So you think your parent might have dementia...

I’ve had a bunch of friends who, in the time that I’ve gone public about my dad’s diagnosis and my journey caretaking for him, have cornered me at bars and whispered about things they’re seeing in their own parents, asking for advice about how to talk with them about it and maybe get them evaluated. It’s no wonder—according to the Alzheimer's Association, as of 2023, an estimated 7.2 million Americans are living with Alzheimer's disease. This number is expected to increase to 14 million by 2060. Alzheimer’s disease, in case you don’t know, is a type of dementia. There are a lot of us loving and concerned adult children out there, wanting to do right by our parents and feeling at a loss for just how.

The first thing I would tell you is just that: you are not alone. Starting to connect the dots on a parent’s cognitive decline can feel so isolating. You don’t want to say it out loud. You don’t even want to think it at first. And yet you start to notice things that you can’t ignore even if you want to.

I remember that these moments, especially in those early days, felt like having the wind knocked out of me. We would be going about our typical family visits, laughing at the kids’ antics, eating my mom’s amazing chicken tortilla soup, going on walks in the desert, and then my dad would say something that didn’t add up and I would feel my stomach clench. Fuck. Fuck. Fuck. I didn’t want to say anything to him, for fear it would embarrass or shame him. I didn’t want to say anything to my mom, for fear it would make her feel protective of him. I didn’t even want to say anything to my brother, for fear it would freak him out. So I just tucked it away and felt scared.

If you are there, remember that you are not alone; others are going through exactly what you are going through and don’t know what to say or when to say it. It’s so scary and sad, and you are justified in feeling all the feels.

The second thing I would tell you is that you are not in control. This is your parent’s journey, and yes, it will also become yours, but it is first and foremost, her’s. It is her brain, her body, her life, her choice. You can’t compel anyone to confront their own cognitive decline until they are ready. (Maybe like confronting an addict a bit? So many of the same emotional dynamics are at play—shame, fear, loss of control etc.) You also can’t compel your parent’s partner, if they have one. My parents have been married for nearly six decades and while it is my dad that has dementia, my mom has been lockstep with him. They had to both be ready to get a neurological assessment for my dad. They had to both be willing to tell us and explore the meaning of it all in more and more public layers—first my brother and I, then their closest friends, then a wider network of friends and family.

My beautiful dad early on in his dementia journey.

Just because you’re not in control, doesn’t mean there aren’t some skillful ways to approach this tender season of life for your parents. You can encourage them to get a “brain baseline,” rather than saying, “I think you have dementia and I want you to get tested.” This gentler language can help them feel less defensive and maybe even let some curiosity in. Plus, you can use it for both parents if that helps make the spotlight less bright on just one of them.

You can also refrain from “showing them the evidence” of their decline. If they’re resistant to confronting it, no amount of “receipts” are going to help them reckon with the truth. In fact, the more you flag their memory lapses, diminishing capacities etc., the more flustered and unsafe they are going to feel around you. They might shut you out even further, which will only prolong their denial. If you need the paper trail for your own sanity, write it in a notebook, but keep it to yourself.

I’m someone who craves truth, transparency, and words, so I remember really, really wanting a diagnosis for my dad. It was like I needed someone to say, “Yes, it’s real.” It’s an ironic yearning because, of course, I didn’t actually want it to be real. But the only thing worse than it being named was it not being named.

But here’s the thing—once it’s named, there isn’t a whole lot you can do with the name. Dementia is a long, hard, unpredictable slog and there is no great medication. So being in a rush to get a diagnosis makes sense, emotionally, but medically, it’s not as significant as your rational brain might wish it were. (This is something many people would disagree with me on, so do your own research and take this with a grain of salt!).

You are likely to first get the diagnosis of “mild cognitive impairment.” It’s a gentle on-ramp into the harder stuff, and bless its heart, it does the job, but it can also feel like sort of a euphemism.

Here’s what is important about reckoning with the diagnosis: the gift of finite time. Once you know that your parent has dementia, you know that you don’t have forever with them (this is true for all of us, of course, but the diagnosis puts it in sharp relief). Now you get to ask yourself the important questions—when and how do you want spend time with them? What kinds of documenting and archiving do you want to do? (I treasure my dad’s voicemails, which I likely would have deleted had I not known he had dementia.) What do you need to say? (Starting with thank you and I love you so much, hopefully.)

I also loved dancing with my dad, but having his diagnosis made me jump on it every chance I got.

That’s the relationally important stuff. There’s also some administratively important stuff: do they have all of their medical, financial, and legal records in order and where are they? If they don’t, now is the time. I can’t tell you the number of hours and tears that my mom and I endured because she didn’t know passwords on some of my dad’s accounts and/or wasn’t a joint owner of them. Who has power of attorney? Get a power of attorney. Doing all of this before your parent’s brain really goes on the fritz will save you so much heartache and time down the line. The last thing you want to be dealing with when you are taking care of your parent as they continue to decline is lost passwords and the sludge of customer service. Trust me.

Don’t read The 36-Hour Day. That’s the book that a lot of people talk about when they talk about dementia, but it’s not a good fit for where you’re at if you’re just starting to reckon with dementia. It will just freak you out and leave you feeling daunted. Do read On Vanishing by Lynn Casteel Harper, Creative Care by Anne Bastings, or maybe Travelers to Unimaginable Lands by Dasha Kiper.

Your parent’s brain isn’t the only one that is going to grow and change in the next decade. So is yours! In some ways, it will be hard—Kiper argues that it is the caregiver’s brain that can’t evolve most dramatically, not the afflicted. In some ways, it will be beautiful—caring for someone with dementia grows your capacity to be creative and present and physically loving and can transform you into someone who has no time for bullshit. (I’ve got a whole annotated list of books on dementia here.)

Finally, I’ll remind you of a few things I’ve written before that might make you feel accompanied:

• The gift of the fallen stranger - the first newsletter I ever wrote about my dad’s diagnosis

• The unbearable lightness of biography - a newsletter about the weight of telling other people about my dad as he loses his memory

• Longing for a more palliative world - a newsletter about witnessing others respond to my dad as his capacities fade

There’s a lot more where that came from if you look through the archive on elder care of Examined Family.

And finally, I return to the beginning: you are not alone. I am here with you, as are 7+ million other people (and probably twice that, really) who love someone with dementia. You are not alone.

My big-hearted brother helping my dad recently.