Birkeland, Robyn

Abstract BACKGROUND Some persons with late‐stage Alzheimer's disease and related dementias (ADRD) and seemingly very minimal cognitive abilities have transient episodes of unexpected, spontaneous, meaningful, and relevant communication or behavior. This phenomenon, referred to as lucidity, is not well understood, although it is frequently observed by family caregivers. METHODS An exploratory study using 24 qualitative interviews and 140 open‐ended response data documented family caregiver perspectives and experiences with lucid episodes during late‐stage ADRD. RESULTS Caregivers detailed their experiences witnessing a lucid episode and the resulting impacts. Caregivers revealed reasons they felt positive or upset about the lucid episode, discussed changes the lucid episode prompted, and shared the range of emotions they experienced. IMPLICATIONS Lucid episodes have a significant, enduring, and not always positive impact on caregivers. To better navigate and face sequelae associated with lucid episodes, caregivers should receive psychoeducation or consultation to help increase their understanding, set expectations, and cope with changes. Highlights Little is known about lucid episodes in late‐stage dementia and even less is known about how dementia family caregivers react to and are impacted by these episodes. Qualitative interviews can garner rich data on dementia family caregiving experiences with understudied phenomena such as lucidity. Lucid episodes have a varying but marked and long‐lasting impact on dementia family caregivers. The dementia care field must explore strategies for enhancing education and support to caregivers to build awareness and shape expectations of lucid episodes, a complex experience.

Introduction Alzheimer’s disease and related dementias (ADRD) are conditions with progressive cognitive decline. Still, people living with late-stage ADRD (PLWD) have been reported to exhibit transient recovery of communication or behavioural abilities that had seemingly been lost. These lucid episodes (LEs) are underinvestigated and poorly understood. This study aims to advance scientific understanding of the incidence, prevalence and predictors of LEs and assess from family caregivers if LEs are associated with changes they make in care planning or experiences with burden, distress or grief. Methods This study recruited 545 caregivers from five ADRD-related registries in the USA. Eligibility included caregivers over 18 years who currently provide care to someone with moderate to very severe ADRD and can complete online questionnaires. Using a longitudinal observational study design, consented caregivers will be assessed monthly for 1 year using online questionnaires that inquire about witnessing LEs. If witnessed, the context and content of the LE is reported. Changes in caregiver decision-making about care for the PLWD, and caregiver burden, distress and grief are assessed at baseline, 6 and 12 months. Analysis Analysis of baseline data will assess descriptive aspects of LEs that are currently unknown (eg, prevalence, content, antecedents, duration). Longitudinal analysis will examine the incidence of LEs, characteristics of PLWD and caregivers that are predictors of episodes, and the associations between LEs and caregiver outcomes (eg, burden, distress, grief). Ethics and dissemination This study is being conducted in accordance with all Federal Policies for the Protection of Human Subjects. The protocol has been approved by the Mayo Clinic Institutional Review Board (ID 22-006861). Findings will be presented at scientific conferences and disseminated through journal publications and outreach efforts with collaborating partners invested in brain health and caregiver support.

Abstract Background and Objectives Research has established that unpaid family members, friends, or others who care for persons with dementia (ie, caregivers) may encounter socioemotional and physical health concerns as a consequence of providing extensive assistance. Similarly, caregivers for people living with traumatic brain injury (TBI) often experience a range of stressors and negative mental health outcomes due to care demands. Individuals with TBI often develop Alzheimer’s disease and Alzheimer’s disease-related dementia (AD/ADRD). This history of TBI may introduce complications to AD/ADRD caregiving. A comprehensive intervention grounded in the understanding of the complex caregiving context of both diagnoses is warranted to address the unique needs and concerns of TBI-AD/ADRD caregivers. Research Design and Methods This study evaluated the feasibility of the TBI-AD/ADRD Caregiver Support Intervention (TACSI) psychoeducational program, designed to support the unique subset of caregivers facing the challenge of assisting relatives with AD/ADRD and a history of TBI. TACSI, a 6-session telehealth intervention, provides tailored psychosocial and psychoeducational coaching. In partnership with the 2 national healthcare centers, 15 caregivers enrolled in the 3-month feasibility study evaluating the design and subsequent refinement of TACSI. Mixed methods data were collected from 3-month follow-up surveys and qualitative data from postintervention interviews. Results The feasibility, utility, and acceptance of TACSI were established. Caregivers liked the telehealth delivery and the personalized nature of TACSI, yet some expressed it would have been more beneficial earlier in their caregiving journey. Discussion and Implications Caregivers valued the TACSI program. Their feedback has been applied to improve TACSI content and delivery for a larger pilot randomized controlled trial that is currently underway.

Abstract Research has established that dementia care partners may encounter socio-emotional and physical health concerns as a consequence of providing dementia care. Similarly, care partners for people living with Traumatic Brain Injury (TBI) often experience a range of stressors and negative mental health outcomes due to their care demands. This study aims to support the unique subset of family care partners facing the challenge of caring for relatives who have both diseases, Alzheimer’s Disease/Alzheimer’s Disease related dementia (AD/ADRD) and a history of TBI. Phase I of this study focused on the design and subsequent refinement of the TBI-AD/ADRD Caregiver Support Intervention (TACSI). TACSI is a six-session telehealth intervention providing tailored psychosocial and psychoeducational coaching. Session topics include education on TBI and dementia, stress management, lifestyle planning, and communication skills. In partnership with the Minneapolis VA and the Mayo Clinic-Rochester, we enrolled 15 care partners for Phase I. Mixed methods data from 3-month follow-up surveys and qualitative data from post-intervention interviews established the feasibility, utility, and acceptance of TACSI. Care partners found the program valuable and would recommend it to others. They reported that TACSI helped with their stress management. Some participants shared that TACSI would provide greater benefit to newer caregivers needing more education on the diseases and/or caregiving. Phase I feedback will be applied to improve TACSI content and delivery for the Phase II randomized controlled trial evaluation. TACSI Phase I utility, acceptance, and feasibility outcomes will be highlighted as well as next steps for evaluation.