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Helping caregivers navigate the world with a loved one with dementia

By equipping caregivers with communication tools upon diagnosis, we can reduce their emotional burden when dealing with their new normal.

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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?

Caregivers of people recently diagnosed with dementia need tools to help them get started in their new role and as their experience evolves. By equipping them with language and communication tools, they will feel better equipped to care for their loved one and help them navigate social space that have newly become unfamiliar.

In order to support caregivers who are helping a newly diagnosed loved one, UnitedHealthcare could send a "welcome kit" type mailing which is designed specifically for the caregiver.  The kit would include resources about the loved one's benefits and contacts for UnitedHealthcare representatives who are able to help them navigate their journey with dementia, and information about how to become someone's health care proxy to operate within UnitedHealthcare's complex systems.  The toolkit would also contain some core communication tools, which are the fundamental pieces of my idea:

  1.  "Say this... not that..." flyer: This sheet would be designed to teach caregivers how to talk to their loved one when they are having an episode of memory loss.  It would suggest common situations and how to respond in a way that doesn't dismiss or belittle their loved one, and explain why some statements may sound hurtful coming from their parent/spouse but are really just symptomatic of their disease.
  2. "Please be patient, my ______ has memory loss" cards: These business card sized handouts are designed to be a discreet way of letting people know that a loved one is dealing with dementia and may need extra time or care.  For example, to pass to a waiter at a restaurant, or to a clerk at the grocery store.  This gentle reminder helps loved ones with dementia navigate their world with more support without embarrassing them or making a scene, and spares the caregiver from having to have a difficult conversation over and over again with strangers.


These ideas came out of a discussion with my mother, who has been caring for my grandmother who started experiencing memory loss about ten years ago.  While my grandmother lives in a full-time memory care facility now at age 92, my mother recalls the first few years of being a caregiver for her mother's disease as a fearful time where she felt alone and didn't know how to help.  A support group she attended offered these types of tools which helped her immensely.  My mom also suggested that a support group for caregivers is tremendously valuable, but that many of her friends were deterred from attending support groups because they had no one to care for their loved one while they attended.  A support group where loved ones would be welcome to come and be cared for by someone else was her suggestion, whether it's a bingo game or art project.  Simply offering a way to relieve caregivers for an hour and to create a space for sharing in a community of people dealing with similar experiences could make a big difference.

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

Piloting the "welcome kit" concept with newly diagnosed members and their caregivers would be quick and easy. Operating a support group may be more complex, but could be organized around a community center or other care facility for people with dementia, where caregivers are already congregating to visit their loved ones.

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

What other materials could go in the "welcome kit"? What other tools help caregivers navigate the new experience of caring for a loved one with dementia? What national resources for caregivers are out there?

How long has your idea existed?

  • 0-3 months

This idea emerged from

  • An Individual

Tell us about your work experience:

UnitedHealthcare Medicare & Retirement strategy team, with other previous experience in technology (product development, analytics and data science) and public health.

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Photo of Brittany Margot
Team

Hi Caroline - welcome to Refinement!

We're eager to see updates to your idea and learn more. Don't forget there are a few additional questions now that you're in the Refinement Phase. You can see them by clicking "Edit Contribution" and scrolling to the questions that don't yet have answers from you. We also encourage you to add a user journey map and start thinking about a small experiment you could test in the next few weeks. Perhaps testing with both caregivers and care-recipients? Gathering feedback? Please reach out with questions! or feel free to email me at bmargot@ideo.com.

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