Guide: Talking to someone with dementia: What to say

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Photo by donireewalker

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What to say

We touched on spoken communication in Communication tips: verbal, but let’s simplify that a bit.

You know your loved one, you probably know what she likes to talk about, what she doesn’t care about, what she prefers to avoid discussing.

Some helpful things we’ve found help conversations go smoothly:

• Reminiscing can be a great way to connect

• Don’t quiz.
  • This means, don’t ask “Do you remember when…?” questions.
  • What if she doesn’t remember? It can be quite embarrassing to realize you’ve forgotten moments that were once significant. You don’t want to unintentionally shame someone.
  • Even if they’re well-intended (they’re a natural part of many conversations), “Don’t you remember…?” questions can put people on the defensive, cause them to withdraw, or encourage lying to cover up the memory lapse.

• Alternatives to “Remember when…?” questions
  • “I was just thinking about that time…”
  • “You once told me that you moved to New York when you were seventeen…”
  • “Didn’t you used to love horses when you were little?” (bringing up a broad topic can be “safer” than trying to get to a specific story)

Talking to kids about dementia

 

Do you both have kids and care for someone with symptoms of dementia? Or maybe you’ve been diagnosed with dementia and want to talk to your family about it. How can you talk to children about things like Alzheimer’s Disease or other dementias?

My experience

When I was little, my grandfather began developing dementia (probably Alzheimer’s). Honestly, I was scared.  I was confused and felt completely helpless seeing this man I’d always looked up to getting…well, he was acting kind of strange.

It started out with little things: he’d trail off during a story or he’d forget where he put things. He didn’t recognize my brother when they ran into each other at church. Then he had to stop driving. Then he started forgetting common words like “fork” or “brush.” And it went on from there, for years…

Obviously something was up, but no one was really talking about it.

It scared me: as a kid and teenager I felt like my family only avoided discussing “really bad” things. We weren’t discussing this: it must be “bad.”

So I withdrew. I didn’t know it at the time, I didn’t mean to, but looking back I realize that’s what I did. Because I didn’t know what was going on, I found my grandfather’s behavior scary, unpredictable, and a little embarrassing.

I’m tearing up a bit as I write this; I still feel bad about it. I didn’t know any better, of course, but I hate to think I may have hurt his feelings. (Yes, even if he didn’t recognize who I was. Check out Emotions without memories for more on that…)

So I wanted to write about this topic, how to discuss dementia with kids, so that others may have a better understanding of what’s going on and what it means.

 

Signs of dementia? or just normal aging?

“Hey, where are my keys? I’ve looked EVERYWHERE!”

“Oh, no…is this Alzheimer’s??”

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Sound familiar?

Increased awareness of Alzheimer’s and other degenerative dementias means Baby Boomers (and the generations that follow) are acutely cognizant of the havoc it can wreak on a life. Some of us become hyperaware of the slightest changes we perceive, worried that any mental lapse is a sign of impending dementia.

Others, knowing that some change in cognition is normal with advancing age, mistakenly write off real symptoms as “just getting old.”

So, how can you tell the difference between normal aging and early signs of dementia?

Alzheimer’s vs. dementia: what’s the difference?

I avoided this post for awhile because existing online resources cover it pretty thoroughly: “What’s the difference between ‘Alzheimer’s disease’ and ‘dementia’?”

But I noticed that many folks, sometimes even highly knowledgeable people, use the terms “dementia” and “Alzheimer’s disease” interchangeably…incorrectly. So here are some quick definitions (just to be sure that you’re speaking the same language as your peers, care team, or staff).

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Dementia is a cluster of signs and symptoms involving the loss of cognitive ability.

Symptoms of dementia can result from a number of different diseases; Alzheimer’s disease is one of many diseases that can cause dementia.

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In addition to Alzheimer’s disease, other forms of dementia include:

• vascular dementia (often resulting from a stroke)
• frontotemporal dementia
• dementia with Lewy bodies
• Creutzfeldt-Jakob disease
• Parkinson’s disease
• Mild Cognitive Impairment*
• and more…

This gets mixed-up for a number of reasons:

• First of all, it seems that far more people know about Alzheimer’s disease than other forms of dementia. This is in-part because the bulk of diagnosed dementia is Alzheimer’s disease (50-70%, depending on your source). It makes sense that we’d mistakenly use “Alzheimer’s disease” and “dementia” to mean the same thing.
• Clusters of symptoms suggesting any particular form of dementia tend to overlap. A lot. And an accurate diagnosis isn’t ensured without cutting into the brain.
  Diagnoses based on “symptomatology” are, at best, statements that we should think of starting with “It’s highly probable that she has….” and not “She has…”
• Some people exhibit two (or more!) types of dementia at the same time. As far as we know, no type of dementia protects against any other types.

About us

Hi, welcome to MySimpleC.com.

My name’s Virginia Lynn Rudder (“Jennie Lynn” for short) and I work for a company, SimpleC, that’s using new technology to connect people living with dementia with their communities and to deliver personalized information, entertainment, and therapies set to an individual’s schedule. And largely succeeding, I might add.

But I’m not here to talk about that.

You can pop over to www.SimpleC.com if you’re interested in learning more, but we won’t be offended if you’re not. In fact, I’ll rarely even mention SimpleC. And if I ever do bring up a SimpleC product or service in the future I pledge to disclose our connection in the article, just as I’d disclose any other connection with a product or service I mention.

Because it’s not the goal of MySimpleC.com to sell you anything.

Seriously.

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Over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

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The point of MySimpleC.com is to establish an online community that will connect professional caregivers with family caregivers, uniting people living with symptoms of dementia with high-level researchers with people just now learning that not all dementia is Alzheimer’s…and everyone in-between.

Why?

Because over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

See, there are TONS of dementia resources out there but it’s hard to know which ones are worth reading. In fact, I just googled it: “dementia” brought up 10,200,000 results. “Alzheimer’s” netted 57,100,000. Sometimes there’s too much information and not enough guidance; this definitely seems like one of those times.

Just to be clear: I’m certainly not claiming to know all there is to know about progressive dementia. Sure, I’ve picked up a few helpful tips and earned some knowledge from The School of Hard Knocks…but I am acutely aware that it’s just scratching the surface.

We’ve seen a lot of dementia and how the same symptoms are approached in so many different ways, with such varying success. We hope to centralize that knowledge.

But in the process of compiling some of what we’ve learned (and wow do we have a lot to share in the upcoming weeks and months!) I realized that there’s a second component also missing in the digital dementia world: an open forum.

There needs to be a place that’s supportive yet honest, that’s neither woe-is-me nor persistently chipper, where you can ask hard questions and, even if they’re unanswerable, at least learn how others in your situation approached them. We need a place where it’s ok to be upset but not alright to be disrespectful. We need a place where caregivers whose loved ones have recently passed can connect with one-another and, if they’d like, share with those facing the battle they just fought.

I want this to be that place. We’re building this from the ground-up, together, and a lot of the initial discussions will take place in comments and through posts that you suggest.

Don’t worry, it’s not another person or entity demanding more of your time. Just…stop by when you can, and if you have a second, let me know what you think is good and what seems off or wrong.

Whether you’ve been diagnosed with a progressive dementia yourself (Alzheimer’s, Lewy Bodies, Parkinson’s, Mild Cognitive Impairment, vascular, …) or you’re the family or friend of someone who has been…it can be so overwhelming. I know it can. Not all bad, not by any stretch, but just such an unpredictable, continual challenge. And so isolating. Hopefully we’ll create a community that you can call your own.

So, we’re glad to have you; I hope you stay a while!

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MySimpleC.com does not provide medical advice, diagnosis, or treatment.