Home » News & Events » Dementia Doesn’t End Your Story. It Hands It to Someone Else.
by Tom West for his Substack, “Age Against the Machine”
Over my 30 years of working with families on long-term financial planning, I have seen many difficult circumstances: terminal illnesses, loss of beloved spouses, dysfunction that rips families apart at the moment when they need to come together. But nothing is as uniquely devastating as a client who received a dementia diagnosis.
The range of reactions varies, but there are two that are the more common ones I have seen. They illustrate what makes dementia so different from other terminal diseases and how important it is to realize early that the decisions you make while you still can make decisions will make a world of difference to those who will have to make decisions for you later on.
Before I introduce them, I want to mention that it’s important to understand the anticipatory grief that comes with a dementia diagnosis. They have to live with a future where they know they will become less cognizant and capable of not only being independent, but being present in their own lives. They get told about all of the things they can’t do or soon won’t be able to do, as well as the things they need to do now while they still can. All of this really shatters their agency.
That’s why, when I work with clients who receive a dementia diagnosis, I start with questions to ease them into talking and thinking about what I can help them with. Even if the questions are rhetorical, they let the person find their own footing through their present and future circumstances. Broader studies on dementia have explored this approach for a wide range of medical, physical, and psychological discussions, and I have adapted this for my own work helping families deal with the financial planning implications of dementia.
He came in quiet and let his wife do the talking, even though he was still sharp, articulate, and working. He had just gotten the diagnosis and was referred to my team to do some financial planning.
After reviewing their circumstances, I asked him about previous financial decisions he had made, the ones that he was most happy with. He was not interested in being reflective. “If I’m not going to remember any of this, why am I planning anything?” Mr. Frozen said. “This is her conversation.”
I knew this was the paralysis version of grief. Everything collapses into meaninglessness because continuity is uncertain. We didn’t accomplish much during that first meeting.
The next meeting, he arrived early before his wife. I tried a different tack, asking him questions to help him reflect on his present and future selves. “You said that you don’t see the point of planning if you aren’t going to remember anything,” I said. “Does that mean that the version of ‘future you’ that really matters is the only one who remembers being you? What about a version who doesn’t?”
He didn’t answer and didn’t change expression as I went on.
“Maybe consequences still unfold after memory disappears,” I continued. “Think about your wife. When things get harder, who’s she dealing with? Maybe not the version of you sitting here now, but the later version instead. Hopefully she’s not confused, frustrated, or even scared. What would you want her experience to be like?”
Now he leaned forward and looked up.
“Right now, you’re not planning for yourself,” I said. “You’re shaping the environment she’s going to operate in with you and for you. So the real question is: Which version of you is she going to carry forward when she’s making decisions on your behalf?”
That’s the shift—from existential freeze to practical responsibility.
What he needed in that meeting was the right framework to start action and something that reached beyond his imagined diminished future self. This small success did not solve the broader depression he was dealing with, but we did get productive when we started talking about the “tools” that could help him and his wife. He later said that we gave him some levers and showed him how to use them.
This client had the same diagnosis window but could not have been more different than Mr. Frozen. Mrs. Control was a solo ager and fiercely independent. She came in with a binder that boomed when she dropped it on the table.
There were tabs. Color-coded sections. Spreadsheets for projected cognitive decline scenarios. Instructions for everything—down to how her coffee should be made in five years.
At first glance, it looked impressive. I’ve learned, though, that it’s something else: an expression of fear disguised as control.
“I need to make sure everything is handled exactly the way I want,” she said. “I don’t want to become a burden or be at the mercy of other people’s decisions.”
This appears reasonable on the surface, but she’d gone too far in the other direction. “How sure are you that you’ll follow or understand these instructions?” I asked. “I want to stick up for ‘Future Mrs. Control’ and try to be as supportive of her at that time. Do you think you could be directing a version of yourself that may not be as capable as you are now?”
“I’m being proactive,” she countered.
This is the opposite problem of Mr. Frozen. Not paralysis—overcompensation. Trying to eliminate uncertainty instead of working with it. And it requires a different intervention.
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