Green House Blog

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

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

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.








The Wall Street Journal Investigates: How Does Dementia Impact Health-Care Spending?

Researchers from the Rand Corporation recently published a study that found medical costs of treating dementia totaled $109 billion in 2010. This is more than was spent on heart disease or cancer! What can be done now to slow increases in expenses and improve care? The Wall Street Journal Real Time Economics Blog highlights the financial impact of The Green House model:          

RWJ and a nonprofit, NCB Capital Impact, have also funded the Green House Project. Each Green House accommodates 10 to 12 seniors with medical help provided by certified nursing assistants.

David Farrell, The Green House Project director, says the small homes allow for less administrative costs and allows residents to remain ambulatory, even with a walker, rather than depending on wheelchairs.

Plus, the nursing staff develop a closer relationship with a small number of [Elders]. “The [CNAs] can pick up on subtle changes in the elderly,” which leads to preemptive care rather than medical emergencies, Mr. Farrell says. 

In a Green House home more money is spent on care and less on administration.  The Elder to staff ratio makes for better care and less hospitalization of Elders.  To learn more, read about The Green House Project’s cost saving summary.  Read the full Wall Street Journal article here or learn more about The Green House model.








Rhythms of the Day, Evening Time

Sometimes it’s not as complicated as it seems.  Sometimes it just takes a closer look at a situation and the solution might not be as challenging or impossible as we may believe.  “Sundowning” has long been a complicated issue for those who care for the elderly.  It is the term used to describe agitation, irritability, disorientation that some people with dementia experience during the late afternoon or evening.  But is it the dementia that causes the “sundowning”?  Eden Mentor, Dr. G. Allen Power, from St. John’s Home in Rochester, New York says “No” and offers a different perspective on the issue:

“Dementia simply “fans the flames” by making people (1) more sensitive to their environment, (2) more easily fatigued, and (3) less able to cope with having their biorhythms shifted into artificial schedules that better suit our nursing home operations.

This is a small distinction, but a very important one. Here’s why: We cannot cure dementia, but we can cure almost all cases of “sundowning” without medication, by shifting operational patterns and staff behavior.”

You may wonder if it could be that simple.  Dr. Power suggests that we take a look at the latest issue of the NYC Alzheimer’s Association newsletter which tells a compelling story about how a care home in Phoenix made just those changes and have been virtually “sundown-free” for over a decade.  Jane Verity, Founder and CEO for Dementia Care Australia, fully agrees with Dr. Power.  

“Sundowning is not a symptom of dementia. To me it is a symptom of an environment that does not feel like home. Our job is to make the place where people with dementia live – one of genuine kindness, love and compassion, where each and everyone has opportunity and is encouraged to contribute, feel needed and useful, have opportunity to care, self esteem boosted and the power to choose (which is different from having the ability to choose). As you write, the challenge for us is to shift focus from our routines and hurry to their emotional and spiritual needs. However the end result is so rewarding for everyone.”

Judy Berry, Founder of the Lakeview Ranch specializing in dementia care in Minnesota echoes the same message. 

Many times, in an effort to change a specific behavior, care partners try to distract or redirect the person without first validating the feeling or emotion they are trying to communicate. This devalues their feelings and often they become more agitated.  By making the effort to learn each individual’s lifestyle, developing a trusting relationship, respecting and validating their feelings and meeting their needs, most so called behavior is eliminated.”

Dr. Power encourages all of us to take a look at our teams and challenges us to create a more natural experience that honors the individual rhythms of our elders.  A great way to show that culture change not only improves the quality of life, but clinical care as well.  What better way for all of us to start out 2012!