The supplement request is within the approved scope of the active parent award with family caregivers on home care for older adults with advanced heart failure (HF). This proposed supplement, as an extension of the parent grant, will be focusing on vascular dementia which has a high incidence among older HF patients. Up to 80% of patients with HF have vascular dementia, the second most common form of dementia. In the U.S, West Virginia (WV) has the top Alzheimer?s disease related dementias (ADRD) death rate (42.4 per 100,000 population) and HF death rate (32.6 per 100,000 population). Currently, in WV, more than 38,000 people are living with dementia, and over 107,000 families are providing home care and this is estimated to increase by 15.8% in 2025. In 2019, the nation spent $290 billion for ADRD, which is projected to cost more than $1.1 trillion dollars in 2050. Notably, both vascular dementia and HF are common conditions among aging populations. Up to 80% of patients with HF have cognitive decline due to poor heart health and low vascular blood flow. Cognitive decline in patients with HF can affect their ability to comply with treatment regimens, difficulty in reading, writing, understanding dosage, and thinking logically. Also, cognitive decline of vascular dementia limits individuals? ability to identify and report symptoms of HF complications. This leads to frequent rehospitalizations due to HF decompensation which can be fatal. Having the additional diagnosis of dementia further complicates self-management of HF and increases demands on family caregivers, this is exacerbated by limited availability of support services in rural areas. This study data will identify and tailor interventions that are responsive to the needs of individuals with HF and vascular dementia, and their family caregivers in rural Appalachia. This supplement will use the Best Practices for Mixed Methods Research in the Health Sciences, recommended by NIH, as the best method to address complex pressing health issues that requires multiple perspectives to resolve. This study sample (40 subjects; 20 patients, 20 family caregivers) is drawn from the large numbers of WV HF patients with vascular dementia at home with caregivers in rural Appalachia.
Aim 1. Assess physical, emotional and functional status and home care needs of patients with HF and vascular dementia in rural Appalachia.
Aim 2. Assess the caregiver burden, physical and mental health status, and the home care skills needed for family caregivers of HF patients with vascular dementia in rural Appalachia. This mixed method research will begin with quantitative questionnaire data collection from patients and family caregivers and be followed by a qualitative approach using individual interviews and focus group discussion. The study outcomes will result in more in-depth understanding of the family home care situation for HF with vascular dementia. The supplement data will stimulate research activities with rural families managing HF complicated by dementia at home. Data collected will be used for planning a future trial.
This project uses mixed methods research to identify and tailor interventions that are responsive to the needs of individuals with heart failure (HF) and vascular dementia, and their family caregivers in rural Appalachia. Data collection include short questionnaire survey, individual interview with patients and their family caregivers, and focus group discussion with family caregivers. The supplement data will stimulate research activities with rural families managing HF complicated by dementia at home.
