My dad got Alzheimer's when I was in my 30s. Here's what I wish I'd known.
· Business Insider
Kathleen Korpela
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- Kathleen Korpela's dad was diagnosed with Alzheimer's when she was in her mid-30s.
- She explains what she learned in the years since, including how to talk about it with her kids.
- She said it was tough to navigate the transition from adult child to parenting her parent.
This as-told-to essay is based on a conversation with Kathleen Korpela, founder of Living Goldenwell. The following has been edited for length and clarity.
My father was diagnosed with Alzheimer's in his early 70s, when I was in my mid-30s with a 4-year-old and a baby, getting ready to go back to work after maternity leave. It was around eight years from my father's diagnosis until his passing in October 2024.
I learned how little support and resources there are for adult children stepping into supporting aging parents, and really how woefully unprepared people are for the eldercare phase. So I founded Living Goldenwell in 2025 and created the Caregiving from the Middle program to provide comprehensive support, education, and guidance to women stepping into eldercare.
It was extremely challenging to navigate the transition from adult child to effectively parenting my parent. It was definitely a challenge to navigate that dual role identity without losing myself.
Here's what I learned.
I wish my family and I had prepared ahead of time
My brother and I had to quickly take action in developing an eldercare plan upon my father's diagnosis because we hadn't done the early planning steps, and we hadn't had the conversations that I really advise and advocate families to do. We knew that with a dementia diagnosis, we were dealing with something very serious.
I researched different living and care arrangements, and we eventually found him a placement in an adult family home. People can get wonderful, more personalized care than they might get in a larger senior care community in a care facility setting.
We moved him to a couple of different adult family homes as his dementia progressed, and he needed more and more care, until ultimately we found a wonderful group home that actually specialized in supporting adults with dementia specifically.
When it comes to conversations around sensitive topics like health, finances, paying for long-term care, moving out of their home, and downsizing, I recommend starting early and thinking about broaching these topics and questions with your parents as part of an ongoing dialogue. These are not one-and-done decision-making conversations. The earlier you can start talking about it with them, the more it normalizes it. They get more comfortable revealing things about maybe their wishes, their desires, and what they are unsure about.
Are you taking care of a parent? Reach out to this reporter to share what that's been like at [email protected]. How much does it cost you to take care of a loved one? Fill out this form to let us know.
I learned how to become an effective advocate
Becoming an effective advocate for my dad was important for ensuring he received the best quality of care he could. I suggest asking doctors, social workers, and senior care communities a lot of questions, so that you can learn, become more informed, and make better decisions.
The way that I became one was just through practicing, asking questions, getting curious, getting educated, and getting involved. It's about recognizing that I can't be an effective advocate unless I have knowledge and information. I can't ask effective questions of doctors, social workers, and senior care communities if I don't know what to ask, don't have the information, and don't feel empowered in my role to begin with.
Advocacy can come up in medical and healthcare situations. It's also particularly important when you are trying to make decisions around where to move mom or dad — what type of senior care community or living arrangements will be best for them as their needs change, grow, and evolve.
My brother and I wanted to transition my dad from one adult family home to another. When I was looking and touring adult family homes, evaluating where my brother and I might move him to, I was asking more specific questions about the adult family homes that we were touring to really make informed decisions as to whether a particular adult family home would be the right next step for him or not.
Advocacy involves learning to be one for our parent or our elderly loved one, but it also means learning to be an effective advocate for ourselves, so that we don't lose ourselves in the process.
Adult children who are finding themselves in the middle of caring for and supporting aging parents and raising families need to focus on their self-care so that they can proactively and effectively manage their stress. This looks like advocating for yourself, setting boundaries, clarifying your role, asking for help and seeking support, and working on your mindset.
I wasn't financially prepared
I didn't understand Social Security and the difference between Medicare and Medicaid. I had to self-educate very quickly and very painfully on those topics so that I could become an informed advocate for my father and help guide and advise him. I had to get curious, educated, and involved. I had to do it over the span of a couple of months, which is practically nothing when you're very busy, you're leading your own full life, you've got a lot of other commitments and demands on your time going on.
There are three concrete steps I wish I had taken ahead of time that would've made decision-making easier. First, create an inventory of your parents' financial life. It's hard to plan financially for what they might need for long-term care if you don't understand their current means. Next, you want to seek to understand their sources of income now and in the future. Third, you want to understand their current and future monthly expenses. When you have an understanding of that, you can overlay it into the conversations you've had with them about how they want to live as they start to need more help.
I think families significantly underestimate the financial cost of long-term care. Caregiving can be extremely expensive. That's why it's critical to financially plan for long-term care scenarios when developing an eldercare plan.
I wanted to make sure my kids and their grandfather had a relationship
My two kids at the time of my dad's diagnosis were 6 months and 4½. At those ages, they're really too young to comprehend aging decline and the end of life, especially through the lens of dementia. But certainly, I sought opportunities to maintain the social and interpersonal connection between my kids and their grandfather.
I would bring my kids to visit my dad at his adult family home. The reason I did that is really twofold. No. 1, it exposes kids at an early age to our elderly folks. It exposes them to aging, to decline, to the end of life, which is good for them to be exposed to so that they don't grow into adults fearing those things or death. No. 2, it was beneficial for their grandfather to maintain that relationship with his young grandchildren because it really helped him socially and emotionally.
As my father got into the later stages of his dementia progression, his verbal communication became very hard to understand. And so my kids would ask, "Why is grandpa mumbling?" And I would just have to explain, using very clear, plain language, that part of grandpa's condition is that it makes it hard for him to communicate, but even though he's having a hard time communicating verbally, he still senses you and really enjoys having you around.
People can involve their children in different ways. Baking in the kitchen can be a great way to interact with a grandparent. Doing puzzles could be great for an elementary-age child to continue the relationship with a grandparent. If you have a high schooler and one of the things you do with your parent is help manage medications, maybe that's something you can involve your teenager in.
Korpela founded Living Goldenwell last year.Danielle Barnum Photography
I wish I had known I wasn't alone in this
I feel really good about what I was able to do for my father and how I navigated through learning all of this. I regret not seeking specific support and guidance much earlier on. I attempted to talk with my friends and other personal and social networks, and they could not relate to what I was going through. They offered me a bunch of random opinions, but they really did not offer me concrete advice or guidance I could trust. That would have saved me a lot of time, a lot of pain financially and emotionally, had I really sought that support that was right for me.
I sought out like-minded people through personal and professional networks who were navigating similar situations. I looked for women I could relate to, who could empathize with me, and who could really make me feel seen, heard, and understood throughout the whole elder caregiving experience because they were going through it themselves.
I learned how to be open about caregiving in the workplace
I worked for a few corporate employers throughout the eight years I supported my dad. I decided to leave the corporate world and step into founding Living Goldenwell full-time after my father's death.
When it comes to navigating elder caregiving responsibilities amid a career, it's important to advocate for yourself in the workplace and adopt the mindset that eldercare responsibilities are just as valid and important as other responsibilities in our lives, including our professional responsibilities.
In order for us to show up as our most effective selves and highest performers at work, we need to be able to share with colleagues, our managers, and our teams what's going on in our personal lives so they can come alongside and support us.
I would bring it up casually in the way you might talk about parenting. If someone asks, "How are the kids?" Say, "Great. Oh, and I'm also supporting my dad, and he's doing well," or whatever the case may be. Over time, people can ask about your parents and how they're doing in the way they might ask about your kids.
My manager and my colleagues can't support me if they don't know what's going on with me.
There's a level of sharing that's appropriate for the workplace. Most of us, we compartmentalize what's going on in our personal lives. I think we need to adopt this mindset that when we share a bit about what's going on in our personal lives, whether that's eldercare, parenting responsibilities, or other things that are happening in our lives, we are able to genuinely connect with others on a more human level.
By talking about my situation openly, I gave others permission to ask questions and reveal more about themselves and what they were silently dealing with regarding their elderly parents. It was a genuine way to connect with others, on a human level, for a life experience that's increasingly universal and shared by so many, yet hardly talked about in professional settings.
Have you made caregiving decisions for a parent? Reach out to this reporter to share your experience at [email protected].
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