Of the 65 million Americans who serve as informal caregivers of persons with chronic disability or illness, about 5.5 million are caring for Veterans. These caregivers play a significant role in helping to maintain the health and well-being of Veterans and often experience significant burden related to their caregiving role, including poor physical health, financial difficulties, and low confidence in the care they provide. Current VA programs aim to improve caregivers' knowledge and ability to provide direct care at home to patients with dementia, TBI, cancer, and stroke. However, these programs have a number of limitations. First, they are not always able to respond to caregivers' social and practical needs adequately. Second, caregivers of seriously ill Veterans ? age 65 living in the community, an age group with high risk for unmet needs secondary to chronic illness and impairment, may not always get needed services due to an emphasis on post 9/11 Veterans and their caregivers. Third, they do not focus specifically on helping caregivers to navigate existing resources to meet their social and practical needs. Based on evidence of their effectiveness in other settings, health navigator programs may help address unmet social and practical needs of caregivers and reduce caregiver burden by providing direct linkages to services and other resources. This CDA proposes to develop a novel, effective navigator intervention targeting caregivers of older, community-dwelling Veterans with advanced illness. In prior work, patient navigation programs have facilitated cancer screening, clinical follow-up, advance care planning, psychosocial support, and care coordination. The central hypothesis is that a novel adaptation of established models of navigation can improve the ability of caregivers to care for older Veterans with advanced illness (cancer, COPD, or CHF) if it is: 1) informed by caregivers and patients themselves along with other VA and community stakeholders; and 2) focused on identifying and supporting social support and practical needs using both VA and community resources. To evaluate this hypothesis, three complementary, but distinct specific aims are proposed:
(Aim 1) Assess social and practical needs of caregivers of older (? age 65) community-dwelling Veterans with advanced illness and their preferences for intervention.
This aim will include prospectively conducted key-informant interviews with seriously ill Veterans and caregivers coupled with input from a Stakeholder Advisory Board which includes Veterans, caregivers, VA providers, and community organization membership (e.g., Area Agency on Aging);
(Aim 2) Using data from Aim 1, develop a curriculum to train navigators to identify caregiver needs and link them to resources within VA and their community to address those needs;
and (Aim 3) In a pilot study, assess feasibility and acceptability of a caregiver navigator intervention in meeting the social and practical needs of caregivers of community-dwelling older veterans with advanced illness by increasing knowledge of and access to services and resources. The findings of this study will lead to a novel intervention which may significantly reduce caregiver burden and, in so doing, improve the care of community dwelling veterans with advanced illness. This is consistent with VA's Health Services Research and Development priority of improving caregiving and long- term care in service to Veterans. The effectiveness of the intervention developed in this CDA can be further tested in a large, RCT supported by an IIR Merit Award.
Informal caregivers of veterans with advanced illness often face challenges in meeting the needs of the Veterans for whom they care. This CDA aims to develop and test a novel navigator model to assist caregivers with linkages to VA and community resources to address unmet social and practical needs so they will be most successful in their caregiving role. This CDA aligns with VA Priority 1 - greater choice through expansion of services with community components - and Priority 4 ? efficiency through VA and community coordination. Additionally, this responds to the National Academies 2016 report recommending that VA develop processes to identify and support the needs of caregivers. The project falls within HSR&D priorities for aging, long-term care, and caregiving, and is congruent with efforts of Durham VA's Caregiver Support and Palliative Care Programs as well as the Area Agency on Aging.