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Respite Lite [Updated 12.25.17 with goals]

Program designed for dementia caregivers as alternative to traditional respite by encouraging and facilitating brief respite opportunities.

Photo of Joy Johnston
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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?

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 Lite would support dementia caregivers who are reluctant to leave their loved one in the care of others. By facilitating brief respite options, dementia caregivers can take the breaks they need with minimal disruption to their household, likely increasing respite usage.



All caregivers need a break, but for dementia carers, taking respite is often viewed as not feasible for a variety of reasons. In order to encourage greater respite usage among dementia caregivers, we need innovative solutions to supplement traditional respite care. 

We talk about meeting the person with dementia where they are when it comes to care. We must do the same for the dementia caregiver, meeting their respite needs in a way that best suits their situation.

"It’s so sad knowing that someone I love has to die before I can live again."  

-- Purple Sherpa caregiver Michelle Cooney

The Caregiver Space: What keeps you from taking respite?

Common responses: Too expensive, no one to watch their loved one, too difficult to coordinate, guilt about leaving loved one.


Respite Lite is specially designed for dementia caregivers who feel hesitant about utilizing traditional respite care by encouraging and facilitating brief respite breaks. Respite Lite is part of Respite Care Share, which was one of the Top Ideas in OpenIDEO's End-of-Life Care Challenge. (You can read more about the Respite Care Share concept at the link above and updates via the Impact phase.)

WATCH: Respite Lite introduction video

What I learned through feedback on Respite Care Share is that caregivers, especially those caring for loved ones with dementia, were most interested in brief respite opportunities. Longer breaks were seen as too difficult to manage and too disruptive to maintaining the routine that many people with dementia require. Some caregivers expressed fear that traditional respite would cause more stress than not taking any respite. By providing brief respite options, dementia caregivers can take the breaks they need to support their emotional well-being, with minimal disruption to their household.

University of Michigan: National Poll on Healthy Aging

  • 78 percent saying caregiving was stressful
  • While only 1 in 4 caregivers reported that they had taken advantage of resources designed to help them, 41 percent of those who didn’t expressed interest in such support.


Respite Lite has two main components: care bags and an app*. A prototype of the care bag was tested as part of Respite Care Share; the app would be a new component specific to Respite Lite and allow users to access a variety of programs for caregivers.

While a recent study by the Massachusetts eHealth Institute found that 70 percent of family caregivers in the state don't use technology on a regular basis to assist with caregiving duties, 90 percent had a laptop or smartphone and 96 percent go online daily. A peer-to-peer support platform was of interest to caregivers. There's an opportunity to build a smart, simple app that can assist caregivers, especially those who live in rural areas.

*NOTE: All features and programs in the Respite Lite app would be available to users via a website (for those who have a computer but not a smartphone) and offline (in the form of pamphlets and other written resource material.)



Use Care Bags to provide brief respite opportunities that promote relaxation.

Brief respite ideas: 

  • Restaurant or coffee shop gift card
  • Spa or yoga gift certificate 
  • Museum/aquarium gift certificate
  • Movie tickets
  • Book offering inspirational stories for dementia caregivers: Chicken Soup for the Soul: Living with Alzheimer's and Other Dementias.

The care bags would also include resources for the caregiver's loved one to be tended to while the caregiver enjoys their brief respite (could be anywhere from an hour to a few hours.) This would vary by community, but could include partners such as adult day care centers, memory cafes, and home health care agencies.


A smartphone/tablet app to offer further respite options. The easy-to-use app would allow users to apply for a care bag, try "instant respite" ideas, book respite, and find a caregiver buddy.

Request Care Bag

Caregivers could sign up for the care bag program via the app. (Verification could be made through the caregiver's or the care recipient's doctor, a caregiver support group facilitator, or other similar entity.)

Instant Respite

Deliver inspirational/humorous quotes, anecdotes, supportive messages: Offers daily support, like Daily Word without religion, targeting dementia caregivers. This could be powered/sponsored by existing inspirational and caregiver support groups like Caregiver Monday and The Purple Sherpa.

Instant Respite ideas:

  • Zentangle/coloring books
  • Minute meditations/yoga
  • Cute animal photos/videos


Book Respite

In order to utilize the brief respite opportunities provided in the care bags, caregivers will need access to a care center and/or quality, pre-screened caregivers in their area. The app would allow users to easily review caregivers in their area and book service. The app would also list nearby adult day care centers. The care bags would include a coupon code that the caregiver would enter when booking respite care that would cover the cost of hiring a caregiver or paying any fees associated with a day care center.

Caregiver Buddy program: The app would also allow caregivers to connect with fellow dementia caregivers as part of the Caregiver Buddy program. Caregivers could connect online, via social media, or by phone or in person. (In lieu of establishing separate program, Respite Lite could partner with AARP to promote AARP's Caregivers in the Community program.)


In-home respite ideas:

While caregivers need respite options outside the home, it is important to encourage daily respite activities. These respite activities can even involve the person with dementia and can be done at home.

Respite Lite would encourage activities caregivers and their loved ones with dementia can do together that are positive:

  • Recording family stories: Ideal for those in the earlier stages of Alzheimer's, who may have sharper memories of their younger days and be able to provide details that the entire family will treasure forever.
  • Creating photo albums and scrapbooks: Great way to engage a person with dementia in the earlier stages of the disease. A photo can spark a conversation and lift spirits.
  • Puzzles: Relaxing and provides a sense of accomplishment. Good rainy-day activity.
  • Gardening: When weather permits, gardening is an excellent low-key outdoor activity.
  • Crafts: Good way to keep loved ones with dementia occupied and entertained, to reduce the risk of agitation and wandering. Creative Carer a mother and daughter team on Facebook, had such success with crafting that the daughter is selling her mother's creations on Etsy, with a quarter of profits benefiting the Alzheimer's Society.)
  • Pet therapy: Organizations and individuals who have certified therapy animals and make house calls. Example: Therapy Dogs International: Home Visit Program.
  • NaturFX: Environmental designer Royce Priem has created tool for homebound caregivers/patients that alters the landscape of a room with video walls to create "calm rooms" and offer a soothing in-home respite experience.


Existing models for care bags

The care bags could model a program aimed at a younger audience called The Positivity Pack and programs aimed at older generations called Grandbox.

Sam's Club, in conjunction with Kimberly-Clark, Caregiver Action Network and the Alzheimer's Foundation of America, launched its Caregiver Box program in 2016. Free sample boxes were given out as part of Sam's Club National Family Caregiver Month promotion.

Existing models of caregiver support groups:

  • Soldiers' Angels: Offer a Women of Valor volunteer program in which people can "adopt" a caregiver of a soldier. They send 2 cards/letters a month and care packages for holidays. The Angels are also encouraged to correspond with the caregivers by letter, email or social media. READ: A more in-depth analysis of the Soldiers' Angels platform and how it could be applied to programs like Respite Lite.
  • The Caregiver Space: Offers email penpal program, pairing caregivers with each other to offer moral support.
  • The Purple Sherpa offers an active, supportive Facebook group, as part of its caregiver outreach offerings. (Link is to their main page; the group is private, need to request access.)
  • AARP Caregivers in the Community app: The app pairs caregivers with one another for support.
  • Caregiver centers: Some hospitals operate caregiver centers on the premises, where they host caregiver support groups and provide information on caregiver support services such as respite.


Respite Lite would be most successful if the program was launched locally (in a city/town or perhaps small state) and administered by people living in that community. My research has found that there are many wonderful respite care and caregiver support programs in the U.S., but one of the biggest challenges is raising awareness of their existence.

Respite Lite could be incorporated into a PACE program, which already has active organizations in 31 states. Alternatively, private or nonprofit funding could be provided for a pilot program in one locality, and the results could dictate how the program should expand statewide and nationwide.

Other potential funding sources: Foundation grants, nonprofits, state respite agencies, caregiver centers.

Success story: I interviewed Jill Gottlieb, Coordinator, and Jerri Rosenfeld, Director, of the Ken Hamilton Caregivers Center Replication Program in New York, which offers a tremendous resource to caregivers who have loved ones at Northern Westchester Hospital. The caregivers center operates within the hospital facility, but is funded by a private donor and through community donations. 

Takeaways from Gottlieb and Rosenfeld:

  • Focus groups helped narrow scope of caregiver center and what it would offer.
  • Started small with a committed interdisciplinary team. Leadership noted that their caregiver support program, the centerpiece of the center, can be done without a dedicated physical space.
  • Best center features, as rated by caregivers:  Peaceful place to collect thoughts, someone to talk to who understands, being recognized/appreciated as caregiver
  • Most requested services: Respite, Alzheimer's information/resources, Caregiver toolkit, Advanced directive
  • Volunteers are key to caregivers center staffing. (Best endorsement is when former caregivers who used center come back to volunteer.) Fundraisers held in the community help keep the center running.
  • Key to success: Staying in touch with caregivers


With the help of community partners and a funding source, Respite Lite could become an affordable, scalable solution to deliver realistic respite opportunities to dementia caregivers that would integrate into their lives with minimal disruption. Respite Lite would empower caregivers to tend to their own well-being and encourage caregivers to be creative in discovering their own respite moments.

Respite Lite could harness the power of the thriving online dementia caregiver community to encourage self-care, reinventing respite and increasing respite care usage.


  • Increase respite use among family caregivers, especially dementia caregivers
  • Encourage at-home breaks for caregivers with the promotion of mini-respites
  • Promote positive engagement between caregiver and care recipient at home with activity suggestions
  • Generate greater awareness and support for respite care among aging and Alzheimer's organizations.
  • Find care partners interested in sponsoring elements of Respite Lite at local or national level.

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

I created a prototype of the care bags and tested it with members of a dementia caregiver support group in early 2017. I created an online survey and the feedback I received from caregivers was positive; the contents of the care bags were less important than the gesture itself. Caregivers liked feeling appreciated.

I'm volunteering with Soldiers' Angels in their Women of Valor program that supports the caregivers of veterans with PTSD. My care bag prototype will be tested here as well.

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

More input from family caregivers of those with dementia: what feasible, reasonable respite options they would use on a regular basis.

Business Development/Partnerships: Finding interested partners who would sponsor the care bag contents. (i.e. Businesses that would donate gift cards in exchange for logo on bag.)

Distribution partners: Care bags would need reliable distribution partners to make program successful. (i.e. Doctor's office, adult day care center, home health agency.)

How long has your idea existed?

  • Over 1 year

This idea emerged from

  • An Individual

Tell us about your work experience:

I'm a digital journalist, author, and caregiver advocate. I've participated in a previous OpenIDEO challenge (End-of-Life.) I was a long-distance caregiver for my father, who had dementia.

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

Respite Lite is a program custom-designed for dementia caregivers who feel hesitant about utilizing traditional respite care by encouraging and facilitating brief breaks via care bags and an app.

How does your idea demonstrate our Criteria of Accessibility?

Care bags do not need to contain expensive respite options. My prototype test demonstrated that personal recognition and a brief break from caregiving duties were most appreciated by dementia caregivers.

Partners could offset costs by donating respite care items, such as gift cards, massages. (Example: The Paul Mitchell Salon school in Wisconsin partnered with the Alzheimer's Association to offer haircuts and free manicures/pedicures to caregivers.)

How does your idea demonstrate or plan to demonstrate scalability?

The assembly and distribution of the care bags could begin with a single organization or care facility and expand as resources allow. For example, if the Atlanta chapter of the Alzheimer's Association supported Respite Lite and found it to be successful, the program could expand to other chapters in Georgia, and then to other states' chapters.

Respite Lite would require partners to sponsor the bag's contents, volunteers to fill the bags and volunteers to distribute the bags.

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

Each care bag includes a pre-paid postcard to provide feedback. There's also a Google Form that captures feedback for those who are more tech-savvy. Gift card numbers could be tracked to assess usage.

I'm active in the dementia and Alzheimer's caregiver community, educating myself on what communities around the world are doing to assist caregivers and how that could be incorporated into Respite Lite.

What are your immediate next steps after the Challenge?

To continue to refine the contents of the care bags, based upon caregiver feedback.

Distribute another test batch of care bags to garner additional feedback from caregivers.

Seek funding options and partnership opportunities to deliver the Respite Lite concept to a larger group of caregivers.

Continue the promotion of Respite Lite and Respite Care Share though my websites, advocacy journalism, and social media networks.
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Attachments (2)

respite lite brochure.pdf

A mock brochure for the Respite Lite program.


Join the conversation:

Photo of Molly

Hi Joy Johnston , I really appreciate your idea, you’ve brought a great idea with some really comprehensive service components to the challenge. You cover many service aspects, so it is a great example of how it can grow, since it is grounded in Phase 1 (outreach and take-away) Care bags. The addition of feedback forms in the care-bags is a great way to integrate continuous improvement, and adapt your second phase solutions to the target populations needs. I would suggest that the doctor deliver the bags, not the caregiver center— that way those that most need it (are most likely to stay for the whole appointment, rush home, etc) will still receive the first touchpoint of the service. Or perhaps somewhere else... it could be interesting to map the interactions that all/most caregivers share, other than a PCP. There needs to be an “In” for caregivers who are not at hospitals or living in major cities. In this sense I could see it as a successful subscription (free/subsidized cost model) service. You could advertise and target to populations with SEO, looking at search queries common to caregivers for loved ones with dementia. Since you are looking for business development partnerships and distribution partners, perhaps looking at amazon (shipping) or other corporate sponsors that have ties to user needs, such as target or Wal-Mart because they have pharmacies and are one-stop shopping. I think it is a great idea that care bags do not need to contain expensive options—even just extra denture cleaners or other freebies that make their caregiving role easier, could be a form of respite from the simple frustration of having to buy all these things. (But I imagine the feedback you get from participants in phase 1 will be best for determining the offerings in the care bag.) This is a really great idea, and I wish you the best of luck.

Photo of Joy

Thanks Molly for offering such great feedback. I agree that choosing the best sources to deliver the care bags is key. The subscription model is also something to consider, a good way to recognize a caregiver on a regular basis.

Photo of Kate

Hi Joy,

What is in the bags that you tested in Atlanta?

How could this be funded? What business models would help this idea scale?

Photo of Joy

The care bags contain gift cards for mini-respites, which include cafes, restaurants, movie theatres, and spas. The bags also include a book about caregiving and a personalized thank-you card.

The care bags could either be sponsored as a whole by a heath care organization or businesses could donate goods to be included in the bags in exchange for having their logos on the bags and/or branded materials included inside the bags.

If the care bags were distributed in a medical setting, which would be ideal, they would be similar to the bags dentists hand out to their patients on each visit that include toothpaste, a toothbrush, floss, lip balm, etc. to encourage oral care at home.

Photo of Susan

Thanks, Kate, for sharing Paula Span's article. Her portrayal of dementia caregivers is right on. Joy Johnston Respite Lite is a terrific idea. How about adding something that pairs caregivers with a walking partner to get outside in nature - a walk in the park, hike on a trail, accompany a dog owner to the dog beach......

Photo of Joy

I like the idea of a walking partner. A good way to motivate a caregiver to get some fresh air, enjoy nature, and vent and share with another kindred spirit. There was an article that I read years ago about a community program that was doing something like that. I'll have to look into it.

Photo of Kate

Hi Joy,

It is good to see you in the ideas phase as well.

I am just posting a link to your research post -

I was sent a link to this article this morning - - it reminded me of your idea post.

Photo of Joy

Hi Kate, thanks for sharing the NYT article. Paula Span is doing an excellent job covering aging topics, and I always learn something from her pieces.