Wednesday, September 18, 2019

Celebrating Our 39th Anniversary in Paris



We have just come back from Europe, where we celebrated our 39thwedding anniversary.   The trip came about because Steve had been invited to speak at a conference, the International Psychogeriatric Association, which was held in Santiago de Compostela in Spain.  Santiago de Compostela turned out to be a lovely town.  For over a thousand years, the town has been the destination of a great pilgrimage to visit relics of one of the apostles, St. James.  The relics are housed in a magnificent cathedral.  Pilgrims from all over Europe walk to Santiago de Compostela to visit the relics.

The conference was quite interesting.  Of particular note was the importance several speakers placed on providing high quality medical and social care for persons with dementia.  That sounds obvious, yet often the obvious medical problems get overlooked, partly because persons with dementia sometimes can’t report problems and partly because medical personnel are not trained to look for problems.  As a result, undiagnosed health problems and untreated pain diminish the person’s quality of life and may compromise further the person’s cognitive ability.  Speakers also discussed how social care and the quality of the environment can likewise make a difference for people with dementia.

Since we were going to be in Europe, we decided to stay longer and celebrate our anniversary in Paris. We have been to Paris many times, but we still enjoy going there.   We have seen the major tourist sites, and so we don’t feel pressure to cram in visits to the Louvre or to ride up to the top of the Eiffel Town.  Instead, we have a leisurely pace.  We may seek out a small museum we have not been to before, or just walk through an interesting neighborhood.  Judy keeps a list of restaurants in Paris that she reads about, and we visit new places as well as old favorites.  

We have found a hotel that we like that is down the block from our favorite bakery, Gontran Cherrier, where we buy breakfast pastries and a half baguette for later in the day.  The hotel is in a neighborhood that is off the main tourist route and it looks like a movie set of Paris 75 or 100 years ago. The narrow streets are filled with cafes and shops.  In the morning, we see shopkeepers opening up. The fish monger has a prominent location at a street corner, and each morning except Monday starts setting out fish on ice in front of the store.  The same routine is going on at other stores.  You can get almost anything you might need.  Beginning around 4 pm, the cafes begin to fill up with local people, having a drink and sometimes staying for dinner.  People are out walking as well, and children can ride on a merry-go-round in the middle of the neighborhood.

You might ask, why make a big deal on a 39thanniversary?  Why not wait a year to the 40thanniversary and do a big trip then?  First, of course, was the opportunity.  We were in Europe anyway.  But more importantly, what we have learned about aging is to take advantage of opportunities now, because you never know what might happen in the next year.  This is not a morbid thought.  Rather, we are being practical and know that at some point we won’t be able to make this kind of trip.  We have known a lot of older people who say they regret not having traveled to some place special when they still could, but we have never met anyone who said they regretted having made a trip or pursued some other opportunity to do something they always wanted to do. 

While we were in Paris, we had time to talk about the places we love to visit and things we like to do, and we hit on an idea that is perfect for our 40th.  Tune in next year to find out what it is.

Tuesday, September 17, 2019

The Liberation Museum in Paris

The bunker

We grew up in the shadow of World War II. When we first came to Paris many years ago, the scars of the war including the ruins of bombed out buildings, were still present. We've read many books and seen lots of movies about the war. Some of those stories were about the heroic efforts of the French resistance.  So we had an idea what it was like during the war in France and in Paris.

On our recent visit to Paris, we went to the Musee de la Liberation de Paris (The Liberation Museum of Paris), which had recently moved to a new building.  The way this museum was designed, we felt that we were stepping back in time as we followed a timeline from World War I onward.  The losses in the first World War were devastating to France, which we had seen evidenced in the memorials in every little town listing the fallen in both wars.  Whole families were erased in that first war, and the French had little appetite for another war so soon.  They slid into denial when Hitler first started his advances, and they thought it would be possible to reach an accommodation that would avoid a war.  As a result, France was late to rearm and prepare for war. After the Germans occupied France, some people actively supported Nazi ideas and worked with the occupying forces.  Other people remained passive, hoping just to get by.  Many others, however, realized how horrible the situation was and became part of the resistance. 

The museum told the story of the war, occupation, and liberation through the lives of two individuals, Jean Moulin and Philippe de Hauteclocque, who used the alias “Leclerc.”  By focusing on two minor figures not everyone knows, the museum brought the story down to a personal level. Although they came from very different backgrounds and held different political beliefs, both Moulin and Leclerc made the decision not to go along with the occupation, but to resist. Moulin had been mayor of a Paris suburb when France fell to the Germans in 1940. He quickly became active in the resistance and was captured and killed by German forces in 1943.  Leclerc was an officer in the army who fled the country after the occupation, and joined the Free French forces in Africa. In 1944, he led the French troops that liberated Paris. 

The museum also highlighted stories of ordinary people and what they did during that time. 
When you read histories or historical novels of that era, it's tempting to imagine that you would do something heroic, out of a sense of commitment and honor.  While we were struck by the heroism of these individuals, it was also apparent that their lives were threatened on a daily basis, so in a sense they had nothing to lose to take a risk. They could die anyway, even if they did nothing to oppose the occupation. You’d like to imagine you’d be the one who would be the hero, but if you’re not tested you never know. 

The museum had photographs, letters, newspapers and even some films clips.  One film showed a woman during the fight to liberate Paris.  She was young, perhaps 21 or 22 years old, and was fearless. During a firefight, she saw a German soldier go down in the street.  She rushed out and wrestled his rifle and other weapons away from him. We don’t know what happened to her or whether she even survived the war. But Judy, especially, was drawn to her because she epitomized the fearlessness that she hoped she might have had in that situation.

The new museum building has been constructed over a bunker that had served as the hub of resistance activities in the days leading up to the liberation. The Nazis knew there was an air raid shelter there. They didn’t know the resistance had dug out a bunker underneath it  and made it a control center for resistance activities across Paris.  As we stood In the bunker, it was possible to imagine the activities that took place there, and the incredible tension they lived under as they fought for their lives and the freedom of their country.  We came away awed and inspired by the courage they showed in what had to have seemed like a hopeless situation. 

Sunday, August 4, 2019

Would You Want to Know If You Will Develop Alzheimer’s Disease?



            Identifying early markers of Alzheimer’s disease has long been a goal of research.  Some new developments suggest that it may be possible soon to identify whether someone who is not currently symptomatic is beginning to accumulate clumps of amyloid in the brain.  Would you want to know?
            Paula Span, one of the best writers about aging issues, has an excellent column this week about this issue.  PET scans can identify with some accuracy accumulations of amyloid in the brain.  These scans are expensive, $5000 to $7000 each according to Span, and are not covered by insurance, including Medicare. The Alzheimer’s Association has long advocated that Medicare cover PET scans, but Medicare will not pay for tests that do not lead to therapeutic interventions.  Besides PET scans, a recent article reported that a blood test that examined the ratio of two types of amyloid could fairly accurately predict amyloid in the brain.  It has been possible for a while to test for the genetic marker for at least some cases of late onset Alzheimer’s, the APO E4 allele.  
            But would you want to know?  And what difference would it make for you?
            Of course, if there were a treatment that would slow or entirely prevent Alzheimer’s, it would make sense to know.  But there is no treatment.  
            Would you change your lifestyle, exercising more and eating a healthier diet?  This is something we should all do anyway, because it will help us maintain health and better functioning longer.  Would knowing you were going to get Alzheimer’s disease make a difference?  A recent study suggests that lifestyle offers some protection for people with genetic risk (Lourida et al., 2019).  The difference is small, but encouraging. But maybe some people would go the other direction—if you are going to get Alzheimer’s, you might as well enjoy life to the max now.  To hell with diet and exercise.  
            Span discusses whether knowing one’s risk might lead to developing an advanced care plan, including advance directives and someone you trust to manage your estate if you are no longer capable.  Again, this is something we all should do anyway. 
            Would knowing your risk lead you to make different life decisions?  Would you stop putting off traveling to places you have always wanted to visit or doing things you have always wanted to do?  Again, it would be a good thing to start doing those things anyway.  Judy and I have gotten good at seizing opportunities.  We both feel good now, but we don’t know how long that will be the case.  We have also gotten past the bucket list approach.  We don’t want to go to every exotic place, but instead, we travel to places that call to us in one way or another.  Frankly, the call often is from the food, or to visit with friends.  Would you rather worry about amyloid or search Paris for the best croissant?
            There is one other issue about wanting to know.  Not everyone with accumulations of amyloid develops dementia, and some types of dementia may not involve amyloid at all.    So these tests may indicate increased risk, but not everyone will get the disease.  
            We think it’s important to have a plan.  Rather than worrying about what might happen—something bad will eventually happen—we try to use the opportunity we have to do things that we value and enjoy.  

For Paul Span’s article…

Lourida, I. et al. (2019). Association of lifestyle and genetic risk with incidence of dementia.  JAMA.  doi: 10.1001/jama.2019.9879.

Thursday, August 1, 2019

Getting Dementia Care Right

The view from our bedroom window

            Dementia care is challenging, especially in a group living situation.  The cognitive, behavioral and emotional problems that can occur with dementia make it difficult to reason with persons with dementia, or to get them to follow a daily routine.  They may be fearful, and may not understand why they are in this place and not at home. They can become upset and even strike out.  Despite rhetoric about quality care, most dementia facilities do not rise above mediocrity—providing basic care, but not much else.  They fall back on the excuse that you can’t do much with these people because of their cognitive and behavioral difficulties.  
            
Woodside Place is the exception.  They get care right, and they make it seem natural and expected to provide a high-quality environment and program.

Woodside Place is a dementia care assisted living facility located on the Oakmont campus of Presbyterian SeniorCare in Oakmont, PA.  It was founded about 25 years ago, and was modeled on a facility in England that was also called Woodside Place.  I have visited Woodside Place in Oakmont regularly over the years, often taking colleagues from out of the area there, as well as Penn State students. I visited last week with Yin Liu, a former graduate student of mine now on the faculty at Utah State University.

Yin and I were not disappointed.  We saw care done well in lots of small and large ways.

Woodside Place was built as a dementia care facility with the design suited to persons with memory deficits.  The facility has three residential wings, a large common area with rooms for activities and outdoor gardens, which can be accessed at several points.  Each wing is color-coded to help residents find their own rooms.  The wings have a small kitchen for residents to get snacks, and a dining area. Residents can eat in any dining area in the facility or in their room.  Staff do not rotate around units as is the case in many facilities, but they stay with one unit, so they get to know the residents and the residents get to know them.  

The common areas are spacious.  There are places to sit or gather.  The common areas are quiet—no noise from loud TVs, no intercom or phones ringing.  No loud conversations among staff.  An activity was going on in the big activities room, using a large screen to conduct a cognitive stimulation exercise.  The activity was lively but the noise did not spill over to other areas. 

Residents have their own rooms, an important feature of any care facility but particularly important for persons with dementia.  These rooms are their apartments, and unlike most care facilities, they can close and lock the door.  This gives residents a sense of security—staff or other residents do not invade their space, and they can feel safe.  Regulations require checking on residents during the night, so rather than open the door and waking them up, rooms have a Dutch door.  Staff can unlock the top, look in, and make sure everything is all right. During the day residents sometimes open the top part of the door.  They can see what’s going on around them and have conversations with people who are walking by, but also keep the half door closed to give them their private space.

The biggest challenge in care is how facilities handle behavior problems. We asked the two staff people who were showing us around how they managed these problems.  Their answer revealed their expertise.  They said that first they had to get to know new residents, what their lives were like, what they liked to do.  Answers to why problems occur and to their solution can come out of knowing the person. If the problem persists, they will track when it occurs to determine what might be setting it off.  Then they use trial and error to see what may help. And if one thing doesn’t help, they try something else, until they find a solution.  This is the optimal approach in dementia care, with the underlying belief that every problem has a solution.  No drugs, no anger, no punishment.  This approach takes time, and the staffing level must be sufficient to allow them to have the time to find solutions.  But as the experience at Woodside place shows, it can be done.

One of the ways that facilities get into a struggle with residents is wanting residents to follow a routine—when to eat, sleep, and so on.  Woodside staff recognize that residents may not be able to follow the institution’s routine, and so they make adjustments.  Residents can eat when they want, go to bed when they want, get up when they want, including during the night.  Recently a number of residents were getting up early, which put a strain on the available staff.  So they adjusted the schedule of a staff member so that person started an hour earlier, and could provide the additional help that was needed.  

Woodside probably costs more to run than an average dementia unit.  As a non-profit, Presbyterian SeniorCare is not trying to make 10 or 20% on investment.  But beyond cost, Woodside Place is special because of the commitment to a model that emphasizes good dementia care.  Unlike many places, good care is not empty rhetoric.  Woodside staff and administration know what good care involves and it gets implemented.

We have seen good programs come and go over the years.  When there is a change in leadership or ownership, model programs get changed, often for the worse.  But there has been continuity at Woodside in leadership and commitment to dementia care.  It’s long-running success, over 25 years, shows that good care can be done.

Presbyterian SeniorCare has recently been opening Woodside units at the other long-term care facilities they operate in Western Pennsylvania, and have helped programs outside the area to implement the Woodside model.

Full disclosure:  Since moving to Pittsburgh, I have been a consultant to Presbyterian SeniorCare, but I have not been called upon to consult on Woodside.



Saturday, July 20, 2019

How Not to Improve Nursing Homes

Assisted Living cottages on Visingsö Island in Sweden

While we were all distracted last week by the President’s racist and anti-immigrant statements, the administration took two steps that will weaken oversight of nursing homes.  The first change addresses a rule that prevents nursing homes from requiring mandatory arbitration.  This change will allow them to include mandatory pre-dispute arbitration clauses in their contracts with residents.  In other words, residents or their representatives will not be able to go to court to address potentially harmful circumstances such as abuse or neglect.  The second step is a proposal that will weaken federal nursing home standards around issues such as infection control and prevention, dementia care, and basic issues related to quality of care.  

It is hard to imagine an industry in as much need of reasonable regulation as nursing homes. There are some high quality facilities, but in the typical nursing home care rarely rises above mediocre. Regulations alone won’t correct the problems in nursing homes, but loosening them is going to leave more loopholes for nursing homes to cut corners and sacrifice the well-being of residents in order to squeeze out more profits.

These changes raise a larger issue—whether health care should be “for profit.”  The long-term care settings that we believe provide high quality care are usually (but not always) non-profits.  The care is often innovative, and staff are always looking for new ways to improve care. For these facilities, the well-being of patients is more important than maximizing profits.  By contrast, the for-profit places we have visited over the years usually just go through the motions.   The care is not inspired or innovative.  Research has confirmed differences in quality of care between non-profit and for profit facilities.  When the goal is to increase profits, it is easy to rationalize making cuts in quality of care.  

Several years ago, Judy was consulting at a large retirement community that provided different levels of care from independent apartments to a nursing home.  A selling point was the quality of the food.  The facility had its own chef who prepared nutritious and good tasting meals.  Good food is one of the things that nursing home and assisted living residents can still enjoy.  The owner ran into money problems—not related to the balance of operating expenses and revenue, but as the result of a divorce settlement.  To save money, he fired the chef and brought in a meal supply company that provided pre-cooked food that was high in salt, low in flavor and where fresh fruit and vegetables were rarely seen.  The owner had started out doing the right thing, but to increase profits he readily cut costs.  The facility also adopted an approach of keeping the more expensive beds in nursing homes filled.  When there was a vacancy, staff would select someone in assisted living to fill the bed, whether or not that level of care was needed. This maximized profit.  So much for the promise to residents that they would receive support to remain as independent as possible.

The appropriateness of the profit motive throughout the health care field generally needs to be re-examined.  When there is an emphasis on profit, people will be tempted to cut corners.  That’s the case whether it is medicine, pharmaceuticals, psychologists, or other health care providers.  Of course, non-profits can pursue income over quality care, too. In Pittsburgh, medical care and insurance are dominated by two large non-profits, who have been at war with each other for some time.  They are run like corporations, with skyscrapers that dominate the downtown skyline and highly paid executives.  Reform of what it means to be a “non-profit” needs to be considered, too.

But when it comes to choosing a nursing home, a non-profit facility may be the best bet. 

For more information about the changes in nursing home rules and standards, visit the website for The Long Term Care Community Coalition at www.nursinghome411.org.  You can also learn where you can write to comment on the proposed rules to lower nursing home standards.



Thursday, April 11, 2019

A New Old View of Alzheimer’s Disease



 An article this week by Gina Kolata, the longtime science and health writer for the New York Times, described an emerging recognition that our view of Alzheimer’s disease may be incorrect.  The prevailing view going back to the 1980s is that Alzheimer’s disease is a distinct disorder characterized by amyloid plaques and neurofibrillary tangles.  Although there has always been mention in the research literature of cases with mixed pathologies, for example, characteristics of Alzheimer’s disease and vascular dementia, these cases were dismissed and efforts to understand and, particularly, to treat Alzheimer’s disease were based on the assumption that there was a pure type of plaques and tangles.  Instead, recent studies have documented that people with multiple pathologies are quite common and represent the norm, rather than the exception.  These other pathologies are found in Parkinson’s disease, Lewy-Body Dementia, Fronto-temporal Dementia, vascular dementia, and other syndromes.  And likewise, patients with those disorders often have evidence of plaques and tangles.  In other words, Alzheimer's is part of a continuum, rather than a distinct entity, except perhaps for the genetically driven early onset cases.

This is in some ways an old view of Alzheimer’s.   Early researchers, such as Sir Martin Roth, suggested that dementia occurred when the accumulation of brain damage passed a threshold.  The more different sources of damage, the more likely the threshold would be crossed.  

Why does this matter? As Kolata and others have written, the effort to treat Alzheimer’s disease with medications that dissolve amyloid plaques has not been successful.  One reason for the failure may be that plaques are only part of the pathology in many patients. Other treatment approaches could well founder on trying to treat one pathology without taking into account other pathologies. This more heterogeneous view of dementia also puts preventive efforts in a different perspective.  Potential protective factors such as a specific food or diet, type of exercise, or other lifestyle factors may not affect the various risks for these pathologies in the same way.  More broadly, there is a need to re-examine the hypothesis that amyloid drives the deterioration process, and to consider alternative pathways that takes into account the other common pathologies.

Two groups have contributed to the acceptance of the homogenous view of Alzheimer’s disease.  The first is the Alzheimer’s Association.  As some of you may remember, the Alzheimer's Association, when founded by five grassroots community organizations, was known as the Alzheimer’s Disease and Related Disorders Association (ADRDA) and reached out broadly to everyone with dementia.  That name was a mouthful, however, and so the Association undertook a “rebranding” process with a new name and emphasis on Alzheimer’s. The rebranding gave the Association a simpler message for attracting donors and winning government support.  And it was very successful.  The growth in public recognition and research support has been tremendous.  But the simple message of a single disease may have influenced researchers to ignore the genetic, symptomatic and pathological heterogeneity that characterize cases of Alzheimer's.

The other group that has pushed a homogeneous view of Alzheimer’s disease is the pharmaceutical industry.   Drug trials have generally been designed to assess benefits on a broad sample of persons with dementia, and have not considered factors such as genetic risks or other indicators of heterogeneity.  The search for the broadest possible market may be good business but it is not good science.

In a 2018 paper in the journal, Brain, two British researchers, Elizabeth Coulthard and Seth Love, suggest moving beyond broad but imprecise diagnostic terms and instead classify patients according to the pathology present. That certainly makes sense for research, where experimental treatment could be tailored more specifically to the pathologies present.  

Another advantage of a broader conceptualization of dementia is that it could lead to a renewed emphasis on support and care for patients and their family caregivers.  Taking the simple view, researchers, advocates and drug companies have been promising that they will end Alzheimer’s disease if only there is enough money for research.  Hopefully, there will be breakthroughs, but the obstacles to development of an effective treatment may be considerable and are likely to occur in small steps.  In the meantime, there needs to be more creative effort to provide high quality and humane care for people with the disease and support for their family members.  And this help needs to be available to the broad spectrum of people with dementia.

The photo is Brontë House in Yorkshire, England.

Link to Gina Kolata, “The Diagnosis Is Alzheimer’s. But That’s Not the Only Problem,” The New York Times.  https://www.nytimes.com/2019/04/08/health/alzheimers-dementia-stroke.html

Reference:  Coulthard, E. J., & Love, S. (2018).  A broader view of dementia: Multiple co-pathologies are the norm.  Brain, 141, 1894-1897.  Doi:10.1093/brain/awy153


Thursday, March 28, 2019

How We Travel

The photo shows Judy outside of Gontran Cherrier. She is smiling because of the two croissants in her bag

A recent profile in the New York Times on travel celeb Rick Steves caused us to reflect on the choices we have been making about travel.  

For many people making travel plans, the goal is to find airfare and hotel bargains.  When we were young, we didn’t have much money and so finding inexpensive ways to travel was necessary.  We avidly read Europe on Five Dollars a Day, and the less spartan and more discerning Let’s Go series.  Steve went to Europe after his college graduation for 3 months on $600 plus airfare on a charter flight.  Needless to say, he was frugal on meals and where he stayed.  After spending a night at a truly horrid hostel in Amsterdam (big dorm style room with 40 or so people and no working plumbing), he upgraded to B&Bs, which consisted of 1 or 2 rooms in a person’s apartment and small hotels. Most were OK, and there were a few memorable experiences.  In Paris, the two guys he was traveling with, Steve Daniels and Ed Tobes, and Steve paid $2.00 apiece for an attic room 5 stories up in a small left bank hotel called Hotel Nesle.  The hotel was a few steps from the Seine and was run by an older couple.    Every morning the husband, who was blind, would climb the twisting stairway to the fifth floor room, carrying a tray with fresh warm croissants, coffee and hot chocolate.  Steve has loved Paris ever since.  

For Steve, frugality on that trip was a necessity.  People like Rick Steves have made it a virtue.  He recommends out-of-the-way hotels with bathrooms down the hall and restaurants where price trumps taste.  (That’s a phrase that has lots of applications).  Several years ago we traveled with Judy’s parents, and her father, a Rick Steves aficionado, insisted we select restaurants recommended by Steves and eat only the daily specials.  The specials were required by law in Spain and were low priced and mostly inedible.  We rebelled quickly and began ordering from the menu. Since we both grew up with depression-era parents, it has been hard to break the habit of always looking for the lowest price.  However, now that we are in this phase of life, we are trying to make conscious choices about the value of the money we are spending.  

Many travel sites and even mainstream magazines like Money make finding the best price on airfares and hotels the priority.  But through trial and error, we have found it is worth paying a bit more for direct airline routes that avoid excessive layovers and for hotels that are comfortable and well located.  We are not extravagant, and we don’t go to fancy hotels, but we are not 21 years old traveling with backpacks, and so paying for ease and comfort makes travel more pleasant.  In the past, we might have booked the smallest room available or sought out the cheapest (clean) hotel.  Now we consider several sizes of rooms and think about what it will be like to stay in it.  Will there be a comfortably large bed?  Will there be chairs for reading and a table so that we can have snacks in our room?  

Our big splurge has been switching to business class on overseas flights.  We began when we went to India two years ago, and realized that we would survive the grueling trip better with the flat beds available in business class. It was worth the extra cost.

As for restaurants, Judy is skilled at finding interesting places on the web and in food magazines. Most places we go to are fairly reasonable with the occasional splurge, like when we were able to get a reservation at Massimo Bottura’s restaurant, Osteria Francescana, in Modina, Italy, a few years ago. Having said that, we have learned that we are not large breakfast eaters, so we tend to find excellent bakeries and coffee shops.  When we are going to eat a large meal, we prefer to have it in the middle of the day, especially in Europe, where dinners tend to start quite late.  That way we can buy a little snack when we are hungry for dinner.  These choices are actually quite economical, when you think about it.

We have finally realized that we have the resources to make travel comfortable.  As we said, it took a little work, but we broke the habit of looking for the lowest price ticket or hotel room, and instead thought about what would contribute to an enjoyable experience.  Why scrimp when we don’t have to, and when we might not get back to our destination again?

As for Paris, we have found a hotel at the edge of Montmarte that is comfortable, well-located, and moderately priced.  And we can walk out the door and down the block to a bakery, Gontran Cherrier, with the best croissants and baguettes we have ever had.