CMS GUIDE | DEMENTIA CAREGIVER STORY
Charting a Path to GUIDE:
A Caregiver’s Journey with ianacare Support
Learn how ianacare’s support services, particularly the dedicated Caregiver Navigator, helped Wayne navigate the challenges of his mother’s dementia diagnosis, ultimately reducing his stress levels and improving his ability to care for her.
When Wayne, a full-time employee at a large tech company, noticed subtle but concerning changes in his mother’s behavior, he was initially uncertain about what it all meant. Her demeanor seemed to shift rapidly, and incidents began to pile up, from forgetfulness to strange lapses in judgment. The tipping point came during what was supposed to be a routine trip to Florida—a fall and a series of unusual behaviors alerted Wayne that something was very wrong. The subsequent doctor’s visit brought clarity: his mother was diagnosed with early dementia.
Shortly after, while trying to make sense of this change and understand what might lie ahead for him and his family, Wayne turned to ianacare for support. After attending a live training on how to care for a loved one with dementia, he knew he needed more support. Wayne’s journey, leveraging ianacare’s Navigators and platform, provides a real-time glimpse into how our platform assists dementia caregivers while aligning with the CMS GUIDE model requirements.
Many caregivers, like Wayne, find it challenging to access reliable support while caring for a loved one with dementia. The GUIDE model presents a unique approach to patient-centered care, emphasizing the importance of reducing stress for caregivers. We are proud to partner with both established and new GUIDE entities to offer meaningful and engaging support to caregivers. Wayne’s story highlights the positive impact this support can have on caregivers’ lives.
In that live session, Wayne not only found critical information on what he might be able to expect moving forward with his mother’s care, but he also found a sense of community through peer support. He met dozens of others who, like him, were either beginning their caregiving journey or were well into it, facing many of the same challenges and fears.
"There was a lot of interaction going on…it was like this exchange of literally “I am not alone”.
It was very helpful to understand that there are other people going through similar things. I asked a question in the chat anonymously, and people jumped in with really helpful ideas and suggestions. It was so nice to know I’m not alone."
Wayne found these events to be an interactive, supportive environment where caregivers could ask questions and share their experiences openly. He continued to attend, asking questions anonymously, receiving practical advice and comforting reminders that he wasn’t alone. The live session helped Wayne feel more prepared as his mother’s condition progressed quickly.
"We were able to get her hip surgery and kind of get her back on board. But throughout that whole process, I noticed her memory is really not what it used to be.
So, it was fortunate that I had attended that webinar earlier because I was at least a little prepared for what she was going through. I knew that some of the things that she was doing and saying were because of the dementia and that this is kind of what I'm going to be in store for. I wasn't as horribly shocked as I could have been. It helped me advocate better for her."
One of the more frustrating and emotionally charged parts of Wayne’s caregiving role has been managing his mother’s medications. While clinicians handled prescribing and reviewing her medications, ensuring that she adhered to her medication schedule fell squarely on his shoulders. He found himself in repeated battles over simple reminders, encountering resistance at every turn. These frustrating encounters, compounded by her defensiveness, often left him drained and uncertain about the best approach.
"I would show up at her house and go check her medicine, and I'm like, ‘Oh mom, you missed your meds this morning, better take them’. ‘Oh no, I did take them’. ‘You know, mom, your morning meds are in the container today, I see them here. Let's take the pills.’ ‘I'll get to it.’ ‘How about we do it now, mom?’ ‘Well, I don't feel like it right now.’
You have those weird kind of conversations that you're like, why am I having this conversation?"
Wayne once again was able to turn to ianacare for support, this time in the form of a dedicated Caregiver Navigator.
To break through these frustrating moments with his mother’s behavior, Wayne turned to his Navigator for coping mechanisms and tactical strategies to approach the situation differently, to leave his mother feeling encouraged to comply with her medication schedule vs. resisting and feeling micromanaged by her children. Being able to take a different approach relieved the stress and pressure on Wayne, alleviating some of the daily burden caregivers feel.
In addition to the training and peer support Wayne was able to receive, he was matched with a dedicated Caregiver Navigator—a highly trained professional with a background in social work, nursing, or a similar caregiving field. This Navigator became an invaluable resource, offering personalized guidance tailored to Wayne’s unique situation.
When Wayne was ready for more personalized and expert-led support, he reached out to his Navigator for 1-on-1 guidance. His Navigator was always ready to respond, typically within the same day, providing not just answers but actionable steps. This support went beyond simple guidance; it was practical, empathetic help that saved Wayne time and provided peace of mind.
"Throughout that whole process, I had the navigator as a resource, and she has been phenomenal.
There's a lot of guidance for me that I just would have no frame of reference before this. I don't know what I'm doing, so it's good to have somebody that really does know."
Wayne relied on his Navigator not only for general support, but hands-on assistance in finding and securing non-clinical community-based resources and services he and his family need.
When caregivers find themselves in the trenches of care, it can feel overwhelming and impossible. Many aren’t sure where to turn for support, or where to begin.
Once matched with his ianacare Caregiver Navigator, Wayne knew he had a go-to expert, a trusted resource who was there to listen and problem-solve with him any time he needed. This reliable source of support alleviated both emotional and logistical burdens, elevating new ways to cope with challenging behaviors and family dynamics, and more easily searching for and locating resources that would improve the quality of his and his mother’s lives.
"My Navigator was able to give me some strategies on how to actually communicate with my family members, and share some of the things that we’re likely to run into."
She’s that person I can go to and ask, what are the next steps in terms of mom's care? Can look ahead to say, okay some point, she's not going to be able to live at home, and what do we do then? And she actually went out and did the research in my mom's city and said, okay, here's five facilities. This one's taking new patients. This one's on a waitlist. This one has memory care, and this one doesn't. By the way, here are the prices that you can expect. So that helps me prepare my mom's estate and make sure I have the power of attorney necessary.
She's always either got instant advice for me, or she will say, ‘Hey, let me go research this one for you. And then within a day, she can come back with answers.’"
One of the most crucial takeaways of working with his Navigator has been a sense of lightened burden— a key focus of the CMS GUIDE model, which aims to alleviate the physical, emotional, and logistical weight that caregivers bear. For Wayne, his Navigator has been a source of stability, always providing actionable solutions and emotional support exactly when he needs it most.
" I will tell you that since I've engaged with ianacare, my stress levels have gone down regarding this situation. I don't know where I would be right now.
In terms of lightning, the load, just the idea that I could go to one person and say, I need to plan for when mom needs to go in a facility. Can you help me? And she went and did all of the research that would have been half a day's worth of phone calls or email searches for me. And I have a full-time job.
She's just been a godsend to me, a stable resource in the middle of what is a kind of a swirling mass of confusion and stress. I can be completely freaked out and send her a three-sentence email and she's right on it and then I can get on a phone call with her and explain the situation. She's just got that calm demeanor, but she's also got the ability to help point me in the right direction.
Sometimes it's important to have somebody to, I mean, that's why I call them navigators, right? To just kind of point you in the direction and tell you this is where you got to go."
Interested in learning more about GUIDE and how ianacare can help fulfill model requirements?
