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Being in the Moment

A free online home that provides education, support, and inspiration to thrive in dementia and in life.

Photo of Karen Stobbe
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Who is your idea designed for and how does it better support family caregivers as they care for a loved one with dementia?

Being in the Moment is designed for family and friends of persons living with dementia.

Based on person-centered principles and using lessons learned from real life. We will present life clips - short videos about everyday moments, as well as printables, a question and answer section and more.

We do not want to be the EVERYTHING website. We want to do what we know and are good at: providing education, inspiration and even laughter to fellow family caregivers. This is the first step...

Families need to understand how to be with their loved ones.

We MUST give families the knowledge and tools they need to understand how to communicate, understand behaviors, grasp the emotional side of caring, self-care, body mechanics and other techniques so that all involved may have a BETTER QUALITY OF LIFE. 

We completely agree that families need

  • to be socially connected
  • ways to sing, dance and be creative with their loved ones. 
  • local resources 
  • help with clinical care such as appointments, treatments and medications. 
  • tools to assist the early diagnosed person with being independent. 
  • and so much more. 


YET, if families have these things but don't understand how to really BE with their loved one, their frustration, depression, exhaustion will wear them down. 

We need to do THIS first. 

Let's build a strong FOUNDATION for CARE

Being in the Moment will give a strong foundation and then we will help get the walls up 

and the floors and strong beams and posts. 

This is what we are good at and know how to make the information that families need understandable, relatable and relevant. 

Then we will be happy to steer families to vetted resources to help them with the rest of the caregiving home; all the other pieces that are important to be a healthy caregiver. 

In the Moment (a 501c3 non profit) was founded by Karen Stobbe, a caregiver for both of her parents; Manfred and Virginia. 

Manfred passed away from Alzheimer’s in October of 2000.  Virginia was diagnosed a year and a half later. This changed the course of Karen’s life from a theater trajectory to an Alzheimer’s path.

For more than twenty years, Karen has been fortunate to work and learn from many of the top dementia experts in the country. They all agree that the most pressing need in Elder care for families as well as professionals is relatable, real life, training in person-centered dementia care. 

Families need to understand how to be with their loved ones. And a way they can share the information with everyone in their family and those who are on the care team. It needs to be free and accessible. 

There are ways to communicate with those with dementia. Ways to see actions and reactions (behaviors) as a form of communication. What at first looks like disconnection in context is seen as an expression of needs. This point of view can be taught and it makes life better.

Being in the Moment is a project of the non profit In the Moment. It will be an online FREE portal that will be the home for solutions to issues caregivers see everyday. Being in the Moment will help caregivers adapt to make life easier for everyone involved. These videos will be layered in their information. Although one video may be about understanding why Mom does not want to take a bath or shower, it will also show correct body mechanics, a correct way to cue a person, how to read non-verbal communication and how to speak with a person living with dementia.  Think of an onion with all the layers or even better like my Mom dressed me for winter, sooooo many layers! 

We know that being able to actually SEE something instead of just reading or hearing about it allows for the information to be easier to understand and share with all members of the family.

Being in the Moment will also be a home for:

  • PDF’s you’ll want to share
  • Videos how to move and lift correctly. It’s constantly overlooked.
  • A focus on the and emotional state of caregiving how others have navigated these changes
  • Meditation and Inspiration
  • The Grandchild’s point of view
  • Fellow caregivers, care partners and persons living with dementia. Sharing what they know.
  • A question forum that will supply answers from an experienced family caregiver and national speakers on the topic of dementia, with an advisory group providing answers and perspective too.


Here is The How of the manner in which we will present the information on the site: 

and here is The What of the type of information we will be starting with on the website



                       *******************************************************

(NEW INFO)    Speaking of questions & answers, here are 4 we have received offline or in the Open Ideo world that may be of interest to you. 

1. Why is this Idea important? 

This is foundational. Think of this information like the foundation of a home. We can build a house with rooms of wonderful communication activities, engaging things to do and apps to see or speak or find one another. YET if we don't SUPPORT those rooms with a strong foundation of education through person centered information then the rooms will not be as useful.  We MUST help families understand how to communicate or why a person may be behaving in a certain way and what we can do to change, what are body mechanics and so much more.  Let's build a strong foundation. 

2. What makes this unique from other programs? trainings?  

It will be FREE

It will be person-centered in the utmost way. We are sticklers for looking at the person not the task or the disease. We believe we are just like persons living with dementia they are just seeing and experiencing the world in a different way. 

The videos will be done by actors in a home setting and will not just show how to approach situation in a different way but the why behind "behavior" or actions and reactions. 

The Director of the project is a Family Caregiver. 

We do not want to be EVERYTHING for Families. We want to be a place for learning and inspiration

We will have the opportunity to grow. Add in videos in different languages or answering cultural questions. Add in a way to feature Adult Day or Respite or Home Health Programs that have been vetted by In the Moment. To add in community resources in each state. BUT First education. 

3. What makes you qualified to decide and write the content of the videos?  

The Chief Purpose Officer has been a family caregiver for over 20 years to both of her parents. Her Mom Virginia lived with her and her family for over 10 years. 

She was also one 1 of 2 Subject Matter Experts, content developer and writer and scriptwriter for the only dementia training produced by CMS and sent free to every nursing home in the country. The Hand in Hand Toolkit. 

We also have a strong Board of Directors with dementia background and an amazing Advisory Panel from all facets of healthcare. 

4. What are the topics you will start with and how will you decide what's next?

I have been traveling the country speaking to those who work where our Elders live and those who are family members and friends. Sometimes when I present to only families I ask them if they have any questions - I know when I started caregiving I had lots of questions and it was hard to find straight honest answers. I have been keeping track of the questions from families in Susanville, CA to Birmingham, AL to Asheville, NC.
Here are some of the top questions from families. 

1. What's the difference between dementia and Alzheimer's?
2. Why do I need to get a diagnosis of what type of dementia?
3. What makes my loved one seem to spike in their symptoms?
4. Why do they seem so sad/angry/frustrated/etc?
5. Why won't he/she do anything - he/she just sits there?
6. Why do they keep repeating over and over?
7. I can't get him/her to shower/bathe. What do I do?
8. When do they get to the agitated stage?
9. What are the stages?
10. She/He won't listen to anything I say. What do I do?
11. My loved one is now non-verbal how do I communicate?
12. I don't know what to do with my Mom when I go visit her.
13. How do I get her to take her meds?
14. Why is she so frustrated all the time?
15. I need help what do I do?
16. Why is she/he doing XYZ?
One thing that is for sure is that we have a tendency to put band-aids on situations instead of finding out they why behind it. . There are answers. Families must be able to communicate and understand behaviors before they can do anything else. And that is what I am going to strive to do. Help families and friends of persons living with dementia to have more tools and understanding to hopefully keep their loved one at home longer and for everyone involved to have a better quality of life.

                     *******************************************************

Being in the Moment wants to give families and friends the information that they would receive if they were able to attend dementia training courses, but in their home. Caregivers need information that is easy to navigate, easy to obtain, and easy to understand. 

In the Moment has a background in theater and improvisation and use those skills in our work and life with persons living with dementia. The guidelines are parallel such as; Say Yes And, Step into Their World, Go with the flow, Listen Fully, etc…

We also will be making sure to use person-centered language and uphold the dignity of the person living with dementia. Nothing will show the person living with dementia as childish or in a poor light. We will present an unspoken respect and honor at all times.

We are focusing online because we know more people will be able to access and share the information in this way. We want to reach those unreachable families who are in very rural areas, who are isolated because of the caregiving rigors or who are forgotten because of lack of family and assistance. In order for the broadest possible reach the mobile version of the site will on par with the desktop version.

The BeingintheMoment.org portal will use an Agile Methodology approach.

In the software world: Agile is an iterative approach to software delivery that builds software incrementally from the start of the project, instead of trying to deliver it all at once near the end.

We will build the portal due to caregiver demand and listen to them as they give us feedback and requests from more information.  We don’t see an end to the information. It will be a living site, always shifting and adding new information.

In using the agile method we will continually get feedback from caregivers, make sure we are meeting people’s needs, create even more innovative material, and keep getting better.


What early, lightweight experiment might you try out in your own community to find out if the idea will meet your expectations?

We have been showing the life clips to groups of of family caregivers to see the response. We have heard, " I wish i had this information earlier." or " Can you make a video about why people wander?" There has been a strong response to the fact that this is needed.

What skills, input, or guidance from the OpenIDEO community would be most helpful in building out or refining your idea?

1. Site/Portal Design
What would make it most user-friendly? Easy to navigate?

2. Connecting Caregivers
How to connect those who visit the site?

3. Marketing
We have many innovative ideas of how to market this idea to reach families and friends, yet we would whole-heartedly welcome other ideas

How long has your idea existed?

  • Over 1 year

This idea emerged from

  • A group brainstorm
  • An Individual

Tell us about your work experience:

I have been a family caregiver for both of my parents with Alzheimer's. My background in theater/ improv has helped me use these skills to be with persons with dementia. This is what I have been working toward. Alzheimer's/Dementia is my work and personal world. It is my life.

How would you describe this idea while in an elevator with someone?

Floor? 28. What's this?
This is a 1/3 page flyer to leave at pharmacies and memory clinics for families of persons living with dementia to get training through person-centered life clip videos that will help them get through their day and make their life and their loved ones better.
I KNOW it will help. There is no training that exists like this.
Thanks. Here is some for you. Your welcome.

How does your idea demonstrate our Criteria of Accessibility?

Free. This will be FREE. We are seeking funds like this. Grants. Corporate donations. Bake sales...
ALSO, We will have a screen that when you enter the website we ask Are you a Family member of Friend of a PLWD? or are you a Professional Working in a Care Community. If they are a Family it will take them to a screen to explain how to get the most out of the site. If they are Professional then to a screen to ask for a donation in order to use these videos.

How does your idea demonstrate or plan to demonstrate scalability?

This IDEA was made for a large number of people. There is no need to start small. Once we get the website in the form we want it we can start to grow the content and market the site immediately.
It was also conceived to work with the persons this site is for and whom your challenge is about: family caregivers. We will reach out and listen to their feedback and what they want and need.
We have never seen a site to do this in the way we are proposing.

How do you plan to measure the impact of your idea?

Process measures:
# of hits on the site
# of views of the videos
# of downloads of pdfs
# of questions to the forum

Outcome measures:
Results of voluntary satisfaction survey of those accessing the resources or forum
Qualitative reports of users on their experiences as a person living with dementia and/or caring for loved ones after watching videos
Pre-/post-test to to evaluate changes in knowledge and understanding after watching the videos.
Advisor Amy Elliot PhD

What are your immediate next steps after the Challenge?

1. Scream Yay!
2. Meet with our web designer so he may begin to build our new site.
3. Make the announcement on all social media. You know money gets money.
4. Proceed with our plan of having 50 videos up and the website finished by the end of 2018
5. Apply for more funding
6. Change the world of family caregiving

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Photo of JASON BLARK
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Photo of JASON BLARK
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Photo of Cyril Noah
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Photo of Dr lucky ojo solutiontemple
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Photo of Dr lucky ojo solutiontemple
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Photo of Bettina Fliegel
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Karen,
This is a great idea! I like how the videos offer different options of approaching each scenario. Will there be a way to share this content offline, for families that might be in rural communities with very limited internet access?

Photo of Karen Stobbe
Team

Morning Bettina
i am not sure to the ability to download them and use them offline yet. Pondering and looking into that. YET - there ias only 2% of the country who cannot get any kind of internet, but there is 13% who choose to not use it even if they have internet. So Yes - I will not be able to reach everyone but I believe this is the best way to reach the those hard to reach caregivers. I have found that in very small towns where folks do not have internet or a good signal, the towns are finding ways to provide hi-speed internet in hopes of increasing business. I have seen grocery stores and bars in very small towns provides it. Also libraries and schools providing parking spots to pick up their wi-fi in your car or come in and use their computers. Caregiving is a family effort these days - we may have adult children, grandchildren, spouses, neighbors and friends all looking out for one another and someone in that may be in that 2% may have someone with a smart phone who can share the videos. We will also make printable PDFs.
Thanks!

Photo of Bettina Fliegel
Team

Congrats on being a Top Idea Karen! Good luck developing this great initiative!

Photo of Joanna Spoth
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Hi Karen Stobbe Great to see your updates! We've gathered some questions about your idea and are eager to hear your thoughts. Beyond the videos and website on which they live, are there additional elements you're working on? Specifically, we're curious if viewers of the videos receive recommendations for actions to take. Are they encouraged to seek out local resources? As you think about scaling your idea, leveraging local and reputable resources could be powerful. Have you thought about the role partnerships will play in your idea?
We'd like to learn more about how the videos are packaged. Have you seen the Caregiver 101 site from UCLA? Could be good inspiration, or perhaps you're in touch with them already?
Lastly, we'd like to learn more about your funding model. Where does your current funding come from? Organizations like XPrize and Gates Foundation are often looking for people who are willing to be a part of clinical trials, and that can be a source of income.
A few thoughts and questions! Thanks for your continued time.

Photo of Karen Stobbe
Team

1. Beyond the videos and website on which they live, are there additional elements you're working on?
Yes. We will have pdf’s of information that they can download and print and share.
We will also have as section on Self Care where we want to have printable inspirations/hang in there/I didn’t order the guilt soup type items to keep the caregiver going. We are calling them Moment Bees

2. Specifically, we're curious if viewers of the videos receive recommendations for actions to take.
Yes. At the end of the video the actors portraying the caregivers normally give advice straight to the camera such as this one
or you will hear tips throughout the video. We will also be doing a written synopsis of the information

3. Are they encouraged to seek out local resources? As you think about scaling your idea, leveraging local and reputable resources could be powerful.
Yes and we do NOT want to be the GIANT EVERYTHING WEBSITE. We want to be an original resource with education and inspirational
information for families and friends of persons living with dementia
We would like to have a map with all the counties listed and resources for each county yet we also do not want to list resources without vetting them and making sure they do what they say they do.

4. Have you thought about the role partnerships will play in your idea?
Yes and we need to think more.
You need to be careful. So we want to be very mindful as we develop any relationship.
We have thought about the following organizations/companies to work with:
• NADSA, National Association of Adult Day Services
• Respite Services
• Church organizations
• Pharmacies
• Companies who manufacture products that families need/use
• Other specific companies to market with, that I will mention in private but not publicly.

5. We'd like to learn more about how the videos are packaged. Have you seen the Caregiver 101 site from UCLA?
Yes. I have shown professional videos like these in other words lot of funding used for them and shown families mine and they have said they like that they look more real. Not a big thing, but I have looked at even that piece of it.
I do like the common response and recommended response. It is similar to what I did in Hand in Hand Training Toolkit and what I am doing with these videos. I don’t want to break the 4th wall of the video with an expert but with the family caregiver actor talking directly to the video.
I like the tips at the end. We have those on several of ours.
The one thing I have to say is that they need to say WHY? Why is Mom wandering or refusing to take a bath? If you know the why behind any action you can understand it better and see what the person is communicating to you. It is very important step that many look over. For example: If your Dad keeps going for the door and you thinbk he is trying to leave or “wander”, maybe track what time of day? Or what he is doing right before? Maybe he wants to get the mail. Maybe he used to take walks at that time, maybe you mentioned a Dr apt you are both going to in the afternoon and he doesn’t know the time and is anxious to go.
Treat the person as normally as possible. Look at the whole person.

Could be good inspiration, or perhaps you're in touch with them already?
No I am not in touch.

6. Lastly, we'd like to learn more about your funding model. Where does your current funding come from?
We became a non profit in September and have been getting all of our ducks in a row when this Challenge was brought to our attention.
We will be applying for grants in the Spring and have contracts for earned income in 2018 that will be able to help fund this project. It is our main project for In the Moment until we get our first goal met: 50 Videos. 50 Printables. 50 Blog/Vlog Posts!!
Our Board has a meeting in February to develop our strategic plan for the next 5 years.
Thank you for the questions!

Photo of Joanna Spoth
Team

Karen Stobbe just wanted to say THANK YOU for these thoughtful responses and for posting the focus group feedback. I wanted to mention that we had the chance to go over your idea with our advisory panel and they were big fans - we all love the model of your videos and that you're bringing principles of improv into the caregiver space. There's something very real and helpful about seeing how these interactions actually look, or could look. Thank you for the work you're doing! They also brought up a few thoughts I wanted to pass along:
Have you thought about how to organize all your videos for the caregivers? The thinking is that sometimes caregivers are experiencing a very specific problem, and perhaps the organization of the website could facilitate their getting help. We'd also love to hear your thoughts on how to get this into people's hands! How might you work towards this being a go-to resource when caregivers are searching for help? A thought around your work being a huge asset for empathy training in senior care facilities also came up. And curious if you've heard of Savvy Caregiver Program? It's an evidence based program and comes with daily videos vignettes re Caregiver - care recipient interactions of daily life. Could be neat inspiration as you continue to build this out.
Thank you for all your fantastic work!

Photo of Karen Stobbe
Team

Joanna, I spent a long response off OpenIdeo in an email. Thanksfor the comments! Karen

Photo of Joanna Spoth
Team

Karen Stobbe Thank you - we've received it and so appreciate your thoughtful responses and the time you've put into this Challenge. We hope you've found participating helpful!

Photo of Laura Rice-Oeschger
Team

Hello, Karen - I really enjoyed reading through the Being in the Moment refinement updates! Your ideas, style and videos are so wonderful and engaging. I am looking forward to following your website development this year and sharing your videos and information with the caregivers and care partners we work with and also train in Mindfulness-based Dementia Care.

Photo of Karen Stobbe
Team

Laura

Thank you so much. We should really team up and push each other's programs. I am doing this no matter what....it will just take longer. : ) take care - Karen

Photo of Laura Rice-Oeschger
Team

Yes! and... Let's team up ; )! I had the pleasure seeing Mondy present in Ann Arbor, Michigan last year, where I live. I've been a fan of your work for several years and was so happy to see your project and vision on IDEO. My comments are long overdue and I wanted to reach out to let you know that we are excited about your website and would love to connect, support and push each other's programs. We are also a non-profit and committed to offering education, training and support free of charge. I think you just nailed the motivating mantra for the year- No. Matter. What.

Photo of Karen Stobbe
Team

Hello!
I have my Advisory Panel almost completed. I thought I would share with everyone. I am honored to have all of these amazing people to be on the advisory panel. Karen

Dr. Allen Power, MD, FACP is the Schlegel Chair in Aging and Dementia Innovation at the University of Waterloo’s Research Institute for Aging. He has written 2 books, Dementia Beyond Drugs: Changing the Culture of Care and Dementia Beyond Disease: Enhancing Well-Being. Dr. Power travels extensively speaking to groups across the world.

Amy E. Elliot, Ph.D., is a health and long-term care policy and evaluation consultant with a strong background in health economics, gerontology, long-term care, public policy and financial analysis. Prior to her work as a consultant, Amy served as the Director of Research and Evaluation for Pioneer Network, in this role, Dr. Elliot was responsible for the demonstration of a sound business case to illustrate positive cost and quality outcomes resulting from person-centered care at the organization, state and federal policy levels. She has authored research publications, case studies, educational modules, and book chapters.

Beth Meyer-Arnold, RN, MS, is currently the Principal/Owner at Cygnet Innovations Group. She was the Director of Luther Manor Adult Day Services (25 years) , and President of National Adult Day Services Board (8 years). She has co-authored two books, Person-Centered Care in Practice: Tools for Transformation and Person-Centered Care for Families.

Sonya Barsness, MSG, Owner at Sonya Barsness Consulting provides consulting in gerontology, particularly related to person-centered care, long-term care, and dementia care. Sonya is Adjunct Faculty/Instructor at Virginia Commonwealth University Department of Gerontology

Brian Kursonis, Brian was diagnosed with Early-Onset Alzheimer’s Disease in 2016. Brian’s dream and life purpose is to bring help to caregivers through the faith community. As a former Pastor, counselor, and caregiver himself, Brian’s perspective is important and unique. Brian was recently a national volunteer spokesperson for both PhRMA and the Alzheimer’s Association because of his recognized communication abilities that will inspire you and bring hope.

Pastor Gary Gibson, Chaplain at Presbyterian SeniorCare and Senior Pastor at North Buffalo Presbyterian Church. Pastor Gary also serves on the Pennsylvania Culture Change Coalition Board and on the Western Team as well. Also serves on the membership committee of SWPAA. National speaker on Culture Change for the Pioneer Network for the past three years.

Valerie Boyd, Director of Senior Adult Ministries at Canterbury United Methodist Church in Birmingham, Al. Valerie is passionate about engaging older adults to live their fullest life with spirit, love laughter and fellowship. She is committed and dedicated to families who are living with dementia and cognitive impairments by providing resources through community respite programs, and active weekly support groups. Valerie’s motto in life is “we are all in this together”.

Grace Carter, Student and Caregiver for her Grandma, Virginia who has been living with Alzheimer’s for the past 15 years. Grace has written about dementia and spoken at a national conference. Grace is our Youth Advisor.

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It is an incredible post.

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Thanks John!

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This is a great low tech idea that any beginning caregiver can use. I think video is so much more informative than print when it comes to learning care functions.

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Hi Karen Stobbe - great to see you in the Refinement Phase. You mentioned you've been gathering feedback from family caregivers. Do you have that captured? We'd love to see it. Are you planning on gathering additional feedback in the next few weeks? Don't forget - a few questions have been added now that you're in the Refinement Phase. You can see them by clicking "Edit Contribution."

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Hi Karen Stobbe just wanted to flag my previous comment! :)

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Joanna - It is in an attachment. Focus Group! Thank you! Karen

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This is a great idea! While following the agile methodology, what parts of the online platform are most important to build out first? I believe that this could be a great solution for those living with someone with dementia and your background in theater is highly unique and valuable for this project.

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Hello Vikram,
Great question. I have been traveling the country speaking to those who work where our Elders live and those who are family members and friends. Sometimes when I present to only families I ask them if they have any questions - I know when I started caregiving I had lots of questions and it was hard to find straight honest answers. I have been keeping track of the questions from families in Susanville, CA to Birmingham, AL to Asheville, NC.
Here are some of the top questions from families.
1. What's the difference between dementia and Alzheimer's?
2. Why do I need to get a diagnosis of what type of dementia?
3. What makes my loved one seem to spike in their symptoms?
4. Why do they seem so sad/angry/frustrated/etc?
5. Why won't he/she do anything - he/she just sits there?
6. Why do they keep repeating over and over?
7. I can't get him/her to shower/bathe. What do I do?
8. When do they get to the agitated stage?
9. What are the stages?
10. She/He won't listen to anything I say. What do I do?
11. My loved one is now non-verbal how do I communicate?
12. I don't know what to do with my Mom when I go visit her.
13. How do I get her to take her meds?
14. Why is she so frustrated all the time?
15. I need help what do I do?
16. Why is she/he doing XYZ?
One thing that is for sure is that we have a tendency to put band-aids on situations instead of finding out they why behind it. . There are answers. Families must be able to communicate and understand behaviors before they can do anything else. And that is what I am going to strive to do. Help families and friends of persons living with dementia to have more tools and understanding to hopefully keep their loved one at home longer and for everyone involved to have a better quality of life.

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Hi Karen,

It is great to see you in the challenge. Thank you for posting a very clear and logical idea.

Would you include a link to the website for In the Moment (a 501c3 non profit)? This is so I can find out more about what you do.

Also for your app idea, if someone watches a video and needs additional support, would they be re-directed to a helpline, chat feature etc?

I look forward to your response.

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Kate - I posted in the profile. Here it is: www.in-themoment.net
And to your question " Also for your app idea, if someone watches a video and needs additional support, would they be re-directed to a helpline, chat feature etc?"
You mean application idea right? Because this is not an app. I just wanted to make sure that I was clear. : ) We will have written information with more explanation and in the beginning folks will be able to email in any questions. I would like to be able to have the chat box available when I or a member of the team is available but right now the funding would not cover a 24/7 moment. Thanks.

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Kate,
How do we gain points in the evaluation and research sections? I realize it may be late to ask for clarity on this but I am super curious to learn more about this process. Thank you!

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Sorry Ruth Anne I didn;t answer earlier but I had/have no idea. Take care - K

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Hi Ruth Anne - you can gain research points by posting in the Research phase of an open Challenge and Evaluation points from Challenges that have Evaluation Phases open to the community (this one doesn't). Thanks for checking and for your awesome participation!

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Hi Karen,
This is a wonderful idea, I wish I'd had this years ago as my family cared for my grandmother... but that was pre-Internet, haha.... From personal experience I know that family caregivers can be woefully unprepared — not just in terms of skill sets, but also emotionally and psychologically — for the entire experience. Many of us must completely learn anew (or from scratch) how to interact with a seemingly “childlike” person in an empathetic manner that maintains his/her dignity. I completely agree that videos and shareable media can be a lot easier for overwhelmed caregivers to digest and put into action than, say, hefty tomes, or even recommendations at the doctor's office.

You mentioned that you’re looking for input on Site/Portal Design, so here are my two top thoughts:

With regards to the forum part of the site (you mention there would be a place for caregivers to share knowledge)... I found a site called CareNShare (http://carenshare.city.ac.uk) through the Parables of Care: Using comics to share dementia care good practice and enhance empathetic and creative dementia care  idea submission. Have you seen it? It might give some ideas about how to collect a database of knowledge...

You indicated that this site is mainly targeted to caregivers who are seeking solutions to everyday issues. This is an ideal scenario for maximizing your SEO (search engine optimization, arranging your site in a manner that allows it to come up prominently when people search for specific terms or phrases), so that when people turn to Dr. Google ("How can I get Dad to use walker?"), they find your site in the search results. For that purpose, it could be helpful to have the website categories/pages/subheadings arranged more around the types of questions/concerns they have, while consolidating the background info about your organization (who we are, what we do, contact) into somewhere less prominent but no less accessible. Constructing a questionnaire for your caregiver audience asking about top questions/keywords they have had at different stages of their loved one’s dementia could help you get started on that...

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Thank you so much Anna Lee for your thoughts. Copied them and put them in my folder to remember and come back to!!

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Great idea Karen Stobbe <3

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Thanks Susan!

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This is so needed. There is so little information out there that is truly person-centered for both the person living with dementia and his or her care partners. There is great opportunity with this to really meet caregivers where they are. Traditionally, "we" in the field disseminate information through aging services channels but is not really where people live! This online home could be shared through real life channels, like libraries, grocery stores, Starbucks.... I'm so excited about the possibilities. Because it is about living and thriving it gives a needed big picture approach to dementia, more than a medical perspective, which I think will resonate with lots of people and help change the paradigm of dementia from purely a medical experience to a "living every day" experience.

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Sonya, can I have permission to use this quote in my social media efforts? It clearly supports and defines what I am trying to do with my mission. What do you think?

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Love the "In the Moment" concept and believe it is critical in successful interactions with others. Our world is so busy and complicated with distractions. Just the act of slowing down to be totally present is sometimes the key to "a moment". Best of luck to you! Please check out my idea and offer feedback that help me continue to evolve my efforts. Thank you!

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Thank you Ruth Ann. Not just about being in the moment, but how to "be" with a person living with dementia. Ruth I saw you are starting or have started a new compoany - what is it? do you have a website?

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Karen,
I have started a new non profit organization in the Tampa Bay, Fl area : ) and I am so excited as we continue to develop the concept and refine services. Participating in this collaboration has been so rewarding! My website is dementiaredefined.com and please do not hesitate to share any feedback that will allow us to be clear, user friendly and worthwhile. You can also reach me at ristow@dementiaredefined.com for ongoing collaboration.

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Karen, I noticed you have points for research. Was this from a different phase of this initiative? Do you know how to obtain points in this category?