Dementia caregivers face daunting challenges as both the oldest subpopulation of those providing unpaid care and the most at risk of adverse health outcomes as a result of their role, including depression, anxiety, and increased mortality. To better understand the experiences and needs of dementia caregivers, a qualitative content analysis was conducted of secondary data extracted from call logs ( = 569) recorded by a provider-initiated, telephone-based support program. Experiences identified from the call logs were coded, categorized, and ranked to determine the most prevalent dementia caregiving-related experiences. Features of the program, particularly the semi-structured call format and directionality of calls, helped to uniquely capture common experiences of family caregivers and their day-to-day concerns. Findings from this analysis reflect the high prevalence of caregiver mental and emotional health-related concerns. This analysis supports the development of interventions that align with the experiences of dementia caregivers.
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http://dx.doi.org/10.1177/07334648241234745 | DOI Listing |
J Palliat Med
January 2025
Division of Geriatric Medicine, Department of Medicine, University of Colorado School of Medicine, Aurora, Colorado, USA.
Dementia clinical trials often fail to include diverse and historically minoritized groups. We sought to adapt the Alzheimer's Disease and Related Dementias-Palliative Care (ADRD-PC) clinical trial to improve enrollment and address the cultural needs of people with late-stage ADRD who identify as Hispanic or Latino and their family caregivers. Bilingual, bicultural research team members adapted study materials and processes using the Cultural Adaptation Process Model.
View Article and Find Full Text PDFGerontologist
January 2025
Center for Healthcare Delivery Sciences, Department of Medicine and Division of Pharmacoepidemiology and Pharmacoeconomics, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Background And Objectives: Care partners are critical for making treatment decisions in persons living with dementia. However, identifying them is challenging, hindering the broader use of interventions, such as those using digital technologies. We aimed to (i) assess the feasibility of identifying and contacting care partners using electronic health record (EHR) systems, and (ii) elicit their perspectives on electronic interventions for deprescribing.
View Article and Find Full Text PDFResearch suggests that the quality of care provided by family members may be influenced by the quality of relationship they have with the person living with dementia. The study investigated this in the context of assisting with daily activities. The quality of the relationship was assessed using the conceptual framework of relationship continuity/discontinuity which focuses on whether the carer experiences their relationship as continuous or discontinuous with the pre-dementia relationship.
View Article and Find Full Text PDFJ Alzheimers Dis
January 2025
Center for Health Services Research in Medicine, Uniklinikum Erlangen, Department of Psychiatry and Psychotherapy, Friedrich-Alexander-Universität Erlangen-Nürnberg (FAU), Erlangen, Germany.
Background: Little is known about the utilization of outpatient support services by people with mild cognitive impairment (MCI).
Objective: This study aimed to analyze the use of support services by people with MCI compared to people with mild to moderate dementia.
Methods: The data basis is the multicenter, prospective register study 'Digital Dementia Register Bavaria - digiDEM Bayern'.
Nurs Philos
January 2025
Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
The moral authority of advance directives (ADs) in the context of persons living with dementia (PLWD) has sparked a multifaceted debate, encompassing concerns such as authenticity and the appropriate involvement of caregivers. Dresser critiques ADs based on Parfit's account of numeric personal identity, using the often-discussed case of a PLWD called Margo. She claims that dementia leads to a new manifestation of Margo emerging, which then contracts pneumonia.
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