Steve: First Day of Class: Can nursing homes do more?

Jönköping University 2016

It was a marvelous day today in Jönköping, Sweden, with sun and a deep blue sky. After a morning of discussions of old age care in Sweden, we went on a visit to the first of 3 nursing homes we will see during the course.

The building was old, built on the model of a hospital, and not like more modern designs that are homelike and encourage activity and interactions among residents. On the plus side, residents had their own rooms with their own bathroom. None of the lunacy of roommates.  Really, if you are old and frail and maybe have a bit of difficulty remembering, would you want to share your room with a complete stranger? The rooms were filled with residents' own furniture.   Importantly, residents signed leases to their apartment, a small matter perhaps, but one that calls attention to the staff about how they should be treated. As the director told us, she wants the staff to see themselves as going into someone's home, and not thinking, "It's my workplace."

The director stressed the importance of giving care that "helps people keep living their life the way they were."  She talked about new initiatives in Sweden to learn residents' values and to plan care and activities around these values.  And not to do the expedient thing.  This can be hard when what the person wants to do involves safety and hygiene, for example, to refuse repeatedly to shower.  "We have ethical discussions and reflections" to find a way to solve these kinds of problems and give care that supports the person's values. When have you ever met a nursing home director who has ethical discussions with her staff?

American nursing homes are also emphasizing person-centered care that respects the person's own preferences and values. Some places like the Abramson Center outside of Philadelphia get it right. In many places, however, they’re just empty words. Here, it's the law and everyone is expected to find a way.

Steve: Retirement Becomes More Real

Lake Vättern  2011

This week I had a couple of milestones that moved me closer to full retirement .  My research lab held its last full meeting.  Three of my remaining students graduated, Erin McDermott, a talented undergraduate honors student, and two terrific doctoral students, Yin Liu and Courtney Polenick. There was a moment when I felt that retiring was like diving into a pool and not knowing if there was water in it or not. But that passed as I thought of all the plans Judy and I have for the next several months.

Another ending is that for the last time I am taking a class to Sweden. Beginning in 1995 I have taken classes there 8 previous times to learn about care of older people in Sweden as well as about other social and family policies. The class has been an eye-opening experience for everyone. They see that care does not have to be mediocre or worse, but instead people can live their lives with dignity, respect and good quality of care.   If you are interested, I thought I would provide updates during the next 2 weeks of the highlights of the class.

Although this is the last time I will be teaching the class, there are plans to continue it. Lesley Ross, a colleague of mine at Penn State, is co-teaching with me this time so she can offer it in the future. And we will be joined in Sweden by Beth Fauth, who is bringing a class from Utah State, where she teaches. She took the class from me in 2001 and subsequently did her dissertation using Swedish data. This is the second time we have done the class together and she also plans to continue it.

To see where we will be, look up Jönköping, Sweden. We travel to Stockholm next week.

Sensible Discussions of Aging and Alzheimer's Disease

Raspberry souffle 2007 at La Pichoun in France

We want to call your attention to three recent articles, all in The New York Times, which do a much better job than usual in getting things right about Aging and Alzheimer’s Disease.  Each article has information that we found useful.  We provide links to the article at the end of the blog.

The first article, A Life-Changing Diagnosis, follows one woman, Geri Taylor, from the moments in 2012 when she first noticed changes that could no longer be explained as normal memory problems through the journey she and her husband have made to understand and manage the symptoms of Alzheimer’s Disease.  What stands out about the article is that we hear Geri’s voice, what she sees and thinks. We see her struggles to still lead a meaningful life and her husband’s difficulties in accepting her illness. Like Geri, many people with Alzheimer’s Disease retain awareness of their cognitive problems and can tell us how they want to lead their lives.  As with other non-fiction accounts, this article has honesty and depth.  We see through Geri’s eyes and understand her struggles.

Along with the original publication of that article, the Times included a piece by Pam Belluck inauspiciously titled “What Is Alzheimer’s Disease.”  Most articles that we’ve read simply rehash the usual bland information and misinformation that abounds in the media.  But using clear, precise information, this article gets it right.  Among the topics covered are the difference between normal aging and Alzheimer’s, how Alzheimer’s is diagnosed, what causes Alzheimer’s and whether there are any medications for Alzheimer’s.    We were particularly struck with the succinct and accurate way Ms. Belluck addressed the question of whether Alzheimer’s is preventable.  In contrast to the usual exaggeration that envelopes this question in the media and the scientific literature, Ms. Belluck sticks with the facts.  She says that activities that “keep us healthy and engaged” have the possibility to delay the onset of dementia, at least for some time.  It’s a false hope and poor science to maintain that regimens of diet, physical exercise or cognitive exercise can actually prevent Alzheimer’s or the other forms of dementia, but by doing the things that promote brain health, we may be able, in Ms. Belluck’s words, to “keep dementia at bay.”

Ms. Belluck is a health and science writer at the Times, and shared a 2015 Pulitzer prize with colleagues for reporting on the Ebola epidemic.

The third piece, called “Better Aging Through Practice, Practice, Practice” picks up a similar theme.  The author, Gerald Marzorati, a former editor of the New York Times Magazine, gets past all the hype about staying forever young by staying active, and instead identifies an approach that makes a lot of sense and that reflects what the best research tells us.   Mr. Marzorati correctly identifies that it is not just staying active that is important but that how we stay active matters.  He proposes that we choose a demanding skill that we want to master and that takes considerable time and effort to get good at.  He took up playing tennis when he was in his mid-50s, learning the basic skills and working to improve through lessons and practice.  Unlike most of us who pick up a racket or golf club in a casual way, or start a hobby, Mr. Marzorati says we need to make “a disciplined effort at improvement.”  That means regularly working with coaches or experts in the skill we want to master and practicing that skill so that we work toward higher levels. This is what research tells us works best—expanding our physical and mental skills and staying engaged.  Earlier in life we might have hoped to rise to the pinnacle of our sport or avocation or to be able to compete at an elite level.  Now the focus is on the improvement itself rather than comparing oneself to others who excel at the activity we are working on.

We have been thinking in a similar way about the importance of building skills, but not with the crystal clear focus that Mr. Marzorati has.  The article has inspired us to examine our future choices more carefully and to think about our hobbies in a different way.   As some of you know, Judy is an excellent baker and cook, and she enjoys trying new and challenging recipes, and I am the resident grill-master.  We have taken some classes at Zingerman’s deli in Ann Arbor and in France, including one at Julia Child’s country home near Cannes.  We always enjoy learning new things, but the idea of challenging ourselves to improve was not the point.  Now we have a new perspective, so Judy found a class in knife skills at the CIA (Not that CIA, but the Culinary Institute of America, in Hyde Park), and Steve is going to take a grilling class at the same time.  While taking cooking classes is not really new and different, our focus on gaining skills and practicing until perfect, is a departure.

You’ll all benefit from this, too, if you come over for a meal.  Just don’t startle Judy when she has a knife in her hand.

A Life-Changing Diagnosis

http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?ref=health

What Is Alzheimer’s Disease?

http://www.nytimes.com/2016/05/02/science/what-is-alzheimers-disease.html?ref=health

Better Aging Through Practice, Practice, Practice

http://www.nytimes.com/2016/05/01/opinion/better-aging-through-practice-practice-practice.html?emc=eta1&_r=0

It’s Spring, sort of, and that means baseball

The baseball season just started, as usual two weeks before the weather turns warm in the Northeast and Midwest.  But it’s here.  It’s a time to feel the optimism of the season when we can dream that our favorite team might make it to the top this year, or at least get our hopes up with a nice run to the playoffs. 

The opening of baseball season is also a wonderful opportunity for all of us to lower our stress levels.  Instead of spending all that time reading about the primaries or watching the news, you can do what I plan to do—read the sports section and watch a game now and then.  I am sure there is some research somewhere that proves that watching baseball compared to the news extends life by lowering stress and also decreases the risk of Alzheimer’s.  It’s as likely as some of the other claims in the media, and I think we would all be better offer spending more time worrying about who is the starting first baseman on our favorite team and less time worrying about who is first in the polls.

Baseball plays a role in our retirement plans.  This summer, we start our quest—well, my quest with Judy supporting it—to visit all the major league ballparks I have not been to.  I have been to 13 current ballparks and so have 17 to go.  We will be seeing games in San Diego, San Francisco and Seattle this summer—all nice places to visit.  It is important to have goals.

The photo above is from game 2 of the 2005 American League championship season.  You may recognize the tall left hander in the photo—Barak Obama, then an Illinois State Senator and White Sox fan.  He threw out the first pitch that day and the Sox went on to win the next 8 games and the first World Series in Chicago since 1917.  It was a great moment for me, one I didn’t think would actually ever happen. 

This year there is considerable excitement about the Cubs’ chances.  I do hope for the sake of all my relatives and friends who are Cubs fans that their time will come soon, too.  Of course, I can’t help myself and hope that the Cubs and Sox might actually meet in the World Series, and the outcome will be the same as when they last met – that was 1906 for all of you who are history-impaired – where the team that was a heavy underdog managed to win it all.  So good luck to all you Cubs fans, and to everyone else, baseball trumps politics.

Thinking About What Comes Next

Courtesy of Lauren Bangerter

I have some dear friends who are struggling with planning for the future, and as I was talking with them, I realized that their decision was not terribly different from our own decisions.  As we've written previously, what most of us want is to remain independent and autonomous as long as possible.  We prefer not to think about the reality that we may actually decline before the end, but that is the usual course of events.  My friends are already dealing with significant health issues, and they do not have children or relatives whom they would trust to make decisions for them, should they be unable to do so, which complicates things.  This has drawn them towards a CCRC or Continuing Care Retirement Community, the type of campus that has independent living, assisted living and skilled nursing, so that whatever the future holds, they won't have to move again.  It was more comfortable to think about it as something that would happen "one day," off in the far distant future.  But they put their name on a list, and within the next year their place will become available, which is what has precipitated some real soul-searching.

My friends created a home for themselves that they have outfitted exactly to suit their taste.  They like to cook, so have built a chef's kitchen with top-of-the-line appliances.  They have comfortable living spaces to accommodate their interests and avocations.  But the house has several stories, and is not really adaptable should one of them become physically disabled.  Even if the house could be modified, they cannot imagine how they would get the kind of care they might need in the future.  It would involve finding a trusted professional care manager (like the one I mentioned we have for my mother), and being able to find helpers as their needs increased.  More importantly, they would have to find someone they really trust to make decisions should one or both of them become unable to make decisions for themselves.  This is really the heart of the matter.  In the worst case scenario, one of the couple dies and the remaining spouse becomes cognitively impaired.  Who will look out for that person, both physically and financially?  Who will be sure that their advanced directives are carried out?  Who will be sure that they are not exploited by the very people they are trusting to help them?

Unfortunately, we have seen too many instances of vulnerable older people who have been exploited by the very people they have trusted to help them.  It can be a family member, a paid helper, even someone who was supposed to be helping them with their finances.  It has been our experience that it is far too easy to find an attorney to re-write a will even when the individual is in the later stages of dementia.  We have also seen cases of elder abuse and neglect, especially when someone does not have a family actively supervising care.

At the other extreme, when a couple with financial resources commits to a CCRC, they may contractually cede some of their rights.  For example, when they enter the community they are usually capable of living independently, and may select a lovely apartment.  But as time goes by, one of the couple becomes more ill and requires more care.  While that couple might prefer to hire more help so that they may stay in the apartment, the facility may have limits on how much care they can have before they are required to move to assisted living or skilled nursing.  In truth, there's no reason that they should have to move provided that sufficient help can be brought in.  And, usually when the first spouse becomes ill, that is what happens.  However, once there is only one remaining spouse, it becomes more difficult to resist the urging of the facility to move to a different level of care.  Unfortunately, it is to the financial benefit of the institution to move people to higher levels of care, because those are the more expensive beds.  When a skilled nursing bed becomes available, they immediately look at those in assisted living who require the most care, and begin putting pressure on the resident and their family to move them.  Often the staff rationalize it to themselves, saying that the person will be safer and better taken care of.  But to individuals in that situation, it is a terrible quandary.  They want to believe that the institution has their best interest at heart, in which case they begin to think of themselves as much more vulnerable and frail.  And they realize that in most important ways they are dependent on the institutional caregivers, so they don't want to antagonize them.  The end result of these moves to higher and higher levels of care may be excess disability and a decreased quality of life.  Many of the patients Judy saw in her nursing home consultation were these very patients.  There are a wide range of CCRCs, and some actually work very hard to maintain their residents' independence, but it is important to consider this when looking at such a community.

The hard truth is that it is impossible to predict what the course of the later years of your life will be.
It is important to do as much planning as possible to ensure that the things that are most important to you will be likely to occur.  We feel fortunate that we have children who we trust to help us when the times comes, just as we are serving that function with my mother.  But many other people are not as fortunate.

So here is what I am encouraging my friends to do.  I want them to look at a variety of CCRCs to be sure that they are in one that will give them the most flexibility.  CCRCs usually require a substantial financial commitment, and they have varying restrictions should it turn out not to be a successful living situation.  I am encouraging them to consult with an attorney about the contract with the CCRC to see if they can add language that would address the issues that are most important to them, such as being able to stay in their apartment and bring in whatever help is necessary.  While they have consulted an attorney to act in their behalf should both of them become incapacitated, I want them to find someone, (and since we have eliminated family members) it may be a trusted friend or a professional Geriatric Care Manager, who will have the ability to oversee the attorney should this provision come in to play.

These are big, important decisions, and the money that they have saved all their lives is at stake, so taking a little extra time and consulting more people, is definitely worth it.

Curiously, when Steve and I were discussing our friend's dilemma, it reaffirmed what we have said before.  We are very thankful to have our good health and the good relationships we have with our children.  And we agreed that we are not interested in being in a CCRC.  Our plan is to live independently, bringing in whatever care is necessary for the first spouse whose health fails, and then to rely on our children in taking the next steps.  When it happens and who goes first will determine what those next steps are, but we have clearly laid out our wishes in advance directives and discussed them with our children.  And we do realize how very fortunate we are.

Peru!

The trip turned out to be every bit as good as we had hoped, as you can see from the photo above.  We left State College early on a Thursday morning, and by 9:00pm we were in Lima, Peru.  There's no time change, so no jet-lag, a definite plus.  Still, it was a long day, so when we collected our bags, we were pleased to see someone from Road Scholars carrying a sign with our name on it.  He put us in a taxi and went with us to the hotel in Mira Flores, the upscale part of Lima overlooking the Pacific Ocean.  When we arrived, we met our tour leader, nicknamed "Paco" and went off to bed.  The next day we met our fellow travelers, two Canadian couples, a couple from San Francisco, and a widow from North Carolina, all experienced travelers and all ready to learn about Peru.  We had several lectures about the geography, economy and politics of Peru, and did some sight-seeing in Lima.  Throughout the trip there was a mixture of lectures by knowledgeable professionals and tour guides, as well as meetings with local people who demonstrated their skills.

The tour followed a logical progression historically, beginning on the north coast of Peru around Chiclayo, where there were pyramids and ruins that date back thousands of years built by the Chavin and Moche peoples.  These temples have been buried in sand until recently, and are currently being excavated, although as soon as they are exposed to the elements they become much more fragile and subject to fading from the sun.  Next we traveled to the Trujillo area, where we saw the Temples of the Sun and Moon.  Most of these temples are thought to be burial grounds, and they have found many remains, usually with large amounts of pottery around them.  They have also found large towns, like Chan Chan, where tens of thousands of people once lived.

Next we flew to the Cusco and went by coach to the Sacred Valley, and the photo below shows the view from the valley towards the glaciers.  The Andes are quite steep, and for those intrepid enough to hike to Machu Picchu on the Inca Trail (a three day trek) the elevations vary from 9000 feet to 15,000 ft and back again.

The scenery was simply spectacular, and Steve had a field day taking almost 1000 photos.  He even became the official photographer for the group, and shared the best ones with everyone else.

Machu Picchu was, of course, the highlight of the trip.  There is something magical about standing in the midst of a community like that, and imagining what life could have been like.  The Inca were really only in power for a fairly brief time, but they had evolved their way of life from those who came before.  Their building style is still a marvel, and despite Peru being in the ring of fire (meaning that there are periodic violent earthquakes), they were able to design buildings that withstood the tremors.  When the Spanish came and destroyed the Incan temples, they would build European-style buildings on the Incan foundations, and often after an earthquake, only the Incan part would be left.

This trip gave us some valuable insights.  First, it is energizing to go somewhere completely new and different, in part because it forces you to learn new things.  The more we learned about the history of Peru, the more we wanted to know.  The people were warm and friendly, and they very much want tourists to come to their country and learn about their history.  Second, we met the challenge of the trip to a developing country with high elevations well.  We opted not to take the anti-malarial medication because we weren't really going to areas where it would be a problem (e.g. the Amazon).  We did take the altitude medication (diamox), which was very helpful and we would recommend it.  They kept offering us coca tea which they say helps, but we found it rather unpleasant tasting, and we weren't sure it really helped.  There was one couple on our trip who took prophylactic Pepto-bismal for fear of getting an intestinal infection, but we found that by vigilantly using bottled water for everything, including toothbrushing, we were fine.  You have to use a combination of common sense and self-knowledge to figure these things out.*  Third, by choosing to go on an organized tour to Machu Picchu, we had the information and support we needed to manage the physical challenges.  When Judy felt unsteady, Paco was right there to provide the support she needed to get to the top with everyone else.

We're glad we took our own advice and broadened our traveling experiences.  Now we're busy planning more adventures!

*For a discussion of travel medications, Jane Brody of the NYT, had a nice article recently: "Staying healthy while traveling the globe,"February 22, 2016, New York Times.