Authenticity, Why it Matters

By / Posted on August 1st, 2017

Anne Ellett is a certified Nurse Practitioner (NP) with more than 20 years of experience in elder living and memory care, and served as Sr. Vice President with Silverado Senior Living, an award-winning Assisted Living company specializing in dementia care.  Currently, Anne is owner/CEO of Memory Care Support, LLC, a consulting agency working with senior housing professionals as they develop state-of-the-art health and wellness and memory care programs.

In Green House homes, authenticity matters – for example, we strive to build real homes, not fake homes, not pretend homes, not places that look like a home but really feel more like an institution.  We want to create that sense of belonging, of warmth and deep knowing that we all crave.  We want the elders to feel connected to the people and the space.

Best Life supports elders living with dementia (ELWD), and here too, we strive for authenticity.  For many ELWD, their experience has been one of loss and lack of choice.  Family, friends, and professionals may respond to their diagnosis rather than to the individual person, focusing on inabilities rather than retained talents and abilities.  The opportunities for real, authentic life experiences may be taken away, justified by saying, “It doesn’t really matter, they won’t know the difference.”

Best Life understands that being authentic does make a difference to elders and those working closest to them.  We know that real friendships, real relationships are meaningful.  One of the Best Life core principles is “Elder-directed, relationship-rich living.”  Offering opportunities for ELWD to sustain old relationships as well as the opportunity to form new ones is part of a normal life, and should be part of living with dementia.

Relationships with pets can also be important for ELWD.  How many of us enjoy the companionship of our pet cat or dog?  The joy that a dog brings when he puts his head in your lap, or a kitten who runs through the house chasing a ball of paper brings a lot of smiles.  An ELWD who can assist with feeding or walking the dog, or enjoys rubbing the neck of their favorite cat knows the significance of rapport with live animal.

As I visit many care locations, I am sometimes shown a community’s “pretend” pet animal program.  There are many varieties available of these fake pets, all of them claiming to bring joy to the elder.

Best Life focuses on real relationships built on retained abilities. If an ELWD is offered a robotic pet, they may respond and stroke it, but there’s no relationship, no purpose, no bond of love that is formed.

What would be the reason for not having a real pet – a loving dog or a real cat who can be the “diva” of the home?  Do we offer a robotic pet because again, we think, “It doesn’t really matter, they won’t know the difference?”  The magic that happens between an ELWD and a real pet cannot be substituted by offering a mechanical toy.

I’m reminded of one woman I knew who had recently moved into a home and was quickly labeled as a “challenge” by the care team.  Joan yelled out frequently, disrupting other elders.  She criticized both staff and elders and refused to participate when invited to meals or engagements.

As an annual event, the home sponsored a pet adoption day by the local animal shelter.  In preparation, the ELWD helped clear the patio where the public would be coming to view the adoptable pets. On the day of event, many volunteers with a variety of dogs and cats showed up at the home and as the volunteers and pets arrived, the elders greeted each one and welcomed them to their home for the pet adoption.

Joan initially resisted becoming involved, but as the dogs arrived, she focused on one small dog who was blind in one eye and was anxiously barking a lot.  As she pet the dog, it seemed to relax and finally laid down and closed its eyes.  Joan said, “It just needed some love,” and continued to sit by its side for the entire afternoon.

At the end of the day, the dog had not been adopted and the care team asked Joan if she would like to adopt it?  The look on Joan’s face said it all.  The significance of the friendship between Joan and her dog Freddy (Joan’s chosen name for it) was evident as the months passed.  It seemed Joan found purpose and peace when she and Freddy would sit together or as she fed it some of her favorite chicken dish that she had saved from her own dinner plate.

Best Life encourages an authentic, real home where an ELWD has opportunities for a life that is purposeful and relationship-rich. learn more>>

 

 

 

 


Green House Highlighted at 2017 Pioneer Network Conference

By / Posted on July 27th, 2017

Next week, visionary leaders will come together at the 2017 Pioneer Network Conference.  The theme, ‘Be The Future’, is a powerful charge to change the way society views aging, and create a better world for elders and those who work closest to them.  The goal of this conference is to showcase innovative thought and best practices in the long-term care culture change movement.  The Green House model is featured throughout the conference, and the national initiative is leading two sessions, one on the value of short term rehabilitation with a Green House home, and one on Best Life for elders living with dementia.

Short term rehabilitation presents an opportunity to position an organization for the future. The small house model provides a consumer-driven experience that leads to positive outcomes.  During the education session, The Green House Project will highlight The Woodlands of John Knox Village, an organization who has captured their market by utilizing The Green House model for short term rehabilitation.  They will share how they achieve positive outcomes using functional rehabilitation in the home, establish credibility with key stakeholders, and positively impact their bottom line.

As the population of the United States ages, the prevalence of Alzheimer’s and related dementia is growing. Dementia was estimated to cost the United States more than $236 billion in 2016.  To address this challenge, The Green House Project has developed Best Life, an initiative that aims to connect elders with life and community through the philosophical, architectural, and organizational elements of The Green House model. It requires dedicated teams, extensive knowledge of the types of dementia, and a fervent belief in the unique ability of every individual to enjoy a meaningful life.

The Green House Project is a proud leader of what is possible in long term care.  This conference is a time to connect with like-minded visionaries.  As the paradigm shifts to view elders as creative, resourceful and whole, their potential is unlocked, and we all benefit.

Learn more about The Pioneer Network>>


Green House homes in Florida are Supporting Elders to Live their Best Life

By / Posted on June 26th, 2017

Anne Ellett is a certified Nurse Practitioner (NP) with more than 20 years of experience in elder living and memory care, and served as Sr. Vice President with Silverado Senior Living, an award-winning Assisted Living company specializing in dementia care.  Currently, Anne is owner/CEO of Memory Care Support, LLC, a consulting agency working with senior housing professionals as they develop state-of-the-art health and wellness and memory care programs.

The Green House Project recognizes that providing a life affirming, dignified environment for elders living with dementia (ELWD) is imperative, especially given that over 80% of people living in long term care have some form of cognitive change.   Supporting these elders to thrive is a multifaceted process, and involves culture change.  Best Life is a new initiative, designed to support Green House teams, by building on the core values of Real Home, Meaningful Life and Empowered Staff, and providing enhanced education that focus on principles such as:

  • Power of Normal – normalizing programs and environments
  • Integration with greater community
  • Celebrating retained abilities
  • Dignity of Risk
  • Age-appropriate interactions
  • Elder-directed, relationship-rich living
  • Advocacy

 I had the pleasure of delivering this guided process of implementation at The Woodlands at John Knox Village (JKV) in Pompano Beach, Fl.  JKV is a wonderful location incorporating independent living, assisted living, a nursing community and 12 Green House homes onto one campus!  Their 12 homes have barely been open a few months but the leadership at JKV has the desire to strive for excellence in helping those with dementia thrive.  Educator, Dolores Hughes said, “We feel equipped with tools to implement immediately, and also challenged to see people living with dementia in a new way. Best Life is an eye-opening experience.”

BEST LIFE supports elders living with dementia (ELWD) to have choice and dignity, while living in the least restrictive environment possible.  Often, restrictions are due to our own perceptions of the capabilities and interests of ELWD.  Typically, we are trained to see the diagnosis first rather than the whole person, which can limit the experiences and choices we offer to the ELWD.  For example, as a nurse, I was trained to label “patients” by their diagnosis, i.e., the hip fracture in Room ###, or the patient with Alzheimer’s in Room ##.

When we use labels to identify someone, that prevents us from seeing the whole person and instead we focus on their loss of abilities,   “they’re not able to ______ (fill in the blank) because they are living with dementia, they would not be interested in doing ______ (fill in the blank) because they are living with dementia.”  In BEST LIFE, we learn to look beyond losses and inabilities toward retained capabilities and emerging talents.

As professionals, it’s important to examine our own training in the traditional model which emphasizes the diagnosis rather than the person.  Are we limiting the experiences we offer to ELWD?  For example, are we restricting them, perhaps from our own bias and belief that we need to segregate ELWD for their own safety?  New research shows that there is value in offering ELWD frequent experiences with the larger community and with younger generations.

BEST LIFE has three areas of focus: Culture, Meaningful Engagements, and Health and Well-being.  An entire day is devoted to each of these topics, looking both at our own biases and misperceptions of ELWD, and also examining new research from around the globe on new techniques that are beneficial and increase choice and dignity for ELWD.

During the BEST LIFE workshop at JKV, one of the most poignant experiences was when the participants shared what they would want the shahbazim to know about them if they were living with dementia.  Aside from details such as their favorite foods or activities, the participants overwhelmingly requested that they be enabled to continue to have fun and laughter, and opportunities to try new things, and also to continue to contribute and “give back”.

There are already stories of elders connecting with life in new ways, as a result of this new focus on retained abilities and strengths. There is an elder in The Woodlands who plays dominoes every day after lunch and loves to teach anyone else, and an individual who recovering in short term rehab and plays his harmonica.  Knowing him is a priority,  and his full personality shines!    There is a new garden growing in another one of the homes—it is amazing how nature, growth and learning enhances well-being for everyone.

 

 

 


Electric Energy Takes Green House Adopters Beyond Better!

By / Posted on November 30th, 2016

The energy is always electric when Green House adopters are together. “As a national initiative, amazing things happen when so many changemakers are in the same room,”  shares Senior Director, Susan Ryan, “The opportunity for rich discussion, relationship building and thoughtful questions is irreplaceable. ”   That was certainly the case as over 250 Green House adopters gathered at The 2016 Green House Annual Meeting—Beyond Better.tshirt-shot_web

visit to Green HillHosted in New Jersey, attendees were able to visit two open Green House homes, Morris Hall Meadows and Green Hill.  Representing 30 states and over 200 open homes, the growing Peer Network is one of the greatest values of participating in this initiative.  Green House stakeholder, John Grace, said, “It was nice to attend an intimate gathering where “practical application” is the theme of the day.”

Pre-Conference workshops provided role specific opportunities to explore areas that research proves are vital to the sustainability and success of the model, such as coaching and empowerment.  Senior executives joined President of Center for Innovation, Inc., the sponsor of The Green House Project,  Scott Townsley, to discuss the strategic trends impacting healthcare, and how The Green House model must continue to evolve in order to lead the way to a better tomorrow.

Marc Middleton, CEO of Growing Bolder, opened the meeting with an inspiring message that what the mind believes, the body embraces, and a call to belimarc-middleton_webeve in the potential of elders!  This multimedia presentation thoroughly dismantled the myths of aging, and set a tone of possibility for the rest of the meeting.

With breakout sessions focused on key operational topics like convivium, spirituality, team building and hiring, adopters left the conference with a full ‘toolbox’ of new skills and ideas to eni-am-green-house_webhance their homes and organizations.  An original spoken word piece, called, “I Am Green House”, brought the crowd to their feet, as a shahbaz, a nurse, a family member and an elder shared what it really means to live this movement everyday.

This year, intensive sessions were offered as opportunities to take a  deep dive in areas of dementia, coaching leadership and bringing Green House values into the legacy home.   Hot topics, real discussion, and an impetus to keep wali_question_webgrowing, resonated throughout the conference. The “Inner Circle” was a unique networking space for attendees to meet their peers and help to co-create the future.  Reciprocity of active learning and shared experience is making a difference and changing the world.

Sustainability is crucial in the work that we do, and a quality benchmarking resource was presented to attendees with a tangible charge to never stop improving.  Exciting results are being discovered as the evidence-base for The Green House model grows.

The conference closed with Ashton Applewhite, anti-ageism advocate and author of This Chair Rocks, an Manifesto Against Ageism, sending a passionate appeal to fight ageism in all its forms.  With humor and personal stories, Ashton served as the perfect way to end the conference feeling challenged and  inspired.

susan-speaking_web“THE POWER OF THE MOVEMENT IS YOU!” says, Susan Ryan, to an empowered audience of Green House adopters.  The national initiative is able to push the envelope of what is possible because of the innovative and excellent work of Green House adopters and those stakeholders who are changing what it means to age.

Next year marks the 10th Annual Green House Meeting.  Held in Florida, with host site, John Knox Village, this meeting continues to grow in meaning and scope, as Green House adopters truly go, Beyond Better!

 


Living the Good Life: Sharla Lee

By / Posted on July 13th, 2016

Living

 

“Living the good life” is a blog series celebrating the lives of people living with dementia in Green House homes.  In Green House homes across the country, elders are creative, resourceful and whole people who have a valuable story to share.

 

Sharla Lee lived a colorful life as a performer, gracing many stages and breaking many hearts. Legend has it that she was even asked out on a date by baseball superstar, Joe DiMaggio. When cognitive impairment made it unsafe for her tshahbaz and elder standing and embracingo live on her own, this talented pianist may have faded away, but thanks to Baptist Retirement Community Green House homes in San Angelo, Texas, her star continued to shine bright.

Always the professional, Sharla would wake up at 5:00a every morning in her Green House home in order to practice the piano. She loved to play for the elders during the evening meal, choosing to eat later, after her performance. In Green House homes, the day is centered around the individual elders’ natural rhythms and preferences. The small size enableelder woman and child at pianos the home to run smoothly based on deep knowing relationships rather than task oriented schedules. As a musician, Sharla’s preferred schedule was different than that of others living in The Green House home, and by honoring that, her personhood remained intact despite dementia.
exercises_setting table

Sharla brought joy to others in The Green House home, through her music, and also by being an engaged member of the household. She was made an “honorary shahbaz”, the name given to direct care staff in Green House homes, because she was always willing to help by rolling napkins, setting the table and befriending the other elders in the home. Reciprocity, the ability to receive and also give care, is a key element of Green House homes. As humans, we need to feel a sense of purpose. It may seem like a simple thing, but the value of sharing your gifts with others is something that can’t be overstated.elder man and woman eating on terrace 2

elder woman reading curled in chairMae West once said, “You only live once, but if you do it right, once is enough.” Sharla Lee dazzled audiences in San Francisco supper clubs, on cruise ships and thankfully, in her Green House home as well. By knowing Sharla’s story, and creating opportunities for her to shine, her Green House family made sure that Sharla lived “the good life”.

 


Living the Good Life: Dr. Lemuel Rogers

By / Posted on July 5th, 2016

Living

 

“Living the good life” is a blog series celebrating the lives of people living with dementia in Green House homes.  In Green House homes across the country, elders are creative, resourceful and whole people who have a valuable story to share.

Dr. Lemuel Rogers

“Without connections to the world that nurtures our human spirit, we hasten decline” -Susan Ryan, Senior Director, The Green House Project
dr r portraitOur lives are a rich tapestry of interests and experiences, woven together across time.  Sharing and celebrating our unique stories ensures that our personhood is preserved, even as our needs change.  Dr. Lemuel Rogers, was the epitome of dignity; a dapper, intelligent man with a great smile and beautiful singing voice.  He was well known in the community as a respected doctor, and leader of his church.  Meaningful life is a core value of The Green House model.  The means that a person must be deeply known, and have the power to maintain their identity through connections and engagement.

For Dr. Rogers, that meant being respected and acknowledged for the expertise and reputation that took a lifetime to build.  In the home, he preferred to be called “Doctor”, and frequently perused medical journals with former St. John’s medical director, Al Power.  Staying connected to the community that he loved, shahbazim (care staff) supported Dr. Rogers to attend the annual African-American Health Symposium, a church event dr r fraternitydedicated to him and his wife, Gloria.  Being honored for one’s gifts is essential to living the good life.

Work hard, play hard.  Dr. Rogers was also an active member in his fraternity, Omega Psi Phi. His fraternity brothers were frequent visitors at The Green House homes, bringing joy and beautiful music. Dr Roger’s loved to sing and was able to share his talents with others in his home.  See the below video of Dr. Rogers singing “Swing Low, Sweet Chariot”.

 

Often, those living with dementia become known solely by their diagnosis.  The beautiful tapestry gets lost amidst the behaviors and medications. In a Green House home, however, the value is placed on WHO that person is, and WHAT will support them in living the good life.  Dr. Rogers was serious, but had a great sense of humor.  dr. r group shotYou really felt like you’d done something special when you made him laugh. When children would come to visit, he would shake their hands very formally when he met them and they loved it. His dementia was pretty advanced by the time he moved to The Green House home, but when a doctor talked with him, or his church or fraternity visited, he always sat up a little straighter, shone a little brighter, and rose to the occasion in conversation. The man just…exuded dignity.

 


GROUNDBREAKING OF CLARK-LINDSEY’S GREEN HOUSE HOMES FOR DEMENTIA CARE

By / Posted on October 2nd, 2015

Green House Homes Will Be First of Their Kind in Champaign County

(Reprinted from Perkins Eastman) Last Thursday, September 24, in Urbana, IL, team members from the Chicago office of international design and architecture firm Perkins Eastman joined leadership from Clark-Lindsey for the groundbreaking of the CCRC’s new small homes for specialized dementia care—one devoted to assisted living and the other for skilled nursing care—that will follow The GREEN HOUSE® model. Each home will feature 12 private bedrooms, individualized care from specially trained caregivers, and home furnishings. The Perkins Eastman design team is led by Principal Jerry Walleck AIA and Associate Principal Ramu Ramachandran AIA, LEED AP, two key members of the firm’s renowned senior living practice area.

clark lindseyClark-Lindsey has partnered with The Green House Project and Perkins Eastman to help usher in a new and superior standard of care for those suffering from Alzheimer’s and dementia-related illnesses. The introduction of these homes not only marks the first Green House project in Champaign County but also a major step forward for how Illinois providers and regulatory officials are looking to institute efficient and innovative care models for seniors. Green House homes are designed to provide a personalized model of care within a real home setting, replete with an open kitchen, dining room and other common areas, setting them apart from the traditional institutional model that can resemble a hospital or nursing home.

clark lindsey2The new homes, situated on a 10,000 sf footprint, will feature an architectural design where every inch of space has been carefully considered in order to transform the physical environment to feel more like home. From the outdoor courtyard, library and den areas to the open kitchen providing home cooked meals, these amenities encourage social contact among elders and caregivers. The homes’ design is tailored to maintain existing on-site trees as well as acknowledge the natural surroundings with respect to building proportion, scale and form, while also taking full advantage of the expansive views of adjacent Meadowbrook Park.

“Clark-Lindsey is already known within the industry as a leader and innovator when it comes to care,” says Jerry Walleck, the project’s design lead, “and the new Green House homes are a continuation of that. They will provide invaluable care and services to dementia residents and their families, and it’s an enormous privilege to have played our part in making that happen.” Both homes are scheduled to open in late 2016.

Clark-Lindsey Village was founded in 1978 and is the area’s first and only CCRC. It is one of only eight certified Centers for Successful Aging in the U.S. In addition to its forthcoming dementia care small homes, Clark-Lindsey Village offers extensive independent living accommodations, as well as inpatient and outpatient therapy services, assisted living and skilled nursing care at its Meadowbrook Health Center.

The Green House Project is a radically new national model for skilled nursing care that returns control, dignity and a sense of well-being to elders, their families and direct care staff. In the Green House model, residents receive care in small, self- contained homes organized to deliver individualized care and meaningful relationships between residents and care staff.

About Perkins Eastman
Perkins Eastman is among the top design and architecture firms in the world. With almost 950 employees in 14 locations around the globe, Perkins Eastman practices at every scale of the built environment. From niche buildings to complex projects that enrich whole communities, the firm’s portfolio reflects a dedication to progressive and inventive design that enhances the quality of the human experience. With work in 46 states and more than 40 countries, the firm’s portfolio includes transportation and public infrastructure, high-end residential, commercial, hotels, retail, office buildings, corporate interiors, schools, hospitals, museums, senior living, and public sector facilities. Perkins Eastman provides award-winning design through its offices in North America (New York, NY; Boston, MA; Charlotte, NC; Chicago, IL; Los Angeles, CA; Pittsburgh, PA; San Francisco, CA; Stamford, CT; Toronto, Canada; and Washington, DC); South America (Guayaquil, Ecuador); North Africa and Middle East (Dubai, UAE); and Asia (Mumbai, India, and Shanghai, China).

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The Hitchhiker’s Guide to Dementia

By / Posted on September 10th, 2015

Dr. Al Power will be conducting an all day preconference session along with a plenary and education session at The Eighth Annual Green House Meeting & Celebration in Broomfield, CO from November 16-18th. The annual meeting is for Green House members only and this year’s theme is Better Together.  The title of Dr. Power’s preconference session is “Reframing Dementia.”  His plenary session is entitled “Living Better Together with Dementia: Taking it Further” and his education session is “Real Life Without Antipsychotic Drugs.”  Log-in to the Peer Network website today to register for the meeting so you can hear from Dr. Power first hand!

 

Like most people, I am subject to a regular barrage of media reports, coming from radio, television, internet news outlets, social media and daily RSS feeds. And here is what this information stream has taught me:

If I eat blueberries, I’ll lower my risk of Alzheimer’s. Or was that tomatoes? It now appears that yogurt lowers the risk as well—does that mean blueberry yogurt, or will any old flavor do? Maybe I should have coconut flavored yogurt, because apparently, if all that coconut oil doesn’t kill me with a heart attack, it may make my brain healthier.

And now it appears I may have to replace my plumbing, because a new study suggests that too much copper causes Alzheimer’s; though other medical studies have shown that a high copper intake actually lowers the risk. So which is it? And is lead involved? (I need to know because I tend to chew on my pencils when I do my daily Sudoku puzzles.)

And then there’s the glucose connection, the blood pressure connection, the inflammatory connection, the brain reserve connection, the mood disorder connection, the social connections connection.

And what kind of a teenager was I? Apparently, certain adolescent behaviors raise your risk. One of them is getting drunk; well, thank God, none of us ever did that! Also, it’s a risk if you have a history of adolescent antipsychotic use. (Tell that to the psychiatrists who are finding all kinds of new reasons to prescribe these drugs to young people, from depression to “oppositional disorders”.)

Another risk factor (cue Randy Newman) is being too short. Time to get out the gravity boots? And if that weren’t bad enough, now the folks in Manhattan say dementia can come from exposure to bacterial and viral infections. (Someone sneezed on me just the other day, and I swear my ADAS-Cog score dropped two points!)

Okay everyone, are you listening to me?? STOP! Just…stop. If there were a “Hitchhiker’s Guide to Dementia”, the first words would still be: “Don’t panic.”
Time…to…take…a…deep…breath.

What we have here is a collection of illnesses closely tied to the aging process, and a sequence of changes that may begin decades before we show any outward signs. And we are dissecting all the minutiae of the millions of things we do, eat, drink or experience in our lives—trying to find connections, however tenuous, that we can shoot to the media outlets to fuel the frenzy.

There are a lot of people making money off of our hysteria and paranoia. But it’s much worse than that.

You see, the more we fuel this kind of panic, the more we demonize the condition; and consequently, the more we demonize and dehumanize people who live with cognitive disability. Folks like Dr. Bill Thomas have long warned us that those people who do less or produce less are devalued in our society. It is also now clear that a similar fate befalls those who remember less in our hyper-cognitive, technology-obsessed world.

Here are a couple of known facts to keep in mind: We all die. Many of us who live to a ripe old age will experience changes in various organ functions and capabilities. Many of us will become forgetful as we reach our later years. Those who do are not bad people.

There is so much emphasis on “successful aging” these days—what does that mean? Are you successful if you run marathons until you are 96 and then die in your sleep, or at the completion of some incredible sexual escapade? That’s romantic, but highly subjective and unlikely. More important, this fixation on how we end our lives not only threatens to devalue who we are in our last years, but also how we have lived all of the earlier days of our lives.

And if you don’t make it to the grave with all of your organ functions intact (an oxymoron in itself), what is that called? “Failed aging”? What about people born with developmental disabilities or congenital illness? They would be “failed agers” from the very start. No need to even give them blueberries and yogurt, I guess.

You and I will always be more than the sum of what we can do and what we can remember. So here’s the advice I would put in my “Hitchhiker’s Guide”:

No matter who you are or how you live your life, you have a chance of becoming forgetful as you age. Your risk is never zero, but no one knows your exact “number”. You can almost certainly lower that risk somewhat if you eat well, exercise and do things that are good for your body, mind, and spirit; your risk will probably go up if you abuse any of those. But being obsessive about every little thing you do will likely not improve your odds to a greater extent than healthy moderation.

Find that “sweet spot” that gives you a life worth living. When we stop indulging the fear mongers, we can see the value in people of all abilities. This will help us to visualize a true path to well-being for all.


Still Alice: Still Inspiring

By / Posted on March 6th, 2015

Heather Sawitsky, of White Oak Cottages, writes a moving piece about the movie, Still Alice.  White Oak Cottages are Assisted Living Green House homes where people living with dementia are creative, resourceful and whole.  By creating an environment that is small and warm, and where people are deeply known, The Green House model is a best practice.

still aliceStill Alice, a movie based on Lisa Genova’s novel about a linguistics professor who develops early onset Alzheimer’s, is now in wide release. For those who love people with the disease, and for those who are hoping to avoid this disease (which by my count includes everyone) the question is, “Why would anyone want to see this movie?”

The answer might be because the film adaptation is a poignant and dignified presentation of a disease that is usually described in ways that exaggerate its symptoms and stigmatize its victims. Or it may be because Still Alice presents the experience of the degenerative disease through the eyes of Alice, reminding us that a person with Alzheimer’s still strives for normalcy, involvement, and emotional connection. Or it may be because the wide-angle view of the film speaks to how all of us will need to learn to master loss: of physical abilities, loved ones, and sometimes, memory.

Julianne Moore, who plays the professor Alice Howland, turns in a masterful performance. Determined not to “make it up”, Ms. Moore spent months researching Alzheimer’s disease, speaking with clinicians, women with early onset Alzheimer’s, and family members. She also underwent the same battery of cognitive tests given to those with suspected Alzheimer’s. Her performance carries the film and has earned her an Oscar® nomination.

There is one other element that sets this film apart. One of its directors, Richard Glatzer, was diagnosed with ALS in 2011. There are many parallels between ALS and Alzheimer’s. Both are neurodegenerative diseases that slowly, incrementally rob a person of their abilities. With ALS, patients lose their ability to use their muscles, thus depriving them of their ability to walk, stand, use their hands, speak, and ultimately, breathe. With Alzheimer’s, people are slowly robbed of their ability to find words, remain oriented, practice their professions, and recognize their loved ones.

Still Alice is a powerful, but restrained look at one woman who is trying to hold onto her identity and her place in the world, knowing that each week she will be able to do something less well, but not knowing what the next loss will be. Richard Glatzer’s keen understanding of this terror and his determination to live a full life notwithstanding, help make this a film that will inform and inspire.


"Expect the Best!"

By / Posted on January 15th, 2015

My work often brings to mind my good friend and mentor, Nancy Fox. Nancy is Chief Life Enhancement Officer for Vivage in Colorado, was the first Executive Director of The Eden Alternative™, and has many years’ experience as an administrator and an educator. The lessons she has taught me pop into my head on many occasions.

In 2007, Nancy wrote a book called Journey of a Lifetime: Leadership Pathways to Culture Change in Long-Term Care (available at www.edenalt.org or online booksellers). The book lists ten important principles for enlightened leadership, illustrated by stories of good and not-so-good experiences she has had, and lessons learned. One of these is called “Expect the Best,” a principle that is ignored with alarming regularity in long-term care, on both the provider and the regulator sides.

Here is an example of each:

First, a recent McKnight’s article described a study in the upcoming issue of Geriatric Nursing that can only be described as what my friend Jane Verity would call “a blinding flash of the obvious.” This study of nursing homes in the US and Germany showed that CNAs had a much better work experience if they were notified of the deaths of their elders before discovering it for themselves (such as walking into a room to provide care and finding an empty bed). The study recommended “more mindful” approaches to such transitions for those who have formed close, caring relationships.

Wow. What’s sad about this study—even the need to conduct such a study!—is that it reveals how often we give lip service to honoring our hands-on care partners, but choose actions that say the opposite. Then we are quick to blame those same people for lack of a “work ethic.”

Look at your employee handbook and ask yourself, does this document expect the best of our employees? Does it treat them as responsible adults or as children (or worse yet, as potential criminals)? Then look at the actions and interactions of leaders and managers throughout the day. Are our care partners included in decision-making discussions? Do we ever ask for their opinions or advice?

Expecting the best creates two complementary results—it improves people’s abilities and their accountability. Nancy frequently says that “empowerment is not something you try; it is something you do.” When we approach those who support our elders with an expectation that they are capable of great wisdom and growth, we create an environment where growth can occur and wisdom will blossom. And by treating people as equals, we create an environment where people care about each other and about the consequences of their actions, and accountability thrives.

Such discussions raise the inevitable objection that there are people who will take advantage of your good intentions and try to game the system. Welcome to the planet Earth. The problem not that such people exist; the problem is that we write our policies and choose our actions based on the worst person we can imagine and punish everyone else with our low expectations, rather than addressing (or removing) the individual in question. Nancy would likely say, “Expect the best, (and individually address the worst).”

The second example was raised by Karen Schoeneman, formerly of CMS, in a recent culture change discussion that highlights this issue on the regulatory side. She was upset to hear that surveyors in her home state were not permitting elders to have refrigerators in their rooms because of the concern that a resident with diabetes could potentially enter the room and take something that would not be good for his/her diet.

There is so much wrong with that citation that I could devote an entire post to it. But let’s stick with “Expect the Best,” as it applies to surveyors. The fundamental flaw in our regulatory system, I believe, is that surveyors inhabit a primary identity as enforcers, rather than educators. Therefore, they come into the nursing home expecting the worst and constantly imagining “What could possibly go wrong?”

(Of course, Nancy added her two cents to the discussion thread as only she can do, suggesting that perhaps “surveyors shouldn’t be allowed to drive, because they might hit a diabetic.” If it’s possible to laugh and cry at the same time, that’s what I did when I read her comment.)

Incidentally—to be fair to surveyors—many of them work in states where they are required to be enforcers only, because the rules say that they cannot advise providers, only tell them if what they are doing is “in compliance” or not. Apparently the concern is that surveyors might lose their objectivity if they try to mentor the homes. And apparently the rule makers have never heard of school teachers, who mentor their students every day and still give them quarterly grades. If the regulatory bosses don’t expect the best of their surveyors, then a trickle-down effect at survey time is entirely predictable.

These are two examples of why I sometimes despair that our current system of elder care will never truly create well-being for anyone. There is far too much talk about “culture change” and too little evidence of it. Nancy Fox is one person who has always walked the talk. We would all do well to read, or re-read, Nancy’s book.


Music Can Be at the Heart of a Life Worth Living

By / Posted on January 6th, 2015

As a geriatrician, I’ve spent much of my time in the company of elders exploring life beyond adulthood. The shortcomings of our medical system to meet the human needs of elders as they navigate this uncharted territory are too numerous to list. Particularly when it comes to the way in which it treats people living with dementia. Of the 1.5 million people who have been institutionalized for medical problems, about 80 percent have been segregated from the general population because they are living with Alzheimer’s disease or dementia.

Because our medical system treats the trials of sickness, aging and changing cognitive ability exclusively as medical concerns, these people are too often tucked away from sight and treated with powerful psychotropic drugs. The treatment is not aimed at providing relief or a cure, but at making the patient more manageable – at the cost of hundreds of millions of dollars for drugs that provide limited relief and cause significant side effects.

For more than a decade, a handful of passionate organizations and advocates like myself have argued, and proved, that it can be different. Programs like The Eden Alternative, Ecumen’s Awakenings (http://www.ecumenawakenings.org), Anne Basting’s Timeslips (http://www.timeslips.org) and Dr. Al Power’s book “Dementia Beyond Drugs” demonstrate that non-pharmacological interventions for dementia provide meaningful benefits without the cost or the dangers of psychotropic drugs.

One of the most exciting of these new techniques is also the most elegantly simple – providing personalized music to people living with dementia.

The benefits of providing music to a person who has lost access to it include better memory, improved mood, decreased pain, increased engagement and enhanced well-being. Clinical studies demonstrate that it is possible for personalized music to have a greater effect than any medication.

Anyone who has doubts about the efficacy of personalized music can watch the technique graphically demonstrated in Alive Inside, the groundbreaking documentary on music and memory that is now available on DVD and streaming on Netflix.

I was honored to participate in the filming of Alive Inside with director Michael Rossato-Bennett. Time and again, Michael’s camera captured small miracles as life re-ignites in the eyes of people who have long been unresponsive after they are exposed to familiar, beloved tunes.

This simple, elegant film opens the door to a conversation about how we think about aging in general and about what we think makes a life worth living. For too long we have put the fate of our elders – our fate – into the hands of a medical system designed to focus exclusively on the repair of health and ignore what makes life significant. We’re not going to see music in the lives of every old person until we confront our own fear of aging and our own fear of death and demand a long term care system that does more than provide for safety and protection of elders. If we do that, we can build a society where nursing home means “nurturing” home. Where people go there to grow and live and love and laugh and listen to good music.

Music can be at the heart of the conversation about what makes a life worth living.


BBC Reporter Visits Penfield Green House homes in Rochester, NY

By / Posted on July 30th, 2014

I was contacted by Sally Magnusson, a news anchor from BBC Glasgow and author, whose parents were both pioneers in UK broadcasting. She wrote a book called, Where Memories Go, about her mother’s journey with Alzheimer’s; and she is now planning a book about Alzheimer’s and music. She contacted Dan Cohen (Music and Memory) to visit a home in NYC that’s using iPods, and he suggested she contact me, so she wrote to ask if she could fly up and visit during her trip.

We got together Saturday night to talk about my work on Dementia Beyond Disease and I had suggested that she visit Penfield Green House homes while she was in town. Green House guide, Kris Angevine and the elders/staff nicely accommodated us on Sunday morning for tea. We stopped at Malek’s, my favorite bakery, and got a couple of chocolate babkas, as well as bringing copies of my book for the homes.

When we arrived, Wendy Bacon-Stopani, one of the wonderful Shahbazim, was making a birthday cake, as well as some chicken cordon bleu for lunch. She explained the Shahbaz role to Sally and the collaborative nature of the work, with everyone pitching in to help out. Wendy said she wasn’t a natural chef, but had learned a lot at the home, and it showed!!

We sat at the dining room table sharing coffee, tea, and babka with several elders, including Lou, Martin, Don, Frannie, Marguerite, and Sarah. We shared stories, and we got a house tour from Dorothy who is a great hostess. Lexi, the new house dog also joined in the visit — what a wonderful dog she is!!

Although Sally’s original plan was to talk to the elders about their experiences with music, it was really just more of a social visit and a non-directed conversation. Sally found everyone to be delightful and loved the home. It was a whirlwind tour of innovation stateside, that will surely be remembered by this BBC reporter.