Over 16 million Americans are currently providing unpaid care to a family member, relative, or friend with Alzheimer?s disease or related dementia. While caregiving can be a positive experience that brings meaning and an increased sense of purpose, it can also take a toll. Nearly 60% of Alzheimer?s and dementia caregivers rate their emotional distress as high or very high, and as many as 40% suffer from depression. Caregivers with distress provide poorer quality care to the care recipient, and are more costly to employers because of reduced productivity and higher healthcare costs. As the number of Americans with Alzheimer?s disease and related dementias increases, so will the need for informal caregivers. Changes to public and workplace policies and the availability of low-cost and convenient supports will be essential to encourage individuals to meet the increasing societal demand for Alzheimer?s and dementia caregivers. In addition, effective, easily disseminable interventions will be required to promote well-being among individuals who take on the caregiver role. The primary goal of the proposed research is to develop and assess the feasibility of a Transtheoretical Model of Change (TTM)-based intervention, Connect2Care, designed to facilitate caregivers? progress through the stages of change for using healthy strategies to manage emotional distress. Given the cost of informal caregiving to employers, Connect2Care will be designed for dissemination via workplace wellness programs and rely on universal screening to identify Alzheimer?s and dementia caregivers with reduced well-being. To fit into the busy lives of caregivers, the intervention will be delivered via text messages with links to brief web-based assessments, information, and activities. Extensive end-user, expert consultant, and key stakeholder input will ensure that the intervention is designed for rapid dissemination and incorporates best practices for user uptake and sustained use. Alzheimer?s and dementia caregivers who are employed will be recruited from Employee Assistance Programs and Alzheimer?s caregiver support groups to participate in focus groups (n=56), cognitive tests (n=8), and iterative usability testing (n=16) to provide input and feedback during the formative phases of the research. Also, 250 dementia caregivers who are employed and have reduced well-being will be recruited by a survey company and via Alzheimer?s and caregiver advocacy organizations to: (1) participate in a 15-minute online survey to validate stage of change measures and to provide data on preferences regarding Connect2Care program features (N=200), or (2) to participate in a 30-day pilot test of the Connect2Care program (N=50). In the pilot, the three criteria for establishing the feasibility of this approach to intervention are as follows: (1) dementia caregiver willingness to engage with the program, as evidenced by continued receipt of text messages and four or more interactions with the program by at least 70% of study participants during the 30-day intervention period; (2) caregiver acceptance of the program, as evidenced by overall mean ratings of at least 4 out of 5 on an acceptability measure; and (3) caregiver benefit from the program, evidenced by statistically significant pre-post improvement in caregiver well-being. Those who fail to sustain engagement will be asked to participate in telephone interviews to provide feedback on how the program can be improved. Phase I data will inform modifications and finalization of the design specifications for the full Connect2Care intervention program that will be developed in Phase II.
Given the personal, societal, and employer costs of the extra burden often associated with informal caregiving, the proposed research will develop and assess the feasibility of a mobile Transtheoretical Model of Change (TTM)-based multiple behavior intervention to promote caregiver well-being. The intervention will be designed to be disseminated via workplace wellness programs. This intervention has the potential to advance the science of how to promote caregiver well-being using a cost-effective, easily disseminable solution.
