Over 11 million Americans are currently providing unpaid care to a family member or friend with Alzheimer's disease or a related dementia (ADRD). 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 ADRD caregivers rate their emotional distress as high or very high, and over 30% suffer from depression. Caregivers with distress have higher healthcare utilization and costs and provide poorer quality care to their care recipient. Further, employed caregivers have decreased productivity and higher absenteeism due to their caregiving responsibilities. With the aging of the US population, the number of Americans living with ADRD is expected to triple in the next 30 years, which will lead to a drastic increase in the number of people who care for them. Thus, there is an urgent need for effective, easily disseminable interventions that promote the well-being of ADRD caregivers. As a part of our pilot development, Pro-Change conducted extensive formative qualitative and quantitative research to guide the development of a digital intervention prototype, Caring4Caregivers (C4C). Based on the Transtheoretical Model of Behavior Change (TTM), the program uses an approach to facilitate progress through the stages of change for using five self-care behaviors critical to the well-being of ADRD caregivers: 1) becoming educated about your family member or friend's stage of illness and needs; 2) figuring out your strengths and limits; 3) searching for and accepting outside help where needed; 4) taking time each day to care for yourself; and 5) getting emotional support. Intervention components, designed to fit into the lives of busy ADRD caregivers, include a brief assessment with immediate feedback and guidance; daily stage-matched text messages; and a web portal with an Information Center and stage-matched activities for each self-care behavior. In a 1-month pilot test involving 52 ADRD caregivers with low subjective well-being, C4C was well- received, and participants experienced statistically significant pre-post improvements in well-being and self- care behaviors. In the research we are proposing, the primary aims are to fully develop the C4C intervention, incorporating what was learned in the pilot, and to assess the intervention's efficacy in a 9-month trial involving 234 ADRD caregivers. Participants will be randomly assigned to the C4C condition or to an attention control condition. Efficacy of C4C will be assessed by comparing changes in subjective burden, emotional and physical well-being at 3, 6, and 9 month follow-up in those randomized to the treatment vs. control conditions. Secondary outcomes will include changes in depression, caregiver risk, and number of self-care behaviors. Analyses will assess whether intervention effects are moderated by intervention "dose" and key participant characteristics, including gender, race, age, who the caregiver is caring for, and number of self-care behaviors at baseline. The successful completion of Phase II will set the stage for disseminating an evidence-based caregiver well-being intervention to employers, wellness platform providers, and other organizations.
Public Health Relevance Statement: 8. Project Narrative In the US, the over 11 million Americans currently providing unpaid care to a family member, relative, or friend with Alzheimer's disease or a related dementia (ADRD) are over 6 times more likely than the general population to suffer from depression (33.9% vs. 5%), and nearly 60% rate their emotional distress as high or very high. The proposed Phase II research will continue the successful work of the pilot development and testing by conducting a rigorous scientific study of the effects of Caring4Caregivers, a digital program that customizes behavior change guidance for using five self-care behaviors critical to ADRD caregiver well-being: 1) becoming educated about your family member or friend's stage of illness and needs; 2) figuring out your strengths and limits; 3) searching for and accepting outside help where needed; 4) taking time each day to care for yourself; and 5) getting emotional support. With the number of Americans living with ADRD and the number of people who care for them expected to triple in the next 30 years, this intervention offers a science- based, easily disseminable solution designed fit into the busy lives of ADRD caregivers to increase their well- being.
Project Terms: Absenteeism; ages; Age; Aging; AD dementia; Alzheimer Type Dementia; Alzheimer disease dementia; Alzheimer sclerosis; Alzheimer syndrome; Alzheimer's; Alzheimers Dementia; Primary Senile Degenerative Dementia; primary degenerative dementia; senile dementia of the Alzheimer type; Alzheimer's Disease; Behavior; Mental Depression; depression; Disease; Disorder; Dropout; Drowning; Electronic Mail; E-Mail; Email; electronic communication; Expenditure; Fatigue; Lack of Energy; Feedback; Genes; Health; Hearing; Household; Income; Economic Income; Economical Income; incomes; Information Centers; Information Systems; Data Systems; IT Systems; Information Technology Systems; Interview; Learning; Masks; Memory; Theoretical model; Theoretic Models; Motivation; Persons; Oxygen; O element; O2 element; Parents; parent; Patient Outcomes Assessments; Patient Reported Measures; Patient Reported Outcomes; Perception; Personal Satisfaction; well-being; wellbeing; Productivity; Race; Races; racial; racial background; racial origin; Research; Risk; Science; Self Care; personal care; Testing; Time; Translating; Work; Friends; Gender; Measures; Care Givers; Caregivers; Family member; Caring; stress buffering; stress management; Married Persons; Spouses; improved; Phase; Medical; Ensure; mental; Psyche structure; Distress; Individual; Health Care Utilization; health care service use; healthcare service use; healthcare service utilization; healthcare utilization; health care service utilization; Measurement; Wife; randomized control trial; Randomized, Controlled Trials; grandparent; Depressed mood; depressed; sadness; Life; programs; Adopted; Hour; Techniques; Dementia; Amentia; behavior change; Accident and Emergency department; Emergency Department; Emergency room; American; experience; forgetting; phrases; Participant; General Population; General Public; Reporting; emotional distress; feeling distress; feeling upset; Emotional; Caregiver Burden; Burden on their caregivers; burden in caregivers; burden of their caregivers; burden on caregivers; Quality of Care; QOC; theories; Intervention; Intervention Strategies; interventional strategy; Provider; Effectiveness; Preparedness; Readiness; Address; Dose; Randomized; randomisation; randomization; randomly assigned; Characteristics; follow-up; Active Follow-up; active followup; follow up; followed up; followup; Text; Development; developmental; care giving; caregiving; cost; digital; designing; design; determine efficacy; efficacy analysis; efficacy assessment; efficacy determination; efficacy examination; evaluate efficacy; examine efficacy; efficacy evaluation; intervention efficacy; therapeutic efficacy; therapy efficacy; Treatment Efficacy; cost effective; Population; caregiving burden; caregiving stress; care giving burden; Alzheimer risk factor; alzheimer risk; Alzheimer's disease risk; intervention design; treatment design; therapy design; prototype; loved ones; evidence base; primary outcome; secondary outcome; intervention effect; attentional control; treatment group; internet portal; on-line portal; online portal; web-based portal; web portal; care receiver; care recipients; care giver well-being; care giver wellbeing; caregiver wellbeing; Caregiver well-being; caregivers for persons living with dementia; caregivers for persons with dementia; caregivers of individuals with dementia; caregivers of patients with dementia; dementia care giver; Dementia caregivers; short message service; texting; Text Messaging; AD related dementia; ADRD; Alzheimer's and related dementias; Alzheimer's disease and related dementia; Alzheimer's disease and related disorders; Alzheimer's disease or a related dementia; Alzheimer's disease or a related disorder; Alzheimer's disease or related dementia; Alzheimer's disease related dementia; compare intervention; comparison intervention; Alzheimer's care giver; Alzheimer's caregiver; Alzheimer's dementia care giver; Alzheimer's dementia caregiver; Alzheimer's disease care giver; caregivers of patients living with Alzheimer's; caregivers of patients with Alzheimer's; caregivers of persons living with Alzheimer's; Alzheimer's disease caregiver; digital intervention; pilot test
