Green House Blog

Ashton Applewhite on Aging & Ageism

Given how the events of past 10 months have affected older adults, my colleague, Marla DeVries, and I looked at how ageism has played a role in why COVID-19 has had such a devastating impact on those who live in nursing homes.

A recent interview on the Elevate Eldercare podcast offers an important perspective on this tragic phenomenon. For the Christmas week episode, Green House Senior Director Susan Ryan sat down with Ashton Applewhite, an author and activist in the anti-ageism movement. In 2016, Ashton self–published This Chair Rocks: A Manifesto Against Ageism. The book has since been picked up by a publisher and sold worldwide. It has since been named one of “The Top 100 Best Books to Read at Every Age,” by the Washington Post and one of the “10 Books to Help You Foster a More Diverse and Inclusive Workplace,” by Forbes.

Among other things, Susan and Ashton examine how the longstanding practice of warehousing elders away in institutional, medicalized settings helped the novel coronavirus spread like wildfire among residents.

Ageism Exposed

Ashton’s impact on the anti-ageist movement is unparalleled. In addition to her book, she has done a TED Talk, spoken at numerous conferences (including our own in 2016), guest-starred in dozens of podcasts, and quoted in many media stories on the topic. When Marla and I recorded our recap episode, we were surprised that a manifesto is needed to combat negative stereotypes that have the potential to affect nearly the entirety of society. What’s more, I would agree with Ashton that aging is the most fascinating field there is, because if there is one thing all of humanity has in common it’s that we are all getting older each and every day.

In her discussion with Susan, Ashton notes that while the pandemic has not made ageism worse, it has exposed what’s been there all along. In fact, ageism is a “prejudice against our future selves,” as Ashton says in her 2017 TED Talk, which has been watched more than 1.6 million times.

Attitude Is Everything

In the podcast episode, Susan and Ashton talked about lifespan versus health span and how our attitudes toward aging affect how our minds and bodies function at the cellular level. When it comes to aging, she wants people to be fact-based rather than fear-based, because when we do that, we’re more likely to recover completely from severe illnesses and disabilities.

In other words, the goal needs to be about health, not about youth. And that health, as she said, is not binary. It’s really on a spectrum.

Get On Board

So how does one go about tackling ageism, you wonder? Well, there is a resource for it that Ashton helped to create. It’s a website called Old School, and it serves as a clearinghouse of “free and carefully vetted resources to educate people about ageism and how to help dismantle it.” The site includes blogs, books, articles, videos, and speaker information.

For more insight about Ashton and what she’s doing now, take a listen to her podcast episode below:

On Apple: https://podcasts.apple.com/us/podcast/ashton-applewhite-ageism-covid-19-grassroots-opportunities/id1524700411?i=1000503852177  

On Spotify: https://open.spotify.com/episode/6PnDdu7UKmlKe2XG4PXR5z?si=c-oE8VP1Tp2ddlmqGJHV6Q

On Stitcher: https://www.stitcher.com/show/elevate-eldercare/episode/ashton-applewhite-ageism-covid-19-and-grassroots-opportunities-80478859

Living with Early-Onset Dementia: A Story of Courage & Hope

After a career in telecommunications as well as serving as a member of the Rhode Island National Guard for over a decade, Mike Belleville was diagnosed with early onset dementia, at the age of 52. Although the news was devastating to Mike,  he has not let it define him.

Watercolor by M. Belleville
Mike Belleville has discovered a talent and love for watercolors since his diagnosis of dementia.

Since his diagnosis some seven years ago, Mike has become a strident advocate for people living with dementia. He speaks around the country in support of research and better understanding of the disease and he serves on several boards, including the Dementia Action Alliance

I first met Mike when he gave a keynote speech at our 2018 annual conference, and I have had the great pleasure of getting to know him more since then. So, when I had the opportunity to record a recap of our latest episode for Elevate Eldercare with my colleague Marla DeVries, I was delighted to get an update on his life.

True to form, Mike, who was joined by his wife Cheryl for the episode, offered his unfettered opinion about the importance of dispelling myths about people living with dementia and how the diagnosis has affected his life recently.

The Myths of Dementia

As Marla and I dive into the very compelling conversation the two had with Senior Director Susan Ryan, we have fun going a little deeper into something Mike calls the Four Myths of Dementia. And as he seeks to debunks many misperceptions about dementia, Mike himself is an example of someone who defies them: since his diagnosis he has become a very talented artist, chef, and public speaker.

In addition to the exploring the power of family and relationships, the couple explain how they found hope and tangible solutions on their journey. They also examine the need for caregiver support and respite, as well as the impact of the pandemic on routines, normalcy, and vital human connections.

We also take a look at a scene in one of his favorite movies, Shawshank Redemption, from which he draws inspiration and motivation for living well with dementia.

There is so much more about Mike to learn, just as there is about dementia. Get to know him better on our latest podcast episode below:

Avoidable: David Grabowski’s Take on the Pandemic’s Impact on Nursing Homes

COVID-19 has had such an impact on so many lives over the past several months that when you hear a well-respected researcher in long-term care say the impact could have been significantly reduced in nursing homes or AVOIDABLE…it makes you lean into the conversation and hear how he backs up that statement. And Dr. David Grabowski does back it up!

His insights and observations are part of the latest Elevate Eldercare episode. Marla and I thoroughly enjoyed listening to him and doing our recap podcast.

While I’ve only met David Grabowski once when he was doing research on the Green House model in 2013, he was so down to earth. But his current position as a professor of health care policy at the Harvard Medical School is impressive. He has dedicated his career to shaping policy and making a difference in the lives of elders. And what I really admire about him is that he’s not afraid to share his very candid and data-based opinions with those in governmental agencies that could implement change for the good.

“So, the reason avoidable was my word is that it didn’t have to be this way. And we know with greater preparation, with greater infection control, with testing, with personal protect equipment, with investment in direct caregivers, we could have really mitigated the spread of COVID in long term care facilities broadly, and nursing homes specifically,” he said “If we had made the investments early in this country to really put resources and attention into nursing homes, we could have avoided this huge outbreak.”

Dr. Grabowski was one of 25 people on the Coronavirus Commission for Safety and Quality in Nursing Homes. The results of that commission should be announced this month, and it will be interesting to see if the innovative suggestions he offers in the podcast are included in new policies or regulations.

You will be intrigued by the research he uncovered during this pandemic. Are you someone that thinks a 5-star rating automatically means fewer COVID cases?  That’s what Dr. Grabowski alluded to in his hypothesis. He said you would assume those homes with prior infection control problems, or low-quality care numbers would be where COVID hit – but that wasn’t the case. It didn’t matter if a nursing home was a one-star or five-star organization OR if there was a high Medicaid census. Tune into the podcast to find out what the determining factor really is when it comes to COVID.

And I really appreciate a researcher that readily admits when he regrets an earlier statement on an issue. Dr. Grabowski initially thought isolation for all elders was a good idea. Since those early months during the pandemic, he has come full circle on that issue. He says it’s not only COVID that kills, it’s isolation! AND he is very concerned about the exhaustion level for direct caregivers fearing that nursing homes will lose “the best of the best”.

Dr. Grabowski has so many unique nuggets of information in this podcast, I encourage you to listen to the original episode and then see what you think about the highlights that Marla and I share with you!


 

Disparties, Racism & Ageism Amid COIVD-19

The Elevate Eldercare podcast this week is most timely given the headlines concerning protests about social injustice in Wisconsin. Susan Ryan, Green House Senior Director, interviewed Karyne Jones, the president & CEO of the National Caucus and Center on Black Aging (NCBA). It was amazing the wide variety of topics they covered – everything from COVID-19 and the health disparities that exist among people of color to the devastating impact of social isolation, our shared humanity, and implicit bias.

For those of you are not familiar with NCBA they are the preeminent national organization on issues impacting African Americans age 50 & over. They have three areas of focus: employment, health and wellness and housing. I was struck by Karyne’s description of their mission to provide affordable housing and their philosophy with health and wellness. Many of their concepts match the work we do at The Green House Project. We want Green House homes to be available to all regardless of their ability to pay. We believe elders should direct the life they live in the home and the importance of their voice at the table. In fact, NCBA was established 50 years ago as a result of leaders from a few African American nursing homes who wanted the voice of black communities included in the creation of the Older Americans Act. President Nixon agreed and their successful participation in that work made them decide they should form an organization to address all kinds of issues that affect older African Americans and older poor people who want to improve their life – thus, NCBA was formed.

And while none of us like the pandemic, for Karyne and their organization it has shined a light on the health disparities for those in poor, racial communities. In terms of the issues around police brutality she explained that racism, – and classism are things they have dealt with over the years. The good thing now, she explained, is that people are asking NCBA for ideas, on how can they address the problems – and she said, “we welcomed that”.

Both Marla and I teach a class that discusses how important self-awareness and self-management are to each person. What are the biases we might have? What judgements do we hold? So, it wasn’t a surprise to me that Marla took at special interest in the discussion of implicit bias. It’s not a term we all use, and the information is good to have during these times, especially if you are looking to learn more about yourself. Marla shared information on a unique graph by a doctor entitled “Becoming Anti-Racist”.  Take a look at the graph and assess yourself. Be honest and take this opportunity to grow!

Karyne also talked about our need to help others and stated, “It’s our humanity to make sure that we help people”. To me that is such a beautiful phrase. What better feeling can you possibly have than when you offer your assistance to someone who could use your skills or talents – it’s such a wonderful gift. When you have one community suffering, she went on to say, it drains another community. There’s an opportunity for us to shift from being independent to understanding our interdependence of one another. Some might consider that a real paradigm shift for our humanity, to embrace compassion, to be empathic and support other people, I believe we are capable. I feel Shahbazim in a Green House home do it every day. They give to the elders and the elders give back. There is such a wonderful “interdependence” in the home.

One final word about NCBA – they have one awesome newsletter. Seriously, it is filled with such good information, it’s worth taking a look at it. Hope you’ll listen to both podcasts, Elevate Eldercare with Susan and Karyne Jones and Let Me Say This About That with Marla and me. Enjoy learning and growing!

How They Made the Mold

We had a trip down memory lane and the inside scoop from two innovative

The first Green House home in Tupelo, MS.

leaders on the most recent Elevate Eldercare episode. Susan interviewed the creator and founder of The Green House Project, Dr. Bill Thomas, MD, and the CEO of Methodist Senior Services (MSS), Steve McAlilly. MSS pioneered the first Green House homes on the campus of Traceway Retirement Community in Tupelo, Miss., in 2003.

It almost didn’t happen at Traceway. MSS had dedicated funds, to the tune of 12 million dollars, to build what would have been a pretty traditional facility. Emboldened by the vision Bill cast, Steve persuaded the board to take a leap of faith. We often talk at Green House about building the bridge as we walk across it. I guess that DNA harkens back to when Traceway “made the mold,” to quote Bill.

Among our favorite questions at Green House are: “Would you have it at home?” and “Would you do it that way at home?” These questions were birthed years ago as the Tupelo team wrestled through what should go into those first homes.

There is this constant pull between Real Home, a Green House core value and an institutionalized way of doing things, which we call institutional creep and often refer to it as the institutional dragon always lurking just outside the home. Bill said, “it is always, always, always easier to do things the usual way…. The pressure to conform to the traditional system is enormous and it never lets up.” But pushing the easy button doesn’t ultimately get us to how Steve describes Green House homes: “a vessel that enables life and living and loving and learning together.”

More than just a history lesson on Green House homes, the conversation moved us to consider how to not waste a pandemic. I love that Steve said, “It is a sin to not do as much as we can as fast as we can; the real sin is apathy. The sin is accepting the status quo and not acting to change it.”
The pandemic has shed a light on long-term care and rather than vilify “traditional” nursing homes we need to seize this moment to do something different. Both Mary and I resonated with what Bill described as, “big house, small life, small house, big life.”

When it comes to the deep knowing of elders, reciprocity, interdependence, building community, and autonomy and control, smaller is better. I think there is opportunity for any long-term care organization to consider how they might take bigger sections of their homes and make them smaller.

On our podcast I got to share one of my favorite books, “Community: The Structure of Belonging” by Peter Block. Whether you work in long-term care, are a part of a church, social group, or a neighborhood, there is application to you. Bottom line—we need to be intentional about creating community. It doesn’t just happen.

In 2008, Block wrote that we live in an age of isolation. That is even more true in this pandemic era. What Thomas, McAlilly, and Block teach us is that we can author a different future for our elders and for ourselves if we seize upon this opportunity to shift the paradigm once again.

For even more insights and takeaways, take a listen to the original interview and then join Mary and me for, “Let Me Say This About That.”
>>Listen HERE on Apple Podcast
>>Listen HERE on Spotify
>>Listen HERE on Stitcher








A Nurse Says, “Safety Third”

We could entitle the latest “Let me say This about That,” Nurse-Speak for Dummies as Mary Hopfner-Thomas, my co-host, and I (two non-nurses) unpack the conversation between two nurses, Green House Senior Director Susan Ryan and Tammy Marshall, chief experience officer at Thrive Senior Living. Tammy said, “There is a way of knowing that nurses have…that is unique to our profession…it is the gift of this time, because it is addressing the invisible needs of a person.” Their discussion, on episode 3 of Elevate Eldercare, echoes a guest column in McKnight’s in which Tammy said that nurses will see us through the pandemic. The focus of the conversation was not on the technical skills of nurses, but rather how to couple the technical skills with the human element—to see each person and support their individual needs, the task of nurses and non-nurses alike. 

Tammy Marshall, chief experience officer, Thrive Senior Living

As Tammy shared, COVID-19 has given us a magnifying glass and exposed the good things as well as the challenges in economics, leadership, long-term care, and basic humanity. 

Mary and I reflected on their conversation as a discussion in contrasts: Pathogenic vs salutogenic, adaptive vs technical leadership, and certainty vs ambiguity. I was fascinated to learn new terms from Tammy and then dive deep into the origins and applications in today’s world. Pathogenic is the treatment of the disease and it’s the most common way healthcare is delivered in our Western society. But Tammy reminded us that the U.S. is the most flagrant user of pathogenic model with regard to COVID-19. It would appear we keep using the same method and expect different results. Isn’t this the definition of insanity?

I was fascinated by Tammy’s mention of salutogenesis, so I did a deep dive into it. I learned that Microsoft Word does not recognize as a real word, as evidenced by the red squiggles appearing each time I type the word. Salutogenesis is defined as the “origins of health.” It was coined by Aaron Antonovsky in the 1979 book, Health, Stress and Coping. The chief question in the salutogenic model is “what makes people healthy?” Tammy answered this with a harken back to the basics of nursing a la Florence Nightingale: good nutrition, fresh air, sunlight, sleep, and movement. 

Mary was particularly struck by the simplicity and yet brilliance of this basic approach, and we agreed that a good question we can all ask is, “What would Florence do?” Imagine if long-term care providers approached care by seeking to answer the question, “What is the most healing environment for each elder?” and “How might things be different?” These questions move us into what Tammy described as “adaptive leadership.” It’s about asking the right questions and believing there is more than one right answer. It pushes us toward creativity. 

As Tammy described the steps she and her team took communicate with elders and staff, she noted that “we crave certainty.” COVID-19 has given us a lot of uncertainty and ambiguity. What is open or not open, how do we best stay safe, will schools open or not, should we or shouldn’t we do X, when will this end? I loved how Thrive Senior Living developed a compulsive communication strategy to give as much certainty as they could, with a measure of openness and transparency.

As part of our discussion on surplus safety, Mary and I shared one of our favorite Atul Gawande quotes from his book, Being Mortal: “We want autonomy for ourselves and safety for those we love.” As Tammy notes, safety needs to come in third, not first, as is the case in so many nursing homes. That discussion got me thinking—I’m blessed to be a grandmother to a wonderful almost one-year-old. A couple weeks ago I babysat her, and she crawled to her favorite end table with the coasters she loves to bang on the table. She was standing, but not quite an independent walker. She lost her balance, fell, and hit her toothless gums on the table. There was a looong silence before the heart wrenching wail. And there was blood. Never, ever, ever did I want I my precious granddaughter to experience pain or injury. But I do want her to walk independently, to gain confidence in herself, to know that if something happens, I will be there to love and support her. My job as grandma is to love her, foster her growth and development, and keep her safe. Safety third. 

How can we get more comfortable with that kind of an approach with elders? I know there are so many things about how the one-year-old and the frail 90-year-old are different. And yet, they, like all of us, may not be as different as we want to believe. In my opinion, safety third could be a gamechanger in long-term care. The Green House Project’s Best Life approach to supporting elders living with dementia calls this embracing the dignity of risk. 

On “Let Me Say This About That,” I introduced Tammy as a thinker and as someone who challenges me to think. She certainly delivered on that account and I hope Mary and I will likewise challenge you to think deeply about these important topics. In fact, you may want to go back the original Elevate Eldercare podcast and listen to the Susan and Tammy discussion one more time!

Listen to the podcast here:

Apple Podcast): https://lnkd.in/dxMNKrB

Stitcher: https://www.stitcher.com/podcast/elevate-eldercare

Spotify: https://open.spotify.com/show/6Exvwt070aeATvAC0uxFmo…

Marla DeVries is director of resource development for The Green House Project and cohost of “Let Me Say This About That,” the Friday Recap of the Elevate Eldercare podcast.

Dementia-ism, Grace, and the Value of the Outdoors

In our Friday recap of this podcast, “Let Me Say This About That,” Marla and I take a wonderful journey to further explore what Dr. Wright would like to accomplish. We discuss how he will use his voice and why we see his 25 years of experience as a way to help pave the path toward a better lifestyle for all elders.

A tragic and overwhelming loss of more than two dozen elders at a nursing home in Virginia due to COVID-19 propelled its medical director to use his voice to educate the media—and to crystalize his goals for a unique community designed for elders living with dementia. Dr. James Wright is that medical director. I believe you’ll be impressed by his passion and determination to set the record straight and his candid explanation that we live in “a society that feels that they can ignore their elders, warehouse their elders, especially those that are poor, especially those that have dementia.” Strong words, but he is ready to be the advocate that uses a devasting situation to significantly enhance the life of elders, especially those living with dementia. COVID-19 for Dr. Wright was a back-handed gift to provide that sense of urgency for him.

He has three distinct principles that guide his vision, and some may surprise you. Why would outdoors be on the list? And why might he suggest that federal/state surveyors, often the group of people who only seek out what is not being done correctly, be the group that should become mentors and guides to support the staff at nursing homes? Can you imagine welcoming surveyors to your community instead of being concerned about their arrival? Oh…and what about community integration at a community for people living with dementia? We are not talking about just childcare on campus, or a café, but what about a brewery and lots and lots of open acreage? Not what most would envision when thinking about a community to support the growth and care of elders…especially those with dementia. However, you might find yourself asking “Why not?” They are all part of Dr. Wright’s vision for the future.

In addition to exploring the meaning of grace, Marla and I delve into the devaluation of elders living with dementia. Dr. Wright, who also has a degree in theology (a nice combination for a medical doctor wouldn’t you say?), took time to explain how society values youth and power and undervalues the poor, the dependent, and those with dementia.  

As we examine the stigma of dementia, we discuss what Dr. Wright calls the last acceptable form of prejudice: “dement-ism.” 

So, grab some coffee or tea and take a listen to both podcasts. Episode 3 is the interview with Dr. Wright and episode 4 is the “Let Me Say This About That” recap that offers insights from Marla and me. I believe you will find it enlightening.

>>Listen HERE on Apple Podcast

>>Listen HERE on Spotify

>>Listen HERE on Stitcher

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.