Conectar
Alzheimer’s disease and other dementias affect >50 million individuals globally and are characterised by broad clinical and biological heterogeneity. Cohort and biobank studies have played a critical role in advancing the understanding of disease pathophysiology and in identifying novel diagnostic and treatment approaches. However, further discovery and validation cohorts are required to clarify the real-world utility of new biomarkers, facilitate research into the development of novel therapies and advance our understanding of the clinical heterogeneity and pathobiology of neurodegenerative diseases.
The Tallaght University Hospital Institute for Memory and Cognition Biobank for Research in Ageing and Neurodegeneration (TIMC-BRAiN) will recruit 1000 individuals over 5 years. Participants, who are undergoing diagnostic workup in the TIMC Memory Assessment and Support Service (TIMC-MASS), will opt to donate clinical data and biological samples to a biobank. All participants will complete a detailed clinical, neuropsychological and dementia severity assessment (including Addenbrooke’s Cognitive Assessment, Repeatable Battery for Assessment of Neuropsychological Status, Clinical Dementia Rating Scale). Participants undergoing venepuncture/lumbar puncture as part of the clinical workup will be offered the opportunity to donate additional blood (serum/plasma/whole blood) and cerebrospinal fluid samples for longitudinal storage in the TIMC-BRAiN biobank. Participants are followed at 18-month intervals for repeat clinical and cognitive assessments. Anonymised clinical data and biological samples will be stored securely in a central repository and used to facilitate future studies concerned with advancing the diagnosis and treatment of neurodegenerative diseases.
Ethical approval has been granted by the St. James’s Hospital/Tallaght University Hospital Joint Research Ethics Committee (Project ID: 2159), which operates in compliance with the European Communities (Clinical Trials on Medicinal Products for Human Use) Regulations 2004 and ICH Good Clinical Practice Guidelines. Findings using TIMC-BRAiN will be published in a timely and open-access fashion.
Elder abuse is a global human rights issue, particularly in residential care settings where there is limited understanding of older people's experiences of this phenomenon. This scoping review aims to map and describe the existing literature on this phenomenon.
Using Arksey and O'Malley's scoping review methodology, further developed by Levac et al. and the Joanna Briggs Institute, a systematic search of six databases was conducted to identify relevant studies published from inception to January 2023. Studies were included if they focused on older people's experience of abuse within residential care settings. A comprehensive data extraction process was employed to identify key themes from the included studies.
The initial search yielded a total of 3701 articles of which eight met the inclusion criteria. The findings revealed a range of abusive experiences encountered by older people living in residential care settings, including psychological, physical, financial, neglect and sexual abuse. The common attributes of residents vulnerable to abuse were evident throughout each of the studies. Finally, the theme of organizational neglect was apparent through the absence of effective safeguarding measures in the included studies. The findings revealed the insufficient implementation of safeguarding measures increases the risk of abuse among residents.
This scoping review highlights the limited research on the experiences of older people who have encountered elder abuse in residential care settings. The findings stress the need for further research exploring the complex interplay of factors contributing to elder abuse within aged care settings. The insights gained from this scoping review can inform the development of comprehensive safeguarding strategies to prevent and address elder abuse in residential care settings, promoting the well-being and safety of older people.
This project is a scoping review of the literature; therefore, no patient or public contribution was deemed necessary.
Most research on elder abuse has been conducted in the community rather than in Residential Care Settings where there is a limited understanding of older people’s experiences of abuse within the published literature. The scoping review highlights the presence of inadequate safeguarding strategies in Residential Care Settings within the reviewed studies, providing recommendations for developing and improving safeguarding measures in Residential Care Settings to prevent abuse, neglect, and harm in the future.
Dying well at home usually requires the help and assistance of an informal caregiver. This role is usually unpaid, wide-ranging and oftentimes demanding. From diagnosis to death of a loved one, informal caregivers can experience one and frequently numerous transitions, however, little is known about this process. The purpose of this scoping review is to chart, explore and understand caregivers' experiences of transitioning when providing end-of-life care. A preliminary search of the literature indicated a paucity of research highlighting a notable absence of caregiver's perspectives and acknowledgements of the support they need to ensure successful transitions during this time. Consequently, this review has the potential to make a valuable contribution to the literature.
Arksey and O'Malley's (2005) framework, further enhanced by Levac et al. (2010) and Peters et al. (2020) was used to conduct this scoping review. The Extension for Scoping Reviews (PRISMA-ScR) guided reporting. A systematic search of the databases PUBMED, PsychINFO, CINAHL, EMBASE, and Web of Science and a selection of grey literature was undertaken from the year 1990 to date by two researchers. Titles and abstracts of the literature identified were screened and finally, a narrative synthesis of 11 articles was undertaken to answer the following research question: What is known from the literature about informal caregivers' transitions when caring for a dying person in the home?
Current knowledge on this topic is limited; however, from this review, two main themes were identified: ‘Challenges arising during transitioning’ with subthemes of burden of care and fading away. The second theme ‘Coping strategies’ comprised subthemes of meaning-making, seeking normality and hope. This evidence may support the development of transitional care interventions in the future and improve patient and caregiver outcome measures and experiences to inform a larger research study exploring this phenomenon.
N/A as this is a Scoping Review.
An understanding of the experiences of transitioning when caring for a loved one dying at home could help mitigate challenges informal caregivers face when providing end-of-life care in the home. While informal caregivers are crucial to support people who want to die at home, the role is often invisible and family carers need support and recognition to reduce the burden of care and challenges they experience as they transition in their role.
FreshRSS 