Caring for caregivers and persons living with dementia under home-based primary care: protocol for an interventional clinical trial.

BACKGROUND: Approximately 7.5 million older adults are homebound, who have difficulty and/or need assistance to leave their homes. In this growing population, the prevalence of people living with dementia (PLWD) is approximately 50%. Current dementia care models in the USA were developed for traditional office-based primary care and have not been tailored to home-based primary care (HBPC) delivery models. Literature has shown that office-based collaborative interventions can improve caregiver outcomes including caregiver stress, well-being, and morbidity and patient outcomes including improved quality of life and reduced emergency department visits (Possin KL, Merrilees JJ, Dulaney S, Bonasera SJ, Chiong W, Lee K, JAMA Int Med 179:1658, 2019). To date, the evidence for HBPC dementia interventions is lacking. Though HBPC has demonstrated benefit in homebound older adults, there is limited literature on the effects of HBPC on persons living with dementia (Nguyen HQ, Vallejo JD, Macias M, Shiffman MG, Rosen R, Mowry V, J Am Geriatr Soc 70:1136-46, 2021). Our goal is to develop a HBPC-focused dementia care intervention that integrates the components of two previously developed dementia care models and test the feasibility of implementing it in HBPC practices to improve the quality of life and wellbeing of homebound PLWD and their caregivers. METHODS: We will first conduct qualitative focus groups at two HBPC practice sites, one in the Southeast and one in Hawaii in order to obtain preliminary feedback on the proposed intervention. At each site, there will be one focus group with caregivers of PLWD and another with HBPC clinicians and staff to help develop and refine our intervention. We will then conduct an open-pilot trial of the refined intervention at the two HBPC practices. A total of up to 25 patient/caregiver dyads will be recruited at each site (N = 50 total). Outcomes measured through pre-and-post assessments and exit interviews will include (a) feasibility for the caregiver to engage with and complete baseline assessments and access educational materials and community resources and (b) feasibility for the practice to identify potential caregivers/patients, assess eligible patient/caregiver dyads, use patient and caregiver assessments, recruit patient/caregiver dyads, recruit racial and ethnic minorities, use care modules, and engage with the tele-video case conference, (c) net promoter score, (d) acceptability of the intervention to caregivers and patients to participate in the intervention, (e) caregivers feeling heard and understood, and (f) caregiver well-being. DISCUSSION: Testing the feasibility and acceptability of the adapted intervention in these two HBPC practices will provide the basis for future testing and evaluation of a fully powered intervention for PLWD and their caregivers cared for in HBPC with the goal of disseminating high-quality and comprehensive dementia-care focused interventions into HBPC practices. TRIAL REGISTRATION: This trial was registered with ClinicalTrials.gov NCT05849259 in May 2023.

Vision difficulty and dementia: economic hardships among older adults and their caregivers.

Introduction: Limited research has examined the economic impact of vision difficulty (VD) and dementia on older adults and their caregivers. We aimed to determine whether older adults with VD and/or dementia, and their caregivers, face more economic hardships than their counterparts without VD or dementia. Methods: We used cross-sectional data from the 2015 National Health and Aging Trends Study (NHATS), a population-based survey of Medicare beneficiaries, linked to their family/unpaid caregivers from the National Study of Caregiving (NSOC). Regression models characterized the association of VD (self-report), dementia (survey and cognitive assessments), and co-occurring VD and dementia with debt, receiving financial help from relatives, government-based Supplemental Nutrition Assistance Program (SNAP), other food assistance, utility assistance, and caregiver financial difficulty. Results: The NHATS sample included 6,879 community-dwelling older adults (5670 no VD/dementia, 494 VD-alone, 512 dementia-alone, 203 co-occurring VD and dementia). Adults with VD and dementia had higher odds of receiving SNAP benefits (OR = 2.6, 95%CI = 1.4-4.8) and other food assistance (OR = 4.1, 95%CI = 1.8-9.1) than adults without VD/dementia, while no differences were noted for debt, financial help, and utility assistance. Adults with VD-alone had higher odds of debt (OR = 2.1, 95%CI = 1.3-3.2), receiving financial help (OR = 1.7, 95%CI = 1.1-2.5) and other food assistance (OR = 2.7, 95%CI = 1.7-4.3); while adults with dementia-alone had higher odds of debt (OR = 2.8, 95%CI = 1.4-5.5). The NSOC sample included 1,759 caregivers (995 caring for adults without VD/dementia, 223 for VD-alone, 368 for dementia-alone, and 173 for co-occurring VD and dementia). Compared to caregivers of older adults without VD/dementia, caregivers of adults with VD and dementia had higher odds of financial difficulty (OR = 3.0, 95%CI = 1.7-5.3) while caregivers of adults with VD-alone or dementia-alone did not. Discussion: While older adults with VD- or dementia-alone experienced increased economic hardships, disparities in food assistance were amplified among older adults with co-occurring disease. Caregivers of adults with co-occurring disease experienced more financial difficulty than caregivers of adults with a single or no disease. This study highlights the need for interventions across clinical and social services to support the economic wellbeing of our aging population and their caregivers.