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Extending Independence

Speaking with our friends made us question how to extend independence for early stage dementia patients.

Photo of Kinjal, Scott, Tyler Gumb
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Dementia is one of the most debilitating diseases. It is pervasive and far reaching in its impact. It places an extraordinary burden on both patients and their caregivers. 

Today, 5.4 million people suffer from dementia in the US alone. In 2015, an average caregiver spent more than 1,200 hours in unpaid care. They were also forced to work additional jobs, extend work hours, and postpone retirement. More than 40% caregivers face this challenge alone, as they have little to no support network for assistance and nearly 60% report having high levels of day-to-day stress.


Interviews

A few of our friends are caregivers for loved ones with dementia and hearing their stories inspired us to want to help others going through a similar experience. Please see clips of the interviews in the media gallery above.

James’s story:

James is 35 years old and single. He is the sole caretaker of his father, age 65, who was recently diagnosed with mild cognitive impairment, the intermediate diagnosis made before dementia. His father is living alone, about an hour from James’ apartment, but he has recently suffered further cognitive decline precipitated by cancer surgery and this has made it more difficult for James to care for him. His father’s erratic moods and difficulties in performing daily tasks independently are a few of the main challenges James is struggling with.   

Susan’s story:

Susan is 55 years old and single. An older friend of hers suffered from familial early onset dementia. It has been over ten years that this friend has been living with dementia. She was placed in a long term care facility a few years ago. Susan visits her regularly. Susan tells us that her friend’s long term care insurance lapsed when she forgot to pay during the early stages of her cognitive impairment. Due to this, long-term care management, health insurance and finances have been ongoing challenges in caring.


Going Forward

Our desk research and interviews with caregivers and doctors is guiding our thinking in the direction of designing to increase independence for early stage dementia patients. Maintaining the sense of independence for as long as possible and reducing the strain on caregivers is critical at this stage.

What is a provocation or insight that might inspire others during this challenge?

Both caregivers we interviewed reported that in the early stages of mild cognitive impairment there was significant resistance by their loved ones to take steps and get the help they needed. This stubbornness to relinquish the independence they had left is understandable, even though it would have helped them. This made the job of caregiving significantly harder.

Tell us about your work experience:

Kinjal Shah, Scott Cowell and Tyler Gumb are a team of three graduate students currently studying Interaction Design at SVA. They have backgrounds in architecture, UX design and Alzheimer's research.

7 comments

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Photo of ilan

Hi Kinjal, Scott and Tyler, your videos are powerful. Kate Rushton pointed to your videos because she liked a solution I posted to one challenge family caregivers face: https://challenges.openideo.com/challenge/caregiving-dementia/ideas/short-life-stories-build-empathy-for-people-with-dementia-who-can-t-tell-their-own-stories/comments#c-7276b4e634704d0a4149c2055fe6b2ca

Would love to chat with you guys further about things you've learned.

Photo of Kinjal, Scott, Tyler Gumb

Thanks Ilan.

I love your idea. It reminds me somewhat of this project I did for a competition earlier this year. May be of some interest to you:
https://www.tylergumb.com/storyline/

Absolutely we'd love to chat. Feel free to shoot me over an email and we can talk.

Photo of ilan

Hi! Is there a way I can direct message you, or some other way to email you? I don't feel comfortable posting my email in a public forum. thanks!

Photo of Kinjal, Scott, Tyler Gumb

Hi Ilan,

Sorry for the delay I was waiting to hear back from Openideo support if there is the ability to direct message on this platform.
Apparently not, so I've just added a link to my email at the end of the description here:
https://www.tylergumb.com/pageme/

Looking forward to talking with you.

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