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.
WHAT IS RESPITE LITE?
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.)
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 FEATURES
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.)
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
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.)
ADDITIONAL RESPITE LITE OFFERINGS
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 & POTENTIAL PARTNERS
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
RESPITE LITE MISSION STATEMENT
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.
RESPITE LITE GOALS
- 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.