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Respite Lite: Part of the Respite Care Share family

Program designed for dementia caregivers who feel hesitant about utilizing traditional respite care but still desire a break.

Photo of Joy Johnston
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Respite care is vital to a family caregiver's well-being. Not only does taking a break help a caregiver alleviate stress and recharge physically, mentally and emotionally, it can also make them a better caregiver.

Respite Care Share was conceived during OpenIDEO's End-of-Life Care Challenge in 2016. 

After conducting a survey with dementia caregivers on the Respite Care Share concept, I found a general reluctance to take traditional respite care  (taken away from the home for a weekend or more) because it's too disruptive. Dementia caregivers are reluctant to leave their loved one, and those with dementia thrive on routine.

I researched  ways to offer dementia caregivers mini-respites: reading a book at a coffee shop, getting a massage, enjoying a leisurely lunch, etc. as more feasible options for family caregivers to take a break. 

From that research, I created a prototype: care bags. These care bags included gift cards to mini-respite venues: a restaurant, coffee shop, a spa. The care bags also included a thank-you care and a book of inspirational stories about caregiving.

I distributed the care bags to members of a caregiver support group that meets at a dementia cafe. The bags included a survey, and the feedback I received was very positive. Based upon the successful prototype, I believe shorter forms of respite will be more utilized by dementia caregivers, while still being beneficial.

Read more about how Respite Care Share has evolved since the OpenIDEO challenge.

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

Traditional respite care is often not feasible for dementia caregivers because it's too disruptive. By focusing on shorter forms of respite, caregivers can still get the break they need, and are more likely to use such services on a regular basis.

Tell us about your work experience:

I'm a digital journalist, author and caregiver advocate. I served as a long-distance caregiver for my father, who had dementia, and a hands-on caregiver for my mother, who had colon cancer.


Join the conversation:

Photo of Kate Rushton

Hi Joy,

It is good to see you here and to read about how Respite Care Share has developed.

Were the caregivers supporting people with early, mid or late-stage dementia? Did you notice a difference in the type and intensity of support needed at the different stages?

What are the next steps for Respite Care?

Photo of Joy Johnston

The caregivers in the support group mainly had loved ones in the mid- to latter-stages. I think the big difference was whether the person with dementia was living in the home or in a facility. Obviously, the caregivers for those who were in memory care centers had a bit more flexibility with their personal time, though not as much as one would think. (Some spent all day, every day with their loved one at the care center.)

I'm exploring avenues to help grow the care bag concept, and have it implemented in various settings (such as a medical office or home care) to gain more feedback from caregivers.