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  • Writer's pictureKimberly Massey

Dementia Caregiving: If You Don't Know What You Don't Know, How Do You Find out What To Know?

One of the difficult things about writing a blog for family and caregivers of people with dementia is assuming what readers may know, and what they may not know. Dementia is not a topic most of us discuss on a regular basis. And though over 10% of people will provide care to a loved one, that doesn’t mean everyone is intimately knowledgeable about the lived experiences of someone with dementia and their carers.

As a social worker, I have had a lot of exposure to mental and physical health challenges and other challenges to healthy living. Not only that, but I have an unrelenting need for information. I enjoy researching and finding the answers to questions. Unintentionally, I have come across as a know-it-all more than once in my life.

The most memorable instance of this was demonstrated in a discussion with my boss and co-workers over a decade ago. I don’t recall the exact topic we were discussing at lunch, but I recall a co-worker making some observations and putting forth some questions. I hesitated a moment, but I had, in fact, been researching that very thing not long before. So, I shared my knowledge.

Later, in the office, my boss said to me, “Kimberly, not every question has to have an answer. Some questions are rhetorical!” I wanted to reply, “Well, to me, there is no such thing as a rhetorical question!” But, I did know to hold my tongue in that moment, though I may have over-spoken earlier. (And, as a side note, I acknowledge and respect rhetorical questions- I do sometimes have difficulty knowing when someone is just voicing a question, and when they want an answer. I love answers!)

In another workplace, I heard something that I felt was profound. My team was working on early use of electronic health records in the medical field. The project was federally funded, and our project officers were, correctly, watching our progress closely. We ran several tests on the programs reporting functions, and the data was wrong. Very wrong. Over a few weeks we had several calls to discuss our progress in finding the cause of the problem, as well as defining some solutions. I was listening in as our internal project director answered questions from the project officer. She asked, “So, David, what DO you know?”

David hesitated a moment before answering. Then, he said, “Well, we do know some things. And, there are some things that we know we don’t know. The struggle is knowing what we don’t know if we don’t know it, and figuring out how to know it.”

How do you know what you don’t know? How do you know what you know, that others don’t know?

I share these stories to say that understanding the gap that readers have between what they know, what they know they don’t know, and what they… just don’t know… is very difficult. I confess that I am sometimes surprised by what families of someone with dementia don’t know. I also confess that there is much that I do not know, whether I know it or not.

So, please forgive me if it seems as if I am “speaking down” to you and sharing things you already know. Please forgive me if I have assumed you know more than you do. Please join me on our journey of providing family care for someone with dementia so we can share our travels with those on the path below and those on the path ahead.

In practicality, I am trying to provide basic information about a topic for those just learning about dementia. My goal is to offer some insight along with the knowledge about how this topic may relate to you regardless of where you are in your caregiver journey. But, more than that, it’s to point you to resources that you can use to follow up on a topic, when you realize there is more you need to know.

I believe in most cases that knowledge is power. The more accurate information we have, the better able we are to make informed choices and experience fewer regrets. To this end, when possible, I will offer links to further your knowledge on a topic or to provide more context for future stages of the journey.

I always welcome your feedback, through email, likes, and shares. And comments. I’d love to hear your point of view in the comments!

From my tenacious heart to yours,

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About Me

Caregivers, Dementia, Starfish and the Ocean

Hello! The Tenacious Heart Project is where I share with you my strong belief that we can do better for caregivers and people with dementia.  

It may be overly optimistic thinking that we can improve something as big and important and caregiver support and dementia.  I do understand that.  But in my nearly 30 years in the nonprofit sector, I have seen lives change.  I know it happens on the individual level and I know it can be done on a societal level.

I have my strengths and weaknesses.  One thing I am good at is solving problems.  I like thinking about solutions and how to put those solutions in place.  As noted already, sometimes I never give up.  That stubbornness has benefited my family and I a lot.  When my daughter needed a health advocate, we looked for solutions.  It took five years to find the right specialist, but since we did 18 months ago, her quality of life is exponentially better.   

The more my dad and family are affected by dementia, the more I am compelled to improve options for caregivers and the people they support.  The Tenacious Heart Project is just one small way I hope to help.  I feel like we are all the starfish on the beach.  One day, thousands of starfish washed up on a beach.  Taking a walk, a gentleman saw a young girl carefully picking up a starfish and returning it to the ocean.  He asked her, why are you wasting your time? You'll never help get all the starfish back into the oven.  To which she promptly replied "maybe not, but I helped that one." And she moved on, putting each starfish she encountered back into the ocean. 

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