Live Well with Cognitive Change

Roseanne Azarian: Welcome to Front Door, a My Place CT podcast. My Place CT is a free web-based resource from the State of Connecticut that helps people live with optimal independence. Learn more at MyPlaceCT.org.

Hi, I’m Roseanne Azarian, the host of Front Door, where older adults, people with disabilities, and the professionals who help support them come for information and inspiration. Subscribe to Front Door on I-Tunes or the Apple podcast app, Stitcher, Google Play, or wherever you get your podcasts. Front Door is a production of the Connecticut Department of Social Services and Mintz + Hoke.

Today’s episode is about creating a holistic model of care for people living with cognitive change that involves the individual, the family, and the community coming together to support a positive life experience for that person. Here to tell us all about this is Stephani Shivers, COO for Live Well Alliance, and Daniel Belonick, Director of Counseling Services for Live Well Dementia Specialists.

Stephani, welcome, and Dan, welcome to Front Door. Thanks for stopping by.

Stephani Shivers: Thanks for having us.

Roseanne: Until recently, Live Well was called the Alzheimer’s Resource Center of Connecticut. I believe you’ve been around since 1990.

Stephani: That’s correct.

Roseanne: You’ve earned a terrific reputation. So why did you change the name?

Stephani: Well, as you can imagine, having an organization that’s called the Alzheimer’s Resource Center, whenever someone interacts with you they’re constantly reminded of that name, of that disease state—of Alzheimer’s. And we learned over the course of our history that we were really working with people to figure out how to live well as they were living with their cognitive changes, and so we didn’t want to be reminding people constantly of the disease.

And so, we decided that we needed to have a name that was more representative of of who we are as an organization—what our approach is, what our philosophy is—and so the name Live Well seemed to resonate more appropriately with us.

Daniel: Yeah, and to Stephani’s point, when we’re engaging with people who are living with cognitive change, a lot of those activities, especially that are community-based, are out in the community. And so, when we have a van that says Alzheimer’s Resource Center on the side of that van, how many people want to get into that van?—versus getting into a van that says Live Well.

Roseanne: I think also, too, it takes away some of the stigma of the disease.

Stephani: Exactly.

Roseanne: What is cognitive change?

Stephani: Cognitive change is really more of a descriptive, a descriptive label, versus Alzheimer’s, which is a disease label. And so, when people are living with Alzheimer’s disease or another form of dementia, what they are experiencing are cognitive changes. Having a descriptive term normalizes people’s condition versus keeping them in this stigmatized, marginalized, disease-associated mentality which is what happens when you hear the term, Alzheimer’s, or dementia.

Roseanne: Versus other types of diseases—much more so.

Stephani: Exactly. Exactly.

Roseanne: So, what is Live Well doing that’s different than what’s been done before, in terms of your services?

Stephani: Live Well has been in the business of being a service provider for people with Alzheimer’s and other forms of dementia—people living with cognitive changes—for over 25 years. And the organization has always been a pioneer in the sense of listening to what it is that people are wanting and needing and creating Services & Supports to be responsive to their needs.

Historically, we’ve always had residential services and we continue to have residential services. But as people are becoming more interested in aging in place and aging in the community, we have also been interested in developing new Services & Supports for people to be able to live and thrive at home and in the community.

And so, our work now really is three-fold. We continue to have residential services for people who need that level of support. But now we’re working with direct services for people who are living at home as well as we’re working with the community.

Daniel: One of the things that we hear from people who are living with cognitive change is that after they’ve received the diagnosis from their doctor, essentially what they’re told is, “We’ll see you in six months.” And so a question that’s been on our minds is to say, “What can we do after a person has received a diagnosis to really support them through this pretty large upheaval in their life—this transition.”

And so, what we are looking at is a host of different types of services that really supports not only the person who is living with cognitive change but also their partners in care and life—so family members, friends, community. So, some of those services include navigation, for example, and that’s a service we now provide through a grant we’ve received from the Administration on Community Living—to really take a look at what are the elements that we have been told and, and have found out through people living with cognitive change and their caregivers that have helped them to really thrive in their communities; that have supported well-being.

And so through this kind of navigator, guiding the family and helping to support the family and the person who’s living with the cognitive change, we can address certain areas that we know are important such as connection to community, connection to meaningful activities and engagement in life, health and wellness, mental health—a sense of, you know, understanding this is a transition; this is a change in my life—how will I address that from my own mental and physical capacity and abilities.

Stephani: And then finally all the planning pieces. People kind of immediately think of the planning pieces and they marginalize all the, the items that Dan just discussed—all the meaningful engagements, all the pieces of taking care of your own health, your own well-being; focusing on, as My Place CT does, optimal independence.

We focus on those factors which will maximize optimal independence and then also do the planning—both the short-term planning and the long-term planning.

Roseanne: Stephani Shivers and Dan Belonick; we’ll continue our conversation in a second. I just want to remind our audience to subscribe to Front Door on i-Tunes or the Apple podcast app, Stitcher, Google Play, or wherever you get your podcasts. Tell us if you like what you hear and write a review—we’d really appreciate it.

Stephani, you mentioned earlier about brain health. When would that be part of a focus for someone who is in an early stage of dementia?

Stephani: It may not come as a shock to your listeners, but your brain is actually a part of your body, and just like you take care of your body’s health, you also have to take care of your brain health. And so, focusing your attention on brain health is something that we should do across the continuum.

As we age, we, we need to actually exercise our brains more intentionally because the things that we would have done in our younger years—working full-time, raising children, managing a household—all of those normal life activities that would engage your brain more intentionally change as we age and we move into retirement and move into more sedentary; potentially sedentary; lifestyle. And so, brain health is something to really focus on diet, exercise, but also through activity.

Roseanne: You also mentioned resilient aging which I thought was a wonderful idea.

Stephani: Well, resiliency—we like this term, resiliency. And we like it because it’s really about bouncing back. It’s about your capacity to engage in something and to be able to overcome it and to move through it, and so it’s really kind of a term that we’re coining about being able to build one’s own capacity to be able to age with a level of resiliency.

Daniel: And I think it also acknowledges the reality that difficulties come. You know, there’s no life that’s lived that hasn’t experienced some sort of difficulty or challenge. And so, as we are engaging people living with cognitive, how can we actually leverage past resiliency—you know, what they already have come through in their life through difficult moments—to now capitalize that and say, yes, now this is a time of challenge in your life, and how will we address it using the strengths and skills that you have built through the course of your life?

Roseanne: To hear you talk about resiliency and have it as part of your program to me is just really, really helpful. It gives one hope but realistic hope.

So, dementia-friendly environment—what is that?

Stephani: Well, ultimately a dementia-friendly community is one where the individuals in the community, the businesses in the community, all of the various sectors, what we would call the sectors of a community, are aware of how they can be supportive to individuals and families living with dementia and that they’ve made accommodations in order to be able to include them in the community.

It includes both changes at the individual level but it includes changes at the community and the organization level. And so, a dementia-friendly community would include restaurants that have created space where a family can come in—maybe it’s a quiet corner in the restaurant; maybe it’s a menu that’s been simplified so a person can still look at a menu but have fewer choices. It’s a police department that has an understanding that when they meet somebody on the side of the road or meet someone who seems confused, they may not be inebriated but in fact they may actually have a cognitive change.

It means a local library; like we have the Southington Library—it just hosted its first Memory Café today. It’s a library that is welcoming to people living with dementia; has specialized materials so that people can feel like they’re welcome and, and wanted in the community.

Roseanne: I feel too that by doing this, you’re mitigating the isolation that not only the individual but the family may experience.

Stephani: Exactly. It’s the community coming together, getting some education on what it means to be accommodating for people who are living with cognitive changes, just like they are accommodating to people who are living with physical changes—maybe they need a wheelchair. What are those wheelchair ramps for people with cognitive changes? How do we create environments where people with memory changes are welcome and included?

Daniel: So, it’s really providing a sense of two things: One, that we’re building awareness that people in the community are experiencing these changes in their life; and then two, how do we build the capacity of the community to meet those needs and to meet people where they are in their life?

Roseanne: I’d like to ask you about COPE, another pioneering program that’s in Connecticut. What does COPE do?

Stephani: So, COPE is an occupational therapy program that is designed to work with caregivers and people living with dementia in their own homes, so family caregivers who are interested in participating in the program can contact us. The program involves about ten meetings together with an occupational therapist where the therapist comes into, to the family’s home; to the caregiver and the person with dementia’s home. They take a look at the environment. They work to identify really where is the family struggling, what are the particular issues that they’re struggling with, and then they go through a series of, of question and answers and problem-solving strategies and brainstorming to figure out what might be going on, and then they come up with an action plan to address particular issues that they’re having.

And through that whole process, it teaches the caregiver how to be able to support their loved one differently and hopefully better, is to, to create an atmosphere where both the caregiver and the person living with dementia are able to live and to thrive and to not have some of the difficulties that they’ve typically experienced.

Roseanne: And that includes an insurance reimbursement?

Stephani: Exactly. So that program is covered under an occupational therapy, and so people’s insurance will cover—if your healthcare insurance covers occupational therapy then we can bill that service to people’s insurance. And obviously, we can talk to people more specifically about their particular situation for that grant.

Roseanne: What would you consider a success of Live Well?

Stephani: Well for me, success looks like people living with dementia and their families being able to maximize their lives and to live with the changes like they would live with any other changes from any other condition, and that they would be able to live in a community where they feel like they are supported, where they’re empowered, where they continue to be contributing and valuable members to society.

Roseanne:Also, too, having access to the Services & Supports in their own community.

Stephani: Exactly. And that’s where My Place CT is such a wonderful resource where you can find out about so many different long-term Services & Supports.

Roseanne: Well, thank you so much for taking an important part of your day to spend it with us. We hope that you can come back again and we can talk more about Live Well. Thank you for coming in.

Daniel: It was great to be here. Thank you.

Roseanne: We appreciate it so much.

Stephani: Thanks for the work that you do to, to share the resources that are available.

Roseanne: Thanks so much for listening to Front Door, a My Place CT podcast. Please subscribe, rate, or review the show on I-Tunes. And you can access all the episodes as well as transcripts and the show link at MyPlaceCT.org. Stop by Front Door for our next episode. And remember, our door is always open. Front Door is a production of the Connecticut Department of Social Services and Mintz + Hoke. My Place CT is the virtual home of No Wrong Door.