What would YOU want, if you had dementia?

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This Ask Rachael Post is for our Caregiver Community.


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I received a great question from a reader just the other day on my blog: 

I was told that I have early onset dementia about 5 years ago. My Dad and 4 of his siblings have died or have Alzheimer’s. I try to learn as much as I can about dementia care. I was just wondering if I should try to teach the people who will be helping me about dementia care or just let nature take its course? My wife isn’t open to thinking about this care yet.

I responded: Absolutely, teach those who will be helping you. Make a list of things you want people to know, like little habits and likes and dislikes you have. For example, I always sleep holding a pillow. A spouse will know something like this about you, but not everyone. It would be great if your wife would start learning now, rather than wait. Hard choices only get harder when we procrastinate on talking about them. If you’re open to more care (home care agency, adult day, assisted living) let your family know this. Families have a hard time making decisions when they think their loved one doesn’t want any extra help (and it sounds like you’re open to it, which is great.)

I wrote “16 Things I Would Want If I Got Dementia” probably five years ago at this point. Despite the fact that I wrote an entire book, am working on two more, and publish blogs posts weekly, my “16 Things” list is STILL the most popular piece I’ve ever written! I think I figured out why, too: it really speaks to people.

Probably the best thing that you can do is to start a conversation. Write down items that you want people to know about you, and talk to your loved ones about what they want you to know.

So, what would you want people to know if you got a diagnosis of dementia?

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of three published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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16 Things I Would Want If I Got Dementia

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I wrote this poem years ago, but to date, it’s the most popular piece I’ve ever created.


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