Distress in dementia care

BACKGROUND: Delirium is frightening for people experiencing it and their carers, and it is the most common hospital-acquired complication worldwide. Delirium is associated with higher rates of morbidity, mortality, residential care home admission, dementia, and carer stress and burden, yet strategies to embed the prevention and management of delirium as part of standard hospital care remain challenging. Carers are well placed to recognize subtle changes indicative of delirium, and partner with nurses in the prevention and management of delirium...

BACKGROUND: Healthcare providers may experience moral distress when they are unable to take the ethically or morally appropriate action due to real or perceived constraints in delivering care, and this psychological stressor can negatively impact their mental health, leading to burnout and compassion fatigue. This study describes healthcare providers experiences of moral distress working in long-term care settings during the COVID-19 pandemic and measures self-reported levels of moral distress pre- and post-implementation of the Dementia Isolation Toolkit (DIT), a person-centred care intervention designed for use by healthcare providers to alleviate moral distress...

BACKGROUND: Understanding experiences and challenges faced by persons living with Early-Onset Dementia (EOD) compared to individuals diagnosed with Late-Onset Dementia (LOD) is important for the development of targeted interventions. OBJECTIVE: Describe differences in sociodemographic, neuropsychiatric behavioral symptoms, caregiver characteristics, and psychotropic use. DESIGN, SETTING, PARTICIPANTS: Cross-sectional, retrospective study including 908 UCLA Alzheimer's Dementia Care Program participants (177 with EOD and 731 with LOD)...

BACKGROUND: Dementia is often associated with Neuropsychiatric Symptoms (NPS) such as agitation, depression, hallucinations, anxiety, that can cause distress for the resident with dementia in long-term care settings and can impose emotional burden on the environment. NPS are often treated with psychotropic drugs, which, however, frequently cause side effects. Alternatively, non-pharmacological interventions can improve well-being and maintain an optimal quality of life (QoL) of those living with dementia...

AIM: To explore home-dwelling people with dementia and family members' perceptions of the feasibility and acceptability of an intervention using dementia-related literature excerpts to facilitate conversations on ethical issues related to living with dementia. BACKGROUND: Ethical issues in dementia care emerge throughout the illness. In the early stages, they may involve decisions about disclosing the illness to the family, shifting roles and responsibilities, and considerations of transitioning to a nursing home...

BACKGROUND: Discomfort and distressing symptoms are common at the end of life, while people in this stage are often no longer able to express themselves. Technologies may aid clinicians in detecting and treating these symptoms to improve end-of-life care. This review provides an overview of noninvasive monitoring technologies that may be applied to persons with limited communication at the end of life to identify discomfort. METHODS: A systematic search was performed in nine databases, and experts were consulted...

The behavioral and psychological symptoms of dementia (BPSD) can be challenging for family caregivers to cope with, leading to distress and fatigue. It is therefore important to offer effective strategies to reduce the impact of BPSD. The HOMESIDE randomized controlled trial (RCT) was testing purposefully developed interventions to improve the quality of life and wellbeing of dyads of people with dementia and family caregivers as a result of reduction of BPSD. HOMESIDE RCT was conducted in Australia, Germany, Norway, Poland and the United Kingdom between 2019 and 2022...

BACKGROUND AND OBJECTIVES: Persons with dementia and their care partners have known risks for loneliness and social isolation throughout the disease trajectory, yet little is described about social lives in a population heterogeneous for disease stage, syndrome type, and setting. RESEARCH DESIGN AND METHODS: We conducted a secondary analysis of qualitative interviews from multiple studies to triangulate responses from a cohort of persons with dementia (n = 24), and active (n = 33) or bereaved (n = 15) care partners diverse in setting, dementia type and stage, and life experience...

OBJECTIVES: Research has extensively examined spousal caregiving in Alzheimer's disease (AD), but it remains unclear how people with AD help spousal caregivers. We aimed to describe emotional and practical support that people with AD and their spouses provide to each other and test the role their empathy plays in these support experiences. METHODS: Seventy-two people with early-stage AD and their spousal caregivers independently reported empathy (personal distress, empathic concern, perspective taking) and the frequency and appraisal of support provision...

OBJECTIVE: For nursing home residents with severe dementia, high-intensity medical treatment offers little possibility of benefit but has the potential to cause significant distress. Nevertheless, mechanical ventilation and intensive care unit (ICU) transfers have increased in this population. We sought to understand how and why such care is occurring. DESIGN: Mixed methods study, with retrospective collection of qualitative and quantitative data. SETTING: Department of Veterans Affairs (VA) hospitals...

INTRODUCTION: The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables...

As the population grows, the incidence of dementia will increase. A common occurrence in people with dementia is behavioral and psychological symptoms of dementia (BPSD). BPSD can include apathy, aggression, resistance to care, and agitation. BPSD can start or worsen during an acute hospitalization, but these units are not well-equipped to handle BPSD, often relying on pharmacological interventions to address distress behaviors. One known behavioral intervention for BPSD is STAR-VA, an interdisciplinary approach to managing these behaviors...

BACKGROUND: Socially assistive robots offer an alternate source of connection for interventions within health and social care amidst a landscape of technological advancement and reduced staff capacity. There is a need to summarise the available systematic reviews on the health and wellbeing impacts to evaluate effectiveness, explore potential moderators and mediators, and identify recommendations for future research and practice. OBJECTIVE: To explore the effect of socially assistive robots within health and social care on psychosocial, behavioural, and physiological health and wellbeing outcomes across the lifespan (PROSPERO registration number: CRD42023423862)...

INTRODUCTION: Frontotemporal dementia (FTD) encompasses a clinically and pathologically diverse group of neurodegenerative disorders, yet little work has quantified the unique phenotypic clinical presentations of FTD among post-9/11 era veterans. To identify phenotypes of FTD using natural language processing (NLP) aided medical chart reviews of post-9/11 era U.S. military Veterans diagnosed with FTD in Veterans Health Administration care. METHODS: A medical record chart review of clinician/provider notes was conducted using a Natural Language Processing (NLP) tool, which extracted features related to cognitive dysfunction...

Despite the growing number of Korean American (KA) family caregivers for persons with dementia, little is known about how acculturation might affect caregiving stress in this population. Acculturation is a variable of considerable interest in caregiving research due to its significance in understanding the impact of cultural perceptions and expectations on the caregiving role and its relation to mental health outcomes. A cross-sectional descriptive study using baseline data from an ongoing randomized controlled trial of dementia caregiver intervention was performed to examine the association between acculturation and mental health outcomes among KA caregivers ( n  = 32) for persons with dementia...

INTRODUCTION: Assistive technology is increasingly used to support the physical needs of differently abled persons but has yet to make inroads on support for cognitive or psychological issues. This gap is an opportunity to address another-the lack of contribution from theoretical social science that can provide insights into problems that cannot be seen. Using Affect Control Theory (ACT), the current project seeks to close that gap with an artificially intelligent application to improve interaction and affect for people with Alzheimer's Disease and Related Dementias (ADRD)...

BACKGROUND: Family caregivers of older adults with severe dementia have negative and positive experiences over the course of caregiving. We aimed to delineate joint trajectories (patterns over time) for negative and positive experiences, identify risk factors associated with membership of joint trajectories, and ascertain the association between joint trajectories and caregivers' outcomes after the death of the older adult. METHODS: Two hundred fifteen family caregivers of older adults with severe dementia in Singapore were surveyed every 4 months for 2 years, and 6 months after the death of the older adult...

INTRODUCTION: We aimed to evaluate informal caregivers' attitudes toward undergoing and future implementation of blood-based biomarkers (BBBM) testing for Alzheimer's disease (AD). METHODS: We explored caregivers' perspectives, by combining an online survey ( n  = 107) with a subsequent focus group ( n  = 7). We used descriptive statistics and thematic content analysis to identify common themes in answers to open-ended survey questions and focus group data...

OBJECTIVES: The Individualized Positive Psychosocial Interaction (IPPI) is a non-pharmacological, person-centered, intervention for nursing home (NH) residents living with moderate to severe dementia. The purpose of this study was to assess the pragmatic implementation of the IPPI by leveraging Ohio's Nursing Home Quality Improvement Program (QIP). METHODS: Implementation teams collected resident mood ratings pre- and post-IPPI and completed virtual interviews to assess their Organizational Readiness for Implementing Change as well as the acceptability, feasibility, and appropriateness of the IPPI...

BACKGROUND: People with dementia are routinely included as research participants in trials and other quantitative studies in which they are invited to respond to standardised measures. This paper reviews the reporting of standardised data collection from people with dementia in reports published in the National Institute for Health and Care Research (NIHR) Journals Library. The aim was to understand how the administration of standardised, self-report measures with people with dementia is reported in NIHR monographs and what could be learnt from this about the feasibility and acceptability of data collection approaches for future studies...