Green House Blog

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.

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.








Dementia Action Alliance (DAA) Conference

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

It was a pleasure to be able to attend the DAA Conference in Atlanta last month. The Dementia Action Alliance is a non-profit national advocacy and educational organization striving to support people living with dementia to lead normal lives. One of the DAA’s goals is to educate about the stigma and misperceptions that are prevalent regarding people living with dementia. With that goal in mind, I was able to represent the Green House Project (GHP) in two presentations at the DAA conference.

GHP is partnering with Embodied Labs, an innovative company that uses virtual reality to develop educational experiences. Embodied Labs and GHP have collaborated on a making the Best Life Approach more meaningful by adding the virtual reality experience to the dementia training. I shared with the DAA Conference attendees this cutting-edge collaboration of virtual reality with the Best Life training.

Michael Belleville
DAA Advisory Board

I also participated in a panel discussion about the use of robotic pets and baby dolls in nursing homes with people living with dementia. Michael Belleville and I presented the view that interactions with real pets and real children provide opportunities for meaningful relationships that can’t be duplicated by robotic animals or dolls.

Miles – Green House Cottages of Belle Meade in Paragould, AR

We were pleased to be able to share the story of the joy that Miles, a dog who lives in the Green House Cottages of Belle Meade in Arkansas, has been able to bring to the elders there.








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.








Indiana Celebrates the Grand Opening of the Green House Cottages in Carmel!

While Elders have been enjoying living the Green House Cottages of Carmel for several months—the official Grand Opening ceremonies took place on August 25th img_2361

In May the first Elders in Indiana moved into the Green House homes…three are now open and when all six cottages are complete they will be home to 72 Elders.

The cottages are dedicated to care in three different areas: long-term, memory care and short term rehabilitation.  We welcome our new members to the Green House family of adopters and wish them much success!

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exterior-carmel-home

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Living the Good Life: Sharla Lee

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.
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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”.

 








Learn New Skills to Keep a Healthy Mind

Green House Homes are known for providing a healthy and stimulating environment to their elders. Meaningful life is key to the Green House Project’s mission. And now there is research to support the importance of intellectual stimulation as one ages.

The Association for Psychological Science conducted a study whereby 221 people, ages 60-80 were randomly assigned an activity to engage in, ranging from learning a new skill to participating in more familiar activities, to study the effects on one’s memory.

“Some participants were assigned to learn a new skill — digital photography, quilting, or both — which required active engagement and tapped working memory, long-term memory and other high-level cognitive processes.

Other participants were instructed to engage in more familiar activities at home, such as listening to classical music and completing word puzzles. And, to account for the possible influence of social contact, some participants were assigned to a social group that included social interactions, field trips, and entertainment.”

The results indicated that those who learned a new skill showed improvements in their memory.

“‘It seems it is not enough just to get out and do something — it is important to get out and do something that is unfamiliar and mentally challenging, and that provides broad stimulation mentally and socially,’ says psychological scientist and lead researcher Denise Park of the University of Texas at Dallas. ‘When you are inside your comfort zone, you may be outside of the enhancement zone.’”

THE GREEN HOUSE® Project strives to provide a home setting where elders can take part in any activity they wish, whether it be a familiar hobby or learning a new skill, to keep them engaged and living a meaningful life. So, get out there and take a photography class or learn to paint your surroundings, as it will have lasting effects on your memory.

Click here to read the full study.