This study explored the beliefs and experiences of Alberta nurses concerning withholding and withdrawal of treatments from incurably or terminally ill patients. A mailed survey containing closed and open-ended questions was used to gather data. A response rate of 47% was achieved. The majority of respondents believed patients should legally be able to request that treatments be withheld (98%) or withdrawn (97%). More than half of the respondents had received requests from patients, families or physicians to withhold or withdraw treatments. Occasionally, nurses acted without physicians' knowledge. Three different positions with respect to decision-making in withholding and withdrawing of care, 'subordinate', 'collaborative' and 'independent', emerged from nurses' written comments on the questionnaire. Consensus among health care practitioners and consumers is critical to end-of-life decision-making.
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http://dx.doi.org/10.1016/s0020-7489(01)00006-2 | DOI Listing |
Background: Dementia is a life-changing condition for patients and caregivers. Response to a diagnosis often includes grief, shock, and despair. Unfortunately, evidence demonstrates inadequate use of person-centered communication practices during diagnostic disclosure, which adds to psychological distress.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
School of Medical and Health Sciences, Tung Wah College, Kowloon, Hong Kong.
Background: Understanding how caregivers perceive their own aging process is essential for addressing their well-being and the quality of care they provide. This study aimed at exploring the relationship between caregivers' self-perception of ageing in relation to their strain experienced in caregiving, and their perceived physical and mental health symptoms. Moreover, to examine if the strain experience and perceived health condition were key predictors to their self-perception of ageing.
View Article and Find Full Text PDFAlzheimers Dement
December 2024
College of Medicine, University of Ibadan, Ibadan, Nigeria.
Background: Limited knowledge exists about the cultural approaches to managing the psychological and behavioral outcomes (PBO) of Alzheimer's Disease and Alzheimer's Disease-Related Dementia (AD/ADRD) in Africa. Specifically, to develop a culture-sensitive training framework for AD/ADRD caregivers, we explored AD/ADRD caregivers' cultural embeddedness in managing people living with AD/ADRD (PLWAD/ADRD) in Ibadan, Nigeria.
Method: Using hermeneutic phenomenological qualitative research design, we interviewed 23 caregivers providing care to PLWAD/ADRD in Ibadan, a Yoruba-speaking ethnic group of Nigeria.
Alzheimers Dement
December 2024
Department of Clinical, Educational, and Health Psychology, Division of Psychology and Language Sciences, University College London, London, United Kingdom.
Background: How people affected by non-memory-led and inherited dementias (NMLDs) interact with online health resources is poorly understood. We conducted the world's largest survey exploring 'digital access in non-memory-led dementias' to learn directly from people with NMLD, their care partners and NMLD Healthcare Professionals (HCPs) about the NMLD experience interacting with web-based health resources.
Method: Four surveys [for individuals diagnosed with NMLD, care partners, care partner proxy for person with NMLD, HCP proxy] were co-developed with people with NMLD experience.
Alzheimers Dement
December 2024
University at Albany, SUNY, Albany, NY, USA.
Background: The experience of spouse caregivers of individuals with Alzheimer's Disease (AD) is marked by witnessing the gradual cognitive decline of their loved ones. This journey transforms the nature of their marital relationship, evolving from mutual interdependence to a more unilateral caregiving role. Despite this significant shift, the specific phenomenon of self-loss among these caregivers remains underexplored in academic research.
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