November is National Family Caregivers Month, led by the Caregiver Action Network. Family caregivers are individuals who provide care and support to a loved one with a disability or an older adult living in the community. Most often, these caregivers are not paid for this activity. In fact, many caregivers are supporting a loved one while also working full or part time. Caregiving can be incredibly rewarding, but it can also be challenging, especially during difficult times like the coronavirus pandemic. A recent survey from the NIDILRR-funded Center for Research, Training, and Dissemination of Family Support for People with Disabilities Across the Life Course found that caregivers are more likely to experience social isolation, mental health issues, and financial and food insecurity than non-caregivers during the current pandemic.
Research efforts to support family caregivers include understanding the impact of caregiving on mental and physical health, employment, and financial security, and developing interventions, tools, and technology to support families in the community. Current projects funded by NIDILRR include:
Center for Research, Training, and Dissemination of Family Support for People with Disabilities Across the Life Course. This center conducts research that addresses family support for people with disabilities across the lifespan to improve care, health, and quality of life outcomes. Research includes scaling up the Community Aging in Place, Advancing Better Living for Elders (CAPABLE) intervention to examine how effective it is in maintaining independence of people with disabilities and improving caregiver quality of life, and a SmartRehab program which uses tech for self-management, among others. The center’s training activities include mentoring the next generation of research on family support, a geriatric certificate program for clinicians and graduate students, and a professional development and continuing education series.
Research and Education to Support the Science of Independent Living for Inclusion and Engagement: National Center of Excellence RRTC (RESILIENCE RRTC). The Center’s mission is to improve the health and function of people with disabilities and their caregivers by adapting and supporting broader use of two award winning evidence-based programs for children and older adults with disabilities (Chicago Parent Program and CAPABLE); and to design new approaches to deliver these programs using key attributes of effective and sustainable programs to ensure their effectiveness, relevance, utility, and usability in different settings and contexts. A recent brief from the center highlights the innovative cross-sector work of six states to strengthen family caregiver programs and explores what is needed at the state and national levels to advance innovations to support family caregivers.
Comparing Transition Support Interventions for Family Caregivers of ABI Patients. This field-initiated project compares the effectiveness of two interventions that offer support to caregivers of people with acquired brain injury (ABI) including traumatic brain injuries and strokes, as they transition from inpatient rehabilitation to recovery at home. This project examines two interventions, Building Better Caregivers (BBC) and Problem-Solving Training (PST), and measures their impact on (1) caregiver stress/burden and depression, (2) caregiver self-efficacy in their ability to manage their loved-one’s care needs, and (3) healthcare utilization (i.e., hospitalization, emergency room, and doctor office visits) by patients and caregivers in the first six months after discharge from the rehabilitation hospital. Both interventions include education and support to help family members better manage their loved one’s care needs and manage the stress and rigors of caregiving.
Efficacy of the ASD Screening and Parent ENgagement (ASPEN) Intervention Program in Low-Resource Communities. This field-initiated project examines the efficacy of the Autism Spectrum Disorder (ASD) Screening and Parent ENgagement intervention, a culturally-informed parent-mediated intervention program when delivered to caregivers and children at risk for ASD who reside in low-resource households.
In addition to these projects, you may be interested in these resources from the broader disability and rehabilitation community:
The Administration for Community Living (ACL) programs and councils help support and empower those caring for people with disabilities and older adults including the National Family Caregiver Support Program, the Lifespan Respite Care Program, and the RAISE Family Caregiving Advisory Council, among others. Learn more about these and other ACL-funded caregiver programs and councils.
The National Institute on Aging at the National Institutes of Health funds research and development to support older adults and their caregivers. Visit their site to learn about long-term care planning, long-distance caregiving, and Alzheimer’s and caregiving.
Two national organizations support caregivers in the community, the Family Caregiver Alliance and the Caregiver Action Network. Both organizations offer information, training, educational programs, and opportunities to connect to a community of caregivers and caregiver-supporters.
If you are looking for additional research or community resources, please contact our information specialists today!