Being in the Moment
Do you know someone with Alzheimer’s?
My Dad, Manfred passed away from Alzheimer’s in October of 2000. My Mom, Virginia has been living with Alzheimer's for the last 12 years.
In 2014, over 5.2 million people were diagnosed with Alzheimer’s. Over 70% of people who have Alzheimer’s and other forms of dementia live in the community and NOT in nursing homes, assisted living, or group homes. That means approximately 3,640,000 people with Alzheimer’s are living in their own homes or with family members.
Those 3.6 million people living with dementia have family and friends that want to help them live well. But these family members and friends, who we often call caregivers, need help themselves.
Family members and friends of persons who are diagnosed with Alzheimer’s disease do not receive a free workshop, a how-to manual, a crash course, or even a brochure in what to do now.
We want to create a website that will be the home for information that we know caregivers want and need. Information that will help them help people living with dementia. Help them understand Alzheimer’s disease and the perspective of the person with Alzheimer’s disease so that they can meet them where they are, in the moment.
For the last 20 years I have been facilitating workshops, trainings and consulting on Alzheimer’s – teaching others how to “get it” and understand it in way that speaks to the regular everyday person – like me.
One project I have worked on was produced by Centers for Medicaid & Medicare Services (CMS) called The Hand in Hand Training Program. It was sent to every nursing home in the country – over 18,000. I was the co-writer of the training content and the scripts for video clips performed by actors.
Since that time my partner in the project, Sonya Barsness and I have wanted to create a similar resource for families of persons with Alzheimer’s. We realized that a website would be the best way to get the information out there. We will include video clips that show real life scenarios and can truly help caregivers have a better understanding of the world of the person with Alzheimer’s.
We know we can make a difference in the lives of caregivers and people living with Alzheimer’s. Help us.
Caring for a family member with Alzheimer’s is challenging– emotionally, physically, and financially. We understand that and want to give you the training and tools they need.
What will make this website and training unique?
· Free. You will not need to pay for videos or information.
· It will be ever changing. We will be updating regularly.
· It will be person centered.
· You will hear from persons with Alzheimer’s to understand how they feel.
· It will have real life practical tips from fellow caregivers.
· Video clips will show you real life situations. Including but not limited to: communication, actions and reactions (behaviors), eating and personal care. These will not be of 1 person talking to the camera or a video of how it is in a nursing home but what it is like for us, families and those with dementia, in our homes.
· It will have various resources on living with Alzheimer’s, planning, and navigating the healthcare journey
· National experts will be creating the content and we will have an Advisory Team that will include a doctor, nurses, an attorney, persons with Alzheimer’s and caregivers.
· And we will listen to YOU. What do YOU have questions about? What do you need to know?
The goals are simple.
1. Make life better for those living at home with Alzheimer’s.
2. Make life better for those who are helping those living with Alzheimer’s.
We are all for research, but right now we need to support those who are struggling each day and just need some practical information and tools.
The more funding we receive the more we can do and the longer we can keep it going
$10? $20 $53? 128? $1000 – What can you give?
I love cake. So if this project was a cake, I would like it to be chocolate cake with 7 layers and yummy buttercream frosting and blueberries all over the top. The more layers we add the better it will be. Mmm…cake.
P.S. The picture is of my Mom, Virginia who will be 90 on March 13!
Sonya Barsness website:
Thank you! Karen Stobbe
Thank you to actors Mondy Carter and Tina Rosato.