February 2020 LeadingAge Catalyst

LeadingAge Catalyst | February 26, 2020 | by Gene Mitchell

Meet the LeadingAge Catalyst for February 2020: Stephani Shivers, chief operating officer, community services for LiveWell, Plantsville, CT.

Leadership and Innovation in Dementia Services

An occupational therapist by training, Stephani Shivers is chief operating officer, community services for LiveWell, Plantsville, CT.

Stephani Shivers
Stephani Shivers

Since joining the LiveWell team in 2013, Shivers has been developing innovative programs for people living with dementia (PLWD) and their care partners, and in 2019 she was awarded funding to lead 2 new significant programs that empower PLWD.

Shivers is committed, not only to serving, but to empowering, PLWD. For her creativity and commitment to helping PLWD live their best lives, she is our LeadingAge Catalyst for February 2020.

Help for PLWD and Care Partners

The first of the 2 programs, Navigating Dementia, is a 3-year project funded by the Administration on Community Living (ACL). This project draws on partnerships with Alzheimer Scotland, Thomas Jefferson University, the Connecticut Area Agencies on Aging, and the UCONN Health Center on Aging.

Participants can work with a LiveWell navigator, who meets with clients up to 10 times for a period of up to 12 months. Navigators help PLWD and their care partners identify their needs, goals, and strengths. The process is organized around “Five Pillars for Resilient Living”:

  • Emotional support.
  • Understanding dementia and adaptive strategies.
  • Social and meaningful engagement.
  • Planning.
  • Health and wellness.

With the help of the navigator, clients develop a personalized plan to build resilience and prepare them for life with dementia.

Educational workshops on Resilient Living with Dementia are available to clients in-person or via teleconference. The courses help clients build a knowledge base on topics that include emotional and peer support, dementia symptoms and strategies, communication, legal and financial planning, planning for future care needs, social and community engagement, and health and wellness. Deep-dive workshops cover topics including palliative care, advance directives, end-of-life issues, technology, and mindfulness.

Specialized occupational therapy services round out the program by helping PLWD and care partners build new strategies to compensate for changing abilities.

Shivers’ team also does dementia-friendly trainings for first responders and community-based workers, who often encounter people living alone with dementia.

Building an Inclusive Research Agenda

The second program, Empowering Partnerships, is funded by a Eugene Washington PCORI Engagement Award. The program is designed to reimagine research by bringing together and training PLWD, care partners, and researchers investigating dementia care, services, and supports. During the training, PLWD help determine research priorities and tell researchers what outcomes are important to them. Researchers learn how to better engage with PLWD and empower them to become active members of research teams. The work is done in the spirit of “not about us without us,” and includes considering how to live well with, rather than be cured of, dementia.

Shivers is also a co-founder of the Dementia Peer Coalition, which describes itself as, “A group of resilient people living with the changes attributed to various forms of dementia who are joining together into a Connecticut-based peer coalition.”

LeadingAge spoke with Stephani Shivers about her background, her programs, and the values that drive her work.

LeadingAge: Tell us a little about your background, and how you got started in services for older adults.

Stephani Shivers: It was not a direct route. I didn't set out to work with older adults, and certainly not older adults living with cognitive changes from Alzheimer's or other forms of dementia.

My undergrad was in psychology and pre-med. My first job out of college was working with people who were blind and disabled because of psychiatric conditions. That was the beginning of my work with marginalized populations. I went to Europe for what was supposed to be a year before [starting] medical school and ended up staying for 11. That took me into a different career trajectory in the nonprofit world.

I think, fundamentally, I'm a change agent in the sense that I'm always looking for a better way to do things. When my youngest went to kindergarten, it was a natural time to pursue graduate work. With my background interest in health care and my desire to continually improve things, it was natural for me to become an occupational therapist.

I had a background in the fields of brain science, neurology, and cognition. I began developing cognitive programs, because I could see that there really wasn't a difference between someone who had a dementia and someone who had another disability or chronic health issue. Regardless of the nature of the condition, you were still working with people who were trying to figure out how to live their best lives. I ended up working in home care for Masonicare, and then Hebrew Senior Care.

There were very few occupational therapists in this field. And [I had] an ongoing history of being able to do program development. So that set me up professionally, to be developing occupational therapy in an emerging practice arena—for people living with dementia [PLWD].

LeadingAge: What has kept you in this field?

Stephani Shivers: I’m inspired by my mom, who is a nurse, and an incredible caregiver. And I have very clear memories of my grandmother, with dementia, being in a nursing home, bound to a wheelchair, over-medicated, and no longer having words for communication. And I have wonderful memories of being with her and continuing to have a connection even though [her] language was compromised. I stay because I see people as people. And people with different abilities deserve to be treated equally and have the same rights as everyone else. People with dementia aren’t treated like people with other disabilities. They are marginalized and stigmatized like people with cancer and AIDS used to be. And people with dementia deserve better!

What really keeps me in the field, though, is becoming a learner from people who are living with these cognitive changes. Being able to see life through their eyes has been personally transformational. I can't imagine what it's like to be stigmatized. I can't imagine being given a label and then having a daily experience of being treated as if you're somehow less than. I can’t imagine what it’s like to have people speak about you in your presence, and it's the everyday experience of people who get diagnosed and who are living with this disease.

LeadingAge: Let’s talk about Navigating Dementia. What is the thinking behind the model?

Stephani Shivers: If you have a stroke, there's a protocol for what happens to you; your rehabilitation pathway is very clear. But if you are diagnosed with dementia, there's really nothing until the disease progresses to the point where you have a serious fall, or until confusion or distress increases to the point where you express yourself through what are typically termed “behaviors.”

People with dementia and their families need a map. They crave answers to questions like, “What now? What’s next?” There is a critical gap in services after people are diagnosed and there's a long period of time where we could work proactively with people to increase independence, safe living, and quality of life. We could set people up for greater long-term success and decreased use of long-term services and supports. But these types of proactive services aren't there. What if we could work with people earlier, in more of a habilitation fashion [rather than] rehabilitation?

There is a critical gap in services after people are diagnosed and there's a long period of time where we could work proactively with people to increase independence, safe living, and quality of life.

When I came [to LiveWell], we started pulling stakeholders together, to identify gaps in services. We worked with PLWD and their care partners and did an assessment to identify their needs, hopes, and desires. Out of that was born the idea for the services in the Navigating Dementia project.

We all recognize that lots of people end up becoming institutionalized prematurely. So, our idea was to both create new proactive services for people in the early stages, while also creating new home-based services for PLWD in the moderate stages. Those in the moderate stages often end up in nursing homes, but can we delay placement if we have specialized occupational therapists and create different services for PLWD at home?

LeadingAge: What is the origin of the “5 pillars” that are key components for living well with dementia?

Stephani Shivers: After our needs assessment, we created a robust listing of new services that were needed. As we researched other post-diagnostic support models, we discovered the work of Alzheimer Scotland. They had been implementing a 3-phase model of support for the past 10 years. We have partnered with Alzheimer Scotland on our ACL project. We ended up pulling apart their 3 models, combined them with other elements we had created, and then we put it all together in a different way. That’s how we came up with our 5 pillars.

LeadingAge: What do the navigators do?

Stephani Shivers: The navigators are staff members from LiveWell. They use assessments and questions to guide conversations with participants. As we work with families, they identify their priorities, and then in subsequent meetings, we go through the pillars, and determine action steps and resources to strengthen [each] pillar. And these individual meetings are then coupled with an education series.

LeadingAge: I’m picturing your navigator working with a person living with dementia, and usually a family caregiver.

Stephani Shivers: That’s right. For people in earlier stages we work with both the person and their spouse or family member, and if someone is more in the middle stages or in the late stages, we're working more with their families.

We have ACL grant funding to deliver these navigation services free of charge.

LeadingAge: What are the start and end dates?

Stephani Shivers: The Navigating Dementia program started in October 2018 and goes through September 2021.

These ACL programs are really designed to pilot new services. These are “evidence-informed” services that we created with Alzheimer Scotland. And we have a program evaluation component, so we're doing assessments at baseline, at 4 months, and at 10 months to monitor the progress people make and the impact we are having.

Ultimately, we want this service to be covered by insurance—Medicare or an Advantage plan—and we’ll use our data to make a case. We believe these proactive services will ultimately decrease costs, so one of the things we're looking at is hospital utilization.

LeadingAge: What qualifications does one need to be a navigator?

Stephani Shivers: Empathy, dementia knowledge, and what we call “clinical judgment.” You're listening and making decisions in the moment, to determine what a family needs, and how much they can take in right now. There's definitely a social work component to the program. The qualifications are on par with a master's degree. Our current navigators are occupational therapists, social workers, LPNs, and geriatric care managers.

It's not a nursing intervention. The goal is building resilience; that’s how you bounce back from this diagnosis. How do you continue to live a life that's full of meaning, build adaptive strategies, plan ahead, get the emotional support that you need, and maintain your own health and wellness?

LeadingAge: You are working with people during a very traumatic time in their lives.

Stephani Shivers: Yes. It is a huge adjustment. People know their lives have changed and that they have decisions to make, and yes, it's hard. But our goal is to empower people to manage and direct their own lives for as long as they can. We want people to be proactive in setting things up early while they can, so that they can live their best life and ultimately, they can die their best death, on their own terms—choosing how they want their lives to play out.

The goal is building resilience; that’s how you bounce back from this diagnosis. How do you continue to live a life that's full of meaning, build adaptive strategies, plan ahead, get the emotional support that you need, and maintain your own health and wellness?

LeadingAge: Let’s talk about Empowering Partnerships, which creates opportunities for people living with dementia and their family members to become actively involved in research projects.

Stephani Shivers: There was a national dementia research summit back in 2017, and a key recommendation that came out of it was the idea that you have to understand what outcomes are important to people living with dementia. If you're researching something that involves a patient, you have to get the patient's perspective, and not just as a participant in research, but as a collaborator in the process. This had never been done with people with dementia because the stigma is so great. The attitude was, how can they possibly contribute anything?

We decided to take this problem head-on and ask what it would really take in order to have PLWD as co-researchers, involved in the process. One, you have to have a group of people living with dementia who are interested in being involved. And that's where cultivating the Dementia Peer Coalition network came in. This culminated in a 2-day training event where we brought together people living with dementia, care partners, and researchers to learn about partnering by co-designing research projects. It was kind of like a hack fest, like a blitz build for research. As they went through each step, we would provide the education that was necessary with that particular step of the research process. They ended up co-designing 5 different projects. It was phenomenal.

LeadingAge was involved with another PCORI Engagement Award project, the Bureau of Sages project from CJE SeniorLife, [which] was designed to engage older adults living in nursing homes in research initiatives. We collaborated with that group on our project. We are all hoping to have an impact on the way research for dementia services is done.

LeadingAge: Tell us about the Dementia Peer Coalition.

Stephani Shivers: There's a growing body of people in the early stages of dementia who are standing up and becoming their own advocates—more so internationally than here in the U.S. These pioneers and advocates have had a tremendous impact on me. Several years ago, I heard Richard Taylor, a psychologist who was living with dementia, speak. It was transformational. I was completely blown away by hearing someone who was actually living with Alzheimer’s speak about it. And the perspective that he shared caused an internal shift in me. I realized that I needed to use my position to create more opportunities for people with the lived experience to share it, and to really drive the changes that they need.

I was aware of the age-friendly movement and the dementia-friendly movement. What was making those movements successful in other countries? They were being championed by people living with dementia.

One day about 5 years ago, I got a phone call: “Hi, my name is Bob Savage. I'm living with Alzheimer's, and I’ve heard a lot about you. People say I need to meet you.”

He had been very depressed after his diagnosis, and he came out of it through art—being engaged at museums and creating his own art. And he wanted to create some kind of a public event to showcase the power of art for transforming the experience of living with dementia. We ended up producing an event called Hello Light [video link]. He also had a 40-year career working in the substance abuse field for the state of Connecticut, so he was an advocate at heart. We talked about what it would take to start the Dementia Peer Coalition. Along with another colleague, Dan Belonick, a social worker, we spearheaded the creation of the DPC.

I heard Richard Taylor, a psychologist who was living with dementia, speak. I was completely blown away by hearing someone who was actually living with Alzheimer’s speak about it. And the perspective that he shared caused an internal shift in me.

At the time, I was also a LeadingAge Leadership Academy fellow, so my action learning project, my SPARK [YouTube link], was to work on forming the DPC. The DPC is growing daily and focuses on peer support, advocacy, community education, public awareness raising, and research.

We're just in the process of filing our 501(c)(3) application, and our idea is to create a model that could then be replicated in other states.

LeadingAge: Here’s a 10,000-foot question. What does our field do well, and what should we be doing better, in serving people living with dementia?

Stephani Shivers: We have made tremendous progress in the realm of dementia care over the past 30 years. Today’s nursing home resident indeed has a very different life than my grandmother. But these changes have primarily been driven by benevolent professionals. We providers have been the ones determining what is best for those living with dementia as their voices are silenced by their dying brains. How do we shift our organizations to be ones where our services and supports are determined by those who are (or will be) living with dementia?

And how do we move beyond care to fostering and promoting well-being?

And what about stigma? How do we ignore it? Foster it? Address it?

What I do know is that we all need to have ongoing conversations with people living with dementia. We need to create opportunities for their voices to be heard, their experiences to be shared, and their hopes and desires realized.

And we all need to have conversations about dementia. Given that we are all aging (which is the greatest risk factor for getting dementia) and that we could soon have a blood test to tell us if we already have it, I think we all need to shift our thinking from “them” to “us” and from “if” to “when.” Maybe then we will accelerate the changes people (and perhaps we) need to live well with dementia.

Gene Mitchell is editor of LeadingAge magazine.