Teaching Self-Management Skills to Improve Self-Efficacy and Quality of Life for Caregiver Dyads in TBI and Dementia Populations
Abstract
Approximately 5.3 million people (2% of the U.S. population) live with a long-term disability as a result of traumatic brain injury (TBI) and between 5%-8% of those older than 60 suffer from Alzheimer’s disease or other forms of dementia. Consequences of these conditions can result in dramatic and persistent changes in many areas of functioning. Emotional and behavioral challenges are common and closely tied with decreased functioning in the home and society. These changes are not only devastating for patients, they also impact the close family or friends who become informal caregivers with little or no preparation. Family caregivers, the “hidden patients” in chronic care, are also at risk for poor psychological and physical health. According to the “Caregiving in the US 2015” study conducted by the National Alliance for Caregiving and American Association of Retired Persons, 43.5 million Americans are informal caregivers to people of all ages with disabilities and chronic illnesses. Existing services available to patients and their caregivers provide support and education. While this approach helps the family in the moment, it does not provide skills to manage stress and symptoms for the long term. Additionally, most treatments available target either the patient or the caregiver in isolation, but not together. Because these individuals exist in an interdependent system, the treatment need may be better addressed if overall family is included in the treatment. WeCAN (Wellness, Coping, and Adaptation for Neurocognitive Conditions) is a group-based treatment designed to teach both the patient and the caregiver (“dyads”) long-lasting skills to better manage the medical condition, thereby providing tools to improve self-efficacy and quality of life at the present and in the future. WeCAN teaches stress management, coping, and problem-solving skills and by design, is broadly applicable to a variety of populations and roles, as wellness is the driving focus. The proposed clinical trial will involve three Partnering Sites, each recruiting 60 individuals with neurologic conditions and their caregivers (total dyad n=180). A different clinical population will be targeted at each site: (1) Coordinating Center Kessler Foundation: moderate-to-severe TBI; (2) Partnering Site Franciscan Health: chronic mild TBI; and (3) Partnering Site University of Michigan: individuals with dementia. Patient/caregiver dyads will be randomly assigned to the WeCAN treatment group or an Active Peer Support control group. Both groups will undergo one 2-hour session per week for 12 weeks. All participants will be assessed before and after the training, as well as 6 months later, to see how the different programs may improve self-efficacy and quality of life, as well as relevant behavioral and biological predictors of treatment success. The present study is unique in its ambitious effort to use a unified treatment protocol across three neurologic populations. WeCAN utilizes psychoeducation and skill-building, which is tailored to each population and provides a variety of opportunities for patients and caregiver dyads to learn what works for their specific situation. WeCAN’s breadth is a true asset in this regard, as it is broad enough to be applicable to multiple groups (by population, by role) with different needs. Each Site, PIs, and their respective study teams specialize in their designated clinical population, and are thus well-versed in the nuances necessary for optimal conduct of clinical trials research for that neurologic condition. Kessler Foundation is well-positioned to be a strong and effective Coordinating Center, owing to its long history of leading multisite randomized clinical trials, including by the Site PI, Dr. Krch. The success of the project is poised to create a paradigm shift in our collective beliefs and attitudes toward health and health care in a fuller appreciation for the patient/caregiver relationship as a critical link
Document Details
- Document Type
- DoD Grant Award
- Publication Date
- Dec 05, 2021
- Source ID
- W81XWH2110743
Entities
People
- Denise Krch
Organizations
- Kessler Foundation
- United States Army