What I Think Dementia Care Partners Need to Know

I am working on a presentation for an upcoming dementia conference. The goal of my presentation is to educate family care partners and give them some coping strategies.

I’m either efficient or just lazy because I decided there was no reason to build this presentation from scratch. I have a file on my laptop titled “Dementia Presentation Materials and Stuff.” I opened that file to find about 15 Powerpoint presentations I’ve done for family care partners in the past five or so years.

I decided to take a look at those presentations. On some of them, I used unfortunate fonts, weird color schemes, and lame graphics. (I’m sorry graphic design friends….I used a lot of Comic Sans.)

But I found some common themes from presentation to presentation. In fact, I’m kind of a broken record.

I challenged myself to come up with the ten themes I hit on most frequently when I talk to care partners. I figured this would be a good representation of what I think is important for care partners to know…because it’s stuff I repeatedly talk about. Now I’m thinking about making this into some sort of handout or poster.

And here are those themes:

1–You can’t fix dementia.

I don’t care how much you love someone or how many books you read. It doesn’t matter if you feed them the perfect diet and travel to specialists across the country. At this point in time, we cannot repair the brain after dementia takes hold. So don’t beat yourself up when dementia progresses. You’re not doing anything wrong.

2–Connect; don’t correct.

When we correct someone, we decrease our chances of connecting with them. I know this is tough with family members. In many families (including mine), being right is important. Remind yourself that it’s better to make a connection than to be right.

3–Having dementia is tiring.

We don’t talk enough about the mental fatigue that people with dementia experience. The dementia brain has to work really hard to process information (and information includes…everything…sights, sound, tastes), so it frequently gets exhausted and needs a break.

4–Their reality is just as real to them as your reality is to you.

That guy your mom thinks is standing in the corner? He’s just as real to your mom as your mom is to you. And she might think you’re crazy if you don’t see him.

5–Sometimes a nursing home is the best option out of a bunch of not-great options.

Let go of the guilt. Placing someone in a nursing home isn’t a punishment. I’ve never heard anyone say, “I hate Dad and am looking forward to dropping him off at a nursing home.” If we all had unlimited funds to hire staff and redesign our houses, we could keep people with dementia at home—-but we live in the real word. Sometimes we have to choose a nursing home not because we love the idea but because it’s the best option we’ve got.

6–Dementia isn’t just about memory loss.

The change in personality? The moodiness? The paranoia? That’s not just Grandma being difficult. That’s dementia. Dementia is a constellation of symptoms–one of which is memory loss.

7–Dementia will change your relationships.

Accept that your relationship with the person living with dementia will change. Be flexible. Understand that what worked in your relationship before might not work now. And know that sometimes, in some relationships, some of these changes might be positive.

8–Dementia changes how someone experiences the world.

All the information we have about this world comes from our five senses. Dementia changes how we take in information through sight, touch, smell, taste, and hearing.

9–If you’ve met one person with dementia, you’ve met one person with dementia.

Dementia impacts everyone differently. Some people sleep more. Some people sleep less. Some people can’t stop eating. Some people refuse to eat. You can’t make a prediction about one person with dementia based on the experiences of others with dementia. Your loved one was unique before, and they are still unique.

10–This is a marathon, not a sprint.

If you see sudden changes, they are likely not due to dementia. For better or for worse, dementia tends to be a slow moving beast. That makes is especially important for care partners to take care of themselves.

Stay tuned next week when I talk about the meaning of life. Okay, maybe I don’t really know what the meaning of life is. But I am working on a blog post on dementia and meaningful life.

Oh, and have an awesome Monday!

 

13 thoughts on “What I Think Dementia Care Partners Need to Know

  1. I really like your list, but am wondering about #3. Unless I missed it, the list I read goes from 2 straight to 4. Thanks for all you do!

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  2. Hi elaine,finally,your getting there,someone with common sense(Funny term,if if this sense is so common howcome alot of academics and authority figures dont have it)alot of the points you make have a resonance with me,well thought out and in the real world,seems to me you have an empathy with people with early onset dementia and alzheimers,often the voices that have become silent are the most profound……its a different language to some,I understand it because i come from a different angle,I have the condition so have a point of reference.2 Years ago my body and mind decided to catastrophically blow up,which shall we say proved inconvenientAs little as 6 months ago i couldnt ,read,write walk talk,drink or eat myselfIhad some terrific care 4 times a day whilst my beloved partner went to work to support us.This is the fundamental point,my partner had to fight for every bit of help we got,im talking hundreds of hours of telephone calls,letters and e mails,The help financially is out there,its just caught up into so much red tape and beurocracy its a state secret,which is absolutely wrong.Iwas lucky i have a partner who refused to lie down and give up….the assesment stages are the worst,stupid questions like”how far do you think you could walk?(easy answer my brain has temporarily lost control of its motor skills and my legs wont cooperate) The list goes on,Igot up and walked 6 weeks ago have no need for carers anymore,i can handle complex problems now like preparing dinner parties,devising menus,forward planning,im in talks with the local care home to improve the quality of life for fellow people with early onset to get out into the community and get the sun on there backs,Ido this at my own cost and take no payment,Icant explain what has happened to my cognative functions,but im having another extensive battery of mental and physical tests to try and figure it out.Iwould love to take part in any studys you have,if my case can help just one person to improve,sorry for the long winded comment,youve never lived till youve been in a room full of lladies of a certain age go into fits of giggles while they discuss there sex lives,yes ive said it people with early onset have sex,as with everything if its consentual we do have it!!!!!!!Elaine perhaps when you talk in the next journal on the meaning of life,you can discuss this,it seems to be a taboo,its good for you,produces endorphins which is the bodys natural pain kiler and natural high,it also keeps you fit,good luck in your work,ive got a funny feeling your on the verge of a breakthrough,i cant remember what i did ten minutes ago,but i can see into the future!!!!!!!!!!rsvp chris

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  3. Hi Elaine- Great post as usual. Would be wonderful if you would add search functionality to the site so when I refer family members, they can easily find older posts.

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  4. I agree with all but your first assertion – “You can’t fix dementia.” Dale Breseden has been having success with Alzheimer’s. He has a book, An End to Alzheimer’s that came out a couple of years ago. He’s developed a protocol for the different types he’s researched.

    Thanks for all you do,

    Renee Robb-Cohen

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    1. Great comment! Yes—I have read his book (twice)! I agree that his work is interesting and quite promising. However, I don’t feel as an academic I can (at this point) call it a cure when I speak to the general public because of some of the limitations of implying causality and his methodology, but some of the success he’s seen is encouraging.

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  5. I keep sending the posts that most resonate with me, including this one, to my dementia caregiver’s support group. Would love to know more about how “Dementia changes how we take in information through sight, touch, smell, taste, and hearing”. Got any powerpoints you can share? I don’t even care if they are in comic sans 🙂

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  6. Another timely message, Elaine. In particular, items 1, 2, 9, and 10 resonated with me even now that we’re within days of my husband’s one-year anniversary in memory care.

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