of family caregivers. 

Where This Led

Running the support group led us to think about other things caregivers might need. One day Judy and Karen were talking about the burden study and speculated that, since family support seemed helpful in lowering burden, perhaps holding a family meeting could directly build support.  So they began holding family meetings with clients at the clinic, and they did work.  The meetings cleared up misconceptions about dementia and misunderstandings among family members.  At the end, most of the families came up with plans to help the main caregiver and were able to follow through on these plans.

We then did a test of the interventions we had developed, problem-solving strategies for managing dementia, family meetings and support groups.  The results were encouraging.  Considerable research has been done by many other groups throughout the US and Europe since then that has confirmed the value of these approaches.  As Bob Kahn proposed many years ago, we can help persons with dementia by helping caregivers.  And we can help caregivers so the stress does not become overwhelming.  We’ll have a lot more to say about that in future blogs.

By the way, the clinic still exists, led ably by Dr. Bob Knight.  It is now called the Tingstad Older Adult Center, named for a benefactor, Hortense Tingstad, who was a member of that first support group.  You can find it at:

Tuesday, March 10, 2015

Doing the Paperwork for a good end of life

My 89-year-old mother lives with us, and we have had frequent conversations about what she does want and what she does not want to happen at the end of her life.  Like most of us, her fondest hope is that she will simply slip away in her sleep, but we know that doesn't happen very often.  Her own mother had Lewy Body Dementia, and spent about a year in assisted living, and then a specialized memory care facility.  In the end, she fell and broke her hip, and we were talked into surgery.  While she survived the surgery, she never walked again, and she was so far into her dementia that she was never lucid again.  She was sent to a nursing home, where she refused to eat, and while the facility would allow her not to eat, they insisted on fluids, which prolonged her dying to about three weeks.  That was a terrible experience for my mother, and she does not want anything like it to happen to her.

Mom has decided that at her age, she does not want any surgery, or any heroic medical interventions. Luckily she is in very good health, but realistically, there is an expiration date on that.  She has some balance issues, and has had a few falls, so a possible scenario is that she falls and breaks a hip.  She is adamant that she does not want surgery, and at her age, and with her poor balance, it is unlikely that she would ever walk again if that happens.  So what to do?

Then, in January, I read this article in Paula Span's "The New Old Age" Blog in the New York Times (before it was cancelled...) :

It's about an attorney in Massachusetts who is concerned that if he becomes demented, he does not want anything done to prolong his life unnecessarily, including food and drink.  The letters that poured in responding to the article included one by Judy MacDonald Johnston, which referred to her TED talk about the end of life, which you can see here:

In her letter she mentioned that the "good end of life" she was able to achieve for the couple she refers to in her talk only came about because she had "solid gold" caregivers who prevented a surgical intervention right at the end of the woman's life.  In response to that experience, she wanted to share what she had learned about what is necessary to insure that an individual can have the end of life that they choose.  Her ideas can be found at:

After reading the website, I finally realized what we need to do.  We need to update Mom's Advanced Directives, which I downloaded from the Pennsylvania Department of Health website.  While she is calm and clear, she will make her wishes known to her physician as to what she wants.  If she falls, and we think she has fractured her hip, we will go to the Emergency Room to determine whether that is the case.  This is important, because we need to be sure that is what has happened, and in the ER they can give her pain medication.  Then, with her physician's agreement (and perhaps intervention) we will start her on hospice and return home.

Today, we met with Mom's physician and presented our plan.  He works several mornings a week at a local nursing home, so he was 100% behind our plan.  He and his nurse signed the Advanced Directives, and made a copy, and he even reminded us to be sure that there are copies in several locations.

While this sounds simple, there are several areas of controversy.  In the ER, it is most likely that when a fractured hip is diagnosed, an orthopedic surgeon will be called, and there will be strong pressure to perform the surgery.  The usual argument is that she will be in too much pain otherwise.  That is the reason for ordering hospice right away, since they are the ones who have the appropriate pain relief medications and who can help put in place a team to care for her at home.  Second, in the ER, they tend to disregard Living Wills.  However, the packet that we have put together meets all of the criteria to require them to pay attention to her desire not to have surgery.

And what if all of this happens when I am out of town?

This leads us to the second part of our plan.  We are retaining a Geriatric Care Manager* who will be monitoring Mom whenever I am not available.  She will have her own copy of the Living Will and Health Care Power of Attorney and she is supportive of our plan.  In fact, we have named her as the third person who has the power to enforce the Advanced Directives, in the event that my sister and I are not available.

While doing the paperwork has been somewhat uncomfortable, both for my mother and myself, we have agreed that now that it is done, we never have to discuss it again.  And we can go back to hoping that she will just slip away.


*I will do a post on Geriatric Care Managers in the future.

Friday, March 6, 2015

Worried About Getting Alzheimer's Disease?

This is one of Steve's "reflection" photos from a temple in Kyoto.

Everyone thinks about it from time to time.  And it doesn’t help that there is a constant media frenzy to report the latest findings about what might cause or prevent Alzheimer’s.  Unfortunately, much of this information is flawed, the result of poor science or a chance finding.  This is something we want to write about, and maybe occasionally rant.
So we approached the headline of the week:  “An Upside to Gout: It May Offer Alzheimer’s Protection,” from The New York Times ( ) with skepticism.  We read the full published study in the medical journal, Annals of the Rheumatic Diseases, and found it was actually a good and potentially useful article that showed that fewer people with gout developed Alzheimer's over a 10 year period than a control group.   We thought we would talk about what’s good in this study, compared to the usual stuff, to help you in separating the signal from the noise in the media and in these kinds of risk studies.

So what did they do right?

Most studies of this sort that look for risk factors for a disease take a big sample of people and let the computer search through all possible risk factors in the data set.  This shotgun approach increases the likelihood that any findings will be due to chance, and over the years many improbable things have been reported as causing Alzheimer’s disease.

In this study, the researchers had good reasons from the start to look at gout.  Uric acid, which the body overproduces in gout, has anti-oxidant properties that may protect certain types of neurons in the brain from damage.  Damage to these neurons has specifically been implicated in Alzhiemer’s disease and Parkinson’s diseae.  So the idea behind the study was to see if high levels of uric acid might lower risk of Alzheimer’s disease.

Another strength of the study was that instead of comparing gout patients to everyone else in the sample, which could introduce a variety of factors that might account for differences in rates of Alzheimer’s disease, the researchers created a matched control group.  Basically, they found people in the larger study that they drew their sample from who were similar to the gout patients on some key characteristics such as age, gender and a couple other things, and then they statistically controlled for other possible confounding factors such as other illnesses and medications.  This gave the study a nice comparison between people who had gout and people who differed mainly in not having gout.

The main drawback of the study is that they relied on diagnoses of Alzheimer’s disease made by general practitioners, which can be unreliable.  But they did something quite clever.  They conducted what they called a “negative exposure control,” that is, they took people with osteoarthritis and compared their rates of AD over time to a matched control group and found osteoarthritis had no effect on risk of Alzheimer’s disease.  

So what’s the take-home message?  It’s that uric acid or related substances may be protective against Alzheimer’s disease or slow its development.  But it’s too early to rush out and try supplements.  Giving people gout is obviously not a good treatment option.  Other antioxidants have been studied extensively in the past without any clear-cut evidence that they are effective in preventing or treating Alzheimer’s disease.  In time, this may be just another false lead in the search for causes and treatment of Alzheimer's.  For now, the finding is intriguing.

A Little Housekeeping

"From Japan, where they love both donuts and shaved ice."

A couple of quick thoughts.  Steve is a wonderful photographer, so we're going to put a picture with each post, just to brighten things up.

We also have a button that will translate the posts into a variety of foreign languages, since our experience is that people from all over the world seem to be able to find blogs.  There is also a place to put your e-mail so that whenever there is a new post you will automatically get an e-mail.

Let us know if you have any problems with these buttons.

Wednesday, March 4, 2015

We're All Growing Older

We are of the baby boomer generation, those who believed that you couldn't trust anyone over thirty.  To our great surprise, we find ourselves at the threshold of old age.  Our life's work has been spent studying and working with older adults, and we've had the privilege of benefitting from their wisdom.  Consequently, now that we find ourselves having to make decisions about our future, it is surprisingly easy.  We have huge funds of experience to draw on that allow us to fairly easily and gracefully decide what we want in old age.  The baby boomers who will follow us for the next few decades can utilize our experience to their advantage.

We will not shy away from difficult topics, such as euthanasia or challenging your physician to personalize your medical care.  While we will provide reference to valid research, we will also present our opinions based on our years of experience.  We see this blog as a way to empower others to take charge of their future.  We are still an ageist society that sees older adults as unattractive and undesirable.  That's certainly not how we baby boomers want to picture ourselves.

This may cause people to avoid or postpone thinking about important issues, such as retirement and where you might want to live when you are less able to do things, either physically or mentally.  What we have always said in our clinical work is that if you fail to make these decisions, they will be made in times of crisis, when the options are much more limited.  We can demystify the future, which can help people make the best choices for themselves.  Our goal is for people to look forward to and enjoy old age, rather than seeing it as something to be feared or dreaded.

Who are we and why should you want to hear what we have to say?

Steven H. Zarit, Ph.D., is Distinguished Professor of Human Development and Family Studies at the Pennsylvania State University.  He has been involved in research on family caregiving for over three decades, designing the internationally accepted standard for measuring caregiver burden, and developing treatment programs for caregivers.  

Judy M. Zarit, Ph.D., is a retired clinical psychologist who specialized in the assessment and treatment of older adults for over thirty years.  While she was in private practice, she saw her patients in every possible setting:  in the office, at home, in assisted living, in skilled nursing homes, in specialized Alzheimer units, and in the hospital.

We plan to use this space to address a variety of issues of interest, but also to comment on our own experience as we go through the retirement process.  And we welcome any questions you have about related topics.