Humans: An integrative review exploring dehumanisation in advanced dementia

When patients with advanced dementia lose capacity to make medical decisions for themselves, a 'best interests' determination is usually made on their behalf by the responsible clinician. Where possible, this should be made in consultation with members of the multiprofessional team and the family, consistent with ethical and legal norms. This paper is about multidisciplinary approaches to education and practice in dementia care, using a framework. At a UK multiprofessional workshop in 2020, delegates discussed ethical and legal issues that arise when making decisions for patients with advanced dementia. After an initial presentation, providing context and background, delegates broke into small groups. They were tasked with responding to questions arising from anonymised cases based on real-life scenarios. During plenary discussion afterwards, feedback was shared, and points of best practice were discussed. The authors took notes, and following positive evaluations after the event, they did further work on the framework with the intention of making it available for other health care professionals and clinical educators. Based on contemporaneous notes summarising the feedback, plus further reflections, the framework was developed into a 12-point plan to assist health care teams and educators address difficulties in making 'best interests' determinations. Promoting understanding of ethics and law pertaining to 'best interests' should benefit patients and families, with the potential to reduce the need for cases to be decided in court. To help promote good clinical practice, educators may want to consider running case-based workshops at their institution, using the framework as a scaffold for learners.

Even though palliative care of dementia and care at home are key NHS priorities, services that set out specifically to support palliative care of dementia at home are virtually non-existent. We studied a novel service that has supported many people with advanced dementia at home through till death. Key factors for success include the right equipment, expertise around relevant medication, food, and social care needs, as well as understanding and support for funding care commissioning and informal care. The study revealed blockages to accessing support as a result of poor understanding of the needs of advanced dementia care as well as organizational prejudice. We demonstrate that good, home based palliative care of dementia can be achieved with very positive outcomes. Bereavement may be helped by the process of caring at home till death. Given that the Audit Commission has cited home care of advanced dementia as good value for money, it is of grave concern that services to support people with advanced dementia at home are not available.

Truth that Matters

The rising prevalence of dementia is impacting on acute hospitals and placing increased expectations on health and social care professionals to improve the support and services they are delivering. It has been recommended that good practice in dementia care relies on adopting a palliative approach to care and meeting people's physical, psychological, social and spiritual needs. Increased dementia training for staff that includes initiatives that promote dignity; enhancing communication skills and recognizing that a person with dementia may be approaching the end of their lives are needed. Our study aim was to explore whether Namaste Care is an acceptable and effective service for people with advanced dementia being cared for on an acute hospital ward. This was an exploratory qualitative interview, pilot study. Individual, semi-structured, face-to-face interviews were conducted with hospital healthcare staff working in an area of the hospital where Namaste Care had been implemented. Data were analysed using the framework approach. Eight interviews were completed with members of the multidisciplinary ward team. Two themes were identified: (I) difficulties establishing relationships with people with dementia in hospital (subthemes: lack of time and resources, lack of confidence leading to fear and anxiety); (II) the benefits of a Namaste Care service in an acute hospital setting (subthemes: a reduction in agitated behavior; connecting and communicating with patients with dementia using the senses; a way of showing people with dementia they are cared for and valued). This small-scale study indicates that Namaste Case has the potential to improve the quality of life of people with advanced dementia being cared for in an acute hospital setting. However, further research is required to explore more specifically its benefits in terms of improved symptom management and wellbeing of people with dementia on acute hospitals wards.

Providing quality end-of-life care to individuals with advanced dementia is crucial. To date, little attention has been paid to palliative care knowledge and attitudes toward palliative care for people with advanced dementia in Spain. To investigate the knowledge of and attitudes toward palliative care for advanced dementia among registered nurses and physicians in Spain. A descriptive, cross-sectional survey design was used. This study included a convenience sample of 402 nurses (n = 290) and physicians (n = 112). Two instruments were administered: demographic characteristics and Spanish version of the Questionnaire of Palliative Care for Advanced Dementia (qPAD-SV). Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and physicians had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Physicians had a higher level of knowledge (p < 0.05) compared to nurses. Additionally, physicians and nursing staff who had professional experience/ education in geriatrics and those who had received palliative care and hospice training had greater (p < 0.01) knowledge of palliative care. In addition, healthcare professionals who had received dementia care training and who had worked in nursing homes had higher levels (p < 0.05) of knowledge and attitudes toward palliative care. This study indicates the need to provide nurses and physicians with more education for select groups of professionals who have had limited education and experience in caring for older adults with advanced dementia.

Objective Although pain is one of the most common symptoms experienced by people with dementiain long-term care, there have been few studies on the actionable knowledge of painassessment and management in dementia care from a multidisciplinary perspective. Thisstudy aimed to identify practical tips for pain management of patients with advanceddementia using a multidisciplinary approach.Patients and Methods Individual in-depth interviews were conducted between January and March 2022 with 24healthcare professionals who had ample experience in primary palliative care fordementia. The qualitative data were analyzed using a qualitative content analysis.Results Three main themes and nine subthemes capturing advice in pain assessment andmanagement for advanced dementia were identified: patient assessment (early detection,multidisciplinary comprehensive assessment, drowsiness and inactivity, diagnostictherapy), assessment of family understanding of pain in dementia (willingness to acceptguidance from experts, understanding and acceptance of dementia), and intervention(distraction, resistance and nonadherence to care, care-related pain).Conclusion These findings identified dementia-specific practical advice for pain management.First, multidisciplinary teams are required to better understand slight behavioralchanges of people with advanced dementia. Second, they must be equipped with thenecessary knowledge to differentiate symptoms of advanced dementia from those of otherconditions. Third, pain medicine administration, along with a diagnostic procedure, isrecommended. Fourth, distraction from chronic pain, reduced resistance and nonadherenceto care were offered as pain management strategies for advanced dementia. Finally,family members must be educated about pain in those with advanced dementia because painmanagement was the most identified burden faced by family caregivers.

Dementia is one of the leading causes of death in the US. Approximately, 6 million elderly people in the US had dementia in 2020. Advanced dementia is complicated by multiple problems that can lead to distress in both the patient and their caregivers. With the increase in aging population, physicians will be expected to take care of patients with dementia. Palliative and hospice care can play an important part in helping to alleviate physical symptoms as well as address non-medical/spiritual needs. In this review article, we highlight the patient-centered approach to treat symptoms and patient's needs to improve their quality of life. We discuss the most important and persistent challenges in advanced dementia with the aim to provide excellent care at the end-of-life and caregiver experience. Data were identified by using PubMed, EBSCO, and Google Scholar databases (January 1980 to present) using the following search terms: dementia, palliative care, advanced dementia, and hospice care. The search was repeated using geriatrics, end-of-life, decision making, advanced care, capacity evaluation, nutrition, infections, pain management, dyspnea, delirium, de-prescribing, and spiritual care. Additional review of literature was undertaken using relevant references of identified articles. There are many missed opportunities to improve care in this vulnerable patient population that when addressed can lead to peaceful and dignified death.

Mechanical ventilation may be lifesaving, but in certain persons, such as those with advanced dementia, it may prolong patient suffering without a clear survival benefit. To describe the use and outcomes of mechanical ventilation and its association with the increasing numbers of intensive care unit (ICU) beds in the United States for patients with advanced dementia residing in a nursing home 120 days before that hospital admission. This retrospective cohort study evaluated Medicare beneficiaries with advanced dementia hospitalized from January 1, 2000, to December 31, 2013, using the Minimum Data Set assessments linked with Medicare part A claims. A hospital fixed-effect, multivariable logistic regression model examined the effect of changes in ICU beds within individual hospitals and the likelihood of receiving mechanical ventilation, controlling for patients' demographic characteristics, function, and comorbidities. Mechanical ventilation. From 2000 to 2013, a total of 635 008 hospitalizations of 380 060 eligible patients occurred (30.5% male and 69.5% female; mean [SD] age, 84.4 [7.4] years). Use of mechanical ventilation increased from 39 per 1000 hospitalizations in 2000 to 78 per 1000 hospitalizations in 2013 (P < .001, test of linear trend). As the number of ICU beds in a hospital increased over time, patients with advanced dementia were more likely to receive mechanical ventilation (ie, adjusted odds ratio per 10 ICU bed increase, 1.06; 95% CI, 1.05-1.07). In 2013, hospitals in the top decile in the number of ICU beds were reimbursed $9611.89 per hospitalization compared with $8050.24 per hospitalization in the lower decile (P < .001) without an improvement in 1-year mortality (65.2% vs 64.6%; P = 54). Among hospitalized nursing home residents with advanced dementia, we found an increase in the use of mechanical ventilation over time without substantial improvement in survival. This increase in the use of mechanical ventilation was associated with an increase in the number of ICU beds within a hospital.

Qualitative methodology based on action research identified challenges when caring for persons with advanced dementia, as perceived by key professional providers. Data collection was via five focus groups (total n = 24) and 20 follow-up individual interviews. Participants included palliative care, aged care and dementia specialist nurses, medical specialists from an area health service, residential aged care staff and general medical practitioners. Responses emphasized the need for improved knowledge and skills, and clearer policy. Concerns included accurate assessment, especially of pain, owing to the inability of people with advanced dementia to communicate their symptoms. Assessment, managing physical and behavioural symptoms, and communicating with family presented as further challenges. Conclusions are that the need for a palliative approach to care in advanced dementia should be recognized. Aged care staff can deliver palliative care to people with advanced dementia only if the staff receive relevant education and training beyond their generalist competencies.

Dementia is a chronic, progressive and ultimately fatal neurodegenerative disease. Advanced dementia is characterised by profound cognitive impairment, inability to communicate verbally and complete functional dependence. Usual care of people with advanced dementia is not underpinned universally by a palliative approach. Palliative care has focused traditionally on care of people with cancer but for more than a decade, there have been increased calls worldwide to extend palliative care services to include all people with life-limiting illnesses in need of specialist care, including people with dementia. To assess the effect of palliative care interventions in advanced dementia and to report on the range of outcome measures used. We searched ALOIS, the Cochrane Dementia and Cognitive Improvement Group's Specialized Register on 4 February 2016. ALOIS contains records of clinical trials identified from monthly searches of several major healthcare databases, trial registries and grey literature sources. We ran additional searches across MEDLINE (OvidSP), Embase (OvidSP), PsycINFO (OvidSP), CINAHL (EBSCOhost), LILACS (BIREME), Web of Science Core Collection (ISI Web of Science), ClinicalTrials.gov and the World Health Organization ICTRP trial portal to ensure that the searches were as comprehensive and as up-to-date as possible. We searched for randomised (RCT) and non-randomised controlled trials (nRCT), controlled before-and-after studies (CBA) and interrupted time series studies evaluating the impact of palliative care interventions for adults with dementia of any type, staged as advanced dementia by a recognised and validated tool. Participants could be people with advanced dementia, their family members, clinicians or paid care staff. We included clinical interventions and non-clinical interventions. Comparators were usual care or another palliative care intervention. We did not exclude studies on the basis of outcomes measured and recorded all outcomes measured in included studies. Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods. We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on surrogate decision-makers of nursing home residents with advanced dementia. Data for 90 participants (35% of the original study) met the definition of advanced dementia for this review and were re-analysed for the purposes of the review. In this subset, intervention surrogates had lower scores for decisional conflict measured on the Decisional Conflict Scale (mean difference -0.30, 95% CI -0.61 to 0.01, reduction of 0.3 to 0.4 units considered meaningful) and were more likely than participants in the control group to discuss feeding options with a clinician (RR 1.57, 95% CI 0.93 to 2.64), but imprecision meant that there was significant uncertainty about both results. Very little high quality work has been completed exploring palliative care interventions in advanced dementia. There were only two included studies in this review, with variation in the interventions and in the settings that made it impossible to conduct a meta-analysis of data for any outcome. Thus, we conclude that there is insufficient evidence to assess the effect of palliative care interventions in advanced dementia. The fact that there are six ongoing studies at the time of this review indicates an increased interest in this area by researchers, which is welcome and needed.

To examine socially, culturally and politically constructed factors affecting family caregiver practice in dementia care, and to identify possible changes in a country with undeveloped dementia services. In China and many other low- and middle-income countries, social transformations are weakening the family care model, which has an impact on the population with dementia. Exploring the challenges that caregivers face may help the international healthcare community to improve dementia services. A double hermeneutic approach informed by Giddens' Structuration Theory was used. In-depth semi-structured interviews with 23 family caregivers of people with dementia were conducted in 2012. The interviews were audiotaped, transcribed and analysed. Analyses revealed three consequences of socially constructed factors in dementia care, which constrained caregiver practice. First, caregivers were unable to manage behavioural and psychological symptoms of dementia. Untreated aggressive behaviours caused harm to the person with dementia and endangered the caregiver and the public. Second, the burden on the primary caregiver was evident and caregivers received limited support. Third, there was little coordination between primary and specialist care services for people with dementia. On critical reflection of potential changes that could improve dementia services, caregivers suggested that community nurses have a leading role in coordinating dementia services and supporting caregivers. Relying on family caregivers to care for people with dementia without the prevision of dementia services by the public healthcare system generates negative health outcomes for both care recipients and caregivers. The nursing workforce should be developed to support dementia services.

The effectiveness of different approaches to dementia care is unknown. To determine the effectiveness of health system-based, community-based dementia care, and usual care for persons with dementia and for caregiver outcomes. Randomized clinical trial of community-dwelling persons living with dementia and their caregivers conducted at 4 sites in the US (enrollment June 2019-January 2023; final follow-up, August 2023). Participants were randomized 7:7:1 to health system-based care provided by an advanced practice dementia care specialist (n = 1016); community-based care provided by a social worker, nurse, or licensed therapist care consultant (n = 1016); or usual care (n = 144). Primary outcomes were caregiver-reported Neuropsychiatric Inventory Questionnaire (NPI-Q) severity score for persons living with dementia (range, 0-36; higher scores, greater behavioral symptoms severity; minimal clinically important difference [MCID], 2.8-3.2) and Modified Caregiver Strain Index for caregivers (range, 0-26; higher scores, greater strain; MCID, 1.5-2.3). Three secondary outcomes included caregiver self-efficacy (range, 4-20; higher scores, more self-efficacy). Among 2176 dyads (individuals with dementia, mean age, 80.6 years; 58.4%, female; and 20.6%, Black or Hispanic; caregivers, mean age, 65.2 years; 75.8%, female; and 20.8% Black or Hispanic), primary outcomes were assessed for more than 99% of participants, and 1343 participants (62% of those enrolled and 91% still alive and had not withdrawn) completed the study through 18 months. No significant differences existed between the 2 treatments or between treatments vs usual care for the primary outcomes. Overall, the least squares means (LSMs) for NPI-Q scores were 9.8 for health system, 9.5 for community-based, and 10.1 for usual care. The difference between health system vs community-based care was 0.30 (97.5% CI, -0.18 to 0.78); health system vs usual care, -0.33 (97.5% CI, -1.32 to 0.67); and community-based vs usual care, -0.62 (97.5% CI, -1.61 to 0.37). The LSMs for the Modified Caregiver Strain Index were 10.7 for health system, 10.5 for community-based, and 10.6 for usual care. The difference between health system vs community-based care was 0.25 (97.5% CI, -0.16 to 0.66); health system vs usual care, 0.14 (97.5% CI, -0.70 to 0.99); and community-based vs usual care, -0.10 (97.5% CI, -0.94 to 0.74). Only the secondary outcome of caregiver self-efficacy was significantly higher for both treatments vs usual care but not between treatments: LSMs were 15.1 for health system, 15.2 for community-based, and 14.4 for usual care. The difference between health system vs community-based care was -0.16 (95% CI, -0.37 to 0.06); health system vs usual care, 0.70 (95% CI, 0.26-1.14); and community-based vs usual care, 0.85 (95% CI, 0.42 to 1.29). In this randomized trial of dementia care programs, no significant differences existed between health system-based and community-based care interventions nor between either active intervention or usual care regarding patient behavioral symptoms and caregiver strain. ClinicalTrials.gov Identifier: NCT03786471.

A Palliative Approach to Falls in Advanced Dementia

BackgroundPatient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries.Research Design and ObjectiveAn interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention.FindingsThirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI.Discussion and ImplicationsInternational projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources.Patient or Public ContributionPPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript.

BackgroundAn individual's life history and past trauma may have implications for their experience of dementia and dementia care relationships. However, an understanding of the social context and origins of trauma and how these may be present in dementia care is missing from the literature and could be useful when implementing trauma‐informed dementia care practices. The objective of this study was to explore the phenomenology of trauma documented in the psychosocial histories of individuals diagnosed with dementia, and to discuss how the social aspects of that trauma may impact dementia care.MethodWe screened and sampled 113 individuals with younger onset dementia diagnoses that were admitted to a specialist neuropsychiatric health service between 2017 and 2021 (inclusive), using clinical discharge summaries as a data source. Clinician's descriptions of psychiatric and life history were used to identify individuals with a history of trauma. Text descriptions of trauma were extracted and gathered using a data collection tool. The study used qualitative methods, with the extracted text subject to reflexive thematic analysis. This method was used to construct themes encompassing trauma experienced by individuals within the sample. To compliment the qualitative analysis, demographic and clinical data was collected to characterise the sample.ResultForty‐four individuals had a documented history of trauma. Ten themes were constructed using reflexive thematic analysis of the data set. The themes encompassed the social origins and context of the past trauma experienced by the sampled individuals. The themes related to dynamics that play out at a personal, interpersonal, familial, historical and societal level.ConclusionsThis study provides further understanding of the experiences of trauma in people living with dementia, and how they are embedded within an individual's social life history and world. The findings demonstrate the potential for trauma to influence current and future dementia care relationships and provide context for how these relationships may currently be playing out within healthcare systems that provide dementia care. The findings can directly inform what should be considered when researching, planning and implementing trauma‐informed care for individuals living with dementia.