By Rachel Scher McLean / Posted on May 14th, 2018
“For thousands of years, elders have been held in high esteem and involved in the community,” says Steve McAlilly, CEO of Mississippi Methodist Senior Services. As the world shifted and the role of elders changed, Steve sought a way to bring them back to a place of reverence and respect. 15 years ago, Steve courageously opened the first Green House home in Tupelo, MS, effectively building a home where elders could live full and meaningful lives, “Within hours of moving in, a peace came over the home,” Steve remarks.
Not only do these homes positively effect the elders who live in them, but also the direct care staff who take on expanded roles to become the managers of the home. The skills that they learn in The Green House homes affect every area of their lives, “I’ve watched team members grow and thrive in the Green House” says Michele Daniel, VP of Philanthropy & Strategic Implementation. Mississippi Methodist Senior Services currently has 19 Green House homes on four separate campuses.
Returning the elders to a place of esteem, honor and respect is an investment in the quality of life of the entire community.
This 15 year milestone began with the vision of Dr. Bill Thomas and was embraced by Steve McAlilly’s leadership. Thanks to the support of The Robert Wood Johnson Foundation, this radically simple innovation has become a proven movement that continues to grow with integrity and sustainability. Now with Green House homes open and operating in 33 states, small house nursing homes are a trend addressing many of the challenges in healthcare. The Green House model is demonstrating that the status quo is not good enough and that there is a better way. Thank you to Mississippi Methodist Senior Services, and all of The Green House partners who have opened their doors in the past 15 years. Together we are fostering environments of empowerment, dignity and respect, and a world where every individual can anticipate a hopeful future
By Rachel Scher McLean / Posted on May 8th, 2018
Update, 05/18: The Green House Senior Director, Susan Ryan was honored to join Leslie G. Moldow, FAIA, LEED of Perkins Eastman and Mary Muñoz of Ziegler at the LeadingAge California conference to speak about The Small House Pilot, and how providers can seize this moment to enhance the way elders in California age. Collaborating with strong leaders in our field makes our collective voice louder and our impact greater.
Originally Published 01/18
It is a pivotal moment in California’s history. The Small House Pilot Program is now live, and it has the potential to clearly demonstrate that there is a better way to deliver skilled nursing care. This profound opportunity requires that nursing home providers across the state, take a stand, and say, NOW IS THE TIME!
The wait has been long, making this moment all the more powerful. In 2013, through a tenacious journey, Mt. San Antonio Gardens became the first Green House Project in California. The work that they did to make regulatory gains with stakeholders across the state blazed a trail and were codified in late 2012, as Governor Brown signed into law Senate Bill 1228 (introduced by Sen. Elaine Alquist). The bill created The Small House Skilled Nursing Facilities Pilot Program, which authorized the development and operation of 10 pilot projects to deliver skilled nursing care in smaller, residential settings, “It puts the ‘home’ back into nursing home”, said Senator Alquist (D-San Jose). However, it wasn’t until early 2018, that the regulations to support this bill were released, and the request for applications is now open to the public. As a perennial advocate for elder directed, relationship rich living, The Green House Project is eager to support every effort to ensure the success of this opportunity.
The Green House Project has come to be recognized as the leader of the small house movement to create a high-quality, cost-effective, human-scale alternative to the traditional nursing home. Studies of the Green House model have found that:
• Residents have a better quality of life and receive higher-quality care than residents in traditional nursing homes.
• Staff report higher job satisfaction and increased likelihood of remaining in their jobs.
• Family members are willing to drive farther and pay more to have access to a Green House home for a loved one.
Real Home, Meaningful Life, and Empowered Staff: these core values align well with the regulations of the Small House Pilot in California, and they drive change in Green House homes, creating quality outcomes, consumer demand and preferred partnerships in the healthcare system.
With 15 years of expertise in design, education and evaluation, The Green House Project is a strong partner to support the expedited timeline and in-depth requirements of this pilot. The first deadline for submission is June, 2018. Design tools, like The Green House Prototype, along with educational protocols and policy and procedure expertise, will ensure an organization is able to successfully navigate this application. Susan Ryan, Senior Director of The Green House Project says, “The Green House Project specializes in a comprehensive cultural transformation that shifts the beliefs, behaviors, and systems to ensure a lasting investment across an organizational system. It is more than simply a process from ‘this’ to ‘that’; a real transformation unleashes the best of what can be by accessing collective wisdom.” The national initiative stands ready to support nursing home innovators in California, to ensure better lives for elders and those who work closest to them.
With California’s number of individuals 85 and older expected to triple by 2030, the market for Green House homes and others like them is rapidly growing. Consumer demand for the kind and quality of care that The Green House model provides has long existed, but until recently, California’s regulatory and approval process had been unable to accommodate non-traditional models of care. In fact, it took almost seven years for Mt. San Antonio Gardens to gain the approval it needed from multiple local and state agencies. Inspired by their lessons learned, Senate Bill 1228, and the newly released regulations, will enable innovation without obstacle. The Green House Project calls every organization interested in creating a real home, meaningful life and empowered work opportunities for the citizens of California to contact us, and together we will forge a trail to a brighter future.
By Laurie Mante / Posted on May 8th, 2018
Joe moved into to Eddy Village Green (EVG) in early December 2017. His wife had been caring for him at home with great devotion for several years but was completely exhausted. They had four children who were all very involved and supportive of their parents. Joe moved in with the diagnoses of Parkinson’s disease, dysphagia, delusions, adjustment disorder, anxiety, dementia and hallucinations.
Joe was came to EVG after a fall at home where he lost consciousness and spent several days in the hospital. Joe’s biggest stressor in life was his retirement. Joe had a long career in law enforcement. His life was his career, and he was forced to retire due to his Parkinson’s disease. His wife reported that he never made peace with his retirement. Two of Joe’s sons were also in law enforcement.
Upon move in, Joe was very outgoing and friendly, and had a great sense of humor. But the first day Joe was in the home, he had two falls! We knew right away that this was going to be a difficult journey. Joe also became very anxious as soon as his family left and was wandering around the house asking repeatedly where he was. Staff reassured Joe that he was safe and tried to engage him in some reminiscing. Joe had huge swings in his cognition throughout the day, so staff really had to adjust their approaches to meet him where he was. Sometimes he was very alert and lucid and could speak very well, and other times he was very confused and could not string together cohesive words. This was extremely frustrating and anxiety-producing for him.
We learned a LOT about Joe in the first few days from both him and his family. We learned that his routine used to be to work all day, come home and have a cocktail and some cheese and crackers with his wife, and then go back out on patrol with his son at night. This explained a lot of Joe’s roaming around the house in the evening hours – he would get restless after dinner and often be found rummaging in drawers of other Elder’s rooms looking for “contraband”. Joe would eat very well at breakfast and lunch but by dinner he was “on the go”. Shabazim brainstormed with Joe’s wife and began leaving out a plate of cheese and crackers and fruit at dinner time so that Joe could walk around and be “busy” but still get some calories in him. He had good and bad times of the day due to the Parkinsons, but when his meds were on board, he wanted to be moving, not sitting – so “snacking” for dinner was much better for him than sitting at the table.
A couple of weeks after moving to EVG, Joe was very agitated and walked out of the front door of the house. He was wearing a wander tag, so the door alarmed, alerting the shahbaz. The shahbaz followed Joe out of the house, but he was jogging through the parking lot, dodging among cars, as though he was engaged in a “chase”! Luckily, a staff person driving on campus saw the situation and offered Joe a ride, so he hopped in her car and she drove him around for a bit before returning him to the house. The team was wondering if getting him out more often would help, but the family was very against this as he had tried to jump out of the car with their mother driving during a hallucination.
Again, our partnership with the family was valuable in learning key information. We think Jim was hallucinating when he left the house and was running through the parking lot.. We were concerned about his speed when he exited the house, the winter weather, and the wooded areas on the campus, so we were able to place a gps-tracking devise on Joe’s ankle in case he exited the house like that again. I want to emphasize he was not exiting the house to get some fresh air or take a stroll, he was having a delusion that he was chasing bad guys and we were quite afraid he would get lost in the woods. We also instructed staff to call 911 immediately as Joe would not be threatened by a police response – these were his friends. There were other times, when Joe was calm and curious about the weather, when he would exit the house and come right back in when he was satisfied that it was cold, snowing, etc.
We also set up the den of the house with a desk for Joe, bringing case files and official forms, so Joe could do some work. Shahbazim also created a clipboard and would have Joe accompany them on rounds to inspect things. This helped to engage him, give him purposeful work – and seemed to keep the delusions away during the late afternoon and evening, which were very challenging for him.
We tried yellow signs on other Elder’s doors who did not welcome Joe’s visits, but this didn’t work at all – Joe had spent his whole career walking through crime scene tape! So we put up a big “DO NOT ENTER – KEEP OUT!” sign, and this, interestingly enough, worked most of the time!
The Shabazim and nurses were so creative in their approaches to engage Joe and honor his law enforcement background. We ran ideas by his family regularly, and they were wonderful. Shahbazim also figured out that every time the weather got bad Joe would get particularly anxious. They figured out that Joe was worried about his family – especially his son who was out patrolling the road in the snow. So whenever there was ice or snow, the Shahbazim would call Joe’s sons and let him talk to them. They would assure him they were home and safe and Joe could settle down for the night. They also asked his wife to call whenever she left after visiting to let Joe know she arrived home safely. Joe had always been the “protector” of his family and it was important for him to continue to play this role.
Joe also enriched the lives of staff and the other Elders in the house in countless ways. His smile and laugh were infectious. He greeted visitors, and many people coming to the house called him “Sheriff”. He watched over everyone in the house. There was another Elder who sometimes was very sad and Joe would sit next to her and quietly hold her hand. This was a poignant reminder of the gifts people have to offer even when they are struggling so much themselves.
These are just a few examples of how deep knowing, listening to Joe, paying attention to his behavior when he couldn’t use words to express his needs, and partnering with his family, helped us to help Joe live his Best Life.
Joe’s life was very hard – he fell a LOT – but what to do? Restrain him? Absolutely not. We managed the environment as much as we could to prevent injury. His family was adamant that Joe be allowed to be as mobile as his disease would allow him to be. Sometimes he was so jerky from the Parkinson’s that he couldn’t have purposeful movement OR rest. This was very hard on Joe, his family, and the staff. In early March Joe experienced a very rapid decline – he couldn’t ambulate independently at all and was very lethargic most of the time. We suggested to the family that it might be time for hospice – and that their expertise could support Joe, the family and the house. The family agreed and hospice was added as another layer of support. Joe came down with a respiratory infection in mid-March. He was running a temperature and was very weak. He was having a lot of shortness of breath. He had lost weight. Three weeks after his admission to hospice, Joe died, in the house, with his family and Shahbazim surrounding him with love. Family was there 24/7 for the last week of his life, and the whole house grieved when he died.
Joe was not with us long – just a little less than four months. But in that short time, he taught us a lot about living his Best Life, and caring for others, right up until the end.
By Gina LaGuardia / Posted on April 30th, 2018
The GREEN HOUSE Project was pleased to join the April 25 #ElderCareChat, with Director of Operations Debbie Wiegand serving as an expert panelist. Wiegand engaged participants in an informative Twitter conversation about innovations in senior care while also describing how The GREEN HOUSE Project has come to be recognized as the leader in creating high-quality, cost-effective, and sustainable, human-scale alternatives to the traditional nursing home.
The hour-long #ElderCareChat put the need for innovative solutions in context, with Wiegand explaining how an aging population is driving the need for more senior care options. The topic was inspired by a recent blog post that discussed how the Green House model has become a catalyst for change in the field of long-term care. The model’s emphasis on creating a “real home” environment, with a look and feel that is residential rather than institutional, has gained considerable attention in the skilled nursing care space.
The Twitter session, which generated more than 3.4 million impressions and nearly 400 tweets, gave the 25 participants the opportunity to share their thoughts on a variety of topics, including what they perceived to be the major trends in senior care. One participant identified a movement toward more person-centered care. Another mentioned the need for a social/cultural change with regard to how we look at aging. In addition, several participants cited technology as having an increasing impact on senior care solutions.
In conjunction with an aging population, Wiegand sees an increasing demand for more innovative memory care solutions. “Correlated with the increasing number of elders is the prevalence of Alzheimer’s disease, and the need for high-quality models that focus on the whole person, rather than the traditional biomedical model that focuses primarily on decline and disease,” Wiegand tweeted, adding that a Green House program called “Best Life” was created to equipment caregivers with the knowledge and skills needed to help elders living with dementia thrive.
Wiegand also stressed the importance of frontline professionals building meaningful relationships with elders and their families. “Changing demographics exacerbate staffing challenges in nursing homes,” she observed. “Without the availability of quality jobs that offer expanded roles and opportunities for growth, the long-term care industry is at great risk for worker shortages.”
The chat also included a discussion of the advantages of smaller, more residential living spaces for elders. Wiegand explained that Green House homes are designed to create warmth and foster “intentional community.” “Smaller is better,” she tweeted, “meaning less square footage, which helps to support elder mobility, familiarity and access to all spaces of home, and reduce costs of construction.”
A chat participant observed that smaller, more intimate environments allow for better relationships with caregivers, tweeting, “The social, family atmosphere of residential living spaces eliminates the institutional stigma that is often associated with eldercare.”
Participants were highly receptive to innovative solutions being introduced to the long-term care space. As one senior care professional tweeted, “The day we stop innovating is the day we need to find a new job!”
“The GREEN HOUSE Project is all about relationships and deep knowing,” Wiegand concluded. “We embrace technology, but never at the expense of the human touch and connection.”
For those wanting to learn more, the GREEN HOUSE Project will host a webinar on workforce issues at 1 p.m. ET May 3. Register now.
In addition, The GREEN HOUSE Project is presenting opportunities to visit Green House homes and take a deep dive into the model at the following locations:
Feel free to peruse the transcript of the 4/25/18 #ElderCareChat session.
#ElderCareChat is presented by A Place for Mom‘s OurParents.com in conjunction with sister sites SeniorAdvisor.com and VeteranAid.org as a forum to share resources, experiences, and expertise in eldercare. Stay tuned to @OurParents Twitter handle for information regarding the next #ElderCareChat.
By Rachel Scher McLean / Posted on April 27th, 2018
Small House Nursing Homes is a trend that providers are recognizing as a solution to the growing workforce crisis, the pursuit of high quality at a lower cost and consumer demand. Green House Senior Director, Susan Ryan, was invited to the Ziegler/LeadingAge 2018 CFO Workshop join a panel with Otterbein, and discuss, “Keys to Operating Successful Small House Models” .
The data presented during this session stemmed from the recently updated financial survey of Green House partners by Terri Metzker of Chi Partners. In this survey, she explored the essential elements to achieve viability through comprehensive culture change.
To learn more about how Green House homes are faring in comparison to national trends and the importance of leadership to create sustainable results, please download the full webinar>>
By Rachel Klumpp / Posted on April 25th, 2018
In the opening session of our “Workforce” series, Robyn Stone, Senior Vice President for Research at LeadingAge provides an overview of the demographics, trends, and challenges of the workforce in Elder care. Robyn begins by urging listeners that as providers, we must invest in our workforce to produce the high quality of care we are promising to Elders and families. Our sector will be the center of many jobs in the future and therefore, investing in our workforce is a key component to overall organizational success.
Given the broad and multidisciplinary nature of our field, our workforce meets at the intersection of the medical, social, and environmental sectors. While this creates a dynamic work environment, it also creates challenges when recruiting and retaining quality clinical, administrative, and management positions. Specifically, Robyn urges the importance of frontline professionals who deliver 60-80% of care and are the “eyes and ears” of our communities. Frontline professionals are critical to building meaningful relationships with Elders and families and are essential to the success of an organization when cultivating an Elder-centered culture.
Robyn highlights long-term trends and the importance of building a competent workforce to meet the changing demographic. A rise in care needs, particularly in the 85+ population coupled with the pending workforce shortage of frontline professionals has created an emerging gap in care services. Additional trends include more ethnically and racially diverse older adults and an increase in highly educated older adults with greater access to technology and health literature. Lastly, Robyn discusses economic disparities between cohort groups and the growing group of older adults that will not have the resources to access services they may need in the future.
What are the challenges to workforce development? Robyn discusses that across all jobs and occupations, our sector is continually undervalued when compared to peers in other healthcare settings. She suspects ageism is the catalyst for a lack of attention and investment in public policy, education, and reimbursement rates to support a quality workforce. “We need to have policies that actually incentivize our service systems to be investing and supporting a quality workplace.” At the organizational level, growth in quality supervisors, in-service trainings, career mobility, and competitive compensation and benefits are critical components to building and maintaining a strong workforce.
In closing, Robyn shares public policy, education, and workplace solutions to support the workforce of the future. Specifically, she advocates for tying Medicare & Medicaid reimbursement directly to workforce development, developing quality clinical placements to attract students to our field, and creating innovative career ladders that support organizational retention.
To listen to the webinar, please visit: https://attendee.gotowebinar.com/register/3609958745640052481
By Rachel Klumpp / Posted on March 29th, 2018
In the first of our four-part “Making the Business Case for Culture Change” series, Lisa McCracken, Director of Senior Living Research & Development at Ziegler shares an overview of key trends and innovations in elder care. Ziegler is one of the nation’s leading underwriters in financing for not-for-profit senior living providers and works with merger and acquisition activity in the private sector. As the Director of Senior Living Research & Development, Lisa conducts market research and trend analysis and contributes to educational articles and white papers on key industry topics.
Rising demographic changes are driving evolution and innovation in senior living organizations. Specifically, there are two key stakeholder groups providers need to target when thinking about their market audience, the baby boomers and millennials. As roughly 10,000 baby boomers turn 65 each day, the aging services spectrum enters a large period of scale. We now see a trend in non-traditional healthcare players entering the industry as they discover their unique role in solutions around aging, from technology to transportation. Senior living providers will need to adapt and evolve to meet the new preferences and characteristics of the baby boomer generation to connect with the new older adult. Specifically, Lisa discusses language changes, wellness initiatives, resident engagement and support services, and community life. As a major part of the workforce of the future, millennials have new values regarding recruitment, retention, and employee engagement. Lisa encourages providers to be “thinking smart” about attracting millennials into our field, particularly when competing with other industries. Four out of the six top projected in-demand occupations fall in our field, creating a growing number of professional opportunities for this rising workforce (Personal Care Aide, Registered Nurse, Home Health Aide, and Certified Nursing Assistant). Lisa shares labor challenges many organizations face and presents best practices to overcome workforce barriers to attract and retain great talent.
How is senior living changing and growing? There are significant differences between not-for-profit and for-profit growth and development. In the not-for-profit sector, organizations are focused on expanding and renovating current communities rather than building new locations to adapt to the changing demographic. Not-for-profit providers are also focused on repositioning their skilled nursing neighborhoods away from the institutional model and reinvesting in real home environments, such as The Green House model to support organizational culture change and provide elder-centered care. In the for-profit sector, Ziegler is seeing a growing number of new communities, particularly in the Assisted Living and Memory Care space across the country. However, in both sectors, there is a growing number of sponsorship transitions and mergers and acquisitions because of several factors, including the increased complexity of healthcare reform and organizational leadership turnover.
In our dynamic environment, Lisa provides an overview of the pressures many providers are facing, particularly in the post-acute rehab space. Decreased length of stay, higher acuity levels, narrowing hospital networks, and an increasing number of treatment plans that skip skilled care entirely place high pressures on skilled nursing providers as occupancy trends decline. Lastly, as we look toward the future, we see new technology entrepreneurs continue to emerge providing innovative solutions that are paving the future of resident care, organizational staffing, caregiver communication, and family engagement.
To listen to the full webinar, please register to receive the recording: https://attendee.gotowebinar.com/register/8988540930301490433
By Don Shulman / Posted on March 28th, 2018
Reposted from Association of Jewish Aging Services Newsletter
Don Shulman is the President/CEO of AJAS, a vital, relevant and forward-thinking organization. Don has been working with elders his entire career. Don is a Registered Dietitian and completed his internship at the Mayo Clinic in Rochester, Minnesota in 1979. Prior to leading AJAS, Don spent 23 years in senior dining with Marriott and then Sodexo.
AJAS Communities Speak Out in March for Our Lives Events
|Like our nation’s youth, AJAS communities around the country last week publicly expressed their views regarding violence and guns.
At 2:00 PM EDT on March 23, many communities held a moment of silence and recited Kaddish (the Jewish prayer of mourning) in memory of those who lost their lives to gun violence.
Elder demonstrations against gun violence was inspired by Green House Partner, Carol Elliott, CEO at Jewish Home Family, according to Don Shulman, AJAS President and CEO. “Ageism yields thoughts that our elders have little or no voice as they grow old. This is just not true,” Shulman said.
Their voices are powerful and as the age demographics continue to change, the voice of our elders becomes even more plentiful and powerful.
By Lisa Milliken / Posted on March 27th, 2018
Reposted from The Pioneer Network Newsletter
Lisa Milliken serves as the Director of Education for Select Rehab, where she researches evidence based practices and develops continuing education courses on current hot topics for therapeutic intervention in the post-acute setting. Her goal is to assist this field in the prevention of unnecessary re-hospitalizations and to help therapists deliver the highest level of rehab practices for the most optimal clinical outcomes.
“If my therapist asks me to do something that makes sense to help me achieve I want to do, then I would be motivated to do it. It would make sense to me. But how is this bicycle thing going to help me work in my garden or wash my clothes? That doesn’t make sense, so why should I have to do them?”
These are often the thoughts of residents in a community’s rehab department who are there to regain a prior function. I’m reminded of a story shared by a colleague about one man (Tom) who was in short-term rehab following his stroke. His goal was to regain function of his left arm and leg to go home and resume work on his farm. Initially Tom did not like doing the same old exercises, which were assigned to him by the physical therapist to improve his leg strength. And he surely didn’t enjoy the tabletop pegboard and exercise putty his occupational therapist gave him to work on. His comment to all of this was, “This is ridiculous, why I am doing this?” So they stopped and asked “What would you like to be able to do again?” To this he responded, “Well, I want to go home and get on my tractor and get back to work!” So the therapist called Tom’s son and they arranged for the tractor to be brought to Tom’s senior rehab community and parked it in the parking lot. Every therapy task from that point included goals to get on and operate the tractor. This meaningful therapy had a purpose and Tom’s progress then increased dramatically.
Each elder’s rehab goal is different. We should not assume that everyone wants to walk 100 feet and improve standing balance to 15 minutes. There may be no meaning or purpose to such goals. But if we ask them, they will often tell us exactly what they want. It may be that they want to sweep their own floors, go get their mail or walk to the living room to visit with other elders by themselves. Or maybe it’s to independently work in the kitchen because they’re a chef and frequently volunteer at a local shelter to help with meals.
A successful meaningful therapy task includes the following components:
• Person-centered and individualized
o Based on preferences
o Meaningful versus rote
o Graded to abilities
• Volume and content are appropriate to skill level
• Therapy and nursing team members’ attitudes are supportive of the elder’s goals
According to a study by Port and others in 2011, we can effectively solicit an elder’s preferences through a series of steps, including the systematic narrative history of activities enjoyed prior to admission and a direct interview of the elder about activity preferences and available choices. We can then identify health-related or contextual obstacles and develop novel interventions to re-engage each elder in their preferred task. Historically, traditional therapy would focus on impairment-based treatment approaches. And components of such approaches may still be necessary and beneficial at specific points of treatment, such as to collect baseline data for range of motion, strength and activity tolerance.
But functional-based treatment approaches should also be included in the elder’s skilled plan of care. Each elder needs to be challenged and tested in functional skills that will be required of him/her in the following skilled rehab, whether that be within a community setting such as a nursing home or assisted living, , or in their own home. This approach prepares the client for the specific activities and skill sets which they will need to attain their optimal level of functioning in any setting, and where possible, to successfully transition and remain in their home without the potential risks.
The recently updated Rules of Participation for Long-Term Care now cites the resident’s preferences as a requirement in many of the codes of federal regulations. For instance, the Resident’s rights section includes this statement:
“A facility must provide a person-appropriate program of activities that should match the skills, abilities, needs and preferences of each resident with the demands of the activity and the characteristics of the physical, social and cultural environments.”
Furthermore, payer sources such as Medicare and various managed care and insurance companies stress the importance of quality outcomes in a timely manner. So it should be of no surprise that our detailed graphs and charts of outcome data per client shows better and faster improvements as a result of the functional based therapy where we focused on the residents’ personal goals.
Such regulatory and outcome requirements further support our priority to first seek the resident’s input regarding their preference and then help them to achieve their unique goals. Whether we’re working to get Tom back on his tractor, helping Louise to return to her kitchen, or supporting the best quality of life possible as defined by each resident in a community, we can cater each therapy session to their unique goals and the result is a win-win for us all.
By Meg LaPorte / Posted on March 13th, 2018
For our next series, we visited Pompano Beach, Fla., where a retirement community known as John Knox Village is located–about 10 miles north of Fort Lauderdale. On the campus are 12 Green House homes, which are small, resident-centered homes designed intentionally to counter the institutional feel of traditional nursing homes. A key feature of a Green House home is that staff and residents are empowered to live and work together as a team. Helping to make this team operate smoothly are Sages, who hold an esteemed position within the home. For this series, we interviewed Sages, all of whom have a lifetime of experience from which to draw upon to assist elders and others within the home. We will let our first interviewee, Diane, explain the purpose of a Sage: “As part of structure of this place they look for volunteers to act as Sages, because we’re old and wise and we’ve had experience working with groups, mentoring people, and problem solving with people. There is a screening process and we were trained. There are homes in this building, and there is at least one Sage assigned to each home. We come in on a volunteer basis and our function is to council, mentor, encourage the shabazim, who are the trained CNAs, within the home, to help them create a self-managed work team. And we are also there to provide contact between the elders and the shabazim and to enable them to get to know each other better. We come in on a fairly regular basis to visit in the home, we attend team meetings, if we’re invited, and hopefully give them the support they need.” . . How often do you come to the home? “It varies. I try to come two or three times a week, and that’s hard because I’m involved in other things. But I try to make it two or three times a week. I’m a resident of John Knox Village, as all the Sages are. We are lucky that we have that volunteer base to work with because everyone is on the property.” . . . . . #changingaging #agewoke #disruptaging #agepositive #greenhousehomes #sages #wisewords @johnknoxvillage #florida #pompanobeach #johnknoxvillage #ageinamerica #oldandwise #olderandwiser
By Sonya Barsness / Posted on March 2nd, 2018
Sonya Barsness is a proud gerontologist with over 20 years of experience. Gerontology is the multidimensional, non-medical, study of aging. This is important because each one of us is multi-dimensional. Aging is multi-dimensional. Her mission is to help person-centered values come to life in order to better support people in growing older and growing with dementia.
Hi. My name is Sonya and I have behavioral and psychological symptoms of Sonya (BPSS). Yes, it is true. You see, sometimes when I am doing something I don’t want to do, I get agitated. And then there are the times when I am tired or not interested and I have apathy. The other day I was combative when my husband tried to feed me a strawberry and I pushed his hand away (I really do not like being fed by others, although I really like strawberries.). I irritably yelled at my computer for several minutes this morning when I read the headlines. I am anxious any time I have to drive in this heavily congested area. Unfortunately, I also am paranoid. I KNOW that my husband took the car keys and hid them from me.
Maybe you are saying, “Sonya, what are you talking about? BPSS? Why can’t you just say you are angry or anxious? Why the labels? You are so weird.”
Maybe you are also wondering to yourself whether you have some form of BPSS. “I get angry too”, you might be saying to yourself. In fact, you are getting more angry and anxious as you read this. “Sonya, where are you going with this?” you are thinking nervously.
Have you noticed that we take actions of a person with dementia and ab-normalize and medicalize them? I have.
There is a term, called Behavioral and Psychological Symptoms of Dementia (BPSD) that is 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.
A 2012 study¹ said that 90% of people with dementia have BPSD. Hmm. What percentage of the general population has BPSD? 100%?
I experience these symptoms and as far as I know, I do not have dementia. So, if I have them, and you have them, what are they symptoms of? Maybe of being human? So, because I do not have dementia, they must be Behavioral and Psychological Symptoms of Sonya. And if we are going to describe them that way for people with dementia, it is only fair that I describe them this way for myself.
Note: For the purposes of this article, I will refer to these “symptoms” instead as actions or expressions.
In everyday life we use these terms to describe our actions. They are, for the most part, considered “normal”. Yet, we seem to have a double standard when we are talking about people with dementia.
A person without dementia might be angry because he does not want to wake up. But a person with dementia is agitated when he does not want to wake up.
A person without dementia flirts with the waiter and it is just flirting. A person with dementia flirts with the waiter and she is disinhibited.
I am in no way minimizing the seriousness of these expressions/actions. These expressions are very distressful for both people with dementia and those who care for them. They are very real. But I want to suggest that they are not abnormal. They are human responses.
Being with many people living with dementia, and those who care for them, has taught me that living with dementia is very, very hard. People with dementia are doing the best they can. They are trying their best to make sense of everything and everyone around them. Because they are human, of course they are going to experience the same human emotions as any of us. If not more, because of the challenges of living with dementia. Their actions are expressions. Normal, human expressions to what are often experienced by them as abnormal situations. I have sat with many of these humans, and heard their experiences. They made me change the way I thought about their “behaviors”.
For these reasons, and more, we need to reconsider this term of BPSD. Perhaps more importantly, we need to think about the meaning behind it.
I understand why we use this term. We needed a way of describing some things we were seeing, so we created a term. But there is a danger in this term that is bigger than these words, I am afraid. Because a term is often, if not always, a reflection of a paradigm.
When we define these actions and expressions as symptoms, we do several things:
- When we describe these expressions as symptoms, we medicalize them. We also then frame them as “abnormal”.
- We are suggesting that the only explanation for them is the underlying medical condition of dementia. Then we are less inclined to try to understand the reasons behind these actions. They are “just what people with dementia do”. When we don’t understand the reasons, or what people are communicating to us through their actions, we are not able to meet their needs.
- When we medicalize expressions that might be normal for the person and his or her situation, although abnormal to us, we also contribute to a paradigm that sees people with dementia as different than us. Because WE certainly don’t ever have those expressions, but people with dementia do because of their dementia. A very concerning possible consequence of seeing people as different than us, “othering” them, is de-humanizing them.
- When we frame expressions in medical terms, as a medical problem, the next step is to try to address them with medical solutions. This might mean using antipsychotics unnecessarily.
- To take this a step further, when we frame these expressions in medical terms, even if we are looking for non-medical ways of addressing them, we still see them as medical problems to be addressed by these “non-pharmacological” solutions. The challenge with this is that we are still limiting ourselves to seeing these expressions through a medical lens, rather than trying to understand what they might mean for that person, and trying to address the underlying reasons behind the expressions, whether they be unmet needs, or emotional distress. Even a non-pharmacological solution can be a band-aid and not address the reason behind a person’s action and what it means.
We are already seeing ramifications of this paradigm in how we view and treat people with dementia. One of these areas is in the use of antipsychotic medications, which are used to address BPSD in people with dementia. A recent report by Human Rights Watch reiterated the overuse of antipsychotics for people with dementia. The article pointed out various possible reasons for overuse. Unfortunately, they are not untrue. Not having enough staff and training to meet the needs of people with dementia is unfortunately real in too many cases. In some cases, these medications are used for convenience. However, in my experience, I think it is more often due to people not knowing how else to respond.
Yet, I think it is something much bigger. It is a reflection of this paradigm of dementia – the story of dementia that we have told ourselves for too long. This is the story that tells us that the way people with dementia act are symptoms or “behaviors”. The story tells us that not only are behaviors bad, they are not normal. Because they are abnormal medical problems, we need to address them with medication.
However, what we are neglecting in this story is this – the way people act, i.e. behaviors, are not abnormal for them. In many cases they are perfectly normal responses to how a person is experiencing the world around him or her. They are an expression of what a person is experiencing, what she or he is telling us, and what needs we might not be meeting for a person.
Yes, it is true that there are changes in the brain that happen as a result of various types of dementia that influence the way a person acts. Parts of the brain that regulate emotions are affected, making it more difficult to control various emotions. There are indeed various part of the brain that cause a person with dementia to see and experience the world differently. So yes, dementia changes the way we might act.
I am also not dismissing the intent behind terminology such as BPSD – to attempt to understand and help people with dementia.
It is for all these reasons that we have to think differently. There is too much at stake, and we want and need to do better for people with dementia.
This term of BPSD can perpetuate a paradigm of dementia that does not honor the human experience of dementia. Who people are as individuals. What they need. What is important to them.
It is time for a new paradigm. One that sees people with dementia as no different than us. That strives to see things from the perspectives of people with dementia so we can find better ways to support them. A paradigm that truly sees people with dementia as whole, not broken. And one part of building a new paradigm is to critically and respectfully question how we are describing and thinking about the way people with dementia act.
Note: I am well aware that I am not alone in this desire to change the paradigm of dementia. I am being heard here, with my own voice, but know that there are many who are in this together. They are people living with dementia, their care partners, and people whose professional lives are dedicated to making life better for people with dementia. I learn from them every day. Rather than speak for all of you, I hope you will chime in, as much more needs to be said.
¹Cerejeira, J., Lagarto, L., & Mukaetova-Ladinska, E. B. (2012). Behavioral and Psychological Symptoms of Dementia. Frontiers in Neurology, 3, 73. http://doi.org/10.3389/fneur.2012.00073
By Rachel Scher McLean / Posted on February 23rd, 2018
It’s all about leadership, and The Green House is honored to work with wise leaders who exude such a presence of belief and trust in the culture that they are helping to shape. Check out these short interview that delve into the unique journeys of Southern Administrative Services, and Clark Lindsey, as they discuss the business and operational value of working with The Green House Project.
“The business model of The Green House model is self evident… It’s where people want to be. Rather than spending your money on an intense marketing campaign to promote your business, why not create something that attracts everyone. ” – John Ponthie, Southern Administrative Services