Transportation: A Key Component of Respite Care for Family Caregivers

Nearly 7 million Americans are currently living with Alzheimer’s disease, a progressive brain disease that affects memory, thinking and behavior. As Alzheimer’s progresses, caregiving demands increase significantly. Over time, the abilities of the person living with Alzheimer’s will change, and functioning independently and driving becomes more difficult. Ultimately, caregivers will have to take on greater responsibility, resulting in the complete support of basic activities of daily living like bathing, dressing and eating.

Caregivers are also often responsible for supporting instrumental activities of daily living like transportation. As stated in the Caregiving in the U.S. study, 80% of caregivers reported managing transportation needs for their care recipient, a task that is required to maintain health, independence, connection and overall quality of life.

Increasing caregiving responsibilities and the long duration of the disease can have a significant impact on caregiver health. According to the Alzheimer’s Disease Facts and Figures report, nearly 60% of family caregivers experience high or very high stress levels associated with caregiving. Family members, friends and other unpaid caregivers provide the majority of support to individuals living with dementia in the community, but long-term care services are often required to maintain the health and safety of the person living with dementia. 

Respite care for family caregivers can be an essential resource to balance care needs for the individual living with dementia while maintaining caregiver health. Respite care provides caregivers a temporary rest from caregiving, while the person living with dementia continues to receive care in a safe environment.

For family caregivers, finding respite offerings can be challenging but essential for maintaining their well-being. While traditional respite services, like in-home care or short-term stays at care facilities, provide vital breaks, there’s another often-overlooked form of respite: transportation.

In response to the challenges with accessing respite services, a new grant program is helping to fund innovative respite models across the country. Over the course of five years (2024-2029), the Alzheimer’s Association® Center for Dementia Respite Innovation (CDRI) will award $20 million in competitive grants to local respite care providers to increase the availability and improve the delivery of person-centered dementia care with a focus on innovation, collaboration, impact, accessibility, affordability and sustainability. The grant and sub-grants the CDRI will generate will result in developing and piloting cost-efficient, effective, strengths-based, person-centered, innovative models of dementia-specific respite care. The CDRI is led by representatives from the Alzheimer’s Association, the University of Minnesota School of Public Health and USAging.

Many of the programs funded in the first year of the CDRI grant include transportation services as a key feature of their new models, recognizing that the ability to get to and from respite care is just as important as the care itself. One such program in Hawaii is offering a direct shuttle bus service to an adult day center. From shuttle buses to ride-share programs, these initiatives are making respite care more accessible and less stressful for both caregivers and their loved ones.

For transportation agencies interested in partnering with respite providers on this grant opportunity, visit the Alzheimer’s Association Community Resource Finder to find local providers.

Transportation can serve as both a means to access respite services for individuals living with dementia, but it can also be a form of respite for family caregivers who need a break from caregiving.

Transportation providers can play a crucial role in alleviating the stress of caregiving by providing an alternative means of support for the individual living with dementia and facilitating moments of respite for the caregiver. Some of the benefits of dementia-capable transportation services include:

• Flexibility: Scheduled services or on-demand options allow for greater flexibility in coordinating services or addressing last-minute needs or calendar changes. This also reduces the stress of adhering to a public transportation schedule.
• Safety: Door-to-door service, accessible vehicles and trained drivers that are prepared to support individuals living with dementia can provide peace of mind for a safe and supported journey.
• Access: Consistent access to health resources like medical appointments or even clinical studies can improve health outcomes for the individual living with dementia.
• Independence and Engagement: Transportation services can promote increased participation in social events, adult day programs and support groups which can reduce social isolation and improve quality of life for the person living with dementia. Transportation provided as part of a community organization may also improve connection and engagement for the caregiver as well.

To create more dementia capable transportation services, providers can also offer programs like travel training, mobility management and dementia training for drivers. Services for driver training may also be available locally through innovative programs like Navigator Transportation from Melanin Minded, LLC.

As we look toward the future, it’s clear that integrating transportation into respite models is an essential step toward supporting family caregivers. By removing barriers to access, we can help ensure that caregivers have the time, space and resources they need to provide the best possible care for their loved ones, while also preserving their own well-being. By improving transportation support, caregivers can experience a more manageable and fulfilling caregiving journey.

OUTRO:  NADTC encourages transportation providers to consider how to create more dementia-friendly transportation. FTA 5310 Funds can be used to support the following programs and services that will make transportation accessible to people with dementia:

• Travel Training
• Mobility Management
• Door to door, door through door, and hand to hand service
• Training for drivers and staff including Dementia 101

Emily Shubeck, LSW, is the director of Direct Care Workforce Programs and Supports for the Alzheimer’s Association. She is responsible for the development and oversight of products that leverage current evidence-based practices to improve the quality of care for individuals living with dementia in long-term and community-based care settings. She holds a master’s degree in social work from Loyola University Chicago and a bachelor’s degree in psychology from Syracuse University.

Isabella Marini is the associate director of the Center for Dementia Respite Innovation at the Alzheimer’s Association. In this role, she is responsible for the day-to-day management and oversight of the Center. Isabella holds a bachelor’s degree in nonprofit administration from Cleveland State University and is currently pursuing a dual master’s degree in business administration and healthcare administration from Indiana Wesleyan University.