A Severe Dementia Case in End of Life Care with Psychiatric Symptoms Treated by Perampanel.
Ontology highlight
ABSTRACT:
SUBMITTER: Kumamoto A
PROVIDER: S-EPMC8357559 | biostudies-literature |
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundIncreasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care.AimsTo describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia.Design9-month prospective cohort study.Setting and participantsGreater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes.Main outcome measuresAt study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale).ResultsOf 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had 'do not resuscitate' statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common.ConclusionPeople with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.
| S-EPMC5987852 | biostudies-literature
Project description:OBJECTIVE:The pathology of frontotemporal dementia, termed frontotemporal lobar degeneration (FTLD), is characterized by distinct molecular classes of aggregated proteins, the most common being TAR DNA-binding protein-43 (TDP-43), tau, and fused in sarcoma (FUS). With a few exceptions, it is currently not possible to predict the underlying pathology based on the clinical syndrome. In this study, we set out to investigate the relationship between pathological and clinical presentation at single symptom level, including neuropsychiatric features. METHODS:The presence or absence of symptoms from the current clinical guidelines, together with neuropsychiatric features, such as hallucinations and delusions, were scored and compared across pathological groups in a cohort of 150 brain donors. RESULTS:Our cohort consisted of 68.6% FTLD donors (35.3% TDP-43, 28% tau, and 5.3% FUS) and 31.3% non-FTLD donors with a clinical diagnosis of frontotemporal dementia and a different pathological substrate, such as Alzheimer's disease (23%). The presence of hyperorality points to FTLD rather than non-FTLD pathology (p < 0.001). Within the FTLD group, hallucinations in the initial years of the disease were related to TDP-43 pathology (p = 0.02), including but not limited to chromosome 9 open reading frame 72 (C9orf72) repeat expansion carriers. The presence of perseverative or compulsive behavior was more common in the TDP-B and TDP-C histotypes (p = 0.002). INTERPRETATION:Our findings indicate that neuropsychiatric features are common in FTLD and form an important indicator of underlying pathology. In order to allow better inclusion of patients in targeted molecular trials, the routine evaluation of patients with frontotemporal dementia should include the presence and nature of neuropsychiatric symptoms. ANN NEUROL 2020;87:950-961.
| S-EPMC7318614 | biostudies-literature
Project description:BACKGROUND AND OBJECTIVES:Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care. RESEARCH DESIGN:Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as "structured observations") of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017. METHODS:Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate. RESULTS:We identified two main 'ideal types' of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person's "moral judgement", making them prone to rejecting or punitive responses. In the second staff adopt a more "needs-based" approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values. CONCLUSIONS:Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected.
| S-EPMC6808497 | biostudies-literature
Project description:Little is known on the end-of-life (EOL) care of terminal breast cancer in women with severe psychiatric disorder (SPD). The objective was to determine if women with SPD and terminal breast cancer received the same palliative and high-intensity care during their end-of-life than women without SPD. Study design, setting, participants. This population-based cohort study included all women aged 15 and older who died from breast cancer in hospitals in France (2014-2018). Key measurements/outcomes. Indicators of palliative care and high-intensity EOL care. Multivariable models were performed, adjusted for age at death, year of death, social deprivation, duration between cancer diagnosis and death, metastases, comorbidity, smoking addiction and hospital category. The analysis included 1742 women with SPD (287 with bipolar disorder, 1075 with major depression and 380 with schizophrenia) and 36,870 women without SPD. In multivariate analyses, women with SPD had more palliative care (adjusted odd ratio aOR 1.320, 95%CI [1.153-1.511], p < 0.001), longer palliative care follow-up before death (adjusted beta = 1.456, 95%CI (1.357-1.555), p < 0.001), less chemotherapy, surgery, imaging/endoscopy, and admission in emergency department and intensive care unit. Among women with SPD, women with bipolar disorders and schizophrenia died 5 years younger than those with recurrent major depression. The survival time was also shortened in women with schizophrenia. Despite more palliative care and less high-intensity care in women with SPD, our findings also suggest the existence of health disparities in women with bipolar disorders and schizophrenia compared to women with recurrent major depression and without SPD. Targeted interventions may be needed for women with bipolar disorders and schizophrenia to prevent these health disparities.
| S-EPMC8119688 | biostudies-literature
Project description:ObjectivesA dementia nurse specialist (DNS) is expected to improve the quality of care and support to people with dementia nearing, and at, the end of life (EoL) by facilitating some key features of care. The aim of this study was to estimate willingness-to-pay (WTP) values from the general public perspective, for the different levels of support that the DNS can provide.MethodsContingent valuation methods were used to elicit the maximum WTP for scenarios describing different types of support provided by the DNS for EoL care in dementia. In a general population online survey, 1002 participants aged 18?years or more sampled from the United Kingdom provided valuations. Five scenarios were valued with mean WTP value calculated for each scenario along with the relationship between mean WTP and participant characteristics.ResultsThe mean WTP varied across scenarios with higher values for the scenarios offering more features. Participants with some experience of dementia were willing to pay more compared with those with no experience. WTP values were higher for high-income groups compared with the lowest income level (P?<?.05). There was no evidence to suggest that respondent characteristics such as age, gender, family size, health utility or education status influenced the WTP values.ConclusionThe general population values the anticipated improvement in dementia care provided by a DNS. This study will help inform judgements on interventions to improve the quality of EoL care.
| S-EPMC7187265 | biostudies-literature
Project description:BackgroundA diagnosis of dementia in middle-aged and elder people is often complicated by physical frailty and comorbid neuropsychiatric symptoms (NPSs). Previous studies have identified NPSs as a risk factor for dementia. The aim of this study was to figure out to what extent individual NPS and certain demographic factors increased the risk of dementia in middle-aged and senior psychiatric inpatients.MethodsOne hundred twenty-seven middle-aged and senior patients admitted to psychiatric wards for late-onset (age ≥ 50 years) psychiatric symptoms were included and categorized into dementia or non-demented psychiatric disorders (NDPD). The patients' demographic information and medical records were collected during the first hospitalization and subjected to statistical analyses.Results41.73% of the registered psychiatric inpatients were diagnosed as dementia in which Alzheimer's disease (AD) was the dominant subtype. The NDPD group consisted of nine individual diagnoses, except for schizophrenia. The frequencies of dementia inpatients increased with first episode age while that of NDPD inpatients decreased with first episode age. In the enrolled inpatients, most of dementia patients were males while females accounted for a higher proportion of NDPD patients. 58.49% of enrolled dementia inpatients presented cognitive deficit (CD) as the initial symptom while the remaining 41.51% showed NPS as initial symptom. Of the 12 NPSs, agitation and apathy greatly and significantly increased risk of dementia in psychiatric inpatients with late-onset psychiatric symptoms.ConclusionsThese results added evidence that the demented patients admitted to psychiatric ward are more likely to be male, older first episode age, and have characteristic NPS including aberrant motor behavior (AMB), hallucinations, agitation, irritability and apathy. Further, this study emphasized the importance of agitation and apathy of NPSs functioning as risk factors of dementia in these inpatients.
| S-EPMC8080316 | biostudies-literature
Project description:People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia.This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia.Qualitative study using in-depth interviews and analysed using thematic analysis.Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family caregivers.Three over-arching themes were derived from the interviewees' discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness.End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.
| S-EPMC5625846 | biostudies-other
Project description:IntroductionPeople living with dementia in care homes can benefit from palliative approaches to care; however, not all will require specialist palliative care. The generalist aged care workforce is well placed to provide most of this care with adequate training and support systems in place, but little is known about their experiences.ObjectiveTo describe staff perspectives on providing quality end-of-life care for people living with dementia in residential care and their families.MethodsFocus groups and semi-structured interviews were conducted with residential aged care managerial and frontline staff in Australia who were caring for residents living with dementia and end-of life needs. A comprehensive, then snowballing sampling strategy was used in participating care homes. Transcripts were analyzed using reflexive thematic analysis.ResultsFifteen semi-structured interviews and six focus groups were undertaken with 56 participants across 14 sites across two Australian states. Five themes were identified: putting the resident at the center (creating homes not hospitals, knowing the individual, a case management approach); articulating goals to grant wishes (initiating the conversation, broadening death literacy, avoiding hospitalization); a collective call to action (staffing the home, recognizing deterioration and escalating issues, communication channels and engaging GPs, managing medications, psychosocial supports); educating to empower staff (governance and guidance, mentoring juniors, self-care); and facilitating family acceptance (setting expectations, partnering in care, access at all hours).DiscussionAged care staff are committed to providing person-centered palliative and end-of-life care for people living with dementia, recognizing the intrinsic value of each resident, regardless of their declining state. Frontline and managerial staff consider advance care planning, collectively working as part of a multidisciplinary team, access to targeted palliative and end-of-life education and training, and engaging families as key priorities to providing high quality care in care homes.
| S-EPMC10166813 | biostudies-literature
Project description:Objectives(1) To develop an understanding of how social capital may be conceptualised within the context of end-of-life care and how it can influence outcomes for people with dementia and their families with specific reference to the context and mechanisms that explain observed outcomes. (2) To produce guidance for healthcare systems and researchers to better structure and design a public health approach to end-of-life care for people with dementia.DesignA realist review.Data sourcesMEDLINE, EMBASE, CINAHL and grey literature.AnalysisWe conceptualised social capital as a complex intervention and, in order to understand how change is generated, used realist evaluation methods to create different configurations of context, mechanism and outcomes. We conducted an iterative search focusing on social capital, social networks and end-of-life care in dementia. All study designs and outcomes were screened and analysed to elicit explanations for a range of outcomes identified. Explanations were consolidated into an overarching programme theory that drew on substantive theory from the social sciences and a public health approach to palliative care.ResultsWe identified 118 articles from 16 countries ranging from 1992 to 2018. A total of 40 context-mechanism-outcome configurations help explain how social capital may influence end-of-life care for people with dementia. Such influence was identified within five key areas. These included: (1) socially orientating a person with dementia following diagnosis; (2) transitions in the physical environment of care; (3) how the caregiving experience is viewed by those directly involved with it; (4) transition of a person with dementia into the fourth age; (5) the decision making processes underpinning such processes.ConclusionThis review contributes to the dispassionate understanding of how complex systems such as community and social capital might be viewed as a tool to improve end-of-life care for people with dementia.Prospero registration numberCRD42018084524.
| S-EPMC6924787 | biostudies-literature
Project description:BackgroundPsychological distress is a major concern for patients with end-stage heart failure (HF). However, psychiatric care for patients with HF is not as organized as that for patients with cancer. Therefore, the aim of this study was to elucidate and compare the barriers faced by health care providers of cardiology and oncology hospitals in providing end-of-life psychiatric care to patients with HF and cancer, respectively.MethodsWe conducted a cross-sectional questionnaire survey among the health care providers of Japan. Questionnaires were mailed to physicians and nurses of 427 cardiology and 347 oncology hospitals in March 2018 to assess health care providers' perspectives. First, we compared the scores of the Palliative Care Difficulties Scale and the original scale of end-of-life psychiatric care difficulties between health care providers of cardiology and oncology hospitals. Second, we asked the health care providers to describe the barriers to providing end-of-life psychiatric care with an open-ended question and then compared the freely-provided descriptions using content analysis.ResultsA total of 213 cardiology and 224 oncology health care providers responded to the questionnaire. No significant differences were found between health care providers of cardiology and oncology hospitals in the frequency of experiencing barriers to providing end-of-life psychiatric care (59.8% and 62.2%, respectively). A content analysis identified the following eight barriers: "patients' personal problems," "family members' problems," "professionals' personal problems," "communication problems between professionals and patients," "problems specific to end-of-life care," "problems specific to psychiatric care," "problems of institution or system," and "problems specific to non-cancer patients." The "problems specific to noncancer patients" was described more frequently by health care providers in cardiology hospitals than that in oncology hospitals. However, there were no significant differences in other items between the two.ConclusionAlthough health care providers of both cardiology and oncology hospitals faced barriers to providing end-of-life psychiatric care, those of cardiology hospitals particularly faced challenges pertaining to non-cancer patients, such as unpredictability of prognosis or insufficiency of guideline development. A system of psychiatric care, specifically for patients with HF, should be established.
| S-EPMC10014396 | biostudies-literature