Three pieces of advice for care partners
Care4u keynote speaker, Karen Stobbe shares her top advice.
We asked our 2025 Care4u keynote speaker, Karen Stobbe, for her top three pieces of advice for care partners. Here’s what she has to say.
No one fits perfectly into a box
Firstly, I think it’s important to understand that each person living with dementia is an individual and dementia affects everyone differently. No one can predict exactly how dementia will impact someone’s brain. We all have different life histories, including other possible health conditions, and these things make dementia a unique experience.
Why is this important? I thought back when I first heard about the stages of Alzheimer’s disease. I believed these would tell me exactly where my dad was in the disease and help me know what to expect. Well, they didn’t. These stages are really just one possible path for a person who only has Alzheimer’s disease and nothing else going on. Most older adults have three to four other conditions besides dementia, which can cause it to look different than those stages.
If you know someone living with dementia, you’ll see they might be a little in stage two, some in stage three and maybe a little in stage four. Part of person-centred care means looking at someone’s lived experience, who they are as a person and acknowledging their complexities. No one fits perfectly into a box. Everyone living with dementia is a unique person with their own life story. So, don’t focus on those stages.
Sometimes you just have to let it go
Secondly, if a person living with dementia is doing something that bothers you, ask yourself, “Who is this hurting? Is it a matter of health or safety?” Maybe it’s bothering you because it’s not how they may “normally” act. Or maybe because you want them to be the person you expect them to be – your gentle mom, your outgoing dad, your sweet aunt, your loving husband. Well, they are still them. Maybe they are just adjusting to a changing world around them.
Many behaviors that feel concerning to us are actually the person’s way of coping with confusion or finding comfort in an increasingly unpredictable world. If they want to wear the same shirt daily or eat dessert first and it’s not harmful, let it be. Save your energy for what truly matters. If they are doing something that’s just bothering you, making you embarrassed or unsteady, let it go. They are not trying to give you a hard time, but are likely having a difficult time themselves.
You cannot pour from an empty cup
Lastly, take care of yourself. Forty percent of care parters share that they have physical, mental or physical ailments resulting from caring for another person and not themselves. Caregiver burnout is real and remarkably common. You cannot pour from an empty cup.
“The first little thing that is wrong with Mom, I call or run my Mom to her doctor. But I don’t think I have had a physical in over five years.”
If anyone offers to help you in any way, say yes. But, tell them to call you tomorrow and you will think about how they can help you. Maybe a friend can stay with the person living with dementia while you take a break. Maybe a neighbor can mow your lawn or walk your dog. Don’t leave the ball in your court. Tell them to call you and make an offer of what they feel they can do.
One final thing to remember: be kind to yourself. Be patient. Take a deep breath. Count to 10. Practice meditation. You’re doing the best you can.
About Karen Stobbe
Karen switched her career from theatre and improvisation to healthcare when her dad, Manfred, was diagnosed with Alzheimer’s disease. Since then, she has served as the Director of Education for Pioneer Network, written over 12 training programs and spoken all across North America. Karen was also the co-creator of the Hand in Hand Training program for Centers for Medicare & Medicaid Services, which was distributed to every nursing home in the U.S.
Karen will be presenting the keynote and closing presentations alongside her partner, Mondy Carter, at this year’s Care4u Family Conference.
