Research priorities of caregivers and individuals with dementia with Lewy bodies: An interview study

Abstract

Background Funding bodies are placing increased emphasis on patient and public involvement in research, but the research priorities of individuals and caregivers living with dementia with Lewy bodies (DLB) are unknown. Method Investigators conducted telephone interviews with individuals living with DLB and caregivers. Participants were recruited from a Lewy Body Dementia Association Research Center of Excellence. Interviews employed a semi-structured questionnaire querying research needs in different categories and then asking participants to select their top priorities. Investigators used a qualitative descriptive approach to analyze transcripts and identify themes. Results Twenty individuals with DLB and 25 caregivers participated. Seventeen from each group participated as part of a patient-caregiver dyad. Twenty-three of the caregivers were spouses, two were daughters. Individuals with DLB and caregivers identified research needs relating to focusing on awareness, determining the cause of DLB, improving diagnosis, and investigating what to expect/disease stages. Participants also highlighted DLB symptoms needing additional research, therapies to prevent, cure, or slow the progression of DLB, and research targeting daily function and quality of life, caregiving, and improving education. Conclusions These findings support the research priorities defined in the National Institutes of Health dementia care summits in addition to ADRD priority-setting summits. Research is needed

Comparison of the Caregiving Experience of Grief, Burden, and Quality of Life in Dementia with Lewy Bodies, Alzheimer’s Disease, and Parkinson’s Disease Dementia

“…Other studies have examined the role of dyadic communication and quality of intimate relationships between caregivers and care recipients [49]. Findings such as these provide further support that psychosocial constructs may be more dependent on care recipient caregiver dyad characteristics and the current symptoms than the underlying cause of those symptoms, and align with caregiver interests in expanding research topics in DLB, PDD, and AD [50].…”

Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study

“…While some needs and concerns could be aligned with more than one category, there were no new categories that emerged outside of the five domains from the needs and concerns framework. Although the sample was small, needs and concerns reflected those described in the literature (Armstrong et al, 2019, 2020b; Galvin et al, 2010a; Killen et al, 2016; Leggett et al, 2011). Mirroring similar studies, participants described the need for more information about the disease, prognosis, and what to expect when caring for someone with LBD (Armstrong et al, 2019, 2020b; Galvin et al, 2010b; Killen et al, 2016).…”

“…However, with these studies the diagnoses were self-reported, respondents self-selected, and responses were limited by an online survey format. Qualitative LBD caregiver studies identified in the literature focused primarily on information needs at end-of-life and caregiver research priorities (Armstrong et al, 2019(Armstrong et al, , 2020a(Armstrong et al, , 2020b. While these studies yielded important information and established a baseline understanding of caregiver needs, a qualitative study of the needs and concerns of caregivers of persons with LBD is needed to advance the science in this area.…”

Lewy Body Dementias: Controversies and Drug Development

“…There is no consensus on the high-priority symptoms for evaluation, as individuals with LBD may have variable degrees of cognitive, neuropsychiatric, autonomic, motor, or sleep disturbances [6,71].…”