BACKGROUND: Dementia is a leading cause of death globally. However, end-of-life care is often poor or non-existent. People with dementia from ethnic minorities or socioeconomically deprived communities are even less likely to receive good palliative care. Despite this, research into end-of-life care often fails to include people from these populations.
OBJECTIVE: To find out what research is required to improve end-of-life care for everyone with dementia and how to facilitate inclusivity.
METHODS: A scoping review of the academic literature (Medline, CINAHL, EMBASE, PsycInfo and Scopus databases) published between Jan 2000 and April 2023 was conducted. Findings were shared with diverse key stakeholders through a series of workshops. Conclusions were subsequently used to provide evidence-based recommendations for inclusive end-of-life care and future research.
RESULTS: Themes from the literature were evident in the personal and professional experiences of key stakeholders. Palliative care providers are often ignorant of the needs of those dying in the margins. Support services are scarce and unequal geographically. There is a lack of personalised and culturally appropriate care for those with dementia and their families. Themes from the stakeholder groups included a need for better communication between services, and more investment into dementia as a palliative condition, with avenues created to increase trust and facilitate engagement with services.
CONCLUSIONS: Future research should focus on educational strategies, including how optimal end-of-life care differs for those with dementia compared to other life-limiting conditions, with appropriate models of inclusive, appropriately funded care needed.

UNASSIGNED: The CAREPATH Project aims to develop a patient-centered integrated care platform tailored to older adults with multimorbidity, including mild cognitive impairment (MCI) or mild dementia. Our goal is to empower multidisciplinary care teams to craft personalized holistic care plans while adhering to evidence-based guidelines. This necessitates the creation of clear specifications for clinical decision support (CDS) services, consolidating guidance from multiple evidence-based clinical guidelines. Thus, a co-creation approach involving both clinical and technical experts is essential.
UNASSIGNED: This paper outlines a robust methodology for generating implementable specifications for CDS services to automate clinical guidelines. We have established a co-creation framework to facilitate collaborative exploration of clinical guidelines between clinical experts and software engineers. We have proposed an open, repeatable, and traceable method for translating evidence-based guideline narratives into implementable specifications of CDS services. Our approach, based on international standards such as CDS-Hooks and HL7 FHIR, enhances interoperability and potential adoption of CDS services across diverse healthcare systems.
UNASSIGNED: This methodology has been followed to create implementable specifications for 65 CDS services, automating CAREPATH consensus guideline consolidating guidance from 25 selected evidence-based guidelines. A total of 296 CDS rules have been formally defined, with input parameters defined as clinical concepts bound to FHIR resources and international code systems. Outputs include 346 well-defined CDS Cards, offering clear guidance for care plan activities and goal suggestions. These specifications have led to the implementation of 65 CDS services integrated into the CAREPATH Adaptive Integrated Care Platform.
UNASSIGNED: Our methodology offers a systematic, replicable process for generating CDS specifications, ensuring consistency and reliability across implementation. By fostering collaboration between clinical expertise and technical proficiency, we enhance the quality and relevance of generated specifications. Clear traceability enables stakeholders to track the development process and ensure adherence to guideline recommendations.

OBJECTIVE: Dementia is accompanied by a variety of changes that result in an increased risk of malnutrition and low-intake dehydration. This guideline update aims to give evidence-based recommendations for nutritional care of persons with dementia in order to prevent and treat these syndromes.
METHODS: The previous guideline version was reviewed and expanded in accordance with the standard operating procedure for ESPEN guidelines. Based on a systematic search in three databases, strength of evidence of appropriate literature was graded by use of the SIGN system. The original recommendations were reviewed and reformulated, and new recommendations were added, which all then underwent a consensus process.
RESULTS: 40 recommendations for nutritional care of older persons with dementia were developed and agreed, seven at institutional level and 33 at individual level. As a prerequisite for good nutritional care, organizations caring for persons with dementia are recommended to employ sufficient qualified staff and offer attractive food and drinks with choice in a functional and appealing environment. Nutritional care should be based on a written care concept with standardized operating procedures. At the individual level, routine screening for malnutrition and dehydration, nutritional assessment and close monitoring are unquestionable. Oral nutrition may be supported by eliminating potential causes of malnutrition and dehydration, and adequate social and nursing support (including assistance, utensils, training and oral care). Oral nutritional supplements are recommended to improve nutritional status but not to correct cognitive impairment or prevent cognitive decline. Routine use of dementia-specific ONS, ketogenic diet, omega-3 fatty acid supplementation and appetite stimulating agents is not recommended. Enteral and parenteral nutrition and hydration are temporary options in patients with mild or moderate dementia, but not in severe dementia or in the terminal phase of life. In all stages of the disease, supporting food and drink intake and maintaining or improving nutrition and hydration status requires an individualized, comprehensive approach. Due to a lack of appropriate studies, most recommendations are good practice points.
CONCLUSIONS: Nutritional care should be an integral part of dementia management. Numerous interventions are available that should be implemented in daily practice. Future high-quality studies are needed to clarify the evidence.

Physical inactivity is an important, but potentially reversible risk factor for dementia and mild cognitive impairment (MCI). There is literature about physical activity and exercise for the prevention and management of dementia and MCI, but this had not been previously synthesized into specific guidelines about this topic. A recent guideline on physical activity and exercise in MCI and dementia was published, authored by several international societies, including lay representatives. In this commentary, we discuss the implications of this guidance for healthcare professionals, caregivers, and lay representatives involved in the care of people with MCI and dementia.The guidelines highlight the importance of physical activity and exercise in cognitively healthy persons and for dementia and MCI, at different stages of these conditions. For primary prevention of dementia, physical activity may be suggested in cognitively healthy persons. In people with MCI, mind-body interventions, such as yoga, have the greatest evidence, whilst the role of physical activity and exercise requires more evidence from high-quality randomized controlled trials. In people living with moderately severe dementia, exercise may be useful for maintaining physical and cognitive function. There are benefits of physical activity and exercise separate from their impact on cognitive outcomes. The guidelines also proposed some questions for future research. In conclusion, there is limited evidence on the beneficial role of physical activity and exercise in preserving cognitive functions in subjects with normal cognition, MCI or dementia. The guidelines support the promotion of physical activity based on the beneficial effects on almost all facets of health.

OBJECTIVE: To synthesize recommendations on assessing and managing behavioral and psychological symptoms of dementia (BPSDs) in existing clinical practice guidelines on dementia care to learn from and adapt recommendations to a Canadian context and language for describing BPSDs.
METHODS: Systematic review.
METHODS: Moderate to high-quality clinical practice guidelines on dementia care that made 1 or more recommendations on BPSD assessment or management.
METHODS: We searched MEDLINE, Embase, JBI EBM, PsycINFO, AgeLine, and gray literature for clinical practice guidelines on dementia care making recommendations on BPSD, published between January 1, 2011, and October 13, 2022. Two independent reviewers conducted study screening and data abstraction. Four independent reviewers completed quality appraisal using the Appraisal of Guidelines for Research and Evaluation (AGREE) II tool; included guidelines had a mean overall AGREE II score ≥4.
RESULTS: Our systematic review identified 23 moderate to high-quality clinical practice guidelines (264 recommendations). The mean overall quality score on the AGREE II tool ranged from 4 to 6.5. Recommendations were clearly presented (mean clarity of presentation score 73.5%), but guideline applicability was not consistently addressed (mean applicability score 39.3%). BPSD was the most prevalent term describing neuropsychiatric symptoms (number of guidelines [n] = 14). People with lived experience contributed to 6 guidelines (26.1%). Ten guidelines (43.5%) described 1 or more health equity considerations. Guidelines made recommendations for assessing and managing agitation (n = 12), aggression (n = 10), psychosis (n = 11), depression (n = 9), anxiety (n = 5), apathy (n = 6), inappropriate sexual behavior (n = 3), nighttime behavior (n = 5), and eating disturbances (n = 3). There was substantial variability in recommendation statements, evidence quality assigned to each statement, and strength of recommendations.
CONCLUSIONS: There are several moderate to high-quality clinical practice guidelines making recommendations on BPSD assessment and management, but variability in recommendation statements across guidelines and insufficient consideration of guideline applicability may hamper guideline dissemination and implementation in clinical practice.

UNASSIGNED: Advance care planning in dementia includes supporting the person and their family to consider important goals of care. International research reports the importance of psycho-social-spiritual aspects towards end of life.
UNASSIGNED: To develop a multidimensional international palliative care goals model in dementia for use in practice.
UNASSIGNED: International Delphi study integrating consensus and evidence from a meta-qualitative study. The Delphi panel rated statements about the model on a 5-point agreement scale. The criteria for consensus were pre-specified.
UNASSIGNED: Seventeen researchers from eight countries developed an initial model, and 169 candidate panellists were invited to the international online Delphi study.
UNASSIGNED: Panellists (107; response 63.3%) resided in 33 countries. The model comprised four main care goals: (1) Comfort ensured; (2) Control over function maintained; (3) Identity protected and personhood respected and (4) Coping with grief and loss-person and caregiver supported. The model reflects how needs and care goals change over time with the progression of dementia, concluding with bereavement support. The first version of the model achieved a consensus after which it was slightly refined based on feedback. We did not achieve a consensus on adding a goal of life prolongation, and on use of the model by people with dementia and family themselves.
UNASSIGNED: A new palliative care goals model for people with dementia and their families includes relationship aspects for use by professionals and achieved a consensus among a panel with diverse cultural background. The position of life prolongation in relation to palliative care goals needs further research.

Advance care planning (ACP) is increasingly recognised in the global agenda for dementia care. The European Association for Palliative Care (EAPC) Taskforce on ACP in Dementia aimed to provide recommendations for policy initiatives and future research. We conducted a four-round Delphi study with a 33-country panel of 107 experts between September, 2021, and June, 2022, that was approved by the EAPC Board. Consensus was achieved on 11 recommendations concerning the regulation of advance directives, equity of access, and dementia-inclusive approaches and conversations to express patients\' values. Identified research gaps included the need for an evidence-based dementia-specific practice model that optimises engagement and communication with people with fluctuating and impaired capacity and their families to support decision making, while also empowering people to adjust their decisions if their goals or preferences change over time. Policy gaps included insufficient health services frameworks for dementia-inclusive practice. The results highlight the need for more evidence and policy development that support inclusive ACP practice models.

There are no validated diagnostic criteria for traumatic encephalopathy syndrome (TES). During the early and middle 20th century, TES was described as a clinical condition that was experienced by some high-exposure boxers-and it was believed to reflect chronic traumatic brain injury. Consensus criteria for the diagnosis of TES were published in 2021. We applied the consensus criteria for TES retrospectively to cases of chronic brain damage in boxers described in articles published in the 20th century that were obtained from narrative and systematic reviews. The sample included 157 boxers identified in 21 articles published between 1929 and 1999. Two authors reviewed each case description and coded the criteria for TES. For the core clinical features, cognitive impairment was noted in 63.1%, and in 28.7% of cases the person\'s cognitive functioning appeared to be broadly normal. Neurobehavioral dysregulation was present in 25.5%. One third (34.4%) were identified as progressive, 30.6% were not progressive, and the course could not be clearly determined in 35.0%. In total, 29.9% met the TES consensus criteria, 28.0% did not, and 42.0% had insufficient information to make a diagnostic determination. TES, in the 20th century, was described as a neurological condition, not a psychiatric disorder-and this supports the decision of the 2021 consensus group to remove primary and secondary psychiatric diagnoses from being a core diagnostic feature. Future research is needed to determine whether, or the extent to which, cognitive impairment or neurobehavioral dysregulation described as characterizing TES are associated with chronic traumatic encephalopathy neuropathological change.

OBJECTIVE: Recent trial data demonstrate beneficial effects of active rhythm management in patients with atrial fibrillation (AF) and support the concept that a low arrhythmia burden is associated with a low risk of AF-related complications. The aim of this document is to summarize the key outcomes of the 9th AFNET/EHRA Consensus Conference of the Atrial Fibrillation NETwork (AFNET) and the European Heart Rhythm Association (EHRA).
RESULTS: Eighty-three international experts met in Münster for 2 days in September 2023. Key findings are as follows: (i) Active rhythm management should be part of the default initial treatment for all suitable patients with AF. (ii) Patients with device-detected AF have a low burden of AF and a low risk of stroke. Anticoagulation prevents some strokes and also increases major but non-lethal bleeding. (iii) More research is needed to improve stroke risk prediction in patients with AF, especially in those with a low AF burden. Biomolecules, genetics, and imaging can support this. (iv) The presence of AF should trigger systematic workup and comprehensive treatment of concomitant cardiovascular conditions. (v) Machine learning algorithms have been used to improve detection or likely development of AF. Cooperation between clinicians and data scientists is needed to leverage the potential of data science applications for patients with AF.
CONCLUSIONS: Patients with AF and a low arrhythmia burden have a lower risk of stroke and other cardiovascular events than those with a high arrhythmia burden. Combining active rhythm control, anticoagulation, rate control, and therapy of concomitant cardiovascular conditions can improve the lives of patients with AF.

BACKGROUND: The prevalence of impairments of cognitive functions is expected to increase. Enhancing the QoL of those affected is important. HRQoL in people with CI can be assessed by self-report, proxy-report or observation but there is uncertainty how to best assess HRQoL in people with CI, and which assessment method is most appropriate. Therefore the aim of our study was to use Delphi methodology in order to achieve consensus on how HRQoL should be assessed in people with CI and which content domains should be assessed.
METHODS: The Delphi process consisted of three online survey rounds and a concluding consensus conference. Participants were experts as well as individuals and relatives of people affected by CI. The Delphi survey was developed based on existing literature and included 55 statements at the first round. Consensus was considered to be achieved when a minimum of 75 % of responses fell into the categories 6 (agree) and 7 (strongly agree) (positive consensus) or in categories 1 (strongly disagree) and 2 (disagree) (negative consensus).
RESULTS: Consensus was reached for a total of 41 of 56 statements/substatements. In the 1st survey round 102 experts and 11 relatives participated. In the 2nd survey round 68 experts and 11 relatives continued to participate. In the 3rd survey round 41 experts and 9 relatives participated. In the consensus conference 17 experts and 4 relatives of individuals with CI and in the second one-hour online conference session 14 experts and 2 relatives of individuals with CI participated.
CONCLUSIONS: The combination of the three assessment methods self-report, proxy-report and observation across all stages of CI is the preferred method and should be used whenever possible. As domains Physical capacity, Psychological, Level of Independence, Social Relationships, Environment and Spirituality/Relogion/Personal Beliefs should be assessed.