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.