Communication, Change, and the Self: Advice from an Occupational Therapist

An interview with Emily S. Gavin, MS, OTR/L, CDP, your Philadelphia-based Dementia Care Expert, Occupational Therapist, Caregiver Coach

Introduction & Background

Welcome to this special edition of the Simon Cares newsletter! Daniel Brown and Rachel Whyte, co-founders at Simon, recently sat down with Emily Gavin, an occupational therapist whose private practice is dedicated to dementia care. Emily provides functional strategies to help caregivers and people with dementia understand cognitive impairment and adjust their daily approach.

Daniel Brown (DB): Emily, thank you for taking the time to speak with us. Before we dive into the specifics, could you tell us a bit about your background and how you found your way into this specific field?

Emily Gavin (EG): Occupational therapy is actually a second career for me; I transitioned from IT. When I first started practicing in a skilled nursing facility, I walked in the door and felt completely unprepared to treat people with dementia. I wondered how I was going to do therapy with people who wouldn't remember what we had done, and how to deal with seemingly strange behaviors. I was shocked at how unprepared I felt to deal with these new behaviors. A few years later, my wife and I moved in with my in-laws to care for my mother-in-law, who was living with Parkinson's and Parkinson's dementia. That personal experience, combined with extensive continuing education, fueled my passion. Following a layoff in 2023, I decided to start my own private practice because there wasn't a job out there that would allow me to focus solely on this specialty. Now, my business is based around providing occupational therapy to family caregivers of people living with dementia.

Clinical Shock & Communication Lessons

DB: Tell us more about that shock. I think that’s something a lot of people can relate to.

EG: As a new clinician, I had no confidence. There was a certain amount that was trial and error. But I sought out continuing ed. There were a lot of things that were a shock working in a skilled nursing facility. Learning in a classroom was a whole different ball game than sitting down with someone and doing a dressing or toileting task with them. One of the things I remember is not understanding how to give people instructions so that they would understand me. There’s this whole hierarchy of multisensory cues that you can put into place to find mutual understanding. Reducing the number of words you use, simple instruction, understanding if verbal is not working and adding gestural cues. Doing a bit of tactile cuing, to help someone lean forward so that they can then sit down. Then you get to help people move their bodies. Demonstration is also a good way of cuing and communicating. All this gives people more sensory context so that they can translate the language. Another big part of it was learning that reasoning with somebody who’s reason is not functioning well is a) not effective and b) can lead to conflict. You’re giving them reasons when reason is not the foundation of their motivation here. Those are the things I wish I knew in the beginning, the communication piece and avoiding the reasoning-conflict trap.

Understanding Occupational Therapy

Rachel Whyte (RW): Coming from the hospital world, I did not realize what an important piece of the care team occupational therapy was for this population. For those who might not be familiar, could you break down what occupational therapy is, and what its role is in the dementia space?

EG: Absolutely. Sometimes people hear "occupational therapy" and think it has to do with job training, or they view it strictly through a medical model of helping with basic tasks like dressing and bathing. Others might think physical therapy is for below the waist and occupational therapy is for the upper extremities. But the discipline is truly all about function; it is about helping people overcome barriers to the things they want and need to do in life. When physical, mental, or cognitive challenges prevent a person from performing their normal functions, occupational therapy involves problem-solving to adapt the task or the environment. In dementia care, we approach cognition functionally. By observing how someone cooks dinner, for example, we can see how they use their cognitive abilities in a real-life context, and then we figure out how to accommodate the disability to help them successfully engage.

Guidance for Early Diagnosis

DB: If you were speaking to a family or a couple facing a recent diagnosis—maybe it happened last month or even yesterday—what guidance would you give them for those early stages?

EG: If it is in the very early stages, I recommend adjusting expectations regarding higher executive functions. Organization, planning, memory, and the ability to deal with things in the abstract are really early things that become impaired. Often, family members feel that the person with the impairment has simply gotten more stubborn or less reliable. Helping everyone understand that these behaviors are a result of impaired functions is crucial. Another important dynamic comes from what is called the "obsolete self-concept." As adults, we form a solidified sense of ourselves as capable and independent. When cognition declines, that new reality often never gets integrated into their sense of self. So, if a caregiver approaches them in a way that conflicts with that established self-image, it can be jarring, insulting, and lead to conflict.

Practical Strategies for Daily Life

RW: At Simon, we are really passionate about meeting people where they are and keeping them independent at home for as long as possible. What are some practical, basic strategies families can use to help support that?

EG: Modifying activities to match a person's current cognitive ability is incredibly important. One very practical tool is using simple written lists of what is happening today. Giving someone a prompt they can refer back to prevents them from having to ask family members the same question repeatedly, which keeps stress levels from building. I also stress that routine and structure are fundamental because they essentially stand in for executive function. If your day unfolds in a similar way every day, you don't have to dynamically plan and organize it. For example, my father-in-law had a lifelong routine of bringing my mother-in-law tea in bed at 6:00 a.m., coffee at 10:00 a.m., and tea time in the late afternoon. Throughout her disease, her whole world was safely organized around hot drinks.

Closing Reflections

DB: That is such a beautiful example. As we wrap up, do you have a final message of encouragement you would want to share with our community?

EG: I guess it is that things are changing, and it is possible to adapt. It may not be possible to reverse this process, but a family unit can adapt, change, and find ways to still really be together, and be loving and peaceful with each other. Just because you can't do something the way you always did it, doesn't mean you can't engage with the world and be a productive, active, satisfied person. Especially if you have people supporting you.

DB: Thank you so much, Emily, for sharing your expertise with us. Readers can always respond with questions, comments, or feedback, or if you have a story you’d like to share, we are always open to work with our community at Simon.

Emily Gavin founded PhillyCare Coaching, providing dementia care consulting, coaching, and occupational therapy treatment for families affected by dementia in the Philadelphia area. Emily is an occupational therapist and trained coach with 14 years of experience in creating better dementia care. PhillyCare Coaching accepts Original Medicare and some Medicare Advantage plans for the person living with dementia.

You can find Emily's through her website or via Linkedin.

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