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Self-management interventions: considering needs and preferences of dementia caregivers
Investigator (PI): Zauszniewski, Jaclene A
Performing Organization (PO): (Current): Case Western Reserve University, Frances Payne Bolton School of Nursing / (216) 368-4700
Supporting Agency (SA): National Institutes of Health (NIH), National Institute of Nursing Research (NINR)
Initial Year: 2020
Final Year: 2024
Record Source/Award ID: RePorter/ R01NR018476
Funding: 2020 Award Amount: $739,409
Award Type: Grant
Abstract: With every passing minute, a family member begins a "caregiving career" consisting of the provision of informal care for an elder with Alzheimer's disease or other dementia. During the caregiving career, these family members (i.e., carers) progress through three distinct phases, from primary caregiver in the home, to care partner when the care recipient requires long-term placement, to caretaker after their loved one has passed away. As family carers experience transitions from caregiver to care partner to caretaker, they face changes in their care recipient's needs, behaviors, and symptoms that may adversely affect their own health. Although preliminary clinical trials show heart rate variability biofeedback (BF) and resourcefulness training (RT) are two beneficial health self-management interventions for dementia caregivers, the effects of delivering these interventions according to carer need or preference have not been examined. This randomized controlled trial will therefore evaluate the effects of health self-management interventions (BF or RT) delivered according to carer need or preference compared with an attention control condition on caregiving responses (perceived stress, depressive cognitions, and negative emotions) and health outcomes (health risks and physical and mental health) over time. Carers will be randomized to 1) an attention control (i.e., diversional activity) group; 2) self-management intervention based on need (SM-need); or 3) self-management intervention of their preference (SM-preference). SM-need will be determined by the lowest cut score on validated measures of heart rate variability (for BF) and resourcefulness (for RT). SM-preference allows the carer to choose between BF and RT. The study aims to 1) examine the effects of a health self-management intervention (BF or RT) delivered by need or preference in family carers of persons with dementia on caregiving responses and health outcomes over time; and 2) determine whether differences exist among caregivers, care partners, and caretakers in carer responses and health outcomes over time. Family carers will be assessed at baseline (T1), 6 months (T2), and 12 months (T3) post-intervention. Interventions will occur between T1 and T2 data collections. Repeated measures bivariate and multivariate analyses will control for months in carer role, dementia symptom severity, and caregiving demands while addressing the study aims. The study findings will generate new scientific knowledge about the effectiveness of novel, easy-to-use, independently performed interventions that can be self-tailored to promote the health of carers of persons with dementia throughout their caregiving career. Once established, these health self-management interventions can be tailored to match the needs and preferences of other comparably distressed family caregivers of persons with other chronic mental or physical conditions.
MeSH Terms:
  • Access to Health Care
  • Attention
  • Caregivers /*psychology
  • Chronic Disease
  • Cognitions
  • Dementia /*rehabilitation
  • Depression /rehabilitation
  • Emotions
  • Family Health
  • Heart Rate
  • Humans
  • Outcome Assessment (Health Care)
  • Randomized Controlled Trials as Topic
  • Risk
  • * Self Care
Country: United States
State: Ohio
Zip Code: 44106
UI: 20211158
Project Status: Ongoing