Palliative Care In Dementia Research Articles

Dementia palliative care in the acute psychiatric hospital: A feasibility study.

We explored the feasibility of a clinical pathway to identify hospitalized patients with dementia who would benefit from a palliative intervention. Consecutive geropsychiatric admissions were screened for terminal dementia to be randomized to a palliative consultation vs usual care. A total of 43 of the 188 patients (23%) had dementia; however, dementia stages were severe but not terminal. The pathway was not feasible because of the lack of the target population in the inpatient setting for the intervention. New clinical pathways are needed to identify patients with dementia who would benefit from palliative care.

A systematic review of the integration of palliative care in dementia management.

Dementia is a progressive illness with a complex biopsychosocial constellation of symptoms faced by millions of individuals and families worldwide. Palliative care teams have specialized in symptom management and end-of-life care for decades; however, the role of palliative care in dementia management is not yet well elucidated. The aim of this systematic review was to understand the impact of palliative care in dementia management. This systematic review was conducted using a prospective study protocol. Medline and PubMed were searched from January 1, 1998 to October 2017. Eligible studies included single-blind cluster, two-arm parallel cluster, or unblinded randomized controlled trials (RCTs), observational studies, retrospective cohort studies, cross-sectional studies, concurrent mixed methods study, qualitative study, and Delphi studies. Four key themes were identified in this review: goals of care and end-of-life conversations, symptom management, emergency room visits, and prescribing behavior. In each domain, palliative care consultation either showed benefit or was postulated to have benefit if implemented. Although the literature to support or refute thematic conclusions is not large, there was a trend toward patient care benefit across several domains. Large RCTs with longer follow-up across different settings should be undertaken to solidify the themes and trends outlined in this review. Understanding the views of healthcare providers including referral sources (i.e., general practitioners and specialists) through qualitative research could optimize palliative care referrals, implement palliative care recommendations, and improve a targeted palliative care education curriculum.

A screen-based simulation training program to improve palliative care of people with advanced dementia living in residential aged care facilities and reduce hospital transfers: study protocol for the IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) cluster randomised controlled trial

BackgroundMany people with advanced dementia live in residential aged care homes. Care home staff need the knowledge and skills to provide high-quality end-of-life (EOL) dementia care. However, several studies have found EOL dementia care to be suboptimal, and care staff have reported they would benefit from training in palliative care and dementia. Simulation offers an immersive learning environment and has been shown to improve learners’ knowledge and skills. However, there is little research on simulation training for residential care staff.This article presents the development and evaluation protocol of IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) - a screen-based simulation training program on palliative dementia care, targeted at residential care staff. IMPETUS-D aims to improve the quality of palliative care provided to people living with dementia in residential care homes, including avoiding unnecessary transfers to hospital.MethodsA cluster RCT will assess the effect of IMPETUS-D. Twenty-four care homes (clusters) in three Australian cities will be randomised to receive either the IMPETUS-D intervention or usual training opportunities (control). The primary outcome is to reduce transfers to hospital and deaths in hospital by 20% over 6-months in the intervention compared to the control group. Secondary outcomes include uptake of goals of care plans over 6 and 12 months, change in staff knowledge and attitudes towards palliative dementia care over 6 months, change in transfers to hospital and deaths in hospital over 12 months. For the primary analysis logistic regression models will be used with standard errors weighted by the cluster effects. A mixed methods process evaluation will be conducted alongside the cluster RCT to assess the mechanisms of impact, the implementation processes and contextual factors that may influence the delivery and effects of the intervention.DiscussionIn Australia, the need for high-quality advanced dementia care delivered in residential aged care is growing. This study will assess the effect of IMPETUS-D a new simulation-based training program on dementia palliative and EOL care. This large multisite trial will provide robust evidence about the impact of the intervention. If successful, it will be distributed to the broader residential care sector.Trial registrationANZCTR, ACTRN12618002012257. Registered 14 December 2018.

191 A Multi-Country Survey to Explore What Key Stakeholders Consider to be Important in a Model of Dementia Palliative Care

Abstract Background The Model for Dementia Palliative Care Project will develop a service delivery model for community-based dementia palliative care in Ireland. This responds to palliative care now being recognised as a priority in care for people with dementia. Various dementia palliative care services exist internationally, however little is known about what the service providers would deem to be the most important aspects of service provision. The aim of this study was to identify what key stakeholders consider to be essential components of a model of dementia palliative care. Methods A web-based survey was developed, piloted (n=5), and revised. It was distributed electronically within five healthcare jurisdictions, in the Republic of Ireland, Northern Ireland, England, Scotland, and Wales. The target population was healthcare professionals, policy-makers, and academics, with an interest in dementia and palliative care. Content analysis of open ended questions was used to identify common themes within the data. Results Complete surveys were received from 112 stakeholders. The majority of respondents were female (86%). Identified key principles of care incorporated the philosophies of palliative care and good dementia care, with many describing ‘holistic’ and ‘person-centred care’ as core. Important individual components were identified, including support for carers, advanced care planning, information, education and training, activities for ‘meaningful living’, comprehensive disease management, coordinated case management, and linking in with community health services and social activities. Barriers to the model were identified at three levels: ‘(mis)understanding of dementia palliative care’, ‘application of dementia palliative care’ and ‘wider service organisation’. Conclusion Numerous components of a ‘good’ model were identified, along with possible barriers to implementation of the model. This study, as part of the larger project, will inform a model of dementia palliative care for the Irish Healthcare system with the potential to improve the experiences of people with dementia and their families.

186 Tailoring Change Management - Learning from “Readiness-to-Change” and Learning Needs Analyses, Focused on Dementia Palliative Care, in Three Long-term Care Settings

Abstract Background Over one third of people with dementia in Ireland reside in Long Term Care (LTC) settings. Dementia palliative care is complex; healthcare staff in LTC settings have requested specific guidance to support practice. This participatory action research project will introduce national evidence-based guidance documents relating to pain, hydration/nutrition, and medication management, into three LTC settings in Munster, using a tailored Work-based Learning approach, informed by a baseline multi-modal situational analysis. Methods Site and staff data were collected using a site profile tool; staff demographic and learning needs surveys; and the ‘VOCALISE’ readiness-to-change survey, in the three sites. Results Within the sites, 42-88% of residents had probable/definite dementia. Multidisciplinary input varied considerably between sites. In total, 69 staff (predominantly nurses and healthcare attendants) completed learning needs surveys. Many reported prior dementia education (range 53-76% across sites). This was twice as often on hydration/nutrition and medication topics than pain. Reflecting this, staff in all sites identified knowledge deficits, but particularly in pain identification, assessment and management. Other learning needs included supporting and communicating with families; resident care planning and advance care planning; and resident ‘comfort’. Of 58 staff with completed VOCALISE data, 33% were rated as ‘ready to change’, 14% ‘not’, and the remainder ambivalent. Interestingly, staff had high confidence in the ability of change to happen, but low motivation scores; and overall ambivalence towards their own power to make change happen. Some barriers were site-specific, but overall, staffing levels, managing risk during change and perceived reluctance in others were common barriers to change, as was the possibility that patient wishes hadn’t informed the change process. Conclusion Our baseline data highlights that education and change implementation needs to be tailored to the recipient site, recognising site-specific barriers to change. We will now use this data in our Work-based Learning intervention.

FACTORS IMPACTING LOSS-TO-FOLLOW-UP FROM A MEMORY CARE CENTER: A STUDY OF POTENTIAL PALLIATIVE CARE NEEDS

Dementia is a progressive and ultimately terminal illness requiring palliative care for people with dementia (PWD) and their caregivers. With cognitive and functional decline, caregivers experience increasing challenges in navigating the healthcare system and utilizing traditional ambulatory care services. We aimed to address a gap in our understanding of palliative care needs among PWD and their caregivers, who were lost to follow-up after being seen at a memory care unit within a large quaternary US academic medical center. We conducted a chart review of the characteristics and needs of 61 people with a diagnosed dementia syndrome, who were lost to follow-up for at least a year prior to death, after being seen at least once between 2012–2017 at the UCSF Memory and Aging Center. Among PWD who died, 50% were lost to follow-up a year or more before death. Of those whose charts we reviewed, 48% were female, 66% were white, with median education of 16 years. The most common diagnoses were Alzheimer's disease (47%), vascular dementia (24%), and dementia with Lewy body disease (13%). Commonly documented reasons for PWD and their caregivers not returning for care in the memory and aging center included switching care to another provider (33%), patient mobility changes (25%), and an overwhelmed caregiver (22%). Notes of conversations with caregivers provided additional insights related to care coordination challenges and a sense that there was no one to meet their needs: “L and her sister feel no one is coordinating [their] mom's care or has the ‘big picture’”; “Mr. X is overwhelmed with the challenges and stresses of managing his wife's care and their own household situation.” Understanding the end of life needs of PWD will be foundational for the subsequent design and implementation of clinical palliative care interventions that are person and caregiver centered. Attention to care coordination, PWD mobility limitations and caregiver stress will be key components of care for future dementia palliative care interventions.

Dementia and Parkinson's Disease: Similar and Divergent Challenges in Providing Palliative Care.

Dementia and Parkinson's disease are incurable neurological conditions. Patients often experience specific, complex, and varying needs along their disease trajectory. Current management typically employs a multidisciplinary team approach. Recognition is growing that this team approach should also address palliative care issues to optimize quality of life for patient and family caregivers, but it remains unclear how palliative care is best delivered. To inspire future service development and research, we compare the trajectories and conceptualization of palliative care between dementia and Parkinson's disease. Both Parkinson's disease and dementia are characterized by a protracted course, with progressive but fairly insidious development of disability. However, patients with Parkinson's disease may experience relatively stable periods initially but with time, a wide range of debilitating symptoms develops, many of which do not respond well to treatment. Eventually, dementia develops in most Parkinson patients, while motor disability develops in many dementia patients. In both diseases, symptoms such as pain, apathy, sleeping problems, falls, and a high caregiver burden are prevalent. Advance care planning has benefits in terms of being prepared before the disease progresses into a stage with communication problems or severe cognitive impairment. However, for both conditions, the protracted disease trajectories complicate conceptualization of palliative care through different stages of the disease, with pertinent questions such as when to offer what interventions pro-actively. Given the similarities and differences, we should develop palliative approaches that are partially generic and partially disease-specific. These should be integrated seamlessly with disease-specific care. Substantial research is already being performed on dementia palliative care. This may also inform the further development of palliative care for Parkinson's disease, including an evaluation of palliative interventions and services.

Investigating the healthcare utilisation and other support needs of people with young-onset dementia

IntroductionThere exists a knowledge gap about the specific needs and utilisation of healthcare services by people with young-onset dementia (YOD), defined as being diagnosed before the patient is 65 years of age. Palliative care for dementia has received increasing attention, yet those with YOD have been overlooked. ObjectiveTo explore healthcare utilisation, including at end-of-life, of people with YOD in Ireland, using hospital electronic records for case finding. MethodWe obtained Hospital In-Patient Enquiry data identifying all people with YOD admitted to three large urban hospitals between 2009 and 2016, and conducted a retrospective chart review. Information collected included demographics, medical and psychosocial history, functional capacity, last hospital admission, mortality and details regarding an advance care plan (ACP), using a standardised extraction form. ResultsOf the 121 patients identified, 50% were male. The commonest dementia types were: dementia secondary to Down’s syndrome (16%), vascular (14%), frontotemporal (13%) and Alzheimer’s disease (13%). 88% had ≥1 comorbid disease, including neurological (55%), cardiovascular (36%), and mental health illnesses (29%). Although 70% of people with YOD had an indication for an ACP (i.e. one or more markers of limited life expectancy), only 11% had any ACP recorded. 37% of patients had died, most commonly due to a complication of advanced dementia (e.g. aspiration pneumonia) rather than comorbid illness. ConclusionPeople with YOD most commonly die from complications of dementia, as opposed to people with late-onset dementia, who often die with dementia. Advanced care planning appears to be suboptimal in people with YOD. More research is essential to inform future policies and services for this often neglected population.

Nursing staff needs in providing palliative care for people with dementia at home or in long-term care facilities: A scoping review

BackgroundNursing staff caring for people with dementia have a crucial role in addressing palliative care needs and identifying changes in health status. Palliative care for people with dementia is complex and requires specific competences. A lack thereof may lead to unnecessary hospitalizations, poor symptom control and undesirable burdensome treatments. Understanding what nursing staff need to provide palliative care specifically for people with dementia facilitates the development of tailored and feasible interventions. ObjectiveTo investigate what is known from the literature regarding the needs in providing palliative dementia care as perceived by nursing staff working in home care or in long-term care facilities and to establish an integrated conceptualization of these needs. DesignA scoping review method combined with thematic analysis methods. Data sourcesBibliographic databases of PubMed, CINAHL and PsycINFO were searched for primary research studies. Review methodsGuidelines from the Joanna Briggs Institute were utilized as a framework for setting up and conducting the scoping review. Eligible articles considered nursing staff’s perceived needs in providing palliative dementia care at home or in long-term care facilities. Two authors assessed eligibility based on title and abstract, assessed full texts for selected records and assessed the quality of included articles. Thematic analysis methods were used to identify themes from relevant study findings, which were integrated to form a conceptualization. ResultsOf the 15 articles that were included, most used qualitative methods (N = 13) and were conducted in long-term care facilities (N = 14). Themes reflecting nursing staff needs on a direct care-level concern recognizing and addressing palliative care needs (such as comfort), verbal and non-verbal communication, challenging behaviour and familiarity: knowing and understanding the person with dementia. On more distant levels, themes involve a need for interdisciplinary collaboration, training and education and organizational support. ConclusionA comprehensive overview of nursing staff perspectives on providing palliative care for people with dementia demonstrates interdependent needs related to recognizing and addressing palliative care needs, communicating, handling challenging behaviour and building close care relationships. These care-related needs occur within workplace and organizational contexts. Organizational support is considered insufficient. Yet, healthcare organizations have the authority to fulfil a facilitating role in implementing nursing interventions tailored to nursing staff needs. Areas for further research include home care settings, the psychosocial and spiritual domains of palliative dementia care, advance care planning and family involvement.

The application of palliative care in dementia.

Introduction and Objective:Palliative care can be of great help to people with dementia during their old ages. The aim of this study was to assess the use of palliative care in patients with dementia.Methods:Search was conducted in PubMed, ScienceDirect, Google Scholar, and Scopus databases. A step-by-step approach was used to identify relevant studies, and related studies of were demarcated and other studies were excluded. This study has used empirical studies, review studies, and guidelines for health organizations in different countries.Results:A total of 65 sources were used, of which 24 were completely related to the subject of the study. In related studies, the use of various ways and means of palliative care to improve quality of life, reduce pain, and prevent falling in people with dementia is discussed.Discussion and Conclusion:Palliative care can help people with dementia to improve their quality of life; however, more research is needed on the application and proper management of palliative care in patients with dementia.

Palliative care in dementia: a fragmented pathway?

Most deaths occur in people over the age of 65 years, yet there is widespread evidence that older people have inequitable access to good palliative and end-of-life care. For people with dementia, there are further barriers to receiving palliative care. Identifying when older people with dementia are reaching the end of their lives is not straightforward. A palliative approach to care has been recognised as key in UK practice guidance; the National Institute of Health and Care Excellence recommends that, from diagnosis, people living with dementia should be offered flexible, needs-based palliative care that takes into account how unpredictable dementia progression can be. However there are still wide gaps in care in the dementia pathway, largely because commissioning is fragmented. This paper describes the Admiral Nurse case management approach to palliative care by benchmarking its practice against the European Association of Palliative Care white paper recommendations for palliative care in dementia.

Innovation of the governance of integrated care

Aim: Interest in integrated care is growing. This is reflected in the rising numbers of scientific publications, IJIC’s increased impact factor and the increasing number of participants at IFIC’s international conferences. It is stimulating to see that organizations like the World Health Organisation are developing conceptual frameworks that embrace integrated care [1,2]. At the same time we know that integrated care does not become reality automatically; it takes a long timeframe. That can be conflicting with ambitions like ‘implementing good practices as fast as possible’ and with the pressure to deliver results in politically set tight time frames. Governance of integrated care: For future directions, the governance of integrated care and interorganisational collaboration on a local level needs more attention, more innovative thinking and more knowledge. We define governance as the total package of leadership, accountability and supervision in the local setting in an area or region [3]. In the Netherlands, a huge number of networks of collaborating organisations in a certain area, for instance for dementia care, stroke care, elderly care or palliative care, have been set up in the last decade. Too less is known about the governance of these networks. In the workshop we discuss how the governance of integrated care and these networks works and what doesn’t work and could be innovated. An inventory among 130 integrated care networks in the Netherlands will be presented. It showed that although in most cases the collaboration is signed up in a collaborative agreements commitment towards the network is not automatically present. Organizational interests predominate and often one of the partners is dominant in the network that may often result in reduced levels of cooperation [4]. Although the aim of these networks is to serve clients better, results showed that in one-third of the networks the interests of clients are not taken into account. If clients are involved this is often via the professionals. Overall, the inventory shows that these networks explore and also struggle with how to organise integrated care and on what scale population, target group, geographical area. Traditional governance within organisations often does not match the needed governance between organisations. Network governance is more horizontal, non-hierarchic, and focuses on trust as a basic value. The quality of the relationship between involved people, organizations and underlying values is a crucial factor to focus on in this type of governance [5, 6]. In the workshop also the results of a session with 30 CEO’s of Dutch health care organisations from all domains are shared that demonstrate the themes for the future regarding the needed innovation in governance that suits integrated care. Themes are for instance accountability, ownership, legal issues, collaborative models but also uniformity in language. Network session or workshop: In the session insights about local governance leadership, accountability and supervision of integrated care are discussed, the results of the inventory among 130 networks. Expertise from other domains like legislation is present, including a representative CEO from an integrated care network. Reference list: see remarks 7 references included.

17Implementing Guidance for Palliative Care in Dementia Using Consolidated Framework for Implementation Research (CIFR): Results of a Multisite Situational Analysis

17Implementing Guidance for Palliative Care in Dementia Using Consolidated Framework for Implementation Research (CIFR): Results of a Multisite Situational Analysis

94A Scoping Review of the Evidence to Inform the Development of a Model for Dementia Palliative Care

94A Scoping Review of the Evidence to Inform the Development of a Model for Dementia Palliative Care

IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany (EPYLOGE): the study protocol

BackgroundScientific research on palliative care in dementia is still underdeveloped. In particular, there are no research studies at all on palliative care issues in young onset dementia (YOD), although significant differences compared to late onset dementia (LOD) are expected. Most studies have focused on persons with dementia in long term care (LTC) facilities but have neglected persons that are cared for at home. We hypothesize that unmet care needs exist in advanced and terminal stages of YOD and LOD and that they differ between YOD and LOD.Methods/designThe EPYLOGE-study (IssuEs in Palliative care for people in advanced and terminal stages of Young-onset and Late-Onset dementia in GErmany) aims to prospectively assess and survey 200 persons with YOD and LOD in advanced stages who are cared for in LTC facilities and at home. Furthermore, EPYLOGE aims to investigate the circumstances of death of 100 persons with YOD and LOD. This includes 1) describing symptoms and management, health care utilization, palliative care provision, quality of life and death, elements of advance care planning, family caregivers’ needs and satisfaction; 2) comparing YOD and LOD regarding these factors; 3) developing expert-consensus recommendations derived from the study results for the improvement and implementation of strategies and interventions for palliative care provision; 4) and communicating the recommendations nationally and internationally in order to improve and adapt guidelines, to change current practice and to give a basis and perspectives for future research projects. The results will also be communicated to patients and their families in order to counsel and support them in their decision making processes and their dialogue with professional caregivers and physicians.DiscussionEPYLOGE is the first study in Germany that assesses palliative care and end-of-life issues in dementia. Furthermore, it is the first study internationally that focuses on the specific palliative care situation of persons with YOD and their families. EPYLOGE serves as a basis for the improvement of palliative care in dementia.Trial registrationThe study is registered in ClinicalTrials.gov (NCT03364179; Registered: 6. December 2017.

Barreiras associadas aos cuidados na demência: uma revisão da literatura

INTRODUCTION: Dementia syndromes are a major cause of mortality and disability in the population. Although these patients bear a high burden of symptoms and comorbidities, the provision of palliative care is delayed until there are excessive symptoms or death is near. OBJECTIVE: To undertake an integrative review of the literature that addresses palliative care in the dementia syndromes, identifying limitations and barriers that preclude or hinder the introduction of palliative care for patients with dementia. METHOD: The MEDLINE (via PubMed), WEB OF KNOWLEDGE, and SCOPUS databases and the SCIELO Digital Library were searched to identify articles published in the last 10 years that addressed barriers to the introduction of palliative care in dementia. RESULTS: Six articles were identified, which discussed the following as main barriers: lack of knowledge, unpredictability of the disease, lack of criteria for indications, lack of communication, limited access and resources, beliefs and preconceptions in relation to death, and refusal by the patient and family. CONCLUSION: Additional investment is needed in education of professionals and the population on the indications and importance of palliative care, as well as in communication strategies as a way to facilitate the effective introduction of such care for people with dementia syndromes.

The dignity in advanced dementia (diadem) study: Developing an integrated geriatric palliative homecare program

Background: The prevalence of dementia is rising globally. Many patients suffer from the burdensome complications of advanced dementia as they are still poorly addressed. Aims: To describe the development of an interdisciplinary palliative homecare program for patients with advanced dementia and to develop a workflow that delineates the seamless continuation of care between the hospital and community with the homecare program. Design: Palliative care needs of patients and caregivers were established through a qualitative review of the literature. Appraisal tools were chosen based on their validity and feasibility in the homecare setting. Gaps in the healthcare system were identified and addressed as part of the integration of care between the hospital and the community. Setting/participants: Patients at Functional Assessment Staging (FAST) 7 with pneumonia, albumin level <35 g/L and/or enteral feeding were enrolled from a tertiary care hospital into the homecare program. Results: Patients’ symptom burden and quality of life were assessed. Caregivers were engaged in the planning of patients’ care. With the homecare program, patients and caregivers received support at home. Two physicians, seven nurses, and three social work professionals were educated about advanced dementia palliative care and medical information was communicated between different healthcare sites. Preliminary analysis of 306 patients revealed the presence of pain and neuropsychiatric behaviors. Impact of caregiving was mild to moderately severe. Conclusion: Advanced dementia is under-recognized as a terminal illness requiring specialized palliative intervention. Integrating a homecare palliative program into advanced dementia care is the first step towards palliating suffering at the end-of-life.

Tsunami Preparedness: Developing Dementia-Capable Palliative and Hospice Care Skills (P09)

•Discuss essential considerations in caring for the person with dementia along the trajectory of the disease from diagnosis to death.•Identify and explain the core elements to be addressed in a plan of care for those choosing palliative dementia care.•Create personalized, evidence-based care plans to maximize quality of life, and prevent or minimize distressing behaviors. As our population of aging baby boomers, sometimes dubbed the “silver tsunami,” continues to swell, so do their risks of developing some form of dementia. Alzheimer's, the most common type of progressive and terminal dementia, is the 6th foremost cause of death in America with current prevalence of 5.5 million estimated cases (Alzheimer's Association, 2017). The Alzheimer's death rate soared by 55% between 1999 and 2014, and continues to climb, impacting all races, ethnicities, and genders (Centers for Disease Control and Prevention, 2017). In 2014, dementia accounted for 14.8% of primary terminal diagnoses of hospice admissions in the U.S. (National Hospice and Palliative Care Organization, 2015). The unprecedented numbers of people living and dying with dementia underscore the imperative for widespread development of dementia-capable palliative and hospice care clinicians who can skillfully guide and support both patients and their families along the journey of dementia in a collaborative manner that avoids futile, burdensome interventions that can add to suffering, while focusing on promoting measures that uphold the person's goals and sense of well-being. This workshop will cover evidence-based care for persons with dementia beginning with diagnosis through end-of-life. Particular emphasis will be given to effective, person-centered, palliative dementia care practices that address a wide range of physical and psychosocial needs, in order to maximize comfort and optimize quality of life for those living with dementia and their families. Attendees will have an opportunity to refine care planning, education, and goal setting conversations. Case studies will be utilized to define comfort care, including medication simplification, assessment and management of pain and delirium, understanding and responding to distressed behavior, and compassionate environments and approach styles. Working in small groups, attendees will practice creating personalized, non-pharmacological care plans focused on maximizing quality of life, as well as preventing or minimizing distressed behaviors.

Association between palliative care and life-sustaining treatments for patients with dementia: A nationwide 5-year cohort study

Background: The association between palliative care and life-sustaining treatments for patients with dementia is unclear in Asian countries. Aim: To analyse the use of palliative care and its association with aggressive treatments based on Taiwanese national data. Design: A matched cohort study was conducted. The association between intervention and outcome was evaluated using conditional logistic regression analyses. Setting/participants: The source population comprised 239,633 patients with dementia diagnosed between 2002 and 2013. We selected patients who received palliative care between 2009 and 2013 (the treatment cohort; N = 1996) and assembled a comparative cohort (N = 3992) through 1:2 matching for confounding factors. Results: After 2009, palliative care was provided to 3928 (1.64%) patients of the dementia population. The odds ratio for undergoing life-sustaining treatments in the treatment cohort versus the comparative cohort was <1 for most treatments (e.g. 0.41 for mechanical ventilation (95% confidence interval: 0.35–0.48)). The odds ratio was >1 for some treatments (e.g. 1.73 for tube feeding (95% confidence interval: 1.54–1.95)). Palliative care was more consistently associated with fewer life-sustaining treatments for those with cancer. Conclusions: Palliative care is related to reduced life-sustaining treatments for patients with dementia. However, except in the case of tube feeding, which tended to be provided alongside palliative care regardless of cancer status, having cancer possibly had itself a protective effect against the use of life-sustaining treatments. Modifying the eligibility criteria for palliative care in dementia, improving awareness on the terminal nature of dementia and facilitating advance planning for dementia patients may be priorities for health policies.

Effects of two feedback interventions on end-of-life outcomes in nursing home residents with dementia: A cluster-randomized controlled three-armed trial

Background: Despite increased attention for palliative care in dementia, recent studies found burdensome symptoms and unmet family caregiver needs in the last phase of life. Feedback is being used to improve the quality of palliative care, but we do not know how effective it is. Aim: To assess the effect of two feedback strategies on perceived quality of end-of-life care and comfort in dying nursing home residents with dementia. Methods: In a cluster-randomized controlled trial, the End-of-Life in Dementia–Satisfaction With Care and the End-of-Life in Dementia–Comfort Assessment in Dying scales were completed by bereaved family caregivers of residents with dementia of 18 Dutch nursing homes. Two feedback strategies, generic feedback with mean End-of-Life in Dementia-scores and feedback with individual (patient-specific) End-of-Life in Dementia-scores, were compared to no feedback provided. The intervention groups discussed End-of-Life in Dementia-ratings in team meetings and formulated actions to improve care. Multi-level analyses assessed effects. Results: A total of 668 families rated the End-of-Life in Dementia–instruments. Compared to no feedback, the generic strategy resulted in lower quality of end-of-life care in unadjusted (B = −1.65, confidence interval = −3.27; −0.21) and adjusted analyses (B = −2.41, confidence interval = −4.07; −0.76), while there was no effect on comfort. The patient-specific strategy did not affect the quality of end-of-life care, but it increased comfort in unadjusted analyses (only, B = 2.20, confidence interval = 0.15; 4.39; adjusted: B = 1.88, confidence interval = −0.34; 4.10). Conclusion: Neither feedback strategy improved end-of-life outcome. Perhaps, skills to translate the feedback into care improvement actions were insufficient. Feedback with favorable family ratings might even have triggered opposite effects. Trial number: NTR3942.