Saturday, September 13, 2014

20th International Conference on Palliative Care

On September 9, 2014, John and I were honored to participate in a day-long seminar at the 20th International Congress on Palliative Care, held in Montreal.  John had met Dr. Thomas Hutchinson, the organizer of the seminar, at a meeting in Madison several years ago but did not realize that he directs the McGill Programs in Whole Person Care.  We don’t know if Whole Person Care programs exist in the US, but we hope there are at least a few.  

Although the discussion about end-of-life care planning has been toxically politicized in wrangling over the Affordable Care Act, recently there’s been good news that patients covered by Medicare may finally be able to have these conversations with their physicians.  These conversations should be a part of the medical care for persons of all ages and they are especially important when people receive a diagnosis of dementia.

Here is Tom’s description of the seminar:

Whole Person Care is caring for the whole person (body, mind, and spirit) with the purpose of facilitating healing.  But what happens when the mind begins to fade?  What happens to the person?  And what about healing in the context of dementia?  We will explore these questions through presentations, experiential exercises, and audience interaction.

The organization of the topics and speakers was brilliant.  Dr. Howard Chertkow began by presenting “The Facts:  Some Key Neurologic Data about Cognitive Impairment.”  Dr. Chertkow and his colleagues developed a quick screening test called the Montreal Cognitive Assessment, though he noted that doctors test memory while families are often more concerned about personality changes like the loss of humor, apathy, and depression.  Dr. Chertkow discussed the new testing being done for biomarkers (especially of Alzheimer’s disease) that appear long before symptoms.  This is the focus of much cutting-edge research aimed at discovering an intervention to delay or even prevent the onset of symptoms.  Dr. Chertkow is hopeful that better understanding of pharmacogenomics will enable clinicians to determine who may benefit from various drugs administered either before or after symptoms appear. 

From the neuropathology of dementia, the seminar moved directly to the experience of dementia.  Dr. Manuel Borod gave a moving talk about his family’s journey with his father through dementia.  He wove together insights from his palliative care practice with stories of his dad who maintained a radiant smile and loving sense of humor throughout the process of memory loss and accumulating confusion.  His talk reminded all of us in the audience how many of us have personal experiences of loving someone with dementia.

Then it was John’s turn to speak about the personhood of those with cognitive impairment and the ways that personhood has been defined through history.  John concluded his talk by pulling out his soprano ukulele and leading the seminar participants (about 200 persons) in singing “The Dutchman,” a song about a woman caring for her husband with dementia.  The chorus includes this line:  “Long ago, I used to be a young man, and dear Margaret remembers that for me.”  John and I like to say that someday I may be his Margaret, or perhaps he will be my Margaret.

From consideration of the person with dementia, we moved to a presentation on the family.  Dr. Cory Ingram, of the Mayo Clinic in Rochester, MN, spoke about different types of dementia:  in cortical types like Alzheimer’s there is an initial deficit in learning new information, but in subcortical types like progressive supranuclear palsy and Huntington's disease, there is a deficit in retrieving information as well as movement problems.  Throughout his talk about the ambiguities and ambivalences experienced by families caring for a person with dementia, Dr. Ingram played audio clips of a daughter talking about her care for her mom.   Dr. Ingram emphasized the question families are rarely asked:  “What is it OK to die from?” Too often, persons with dementia die under conditions of too much or too little medical care.

From the family, we moved to the community, and it was time for John and me to talk.  I began by describing the worldwide dementia-friendly community movement, noting that the literature on dementia-friendly communities often omits any discussion of dying, death, and palliative care, while the palliative care and hospice literature often omits discussion of the needs of persons with dementia.  I don’t think I would have realized this so clearly if we hadn’t been invited to participate in this seminar.  John concluded the presentation by describing the work of the Fox Valley Memory Project and the educational programs offered by the Fox Valley Coalition for End-of-Life Care.  As we developed our talk, we referred often to our notes from the conferences on palliative care and dementia presented in Appleton in the mid-2000s by Dr. Abhilash Desai (now head of the Idaho Memory and Aging Center).  Dr. Desai and his colleagues were most definitely engaging in Whole Person Care! 

After a break, nearly everyone returned for a panel discussion led by Dr. Hutchinson.  He teared up a bit as he spoke of his mom dying with dementia, and about the highs and lows of hope.  He asked the audience to get into small groups to talk about their experiences along this up and down line of emotion through time.  One by one, audience members told moving stories of their experiences with persons with dementia.  Often, we panel members had nothing to add except a word of thanks for the courage of storytelling.

John and I are deeply grateful that we had this opportunity to meet such outstanding caring palliative care physicians.  Knowing that they are so committed to the idea that good quality of life includes planning for good quality in dying gives us hope.  Here’s what our last slide said about this:

A dementia-friendly community will support people with the diagnosis, their care partners, and their paid caregivers throughout the course of the dementia in the difficult discussions necessary for a good death.  “The good death is the continuation of a good life until it is no more” (Kastenbaum, 2004, p. 125)
 





Tuesday, October 15, 2013

Five themes from presentations and discussions


As I (Susan) sifted through the program and my notes, I came up with five themes that functioned like a repeating musical line.  If you’re been reading some or all of these blog posts you’ve probably noted these, for we’ve referred to them several times.  Others attending the same conference may have different ideas on repeating motifs, but here are mine.

1.  Persons living with dementia must be involved in all phases of planning, implementation, and evaluation of programs and services.  Well-meaning academics and professionals should never act as if by virtue of their education and training, they know what people living with dementia want and need. 

2.  Persons living with dementia around the world repeatedly tell researchers, policy makers, and program professionals that they want more opportunities for stigma free social interaction.

3.  When communities are intentional about improving dementia attitudes, services, and programs, persons with the diagnosis can maintain a good quality of life.  This is not to say there won’t be suffering, but taking the approach that we’re all in this together will go a long way to ameliorating some of the suffering, especially when it’s caused by social isolation. 

4.  Creation of dementia friendly communities and societies will take collective will at national, regional, and local levels.  It’s not an either/or.  Some policies and programs need the weight of national governments behind them; others will begin in neighborhoods.  International cooperation and open exchange of ideas is crucial as well. 

5.  We must begin to address the complexities at the intersection of the desire for dignity and the desire for autonomy.  All of us are vulnerable creatures needing care from others that promotes dignity.  People with dementia experience an extra load of vulnerability that changes with the progression of the condition.  We need to look carefully at how we balance the wants, needs, and declarations (as in advance directives) of the “then self” and the “now self.”  This will not be easy and will require persons with dementia to collaborate with philosophers, theologians, artists, social scientists, medical professionals and others. 

This last point leads me to look ahead to the Alzheimer Europe meeting in Glasgow, Scotland, in October, 2014 where the theme will be “Dignity and Autonomy.”  Whether you’re struggling with the question of your father’s driving (e.g., taking away his dignity along with his driver’s license, or allowing him autonomy to make decisions about his driving capability) or you’re wrestling with life and death questions about treating pneumonia with antibiotics (e.g., knowing your wife signed a living will years ago and stated she never wanted to “be put in a nursing home,” but nevertheless she’s been happy living in a high quality memory care residence), you are living at the cusp of two major—and sometimes competing—challenges of life the 21st century.  Thankfully, the good people who organize the Alzheimer Europe meetings are providing a forum for these difficult discussions.

Can it really be this simple?



I (John) focused particularly on presentations by persons with dementia.  As mentioned in an earlier post, the Dementia Working Group that was formed only a year ago now includes persons with dementia from 11 European nations. They are not waiting passively for society to toss them the occasional crumb – the Dementia Rights movement is gaining steam, and I hope it will find its way to American shores soon.

A gentleman from Scotland shared his remarkable story.  After being diagnosed with Lewy Body dementia he sunk into a period of depression and withdrawal; his “dark year,” he now calls it.  Then he and his wife hitched up their figurative pants and began making calls on their neighbors, explaining his circumstances.  They visited 30 homes near their own.  “As a result,” he explained, “I found I now had 60 sets of eyes watching over me, there to help if I became lost or had other difficulties.”  Then they began making visits to the shops and businesses he had long frequented, beginning with the newsstand, the post office and the supermarket.  “Now if they see me staring blankly, people help me sort out what I came in for.  They put my items into my bag.  They count out my money and give me my change.  They have given me back my life.”

Can it really be that simple?  Perhaps more so in a smaller community, but people really do want to be kind and helpful.  But before they can be helpful, they need to understand the situation, and it takes courage to overcome the fear of being stigmatized and ask for that help. 

A related conversation that unfolded in our final plenary focused on businesses that declare themselves “dementia friendly” and so identify themselves with a sign in the window.  The largest-scale effort of this type is in the U.K., fostered by the Dementia Action Alliance, and their chosen logo is a purple angel.  It can be found in shops, churches, and places of public accommodation.  Other nations employ different logos, but the purple angel seems poised to become the most universal.

But precisely what does it mean for a business to declare itself dementia friendly?   At a very minimum it means that a business publically declares that persons with memory loss of cognitive challenges are welcome there, but some worry that it may be entirely too easy to make such a declaration simply for the sake of public relations or competitive advantage (“Our bank is dementia friendly while the bank down the street is not!”).  Is there a commitment to training employees to recognize signs of dementia and extend hospitality and support?  How much training, and provided by whom?  Would such a declaration extend to thinking through the physical layout of the business to make it less confusing to persons with dementia?  Who should set the standards, if indeed there should be standards at all?

Which brings us back to the Dementia Working Group.  In the end, it was argued, only persons with dementia are equipped to determine whether an establishment is dementia friendly.  What we need, in other words, are dementia activists who will provide education, feedback, and constructive criticism.  As the Working Group proclaims, “nothing about us without us!”

Approaching local businesses has been on my screen for some time as a focus for the Fox Valley Memory Project, but there have been so many other initiatives to get up and going.  But I am ready to open this conversation in our region, beginning with the downtown Appleton business community.  The Americans with Disabilities Act ensures that all of our businesses are accessible to persons with physical limitations.  Now it is time for these businesses to take steps to make themselves equally accessible to persons with dementia and those who care for them.

Monday, October 14, 2013

Reflections on the 2013 Alzheimer Europe conference


John and I have agreed on topics for overview blogging about the conference.  We work very differently.  Ever the academic, I took 27 pages of notes (complete with references that I want to track down when we get home) and he ended up with 1 page.  While I seek data, he seeks stories and while I construct themes from data (qualitative researchers, you know what I’m talking about), he reflects philosophically about ideas.

Our four concluding blogs will be organized like this.  I’ll briefly describe a few national and regional dementia friendly community initiatives.  I’ve had to be selective because I don’t want this post to be overly long.  Later, I’ll talk about five big themes I observed underlying the plenary speeches, session lectures, and posters.  John will relate one story as he heard it from a man with Lewy Body Disease, and he will reflect on what he envisions as “dementia friendly on the ground.” 

National Efforts

1.  Belgium has a program to develop dementia friendly cities.  Persons with dementia and their care partners are integral to the planning and execution of the program.  Youth organizations also participate.  One stated goal is to ensure the “right to be different.”  Such tolerance will benefit not only persons living with dementia but should also generalize to people with mental health problems, developmental disabilities, and other socially marginalized characteristics.

2.  “On October 20, 2013, everybody in Norway will know what dementia is.”  This audacious statement appears on a pamphlet describing how every year since the 1970s, the Norwegian National Broadcasting system has run a telethon.  This year, the focus will be on dementia.  In a country with a population of 5 million, over 100,000 volunteers will visit every home in Norway (about 2.2 million) within 2 hours to collect funds and distribute information in conjunction with the 8-hour telethon.  The program has three goals:  (1) to encourage activities to improve quality of life, especially through volunteers serving as “activity friends,” (2) to increase public knowledge and create meeting places for people with dementia, and (3) to support research on prevention and treatment.

3.  In Japan, over 4 million people have taken a 90-minute training on awareness that dementia is a medical condition affecting may people.  Many of these trainees are young and have signed on to be “dementia friends”; some recent national research has shown a drop in stigma.  Interestingly, the Japanese have paid particular attention to men caring for their wives or mothers.  They observed that men in that country get embarrassed about having to do things like take a woman to a public toilet, or to buy her underwear or other personal items.  Thus, they’ve promoted a widely recognizable pin that says merely “I am caring now” and is intended to elicit compassion and help from strangers.

4.  In Great Britain, a similar effort is underway to create a cadre of “dementia friends” and “dementia champions” (persons who train others).  The Prime Minister, David Cameron, has been a key advocate, and he’s the one responsible for organizing the G8 summit in London that will address dementia (we hope) in December, 2013. 

Regional Efforts

1.  People in Motherwell, Scotland, have developed an excellent small folded brochure the size of a business card that contains 14 practical suggestions for business owners to make their shops or services dementia friendly.   The organizing idea for this project is that “no one should have to deal with dementia alone.”

2.  In Huddinge, Sweden, researchers are studying “zebra crossings” for pedestrians with dementia.  Even if you don’t have dementia, when trying to do this, you need to process so much information quickly.  Making street crossing safer for people with dementia will make them safer for all. 

3.  The Alzheimer’s Society of Ireland is awarding grants to 8 communities for 3 years who will raise awareness about dementia, and will develop arts and cultural activities, educational and intergenerational activities, volunteer opportunities, and access and participation in sports and leisure activities.  They will also have to show how they are promoting dementia tourism.  Throughout the planning and implementation of these programs, communities will have to consult with persons with dementia regarding these adaptations of the social and physical environment.

4.  In Vienna, Austria, pharmacies are collaborating on how they can be more dementia friendly. 

5.  The British organization, Dementia Adventure, has recently developed an outdoor activity for persons with dementia at a large park by a loch in Scotland

6.  The ACT on Alzheimer’s organization (www.ACTonALZ.org) in Minnesota has a free toolkit available online for communities to assess how dementia capable they are and how they might improve physical and social environments to raise quality of life for people living with dementia.

7.  And finally, I need to include what’s happening in the Fox Valley region of Wisconsin, where the Fox Valley Memory Project has a multi-faceted approach to meeting the changing needs of persons living with dementia (www.foxvalleymemoryproject.org).  John and I presented a poster outlining our various programs and services.  

Saturday, October 12, 2013

Alzheimer Europe, last conference day in Malta





Our morning began with the poster session where we had a number of good conversations with people about what we’re doing in the Fox Valley region of Wisconsin to create a dementia friendly community.  The day ended with a keynote address in which a British psychologist spoke about working toward a dementia friendly society.  A question we need to consider further is how public policy to this end will benefit all persons, not just those whose lives are touched in various ways by dementia.

One session Susan attended later reminded her of the original impetus for our book; several people spoke about how friends drop away once the dementia diagnosis is received.  This session was organized by the European Working Group of People with Dementia, which consists of 11 persons (from 11 countries) and their care partners.  One 55-year old woman in the group from Czech Republic who has young onset Alzheimer’s spoke at an afternoon plenary session and reminded the audience never to forget the individual differences among persons with the diagnosis.  Her talk was followed by one from a scientist working for the Innovative Medicines Initiative (Brussels, Belgium); she described the complex need to match prevention and treatment methods to individual needs and circumstances.  She also reminded us of the fact that between 1998 and 2011, 101 drug trials for treating Alzheimer’s symptoms have failed; the last of the 5 drugs approved by the FDA for Alzheimer’s treatment was approved in 2003. 

A brilliant Maltese psychiatrist now working in Australia talked about how dementia is not solely a cognitive problem but rather is accompanied by symptoms that may be more distressing than memory loss and confusion; these include delusions, hallucinations, depression, anxiety, irritability, agitation, and apathy.  Although there’s a worldwide effort to dramatically reduce the prescription of anti-psychotic medications for people with dementia, we have been slow to optimize treatment and care for people with these characteristics.  Here’s where psychosocial “interventions” and creative engagement programs can have a huge impact, though the medical community always wants to see the evidence for their legitimacy, evidence that cannot always be obtained through the same methods used to test drugs (e.g., randomized control trials).  However, Alzheimer Europe is supporting a group of scientists doing good research on psychosocial programs; they are rigorously examining studies to determine which ones show the most promise.  On the one hand, Susan was pleased to hear him say we need more psychologists and counselors trained to work with people with dementia and their care partners, but on the other hand, she gets discouraged when she considers how few training programs exist to do this. 

After a few more addresses on assistive technologies and designs for homes where people with dementia can thrive, the last two speeches of the day dealt with the persistence of the self through the course of dementia, and the creative work going on in the U.K. to promote dementia friendly initiatives.  These range from cupcake creation programs to a University of Bournemouth program where people with dementia are doing marine archeology by helping scientists collect, clean, and identify objects.  (Note to academic friends:  Check out the work of Althea Innes.) 



On December 11, 2013, the G8 is meeting in London.  The British Prime Minister has declared the topic of the meeting to be dementia friendly societies.  Let’s hope the world cooperates by having no more outbreaks of war, economic disaster, etc.  Try to imagine Putin and Obama sitting down to talk about how their countries are affected by the growing number of persons diagnosed with dementia.  Let’s also hope the conversation doesn’t simply focus on defining this as a burden to economies.

Our next post will address major themes that emerged in the course of the conference, and how they speak to the work being done by the Fox Valley Memory Project.  But first we badly need some sleep.  Personal note: we had one of the Twenty Noteworthy Meals of our lives at a nearby Mediterranean seafood restaurant: we knew we were in good hands when the chef stopped by our table and told us to ignore the menu and allow him to take care of us with specially prepared mussels, scallops, and three kinds of grilled fish (along with grilled veggies).  “I have no butter at all in my kitchen,” he proudly exclaimed.  We look forward to these next few post-conference days in Malta.  Fun fact: Malta is the most densely populated country in Europe!