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What do those who are living in the world of dementia need?

Families need free, well-informed, interesting training that can enable them to create a better quality of life for all involved.

Photo of Karen Stobbe
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As a daughter of parents who both lived and are living with Alzheimer's, I have made my world about finding ways for people to give and get better care. What I know I have learned from many amazing people, but also from a lot of trial and error-as all families know too well. (any family member reading this, we ALL make mistakes, throw that guilt in the garbage) 

I KNOW what we need to do. We families do not need more gadgets, more books or bubble baths. Ack! We need training. I have spent my life since the minute of my Dad's diagnosis getting training. Then I started giving trainings and have not stopped. What I have learned from so many conversations with families across the country is that we learn best when we do it or see it done

That is why I started using experiential learning in my workshops - specifically improvisation. Yet, we can't get the world to attend a workshop. Even we filmed workshops and stuck them on the internet. That is just watching someone talking about it. 

Caregivers need to see everyday life moments and see how they can approach situations from a better direction. We need to experience how a person living with dementia sees things. What we sometimes label "bad behavior" sometimes is merely the person living with dementia reacting to how they are being treated. Sometimes through "bad behavior" they are telling us (the only way they can) about an unmet need. We need to stop looking at it as bad but communicative and helpful. 

Caregivers need to experience how to move correctly to not hurt ourselves. We need to know how to make our homes safe places for everyone.  We need to know how to cope with a another family member who lives 500 miles away and tells us how to be a caregiver - even though they visit for only two days.  ; ) Oh, and it's about laughter and joy. I have found you must have these to continue and be healthy in the world of dementia.

What if this info was put into well written and well acted videos? 

What if there was information that could be printed out and sent in a card to someone you know that may be struggling? 

What if there was a place where experts could answer any question you may have about dementia? 

What about those living in remote parts of the country? What if there was a way to reach the unreachable? 

This is what we need. 

Oh and chocolate. You always need chocolate. 




What is a provocation or insight that might inspire others during this challenge?

Families are sent home with a diagnosis with no information except maybe - maybe a few pamphlets. There are help lines for specific needs. There are online support groups that have amazing information but also well-meaning misinformation. There are books with sad titles about long goodbyes and mothers that "used to be" . Let's give families real helpful information that has hope and laughter

Tell us about your work experience:

I have worked in theater, health care, consulting and facilitation of learning.

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Photo of Karen Stobbe

Hello Susan - To your question: Of the needs mentioned, do you think there are one or two "most-critical" to focus on first? I think an understanding of Why? Why does the person do this or that? Why does he/she respond in this way? and of course many more. If you can understand why then you can begin to make real change in the way you care and interact. And no band-aids, in the sense that you may be able to use redirection because someone wants to leave the house but WHY? are they wanting to leave? When you can figure that out then you have answers. I want to put those tools in the families hands. I believe that family members sometimes may not see some of the simplest ideas or approaches but it is completely understandable when you are exhausted.

Photo of Susan

Yep.

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