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Dementia Workbook

Develop a workbook to be used by primary care providers to aid in the discussion of trajectory of dementia and advance care planning.

Photo of Cathy Coleman
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Who is your idea designed for and how does it reimagine the end-of-life experience?

Designed for physicians to be used as a guide in conducting advance care planning for patients and families with dementia.

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

Illicit physician volunteers from the medical group I'm employed with

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

Assistance in developing applicable context for the workbook.

Tell us about your work experience:

Adult Nurse Practitioner employed at a 200 bed adult community hospital in Palliative Care.

This idea emerged from

  • An Individual

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Photo of Anne-Laure Fayard
Team

Hi Cathy, I like the idea of the workbook.
I was talking with a friend yesterday whose mother has dementia and she was telling me how hard it was for her and her siblings to see her like this. 
I wanted to clarify a few things: who would be your users? primary care providers working with people with dementia to initiate conversations with families? I think it'd be great for you to do one or two ideation session with your colleagues to understand better their needs and the challenges they face. You might also want to talk to families and maybe involve some in the ideation session. You could then understand their needs and develop a series of themes to include in the workbook. 
You might also watch this video: https://challenges.openideo.com/challenge/end-of-life/research/the-human-connection-of-palliative-care-ten-steps-for-what-to-say-and-do

Photo of Cathy Coleman
Team

Thanks for your response. The workbook or guide is intended for physicians to be used as a resource for discussing trajectory of dementia and advance care planning. Research review indicates the need and desire by physicians to have these conversations, but lack the skill at conducting these conversations. Thanks for your suggestions. I enjoyed the link and your article.

Photo of Anne-Laure Fayard
Team

Thanks for your clarification. Your point about lack of skills echoes the point made by Dr Meier. She, and others, might have developed materials that could help you as you develop the workbook.
I believe that engaging some patients and families at some point would be crucial to understand better their needs. Even if the workbook is for the physicians, you need to make sure you have a deep understanding of the people they interact with. 
I am looking forward to reading updates as your idea evolves.

Photo of Aaron Wong
Team

Interesting idea for patients and families of dementia, Cathy, and thanks for sharing!
I look forward to seeing your idea grow. Check out Oonie Chase 's inspiration posts Living & Ending Notebook , and Distraction & Interaction  - they're not necessarily about dementia, but may be an opportunity to expand beyond dementia patients and their families. Also, can more community be injected into the workbook idea - Maryalice wrote a wonderful post about a dementia village in her post: Why Can't Every Nation Have a Dignified 'Dementia Village' like the Netherlands?  Check them out and ask them questions! 

Photo of Cathy Coleman
Team

Thanks for your reply. Loved the ''empathy " cards and the "dementia village."