Green House Blog

We Thought It Was Time for a Podcast that Elevates Eldercare: So We Made One!

The Green House Project has launched a podcast! It’s called Elevate Eldercare and we hope you will listen, as well as subscribe, so you can hear it each Wednesday and Friday on your favorite platform (Apple, Stitcher, or Spotify). On Wednesdays, Senior Director Susan Ryan brings enlightening,  Marla and Mary
provocative, and sometimes uncomfortable conversations with thought leaders who offer diverse perspectives aimed at elevating eldercare.

On Fridays, Director of Resource Development Marla DeVries and Project Manager Mary Hopfner-Thomas present “Let Me Say This About That,” a quick and witty recap episode that we asked Marla and Mary to explain here:

Marla: “Clifton Keith Hillegass is a hero of mine, even though I was unaware of his name until today (thank you Google). However, I was very familiar with his work. Clifton, a college graduate who worked at a campus bookstore in Nebraska in the 1950s, met Jack Cole, the publisher of the Canadian study guides, Cole’s Notes. Cole suggested to Hillegass that American students would welcome a U.S. version of his eponymously named publication. In 1958, CliffsNotes launched with 16 Shakespeare study guides. He sold 58,000 copies that first year.

“In the late 1980s CliffsNotes was a lifesaver to this high school student. I loved the bite-sized summary and identification of key themes. Certainly, there were times I didn’t read the original work, but often, oh okay, sometimes, I read the book and reviewed the CliffsNotes, as they helped me think through things on a deeper level.

“So, with a nod to Clifton, we are happy to bring you “Let Me Say This About That,” a CliffsNotes version of our newly launched Elevate Eldercare podcast. Each Wednesday, GHP Senior Director Susan Ryan brings us a captivating interview with a thought leader as they discuss relevant and often provocative topics. Each Friday, Mary and I highlight key aspects of the discussion; things that stick out to us as especially important.

“I love words and often look up their definitions, so you’ll likely hear me throw in some vocab review as well. We will also add in some additional facts, bits of our own research, and things we’ve learned in our combined 44 years in long-term care, such as key aspects of the Green House model and how they can be applied to other settings.”

Mary: “So, if you’re wondering why our Friday CliffNotes episodes are called ‘Let Me Say This About That,’ I can assure you it was not in the initial list of potential names: ‘Reflection Friday,’ ‘Rising Up,’ ‘Like It Is,’ and ‘In Our Words’ were among the contenders. For me, the title is all about passion concerning a topic. In fact, I am inclined to emphasize the words this and that for the title.

“My colleagues are well aware of how I use the statement when we are in a team meeting discussing options about a certain topic. I will start off by saying, ‘well, let me say this about that!’ And to be honest, often I say it with a little attitude. It’s my way of highlighting what I see as the issue and what I see as an option to improve the situation.

“When I emailed Marla to suggest it as one name for the podcast it was almost done in jest. Yet, now when I think about it the name resonates. The show reflects our passion about what hits in the Wednesday episodes, and we want to share that with our audience.”

Marla: “I don’t have the broadcast experience my friend Mary does. But my roots are deep in advocacy, cutting my teeth as a long-term care ombudsman. And I love how Susan describes the podcast as an opportunity to speak up and speak out about real issues. I hope we do that.

“Although we don’t have the answers and it’s not a polished, perfect presentation, we will raise the issues and wrestle through complicated topics. In addition, we will keep our eye on practical ways to take action, in ways that we might not only think differently, but also do differently.

“We will also have some fun along the way. Mary and I enjoy working together, we are quick to laugh, and we both have a passion for transforming eldercare—one person and one system at a time. We hope you enjoy, ‘Let Me Say This About That,’ and join us in wrestling through these timely, thought-provoking, and action-invoking issues.”

Listen to the original Elevate Eldercare podcast each Wednesday then join us on Fridays for “Let Me Say This About That.”

Listen here on Apple Podcast:
https://podcasts.apple.com/…/elevate-eldercare/id1524700411…

Listen on Spotify here: https://open.spotify.com/episode/53ldGsdYWxd6W6eD8xz4kx

Listen on Stitcher here: https://www.stitcher.com/podc…/elevate-eldercare/e/76428729…

The Art of Being a CNA Amid COVID-19

We asked CNA Corey Rotella to write about her experience caring for people amid the pandemic. Her response was so compelling that we also created a video of her account. Following is an excerpt of her writing followed by a link to the video.

Memory care has always felt like home to me. The work is more of an art than a science…the art of knowing. In order to give the best care possible, we have to know your people. This is true in every area of caregiving, but especially when working with those living with Alzheimer’s. As we time travel with them through their memories, it is by knowing them that we can best assess their needs. Are they night owls? Do they need more one-on-one time? Are they hot or cold-natured? Do they come from a big family? All information that can help us navigate through their reality and recognize sudden changes in behavior. It takes time, patience, dedication, and a good team that inspires trust between one another and between the staff and those in their care. It is every bit as rewarding as it is challenging. I love what I do. It can be backbreaking and at times heartbreaking but it is never empty.

Working on a memory care unit where consistency is a vital component to the mental and emotional well-being for those in our care has become uniquely challenging. No visitors, no outside activities, eating meals in their rooms in an attempt to maintain some level of social distancing, and taking temps and checking the O2 stats each shift are all new rules being implemented as much as possible in an attempt to keep our residents safe and healthy.

The problem is, as well intended as these rules are, they come at quite a cost, and caregivers in most facilities are not being given the added support needed to fully and adequately implement these policies.

Isolation is not good for people living with Alzheimer’s. My residents are naturally out of sorts. Without daily interaction and mental stimulation, combative behaviors are becoming more commonplace. Sleep schedules are off because when there are no regular activities, many of my folks are sleeping more in the day and staying up through the nights. Fall risks are increasing. I have much less time for one-on-one interaction. The normal troubles in the long-term-care system have suddenly all been exacerbated and none of us have had time to process it. The end result is what we are seeing play out in the news.

COVID It is running through our nation’s facilities in a terrifying way.

It is hard not to feel powerless. It is hard not to feel resentment at our low pay. It is hard not to feel fear because for us there is no way to do our job well with any kind of distance, social or otherwise. It is easy to get lost in all of those dark thoughts and to begin to wonder if you are doing any good at all. So much of it feels like we are sticking fingers in the holes of a dam.

The greatest frustration for CNAs is that we don’t feel heard. We advocate for those in our care. We know when they are off. We know what does and doesn’t work on the halls and too often this knowledge is ignored or brushed aside. In a crisis, there is nothing more important than clear communication and timely action. We need support. We need supplies. We need adequate staffing. We need to know we are not in this alone.

This pandemic cannot be treated as business as usual. Our career will always involve loss. We caregivers know that as difficult as it can be, death is a part of the job. We are there to assist our people in the last stages of their life. We hold their hands, comfort them, try to protect their dignity and improve their quality of life as they walk through their final years.

This disease is a different kind of beast. We live with the knowledge that we could transmit it easily to those in our care. We know we can take it home to our family. We know that the likelihood of us not being touched by COVID-19 in some way is slim to none. The psychological toll that takes is difficult to express.

For me, it hits in the quiet hours when I’m not at work or when I see what is happening in the facilities across the nation. It is incredibly sad and frightening, but it is not surprising. Facilities were not prepared for a situation like this. Caregivers are an untapped resource with a wealth of knowledge that could help management understand the best ways to calm the residents and make this difficult time at least a little easier for all involved.

All it would take is for those in charge to listen.

Here is a link to a full audio version and video of Corey’s response: https://youtu.be/fzDuFmHdY_o.

Rotella is a writer and certified nursing assistant (CNA) in the memory care unit at Champion’s Assisted Living in Wilmington, N.C.

Awe and Gratitude Amid COVID-19

Audrey Weiner
Audrey Weiner
Former President & CEO
The New Jewish Home

On behalf of the entire Board of Directors, Vice Chair Audrey Weiner delivered some very heartfelt remarks to Green House partners last week as they gathered virtually to share updates about their work during the COVID-19 pandemic. We thought her very eloquent words were worth sharing with everyone, as her message applies across all of senior living:

“First, good afternoon or good morning to each of you. And many thanks for taking time out of your day. Each day, I am sure, is becoming increasingly more complex for each of you.

“My message, on behalf of the board of directors, is really a very simple one. It is one of awe and gratitude to each of you for all that you are doing.

“While we have all lived through uncertainty and crises, hurricanes and tornadoes, horrible fires, economic downturns, blackouts and civil unrest, September 11th, flu, SARS, H1N1, and for some, the AIDS crisis, nothing in my view has prepared us for this pandemic. We are simultaneously desperately wanting to do the right thing for elders, the individuals who work in our organizations, our volunteers, and the community, while also being concerned about our families, knowing that the demands across communities are extraordinary and complex.

“In some cases, some of you have parents who are older and in at-risk groups. In other cases, you have children who are concerned that you are going to work every day and what you might bring home. There are new babies, new grandchildren, and every day, greater unknowns.

“There are the realities of supplies, concerns about the shortages of medications and antibiotics, challenges in physician visits, challenges in providing rehab, and attempts by government to do the right thing around telehealth, testing, and survey. There are heartbreaking stories about visitors restricted amid moments of death.

“But what is clear to me is that the values of The Green House Project, the ways in which living, care, and relationships are structured in Green House homes, provide what seems like the strongest framework for the best outcomes.

“As I read about nursing homes around the country, especially in the state of Washington, and the surprise on the part of the press that staff are rotating throughout facilities, the issue of inadequate staff, staff working in multiple facilities and multiple shifts, I wonder if anyone has really been listening to the concerns about providing the best possible care of elders.

“I do hope, on a macro level, that there are lessons we will learn as part of this pandemic, and hopefully there will be lessons that allow us to strengthen the long-term care system not only in America, but around the world.

“So, I end where I began, which is with awe and inspiration for all you are doing every day and how you are juggling myriad responsibilities. On behalf of the board, we are endlessly grateful for your intellect, your heart, your inspiration, and your values.

“Please know that we want to be there for you in any way we can be helpful. Above all, please do try to take time to care of yourselves.”








Dementia Care: Reminiscence versus Real

A senior housing operator approached me recently about endorsing his

Anne Ellett, NP, MSN, Dementia Specialist

new memory care development. It sounded lovely—he said it was designed to feel like a neighborhood—the residents living with dementia could wander down the street to visit friends and partake in different activities going on throughout the neighborhood. He spoke of the effort and expense put into the design with the goal of offering the residents more choice and access to real experiences.

When I visited, however, it felt a little eerie. It wasn’t a street, but rather an indoor lobby and hallway area with facades from the 50s and 60s. Bobby Darin’s “Mack the Knife” played over the hidden speakers and there were framed posters of Jackie Kennedy and Dean Martin on the walls. Residents could wander from the old-fashioned soda counter to the baby-doll room with bassinets and doll clothes to the plastic bowling pins set up at the end of the hallway. Pretend mailboxes were placed along the hallway.

Residents were playing pool, and few more sat around watching them. Female residents were encouraged to go into the doll room and hold the dolls or write postcards to put in the mailboxes. The tour guide said that the families were thrilled there was such a nice place for their loved ones with dementia to live.

While I can appreciate the desire to create a nice environment for people living with dementia, I challenge us to spend our time—as well as creative expertise and even money—toward offering real experiences and real life.

If we offer props or facades of the real thing, aren’t we assuming that a person living with dementia won’t know the difference? That they are incapable of participating in real relationships and real experiences? What if we instead invest our time and financial resources toward offering real life—wouldn’t that offer more dignity?

There is a lovely video of a memory care community in Australia known as Starrett Lodge. This short film, entitled, “Finding the Why; Enabling Active Participation in Life in Aged Care,” shows great examples of real experiences and real engagements for people living with dementia.

I hope you’ll take a few minutes to enjoy it: https://youtu.be/hZN1CyEiFNM.

If you are interested in hearing more about this topic, I will present a webinar that addresses the issues of “real vs. fake” on April 9 for The Green House Project. You can register for it here: HERE.

Let’s offer real life, and the belief that people living with dementia can participate, can contribute, and can enjoy real experiences.

Anne Ellett, NP, MSN

Medication, Dementia & the Crucial Need for Advocacy

Nuedexta is used by physicians for the off-label treatment of "behaviors" associate with dementia.
Avanir will pay $96 million to resolve federal False Claims Act allegations that it paid kickbacks and marketed Nuedexta for the off-label use of treating “behaviors” associated with dementia.

We’ve all seen it—the elder who moves into a nursing home or assisted living with a list of medication as long as your arm. As the nurse who would often do the admissions, I would look at this older, frail person, see their lengthy medication administration record (MAR) and wonder how they could swallow all those pills.

Had anyone ever considered whether these pills were doing more harm than good? Had any health professional along this person’s journey through the healthcare system really looked at themas a person? What’s more, had they seen their frailty, confusion, weight loss, depression, and frequent falls and wondered if all or some of their medications could be implicated? Did anyone care?

A recent story in McKnight’s Senior Living illuminates this issue and begs the question, “Where is the advocacy for people living with dementia (PLWD)?” The article describes how pharmaceutical company Avanir recently agreed to pay $96 million to resolve federal False Claims Act allegations that it paid kickbacks and marketed its drug Nuedexta in long-term care communities for the off-label use of treating “behaviors” associated with dementia.

This case highlights just how vulnerable PLWD in long-term care are to the misprescribing of risky medications. Avanir pharmaceutical company marketed the drug to long-term care as an alternative to the use of antipsychotics for PLWD.

In long-term care, where the most frail, vulnerable elders often spend the last part of their lives, there are policies and procedures in place that are meant to ensure their safety and maximize their health and wellbeing. They are there to be taken care of, right?

But who is there to protect them—to advocate for them—when huge pharmaceutical companies target them with risky medications, never meant to be ingested by someone who is frail and older?

According to McKnight’s,“in one example of the impact of these strategies, the government alleged that an Avanir employee reported that one doctor, who was also a paid speaker for Nuedexta, had ‘entire units’ of patients on Nuedexta at the [long-term care] facility where he worked, which contained a large number of dementia patients with behavioral issues.”

Neudexta is a medication approved for patients with PseudoBulbar Affect (PBA), a condition that causes sudden, frequent, and uncontrollable outbursts of crying and/or laughing. PBA is a very uncommon condition that can occur in people with certain neurological conditions. Alzheimer’s and other dementias are not related to PBA…and of course, Nuedexta is a very expensive medication. Public websites list the price of 60 capsules of Neudexta at over $1,200!

I remember very well when Nuedexta was being pushed to help people living in memory care communities. With the focus from the Centers for Medicare & Medicaid Services to decrease the use of antipsychotics, marketers for Nuedexta claimed it could solve the problem of excessive use of antipsychotic drugs and help keep the elders with dementia “calm.”

In the Best Life approach to dementia care, we talk about the imperative for advocacy.

Where were the advocates for all the elders who received prescriptions of Neudexta?

We can do better!

Anne Ellett is a dementia specialist for The Green House Project (GHP), an organization that seeks to radically transform nursing homes by partnering with aging services providers to reinvent care and empower the lives of people who live and work there. Anne created GHP’s Best Life dementia care initiative, which builds on the organization’s core values of meaningful life, empowered staff, and real home.








Transforming the elder experience

Resident and caregiver at Jewish Home Assisted Living in River Vale, NJ (Photo: Jewish Home Family)

Following is a repost of a blog by Carol Silver Elliott as it appeared in the Times of Israel on July 8.

What if we viewed elders as individuals with value and purpose? What if we stopped, as a society, seeing older adults as “them,” as people who are “less than” and who have little to contribute? How would that change our perception of older adults and how would that change our view of our own lives as we all, inevitably, age?

That’s the underlying premise of The Green House Project, an organization that’s been in existence for more than 15 years and whose goal is to transform care of older adults. Green House was founded by Dr. Bill Thomas, a geriatrician, who realized early in his career that the care we provide for elders can be radically different and radically improved.

Dr. Thomas began the Eden Alternative, bringing plants and animals into long term care settings, based on a theory that having something to look after and care for would have a positive effect on the residents. It did. But that was not the full answer. Dr. Thomas developed the concept for Green House and today there are hundreds of Green House homes across the United States and internationally.

Green House homes are founded on three core values, real home, meaningful life and empowered staff. Each of these play a role in making the most critical element work—creating a non-institutional, normal environment for elders, an environment that is not “homelike,” rather, it is home.

Last week I had the opportunity to attend a five day educator program provided by Green House. It’s a program called “core training” and it is something that every staff person who works in our organization will receive. The program was held in a new Green House development in Arkansas so we had the gift of both spending the week in an actual home that has not yet opened and visiting elders who live in the homes on that campus that have already opened.

While there was a lot of learning during that week (and a nearly 700 page teacher guide that we will use as we teach it), what really resonated with me is the understanding that this philosophy is not an “add on” or a “tweak” to what we do and what we provide. It is full immersion, it is changing the way we interact, think and approach elders.

To really create normal life for those who live with us, we must always remember to focus on strengths rather than disabilities. When we focus on what someone can do rather than what they can no longer do, it changes the equation dramatically. And that applies in every area from activities to care to dining and so much more. Giving people the opportunity to make choices, express themselves and enabling independence as much as possible, that’s one key elements that creates real home.

This is not an “add water and stir” approach, it’s not easy and it will be a major change in behavior and mindset for many of us. But talking with the elders who live in Green House homes, as well as the staff who work with them, one thing is clear. The results are worth the effort. The elders who live in these settings and can articulate it, told us about quality of life.  They told us about feeling comfortable and at home, about the staff who felt like extended family, about the choices they were able to make about every aspect of their lives, about the family members who came to visit and felt as welcome as if they were still visiting them at home in the community. The staff echoed similar sentiments, the satisfaction of deeply knowing the elders with whom they work, the joy of being able to see and treat people as individuals and not room numbers or diagnoses, the ability to create “normal” every day.  And those elders who can no longer use language as they once could, shared their feedback through the peace in their faces and the comfort they clearly found in the soothing environments of their home.

Maya Angelou wrote “Do the best you can until you know better.  Then when you know better, do better.” Those words have great meaning as we begin this transformational journey. They have great meaning as we think about the care we provide to elders and the possibilities. We can do better as caregivers, as families and as a society to remember that our elders are not “them,” rather that they are still an important part of “us.”

Carol Silver Elliott is president and CEO of The Jewish Home Family, which runs New Jersey’s Jewish Home at Rockleigh, Jewish Home Assisted Living, Jewish Home Foundation and Jewish Home at Home. She joined The Jewish Home Family in 2014. Previously, she served as president and CEO of Cedar Village Retirement Community in Cincinnati, Ohio. She is chair-elect of LeadingAge and past chair of the Association of Jewish Aging Services.

Here is a link to the original blog post: https://blogs.timesofisrael.com/transforming-the-experience/

 








A New Chapter Begins

When Mississippi Methodist Senior Services opened the first Green House homes in Tupelo, Miss., back in 2003, we really believed that they would be game changers in the field of aging services. But we had no idea at the time that some 15 years later, the movement to deinstitutionalize nursing homes and humanize care for elders would sweep the globe.

McAlilly is chair of the Center for Innovation, The Green House Project’s umbrella organization.

With some 284 homes built in 32 states, and many more on the way, The Green House Project (GHP) can rightfully claim its position as the leader in small-house design and person-directed, relationship-rich living.

As one of the original pioneers of those first Green House homes, I am proud to announce that I have recently taken the helm as chair of the Center for Innovation (CFI), the umbrella organization of GHP. My election to chair of CFI is joined by the addition of nine new board members, comprising a “dream team” of experienced and talented senior living leaders who are poised and eager to take this movement to the next level.

The collective passion and dedication of the new board is palpable as we look forward to the next 15 years and beyond. Together with a stellar GHP team of staff members, we will continue to build bridges, foment revolution, and spread innovation in new and better waysAt our initial board meeting last month, you could feel that this group of people were ready to help write the next chapter of this story!

The expansion of our board of directors is part of a recently launched initiative known as Green House 2.0, which encompasses a host of innovative partnerships and efforts designed to improve the lives of people at many ages, abilities, and levels of care.

Among these endeavors is Best Life, GHP’s approach to help organizations support people living with dementia (PLWD) to live rich and rewarding lives. The tools of Best Life are available to memory care, assisted living, and nursing home communities as standalone education and training.

On GHP’s reenergized website you will find more details about Green House 2.0. I’m sure you will find that we have a lot going on—all with the intention of making long-term and post-acute care better for all people. I invite you to take a spin around the site and let us know what you think.

As this effort launches over the coming days, weeks, and months, I hope you will consider joining us in our movement to eradicate institutional models, destigmatize aging, and humanize care for all people.

 

Steve McAlilly is the president and CEO of Mississippi Methodist Senior Services in Tupelo. He led the development and opening of the first Green House Home in 2003.








Let’s Keep It Real!

Anne Ellett, N.P., M.S.N. Dementia Specialist

A neighbor of mine, recently diagnosed with dementia of the Alzheimer’s type, has shared with me that he hardly ever leaves his house anymore, because he doesn’t want anyone to know his situation.  How heartbreaking this is for him and illustrates the powerful stigma that is associated with dementia.  This is a man who developed and managed several successful companies and has the reputation in the business world as a “take charge” kind of person. Now he’s hiding in his house…

What’s his fear?  He held my hand and said, “ I don’t want to be treated as a child.”

The stigma attached to dementia is real and has emotional and social implications.  Within just a short time, my successful, confident neighbor has lost his self-esteem and is fearful of the judgement of others.  The stigma and devaluation that is associated with dementia can be paralyzing, as witnessed by my neighbor’s fears and abrupt change in his social interactions.

Facing stigma is often a primary concern of people living with Alzheimer’s and their care partners. Those with the disease report being misunderstood because of the myths and misconceptions others have about the disease. https://www.alz.org/help-support/i-have-alz/overcoming-stigma

One of the most common myths and misconceptions about the diagnosis is that people become “child-like” or retrogenesis (aging in reverse).  Of course, this isn’t possible and an adult with the diagnosis of dementia is and always will be an adult, with their full history of accomplishments and talents as part of their identity.

What can we do to help counteract this stigma which marginalizes PLWD and assumes they’re “unable”?

At the Green House Homes, we strive to decrease the stigma and devaluation of PLWD and treat them as adults – not children.  We can approach them as adults and involve them in adult activities.  Relate to them as adults, not children, and don’t assume they “don’t know”.  How often I hear from nurses and physicians that  “They won’t know the difference.”

On a recent tour of a nursing home, I witnessed a group of female residents, all PLWD, being handed baby dolls out of a basket that was being passed around.  Some of the women tried to cradle and rock the dolls while others appears uninterested and left them lying in their laps.

The distribution of the baby dolls I’m sure came from the staff’s good intentions to engage the women and also comfort them.  But the vision of the women being handed out baby dolls seemed like a real example of reducing their abilities to child-like levels, while assuming “they won’t know the difference”.

If a PLWD has always been a doll collector and that is part of her/his story, it would be so fitting to surround them with their doll collection. But if a person does not have that history, why offer them a doll, a “fake” baby?  Is the assumption being made that they won’t know the difference? Is the assumption being made that they don’t have the ability to respond or have a relationship with a real baby?

Investors are developing more and more almost real baby dolls and robotic pets to comfort and distract PLWD.  I am frequently asked to endorse and introduce these life-like dolls and pets to the PLWD that I work with.  I can’t do that, because the image of a group of PLWD holding plastic dolls immediately speaks to their inabilities and losses.  Anyone can look at a group of grown women being handed out dolls and think, “These aren’t capable adults, why would they be holding dolls instead of real children”?

One ability that PLWD retain is the ability to have real relationships.  Yes, a PLWD might respond to a doll or robot, but just watch them with the real thing!  The interactions, the feelings, the real relationships are evident and powerful.  When someone tells me, “But she loves her doll!”, I say, “She’ll love a real child even more.”

So if we want to comfort and engage PLWD, why would we offer fake babies and pets? More and more care centers are partnering with children’s’ play groups and preschools to have regular interactions.  PLWD can provide warmth and real love to the young children.  And many places now have dogs and cats who reside with the PLWD, offering opportunities for real interactions and purpose.

As a professional working with PLWD, I remind myself to focus on retained abilities and talents of a PLWD, not on their losses. And to always be mindful that I never want to treat them as children or in any way devalue them.

Let’s bring real children, real pets to PLWD and watch real relationships develop!








The Awfulness of the National Institute on Aging’s ECT Study

Anne Ellett, N.P., M.S.N. Dementia Specialist

I was deeply distressed to learn that the National Institute on Aging (NIA) is sponsoring a trial for the use of electroconvulsive therapy (ECT) for people living with dementia (PLWD) who exhibit severe aggression and agitation. Not only that, according to a press release on the website of one of the participating organizations, the study is touted as the “first randomized, double-blind, controlled study of ECT for agitation and aggression in Alzheimer’s dementia,” which means that it will compare ECT against other “standard therapies” such as antipsychotic medications and behavioral therapies.

This is inhumane and unacceptable, and I join many other professionals in our field who are also appalled by this study, which is funded by an $11.8 million grant.

I believe there are several factors behind the approval of this “treatment” by NIA. Let’s start with the term “behavioral and psychological symptoms of dementia,” or BPSD. BPSD refers to the actions of PLWD, such as confusion, aggression, anxiety, refusal of care, etc., as “symptoms” due to their diagnosis of dementia. And if actions are considered symptoms, then this provides validation for medically treating these symptoms, because it allows for symptoms to be considered hallmarks of a disease state.

I’ve been a nurse for many years, long enough to remember when we responded to actions of PLWD such as confusion or aggression by tying them to their bed or chair. That was acceptable nursing practice! I can be grateful that we’ve moved beyond that…or have we?

The first-line medical treatment for “behaviors” has been the prescribing of strong antipsychotic medications. Unfortunately, even when the FDA came out in 2005 with a “Black Box” warning about the risks of prescribing these medications for PLWD, their usage has increased. In an attempt to decrease the use of these risky medications, the Centers for Medicare & Medicaid Services (CMS) now requires documentation of non-pharmaceutical interventions prior to prescribing antipsychotics, in addition to informed consent.

Even though CMS has established a goal of continued reduction of the usage of these prescription medications in nursing homes it is still common for PLWD to receive these medications.

PLWD are often devalued and stigmatized by both the public and professionals. Once diagnosed, they are perceived as unable to participate in decision making, expressing their needs, and often are considered child-like.

Therefore, when PLWD express their preferences by trying to leave where they have been assigned (known as eloping), or resist care by someone they don’t know, or cry because of loss of meaningful and significant relationships, their actions are seen as symptoms of a disease, rather than communications.

What if we considered their actions as personal expressions, or as unmet needs instead of symptoms to be diminished by medications or other treatments? What if we looked at what is going on in their environment and also at their personal histories and put together a plan for interactions that could be meaningful for them?

Strong antipsychotic medications that were never meant for use among older adults, and now ECT therapy? Let’s stop the use of the term BPSD and instead start discussing what are the unmet needs and challenges of the PLWD.

Kate Swaffer, a well-known dementia advocate, and a PLWD, expressed her fears about this study and said, “ECT is surely just another form of RESTRAINT?????” (emphasis is hers.)

As professionals and family members, if we continue to dismiss normal human actions (Wouldn’t most of us resist intimate care if we didn’t know the person? Wouldn’t most of us be looking for a door to exit if we didn’t know where we were?) as symptoms to be medically treated, we are denying PLWD their ability to communicate and express their needs.

If actions are labeled as “out of control” or aggressive, without determining what someone with PLWD is attempting to communicate, we have pathologized normal human actions.

 

Anne Ellett is a dementia specialist for The Green House Project (GHP), an organization that seeks to radically transform nursing homes by partnering with aging services providers to reinvent care and empower the lives of people who live and work there. Anne created GHP’s Best Life dementia care initiative, which builds on the organization’s core values of meaningful life, empowered staff, and real home.








Green House Represents at Pioneer Network Conference

The Green House Project showed up in a big way this year at the Pioneer Network annual conference in Denver, Colo., where senior leaders presented three breakout sessions and a tour of the local Green House homes was sold out.

Green House Senior Director Susan Ryan teamed up with Lisa Czolowski, CEO at Hover Community (which recently broke ground in Longmont, Colo.), and Jennifer Vecchi, principal at Vecchi & Associates, to present on transforming the looming workforce crisis into an opportunity for career enhancement. This subject was especially relevant in light of the shrinking number of qualified workers to fill healthcare positions.

Green House Project Guide, Claire Lucas shared her knowledge on The Green House Project’s success in utilizing Sages—volunteers who act as coaches and advisors for Shahbazim. As leaders across the country grapple with staff retention, Lucas suggested that this model of using volunteers to support staff transcends the Green House model and can be utilized successfully in any healthcare organization.

Debbie Wiegand and Rob Simonetti, design director at SWBR, a design and architecture firm, spoke about the benefits of small-house architecture and design, sharing 15 years of experience.

In addition, Pioneer Network attendees participated in an onsite visit to the Green House Homes at Mirasol in Loveland, Colo. The sold-out tour gave attendees the opportunity to gain firsthand experience in how Green House homes can make a difference in the lives of its elders and staff.








Ryan Addresses International Alzheimer’s Conference

Photo credit: LaCour Images

Being seen goes deeper than recognizing the visible attributes of a person. When a person is truly seen their inner complexities shine and all labels associated with them (such as Alzheimer’s disease) are shed. Their preferences in everyday life are understood and their uniqueness is honored.

This was the message that Susan Ryan, The Green House Project senior director, brought to the stage at the 33rd International Conference of Alzheimer’s Disease International (ADI), held July 26-29th in Chicago, Ill. Ryan delivered a keynote presentation and participated in a panel discussion with the goal of ‘power washing’ conventional thinking in today’s dementia care.

The Alzheimer’s Disease International Conference is the the longest running and one of the largest international conferences on dementia, attracting delegates from around the world. Ryan was among a range of international expert speakers, making up a unique program that enables participants to learn about the latest advances in the prevention, diagnosis, treatment, care and management of dementia.

The concept of being seen (#SeeMe) applies especially to a large percentage of people living in long-term care settings, who are defined by their diagnosis of dementia. Their diagnosis assigns them a label that emphasizes what they can’t do and what’s been lost. Ryan’s message was a call to destigmatize and humanize those living with dementia, in order to see the whole person first.

To see this in action, Ryan encouraged the audience to take a deeper look at how the symptoms of dementia are presented to the outside world. She noted that the Behavioral and Psychological Symptoms of Dementia (BPSD) is a term used to describe the following “symptoms” that occur in people with dementia: agitation, aberrant motor behavior, anxiety, elation, irritability, depression, apathy, disinhibition, delusions, hallucinations, and sleep or appetite changes. According to a 2012 study in the Frontiers of Neurology, about 90 percent of people with dementia have BPSD. Ryan noted that while this finding is not surprising, it is presented in a way that categorizes people with dementia even further.

Instead of following common thinking, Ryan said, what if instead the finding was that 90 percent of people living with dementia will find themselves in a situation where their well-being is not adequately supported? Attendees were encouraged to take it a step further and think through how this revolutionary way of thinking would change the way that providers and other stakeholders “#SeeMe.”

The good news is that this is already happening, Ryan noted. The Green House Project has developed Best Life, a memory care program that is built on the initiative’s core values of Meaningful Life, Empowered staff, and Real Home. Best Life is a process to transform the paradigm and defy the stigmas associated with dementia, she explained.

Ryan concluded by imploring her international audience to “lead the way, address the stigma surrounding dementia, and support caregivers with the skills to see each elder as a unique individual, and to connect them to a meaningful life.”








St. John’s Selects Vice President of Skilled Services: Nate Sweeney

The Green House Project Team congratulates Nate Sweeney on his new position with St. John’s!

Rochester, NY via The Post Aug 22, 2018

St. John’s recently announced that Nate Sweeney joined its team as vice president of skilled services.
Sweeney is bringing 17 years of experience in the health care industry, with nearly a decade spent in long-term care.
Sweeney will lead St. John’s skilled nursing operations and focus on developing a nonmedical model of long-term care through advancement of organization directors, processes and culture. He will be responsible for supervising and developing the clinical and administrative businesses of skilled services including Penfield’s Green House Homes, St. John’s main campus of 400 residents and its medical-day program.

St. John’s Penfield Green House homes in Rochester.

“We’re confident Nate’s track record for strong leadership, experience, innovation and passion is a great match for our organization and team,” St. John’s President and CEO Charlie Runyon said. “Under Nate’s leadership, St. John’s will continue to advance its mission and evolve our services to provide the highest quality of care for our residents.“
Sweeney has extensive experience in the health care industry, specifically with exploring and operationalizing new models of care.  Most recently, he served as executive director of the LGBT Health Resource Center of Chase Brexton Health Care in Baltimore. There he spearheaded the development of a new division in the organization that focused on resource development for the community, training and education for medical and social service providers and direct community programming.
Prior, Sweeney spent five years with the Catholic Charities of Baltimore where he drove two major changes for the organization. First, he worked with its nursing home, The Neighborhoods at St. Elizabeth, to change the culture of long-term care from pure medical to one focused on its residents. Next, he led the effort for the licensing and opening of The Harry and Jeanette Weinberg Green House Residence at Stadium Place, a program of Catholic Charities and a Green House Home.
Sweeney earned his master’s degree in management of aging services from the University of Maryland Baltimore Country and his Bachelor of Arts in education from University of Illinois. Outside of the office, he serves on the LGBT Aging Issues Network Council for the American Society on Aging. Sweeney resides in Rochester.

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