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This introduction to the special report "Facing Dementia: Clarifying End-of-Life Choices, Supporting Better Lives" explains why focused attention to dementia is needed in bioethics and in health care practice in a range of settings. It explains how this strongly age-associated condition shapes individual lives over years, revealing inequities in how dementia care is financed. The introduction explains the structure of the report, which consists of five essays, a consolidated set of recommendations from these essays, bibliographies, and other resources. The first essay is a landscape review written for health care professionals to support discussion, debate, and deliberation within professional societies and networks concerning a patient's voluntary choice to hasten their own death in the context of a dementia diagnosis. The landscape review is followed by three essays that suggest how several familiar concepts within care for persons with serious illness should be rethought to better support advance care planning, physician-patient conversations, and access to community-based palliative care and hospice when a person is facing dementia. The final essay presents a bold, practical argument for supporting better lives for people facing dementia, and for dementia caregivers, through primary care, the usual source of care for people with dementia., (© 2024 The Hastings Center.)

Background: This study reports on new contexts in which formulaic language has been used in the years since 2013 when the last synthesis was carried out. The background presents an old but still useful definition and lists themes under which research was arranged in 2013 and which continue to be used., Aims: This study has a particular emphasis on the relevance of formulaic language to people living with dementia., Methods: Section 3, identifying new directions, reviews new 'third waves' of research priorities in several fields in which formulaic sequences play a major role, including sociolinguistic variation, corpus-based and corpus-driven analyses, pragmatics, human-computer interaction, and psycholinguistics, all of which are relevant to speech-language therapists. Section 4, outreach and expansions, illustrates new contributions from cognitively impaired person-to-person exchanges in online environments, recent examinations of infant- and pet-directed speech incorporating formulaic language, and online graphic explorations such as emojis. Section 5 focuses on growth of research in theoretical and clinical applications by Van Lancker Sidtis, as illustrated by references to her recent work., Main Contribution: The paper's main contribution is to summarize the work on formulaic language over the last 10 years, to indicate its continued importance and relevance in ordinary conversation, and especially in allowing people living with dementia to continue to interact with others., Conclusion: The paper concludes by suggesting that more focus be placed on the analysis of formulaic language with an emphasis on its relevance for speech-language therapists and other clinicians., What This Paper Adds: What is already known on the subject Research has been growing since the late 1970s and early 1980s on non-propositional language (as opposed at that time to the Chomskyan paradigm) and especially on lexical bundles, idioms, second language acquisition and multiword expressions. Studies beginning with Hughlings Jackson (1874) have been annotated through early 2012 (Wray, 2013). What this study adds This study examines 'third waves' in pragmatics, sociolinguistics and areas of neurology and speech perception contributing to what Van Lancker Sidtis (2021) calls the third wave of acceptance of the range and depth of formulaic sequences in ordinary or familiar language. What are the clinical implications of this work? Conversations with pet robots or web-based composition with emojis are but two of the developing areas built on formulaic sequences currently being used for communication interventions with persons living with dementia or other major neurocognitive disorder. Overviews of major contributions in theory and social contexts by Wray (2020, 2021) and theoretical and cognitive applications by Van Lancker Sidtis (2021) detail new areas for the study of formulaic sequences and their contributions to a range of neurocognitive disorders., (© 2023 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd behalf of Royal College of Speech and Language Therapists.)

Background: In the past few years there has been a growing interest in the employment of verbal productions as digital biomarkers, namely objective, quantifiable behavioural data that can be collected and measured by means of digital devices, allowing for a low-cost pathology detection, classification and monitoring. Numerous research papers have been published on the automatic detection of subtle verbal alteration, starting from written texts, raw speech recordings and transcripts, and such linguistic analysis has been singled out as a cost-effective method for diagnosing dementia and other medical conditions common among elderly patients (e.g., cognitive dysfunctions associated with metabolic disorders, dysarthria)., Aims: To provide a critical appraisal and synthesis of evidence concerning the application of natural language processing (NLP) techniques for clinical purposes in the geriatric population. In particular, we discuss the state of the art on studying language in healthy and pathological ageing, focusing on the latest research efforts to build non-intrusive language-based tools for the early identification of cognitive frailty due to dementia. We also discuss some challenges and open problems raised by this approach., Methods & Procedures: We performed a scoping review to examine emerging evidence about this novel domain. Potentially relevant studies published up to November 2021 were identified from the databases of MEDLINE, Cochrane and Web of Science. We also browsed the proceedings of leading international conferences (e.g., ACL, COLING, Interspeech, LREC) from 2017 to 2021, and checked the reference lists of relevant studies and reviews., Main Contribution: The paper provides an introductory, but complete, overview of the application of NLP techniques for studying language disruption due to dementia. We also suggest that this technique can be fruitfully applied to other medical conditions (e.g., cognitive dysfunctions associated with dysarthria, cerebrovascular disease and mood disorders)., Conclusions & Implications: Despite several critical points need to be addressed by the scientific community, a growing body of empirical evidence shows that NLP techniques can represent a promising tool for studying language changes in pathological aging, with a high potential to lead a significant shift in clinical practice., What This Paper Adds: What is already known on this subject Speech and languages abilities change due to non-pathological neurocognitive ageing and neurodegenerative processes. These subtle verbal modifications can be measured through NLP techniques and used as biomarkers for screening/diagnostic purposes in the geriatric population (i.e., digital linguistic biomarkers-DLBs). What this paper adds to existing knowledge The review shows that DLBs can represent a promising clinical tool, with a high potential to spark a major shift to dementia assessment in the elderly. Some challenges and open problems are also discussed. What are the potential or actual clinical implications of this work? This methodological review represents a starting point for clinicians approaching the DLB research field for studying language in healthy and pathological ageing. It summarizes the state of the art and future research directions of this novel approach., (© 2023 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

A panel of Italian neurologists of the Italian Society for the study of Dementias (SINDEM) discussed the recently proposed new lexicon for Alzheimer disease (AD) and the related diagnostic criteria for the different phases of the disease (Preclinical AD, prodromal AD and Alzheimer's dementia) (Dubois et al. in Lancet Neurol 6:734-746, 2007; in Lancet Neurol 9:1118-1127, 2010). The aim of this discussion was to reach a consensus, among the Italian neurologists involved in the study and care of persons with dementia, in particular in reference to the potential use of the proposed diagnostic criteria in clinical practice. After having critically revised the scientific evidence related to the new lexicon and to the new proposed diagnostic criteria, the panel concluded that the proposed new diagnostic criteria and the new proposed lexicon for AD are conceptually attractive. However, the evidence about the instrumental and laboratory markers for the diagnosis of the preclinical and asymptomatic states of the disease are, until to now, insufficient to support the routine clinical use of these investigations.

In elderly persons, antipsychotic drugs are clinically prescribed off-label for a number of disorders outside of their Food and Drug Administration (FDA)-approved indications (schizophrenia and bipolar disorder). The largest number of antipsychotic prescriptions in older adults is for behavioral disturbances associated with dementia. In April 2005, the FDA, based on a meta-analysis of 17 double-blind randomized placebo-controlled trials among elderly people with dementia, determined that atypical antipsychotics were associated with a significantly (1.6-1.7 times) greater mortality risk compared with placebo, and asked that drug manufacturers add a 'black box' warning to prescribing information for these drugs. Most deaths were due to either cardiac or infectious causes, the two most common immediate causes of death in dementia in general. Clinicians, patients, and caregivers are left with unclear choices of treatment for dementia patients with psychosis and/or severe agitation. Not only are psychosis and agitation common in persons with dementia but they also frequently cause considerable caregiver distress and hasten institutionalization of patients. At the same time, there is a paucity of evidence-based treatment alternatives to antipsychotics for this population. Thus, there is insufficient evidence to suggest that psychotropics other than antipsychotics represent an overall effective and safe, let alone better, treatment choice for psychosis or agitation in dementia; currently no such treatment has been approved by the FDA for these symptoms. Similarly, the data on the efficacy of specific psychosocial treatments in patients with dementia are limited and inconclusive. The goal of this White Paper is to review relevant issues and make clinical and research recommendations regarding the treatment of elderly dementia patients with psychosis and/or agitation. The role of shared decision making and caution in using pharmacotherapy for these patients is stressed.

Behavioral and psychological symptoms of dementia (BPSD), constitute a major clinical component of Alzheimer's disease (AD). There is a growing interest in BPSD as they are responsible for a large share of the suffering of patients and caregivers, and they strongly determine the patient's lifestyle and management. Better detection and understanding of these symptoms is essential to provide appropriate management. This article is a consensus produced by the behavioral group of the European Alzheimer's Disease Consortium (EADC). The aim of this article is to present clinical description and biological correlates of the major behavioral and psychological symptomatology in AD. BPSD is not a unitary concept. Instead, it should be divided into several symptoms or more likely: groups of symptoms, each possibly reflecting a different prevalence, course over time, biological correlate and psychosocial determinants. There is some clinical evidence for clusters within groups of BPSD. Biological studies indicate that patients with AD and BPSD are associated with variations in the pathological features (atrophy, brain perfusion/metabolism, histopathology) when compared to people with AD without BPSD. An individually tailored approach taking all these aspects into account is warranted as it may offer more, and better, pharmacological and non-pharmacological treatment opportunities.

Dementia poses major public health challenges, and high-quality epidemiological data are needed for service planning. Published estimates of numbers of people with dementia in Portugal have been based, in most cases, on prevalence rates derived from international studies or expert consensus. As in many other countries, Portuguese community prevalence studies’ results are nongeneralizable to a country level. Moreover, their prevalence estimates differ (not surprisingly, owing to different methodologies, e.g., design, sampling, and diagnostic criteria). Regardless, the Portuguese 10/66 Dementia Research Group (10/66 DRG) population-based survey fulfilled 10 out of 11 Alzheimer’s Disease International quality criteria for prevalence studies. It relied on cross-culturally validated methods, fostering a wide comparability of results. Therefore, we can provide rough estimates of 217,549 community dwellers with dementia in Portugal according to the 10/66 DRG criteria (that would be only 85,162 according to DSM-IV criteria). This refers to people aged 65 years or older who are not institutionalized. Although broadly consistent with international projections, these estimates must be cautiously interpreted. Particularly in the context of scarce funding, which will probably last for years, we need more efficient, evidence-based dementia policies. Concerning further epidemiological studies, high-quality methods are needed but also their comparability potential should be improved at national and international levels. Most of all, fund allocation in Portugal should now privilege routine dementia information systems in both health and social services.

Interest in the neuropsychology and neuropsychiatry of frontotemporal dementia (FTD) has escalated in the past decade, as evidenced by the accompanying 10 special topic papers from research groups in the UK, France, North America and Australia addressing a wide range of theoretical and clinical issues. The first part of this review deals with the confusing terminologies that have been used in the area and argues for the retention of the term FTD as the general clinical label, with further subcategorization into the three principal clinical syndromes seen at presentation: frontal variant FTD (often called dementia of frontal type), semantic dementia and progressive non-fluent aphasia. Each of these syndromes has a characteristic profile of presenting clinical features, but may be accompanied by any one of five types of non-Alzheimer pathological change. There have also been significant advances in the genetics of FTD with the identification of tau gene mutations on chromosome 17 in some familial cases. The remarkable story of the discovery of these, the tau gene mutations, is briefly described. Part II of this review (Hodges and Miller, 2001) sets the special issue papers within the context of advances in the neuropsychology of frontal variant FTD and semantic dementia.

The second part of this review, which accompanies 10 special topic articles dedicated to frontotemporal dementia (FTD), describes some of the advances in understanding frontal variant FTD (fvFTD) and semantic dementia, and the theoretical insights gained into normal cognitive processes from the study of these syndromes. Recent work has clarified the neuropsychiatric features that distinguish fvFTD from Alzheimer's and has begun to spread light on the underlying deficits in social judgement, theory of mind, processing of emotional stimuli and decision making. With regard to central aspects of cognitive processing, such as memory, patients with fvFTD may have a distinctive profile of performance on tests of explicit and implicit memory, and contrary to current views some patients may even have a severe amnesic syndrome. There is also growing evidence that despite relatively well preserved general language skills, patients with fvFTD have particular problems with verb processing. Although there is agreement regarding the key features of semantic dementia, much controversy has surrounded the issue of whether the cognitive findings favour an explanation in terms of progressive breakdown of a central amodal semantic store or differential involvement of verbal and non-verbal systems. Other topics discussed include the impact of semantic breakdown on phonological processes and episodic memory. We also review recent structural and functional neuroimaging findings in semantic dementia.

BackgroundAs a serious public health problem, dementia has placed a heavy burden on society and families. Evidence suggests that the use of music therapy as a non-pharmacological intervention has certain advantages with respect to reducing the behavioral and psychological symptoms of dementia (BPSD) and improving the cognition and mental status of dementia patients. However, research trends and hotspots regarding music therapy intervention for dementia analysis have not been systematically studied via bibliometric analysis.MethodsWe searched the Web of Science Core Collection (WoSCC) for texts published between January 1, 2010, and October 31, 2021, and visualized country, institution, journal, keyword co-occurrence, keyword emergence and keyword clustering.ResultsA total of 217 articles from the WoSCC database were analyzed. In this research field, the annual number of publications has generally shown a slowly increasing trend, and the United States has the most publications and the most frequent cooperation among countries. University College London (UCL) has the most extensive influence among research institutions. Among articles, those published in the JOURNAL OF ALZHEIMER'S DISEASE were the most numerous, with 20 such articles being published, accounting for 9.22% (20/217) of the total. Comprehensive analysis of five clusters via biclustering shows that the research hotspots in this field during the past 11 years have mainly focused on the autobiographical memory, cognitive function, mental state and BPSD of dementia patients.ConclusionThis study conducted a bibliometric and visual analysis of relevant studies concerning music therapy intervention for dementia patients. Psychological problems faced by dementia patients and the topics of quality of life, individualized music therapy, the mental state of caregivers and other related topics may be important research directions in the future. Therefore, the question of how to develop standardized research protocols and identify unified efficacy evaluation indicators should be a focus of and difficulty for future research.

The 10/66 Dementia Research Group has been formed to promote good-quality, internationally comparable research into dementia in developing countries through active research collaboration. In this position paper, we review existing research into dementia prevalence in developing regions of the world. Seven methodologically robust studies were identified. The prevalence of dementia, age-adjusted to the age structure of the Kerala population, ranged from 1.3% to 5.3% for all those aged 60 or over and from 1.7% to 5.2% for all those aged 65 and over. Two studies, from Ibadan, Nigeria and Ballabgarh, India, reported strikingly low prevalence figures. The reported prevalence for most studies was somewhat lower than the consistent figures for Europe reported by the EURODEM concerted action. Based on critical review of the literature, and on the practical research experience of members of the 10/66 group, recommendations have been made for procedure in the following areas: age limits for inclusion in dementia surveys, age ascertainment, sampling, scope for incidence studies, functional assessment and culture- and education-fair dementia diagnosis., (Copyright 2000 John Wiley & Sons, Ltd.)

Aim: To examine the effects of employment engagement, classified by frailty and working status, on the incidence of disability in urban community-dwelling older adults., Methods: We used data from 6386 initially nondisabled residents aged 65-84 years from Ota City, Tokyo, Japan, in 2016. The observation duration was 3.6 years. Self-administered questionnaires applied the Cox proportional hazard model by assessing the existence of frailty through Check-List 15 (with a score ≥4 indicating the state of frailty), controlling for age, sex, living situation, education level, equivalent income, chronic conditions, body mass index, instrumental activities of daily living, self-rated health, drinking and smoking status, and social activities. We evaluated the predictive value of working status (full-time, part-time, temporary, or nonworker) at baseline for cause-specific disability (dementia-type vs. non-dementia-type) incidence, identified using the long-term care insurance system's nationally unified database., Results: Of the 6386 participants, 806 (63/1134 full-time workers; 58/1001 part-time workers; 61/547 temporary workers; 624/3704 nonworkers) presented with disabilities during the 3.6-year-long duration. Adjustments for conventional covariates showed that nonfrail full-time and part-time workers, as well as frail full-time workers, had significantly lower risks of all-cause disability incidence. Furthermore, nonfrail and frail full-time workers had significantly lower risks of dementia-type and nondementia-type disabilities, respectively., Conclusions: The incidence of disability in older adults was influenced by working and frailty status. Engaging in full-time work thus prevents disabilities in older adults, regardless of their frailty status. Meanwhile, nonfrail older adults are able to avoid disabilities even when engaging in part-time work. Geriatr Gerontol Int 2023; 23: 855-863., (© 2023 Japan Geriatrics Society.)

Following is the report of the committee working on clinical global measures for antidementia drug guidelines. The concepts involved in global scales, the distinctions between change and severity scales, advantages and disadvantages of structured interviews, and anchoring of change scores are discussed, and selected existing clinical global scales are described. In addition, the committee assessed the utility of global scales in clinical trials for antidementia drugs. There was a consensus among the members of the working group on the following: (1) Clinical global scales are interview based; in most cases, they include information obtained from caregivers as well as directly from patients, but they can rely on information from the subject only. (2) Clinicians' global ratings are intended to assess clinically meaningful change based on multidimensional clinical assessment and take into account the clinical heterogeneity of dementia by assessing at least cognition, behavior, and functioning. (3) There are two distinct types of clinical global measures: (a) clinicians' interview-based global severity scales, which generally incorporate classification by stage or severity of illness and (b) clinicians' interview-based global change scales, which incorporate global assessment ratings of clinical change. The committee could not reach a consensus on whether global scales should be required in phase II and phase III clinical trials, or whether other specific assessments such as well-designed activities of daily living, cognition, and behavior measures could, when used in appropriate combinations, replace the global as assessments of clinical meaningfulness.

Some of the issues associated with standardizing the diagnosis of dementia in clinical trials are outlined. Deliberations of the Working Group on Diagnostic Criteria and their recommendations for future actions needed to develop a consensus are described.

Background: This study developed a short version of a scale measuring attitudes toward people living with dementia, the Four-Item Attitudes toward People Living with Dementia Scale (APDS4), that could be included in a large population survey., Methods: We used three datasets from Japan: a web panel survey, a community-based mail survey, and data from a randomised controlled trial on dementia education. The original scale used was the Attitudes toward People Living with Dementia Scale developed by Kim and Kuroda. Test-retest reliability and item response theory analyses were used to reduce the number of items. The reliability, internal consistency, validity, and responsiveness of the short version were evaluated., Results: Six items with low test-retest reliability and four items with low discrimination parameters were removed from the 14-item scale. The APDS4, consisting of four items, had test-retest reliability and internal consistency comparable to those of the original scale. Confirmatory factor analysis indicated that the APDS4 fit a unidimensional model. The validity of the APDS4 was confirmed by significant associations between the APDS4 scores and the original scale scores, knowledge of dementia, helping behaviour intentions toward people living with dementia, helping behaviour experience, attending the Dementia Supporter Training Course, and engagement in healthcare jobs. In a randomised controlled trial dataset, the APDS4 was more responsive to educational interventions than the original scale., Conclusion: The shortened APDS4 was established as a reliable, validated, and responsive scale. This scale can be used efficiently in population surveys to evaluate dementia-friendly initiatives at the community level., (© 2024 The Author(s). Psychogeriatrics published by John Wiley & Sons Australia, Ltd on behalf of Japanese Psychogeriatric Society.)

Background: A diagnosis of dementia places a heavy burden on those affected and their families. Often, difficult decisions must be made. Ideally, people with a new dementia diagnosis make informed decisions together with family members. Digital informational materials can be an important low-threshold resource for making informed decisions. They should provide comprehensive information about dementia, including both primary prevention (risk factors for the onset of dementia) and later treatment options. They should also cover precautionary measures that can make future decisions easier (e.g., advance directives, power of attorney). However, there is currently no comprehensive overview of the various online resources for dementia-related information., Methods: This study explores digital informational materials on dementia for different target groups in the German-speaking area using an innovative systematic search strategy. It examines how these materials are structured in terms of risk factors, treatment options, and decision support. This methodological approach is new, so it is described and discussed in detail., Results: The results show that most materials are intended for people with dementia and their families. Treatment measures are often discussed without explaining the risk factors they are meant to address. There is little focus on preventive measures that could support decision-making., Discussion: The unbalanced presentation could lead to certain measures being difficult to understand (for laypeople) or to misinterpretation of risk factors. Important implications are drawn from these findings., (© 2024. The Author(s).)

Aim: To understand nurses' knowledge, beliefs and experiences affect pain management practices in hospitalised persons living with dementia (PLWD)., Design: Naturalistic inquiry using qualitative descriptive design., Methods: Semi-structured interviews were conducted with 12 registered nurses who worked in one acute care hospital in Southern California from October to November 2022. Data were analysed using content analysis to identify themes., Results: Two themes were developed: improvising pain assessment, which included how pain was documented, and administration hesitancy referring to nurse's concerns about PLWD's confusion. Nurses described the challenges of assessing pain in hospitalised PLWD particularly if they were non-verbal and/or demonstrating responsive behaviours. Nurse's years of experience, dementia stigma, and their unconscious biases affected nurses' pain management practices., Conclusions: The study findings highlight the complex challenges of pain management in hospitalised PLWD that are exacerbated by nurses' knowledge deficits, negative stereotypical beliefs, dementia stigma and unconscious biases towards older people that contributes to undermanaged pain in hospitalised PLWD., Implications: A comprehensive strategy using an implementation framework is needed to address nurse's knowledge gaps, unconscious bias, dementia stigma and techniques that enhance communication skills is suggested. Building a foundation in these areas would improve pain management in hospitalised PLWD., Impact: Improving pain management in hospitalised PLWD would improve the quality of life, decrease hospital length of stay, prevent readmissions, and improve nurse satisfaction., Reporting Method: The study adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ)., Patient Contributions: Improving pain management in hospitalised PLWD would prevent long term confusion, episodes of delirium and improve quality of life as they recover from their acute illness for which they required hospital care., (© 2024 The Authors. Journal of Clinical Nursing published by John Wiley & Sons Ltd.)

Aim: To describe uncertainty in surrogate decision-making regarding end-of-life care for people with dementia using Mishel's reconceptualized uncertainty in illness theory., Design: Integrative literature review using Whittemore and Knafl's approach., Data Sources: PubMed, CINAHL, EMBASE, Scopus and Web of Science were searched using terms such as uncertainty/unpredictability, decision-making/advance care planning/end-of-life care planning, surrogate/family/caregiver/proxy and dementia. The search was initially conducted on 28 September 2021 and updated on 31 July 2023., Review Methods: Through systematic screening, 20 research articles were included in the analysis. Content related to uncertainty in surrogate decision-making regarding end-of-life care was extracted and analysed, focusing on the reconceptualized uncertainty in illness theory., Results: First, surrogate uncertainty exists in various areas of surrogate decision-making regarding end-of-life care. Second, antecedents of surrogate uncertainty include numerous intrinsic and extrinsic factors. Third, surrogates exhibited some negative psychological responses to uncertainty but continually processed and structured their uncertainty through certain approaches, leading them to grow as decision-makers. Finally, research-based evidence on surrogates' processing of uncertainty and shifts to new life perspectives remains limited., Conclusion: Surrogates' uncertainty in decision-making regarding end-of-life care for people with dementia is well characterized using the reconceptualized uncertainty in illness theory. Healthcare providers should help surrogates manage their uncertainty in surrogate decision-making more constructively throughout the dementia trajectory., Implications for the Profession And/or Patient Care: The findings highlight the importance of assessing how surrogates process uncertainty and gauging how to help them process uncertainty and transition to new life perspectives., Impact: This review contributes to healthcare professionals' understanding of surrogates' uncertainty in end-of-life care planning for people with dementia, especially what they are uncertain about, what influences their uncertainty and how they process it., Reporting Method: This study adheres to the PRISMA reporting guidelines., Patient or Public Contribution: No patient or public contribution., (© 2024 John Wiley & Sons Ltd.)

Objectives: To explore the profiles of psychological flexibility among dementia family caregivers and examine their associations with psychological well-being and caregiving factors., Methods: Participants were 521 dementia family caregivers in Japan. Latent profile analysis was conducted to explore the profiles of psychological flexibility. The analyses examined differences in depression, anxiety, life satisfaction, and work-family conflict/enrichment between the profiles, and whether sociodemographic variables and caregiving stressors predict the profile., Results: Four distinct profiles were identified: high psychological flexibility (14.2%), moderate psychological flexibility with high commitment (24.7%), moderate psychological flexibility with low commitment (48.0%), and low psychological flexibility (13.1%). The low psychological flexibility profile exhibited the highest scores of depression, anxiety and work-family conflict, followed by the moderate psychological flexibility with low/high commitment profiles, and the high psychological flexibility profile. The high psychological flexibility and moderate psychological flexibility with high commitment profiles exhibited higher life satisfaction than the moderate psychological flexibility with low commitment profile. Caregiving stressors, marital status, and caregiver status predicted the profile., Conclusion: Enhancing defusion and acceptance, rather than increasing commitment to personal values, may be beneficial in supporting distressed caregivers. Having more caregiving stressors, being single/divorced/bereaved, and being a primary caregiver may be useful indicators of decreased psychological flexibility among dementia family caregivers., (© 2024 Wiley Periodicals LLC.)

Objectives: For many people with dementia and unpaid carers, using technology for care and support has become essential. Rapid proliferation of technology highlights the need to understand digital access to health and social care services for dementia. This mixed-methods systematic review aims to explore digital access to health and social care services for dementia, from the perspective of people with dementia and unpaid carers., Methods: Nine electronic databases were searched in May 2023 for qualitative, quantitative, or mixed-method studies, published in English or German, focused on experiences of using technology-delivered health and social care services for people with dementia and unpaid carers. After removal of duplicates and screening, 44 empirical papers were included., Results: From the 44 studies, findings were grouped into five categories, highlighting experiences for people with dementia and unpaid carers: (1) Adapting to technology, (2) Inequalities and variations in outcomes, (3) Impact on caring, (4) Impact on health, and (5) Impact on relationships. Proliferation of technology in care access emphasised the need for quick adaptation to technology and examination of its impact. The impact of such service delivery has evidenced mixed findings. There were improvements in the health and wellbeing of people with dementia and unpaid carers, and benefits for their dyadic relationship. However, using technology for health and social care access is not always possible and is often reliant on unpaid carers for support. Lower tech-literacy, lack of equipment or money to buy equipment and poor internet connection can impact the potential for positive outcomes., Conclusions: Technology can bring great benefits: social inclusion, improved service access and care. However, using technology in service delivery in dementia needs careful thought. Professionals and service providers need to be cognizant of the complex nature of dementia, and the benefits and challenges of hybrid service delivery., (© 2024 The Author(s). International Journal of Geriatric Psychiatry published by John Wiley & Sons Ltd.)

Background: The association between depression and dementia is still unclear, particularly regarding depression as a potential risk factor preceding dementia. Therefore, we aimed to verify if the presence of depression at baseline may increase the risk of dementia and cognitive impairment during 15 years of follow-up in the SHARE (Survey of Health, Aging and Retirement in Europe) study., Methods: Depressive symptoms were defined using the EURO-D, with a score ≥4 indicative of depression. Incident dementia was ascertained using self-reported data and caregivers' information, cognitive impairment using objective cognitive tests. Cox regression analysis, adjusted for 10 baseline confounders, was run and hazard ratios (HRs), with their 95% confidence intervals, were estimated., Results: In total 22,789 participants were included in the present analysis (mean age 64.2 years) and were predominantly female. The prevalence of depression at baseline was 24.9%. Over 15 years of follow-up, the onset of dementia occurred a median 2 years earlier in people with depression compared to those without. Depression at the baseline significantly increased the risk of dementia in the overall sample (HR = 1.74; 95% CI: 1.54-1.95) and the risk of cognitive impairment (HR = 1.15; 95% CI: 1.06-1.25). For dementia, the association was stronger in people less than 60 years (HR = 2.07; 95% CI: 1.42-3.02) than in participants aged ≥80 years (HR = 1.47; 95% CI: 1.14-1.91). A similar trend was observed for cognitive impairment. Among the single items of the EURO-D, loss of concentration was the strongest individual variable predicting the onset of dementia., Conclusions: Depression increased the risk of dementia and cognitive impairment, particularly in younger adults, whereas loss of concentration was the strongest individual predicting variable of dementia. These findings demonstrate the need for early detection of depression for preventing future cognitive worsening., (© 2024 John Wiley & Sons Ltd.)

Background: People with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease may experience language and communication difficulties. However, the role of speech and language interventions for people with these non-language led dementias has received little attention., Aims: This study aimed to explore the experiences and perspectives of people living with these conditions, and their families, regarding their language and communication difficulties and how speech and language therapy could address these needs., Methods: This study employed a qualitative design to explore the experiences of people living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy or young onset Alzheimer's disease, and to understand their opinions about speech and language therapy. Participants were recruited from a support service connected to a dementia clinic to attend one of five focus group meetings. Videorecorded focus groups and interviews were transcribed, and reflexive thematic analysis was used to analyse data from people affected by each type of dementia., Results: A total of 25 participants were recruited to the study, with representation across the different forms of non-language led dementias. The four main themes identified were: (1) communication difficulties as a key difficulty, (2) loss and loneliness, (3) speech and language therapy, and (4) the role of the caregiver. Sixteen subthemes were also identified which highlighted individual issues across disease types., Discussion: Although all the forms of dementia studied here are not considered to be language-led, people with these conditions and/or their care partners identified speech, language and communication as common challenges. These communication difficulties were reported to have a negative impact on their social participation and mental health and participants felt speech and language interventions could help. There is a need for research exploring speech and language interventions developed for and with people with non-language led dementias and their care partners, to ensure they meet the needs of the people they are designed for., What This Paper Adds: What is already known on the subject People with primary progressive aphasia present with speech, language and communication difficulties, and several speech and language interventions have been developed to meet the needs of this population. However, people with non-language led dementias may also experience speech, language and communication difficulties, and little is known about interventions that may address these difficulties. What this paper adds to existing knowledge People living with or caring for somebody with behavioural variant frontotemporal dementia, Lewy body dementia, posterior cortical atrophy and young onset Alzheimer's disease report experiencing speech, language and communication difficulties that impact on the person with dementia's social participation and mood. Participants in this study also shared their opinions about how speech and language interventions could help, from the earliest stages of the disease. What are the potential or actual clinical implications of this work? Speech and language therapists need to address the individual speech, language and communication needs of people with dementias, even those that are not thought to be language-led. Current speech and language therapy service provision does not meet the needs of people with non-language led dementias and further research is required to develop interventions and services to meet these needs., (© 2024 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists.)

The Alzheimer's Disease Neuroimaging Initiative (ADNI) is an ongoing, longitudinal, multicenter study designed to develop clinical, imaging, genetic, and biochemical biomarkers for the early detection and tracking of Alzheimer's disease (AD). The initial study, ADNI-1, enrolled 400 subjects with early mild cognitive impairment (MCI), 200 with early AD, and 200 cognitively normal elderly controls. ADNI-1 was extended by a 2-year Grand Opportunities grant in 2009 and by a competitive renewal, ADNI-2, which enrolled an additional 550 participants and will run until 2015. This article reviews all papers published since the inception of the initiative and summarizes the results to the end of 2013. The major accomplishments of ADNI have been as follows: (1) the development of standardized methods for clinical tests, magnetic resonance imaging (MRI), positron emission tomography (PET), and cerebrospinal fluid (CSF) biomarkers in a multicenter setting; (2) elucidation of the patterns and rates of change of imaging and CSF biomarker measurements in control subjects, MCI patients, and AD patients. CSF biomarkers are largely consistent with disease trajectories predicted by β-amyloid cascade (Hardy, J Alzheimer's Dis 2006;9(Suppl 3):151-3) and tau-mediated neurodegeneration hypotheses for AD, whereas brain atrophy and hypometabolism levels show predicted patterns but exhibit differing rates of change depending on region and disease severity; (3) the assessment of alternative methods of diagnostic categorization. Currently, the best classifiers select and combine optimum features from multiple modalities, including MRI, [(18)F]-fluorodeoxyglucose-PET, amyloid PET, CSF biomarkers, and clinical tests; (4) the development of blood biomarkers for AD as potentially noninvasive and low-cost alternatives to CSF biomarkers for AD diagnosis and the assessment of α-syn as an additional biomarker; (5) the development of methods for the early detection of AD. CSF biomarkers, β-amyloid 42 and tau, as well as amyloid PET may reflect the earliest steps in AD pathology in mildly symptomatic or even nonsymptomatic subjects and are leading candidates for the detection of AD in its preclinical stages; (6) the improvement of clinical trial efficiency through the identification of subjects most likely to undergo imminent future clinical decline and the use of more sensitive outcome measures to reduce sample sizes. Multimodal methods incorporating APOE status and longitudinal MRI proved most highly predictive of future decline. Refinements of clinical tests used as outcome measures such as clinical dementia rating-sum of boxes further reduced sample sizes; (7) the pioneering of genome-wide association studies that leverage quantitative imaging and biomarker phenotypes, including longitudinal data, to confirm recently identified loci, CR1, CLU, and PICALM and to identify novel AD risk loci; (8) worldwide impact through the establishment of ADNI-like programs in Japan, Australia, Argentina, Taiwan, China, Korea, Europe, and Italy; (9) understanding the biology and pathobiology of normal aging, MCI, and AD through integration of ADNI biomarker and clinical data to stimulate research that will resolve controversies about competing hypotheses on the etiopathogenesis of AD, thereby advancing efforts to find disease-modifying drugs for AD; and (10) the establishment of infrastructure to allow sharing of all raw and processed data without embargo to interested scientific investigators throughout the world.

According to the World Health Organization, there are currently more than 55 million people living with dementia worldwide, and this figure is expected to triple by 2050. Recent studies suggest that there may be a link between childhood trauma (which refers to exposure to overwhelmingly stressful experiences before the age of 18 years) and the onset of dementia in later life. Therefore, in communities caring for persons living with dementia, some residents may have been exposed to trauma in childhood. Currently, there is an increasing awareness of the negative impact of childhood trauma on later adult health and well-being, and a corresponding recognition of the need for services, including for dementia care, to be trauma-informed. In the last decade, the Montessori Method has become established as a legitimate approach to elder/dementia care. However, it has not yet been examined as a trauma-informed approach. The aim of this paper is to address that gap by (a) highlighting how Maria Montessori took steps to integrate interdisciplinary knowledge of trauma into her Method when she began to understand the potential of childhood trauma to adversely impact adult health and well-being, and (b) outlining how the Montessori Method, when applied to dementia care, incorporates many of the core principles of trauma-informed practice. This paper concludes that the Montessori Method for dementia care has the built-in capacity to be trauma-sensitive and trauma-responsive, but that its ongoing rollout should follow Montessori's lead by specifically integrating knowledge about the neurobiology of trauma into its training programs.

Background: In the past few years there has been a growing interest in the employment of verbal productions as digital biomarkers, namely objective, quantifiable behavioural data that can be collected and measured by means of digital devices, allowing for a low-cost pathology detection, classification and monitoring. Numerous research papers have been published on the automatic detection of subtle verbal alteration, starting from written texts, raw speech recordings and transcripts, and such linguistic analysis has been singled out as a cost-effective method for diagnosing dementia and other medical conditions common among elderly patients (e.g., cognitive dysfunctions associated with metabolic disorders, dysarthria). Aims: To provide a critical appraisal and synthesis of evidence concerning the application of natural language processing (NLP) techniques for clinical purposes in the geriatric population. In particular, we discuss the state of the art on studying language in healthy and pathological ageing, focusing on the latest research efforts to build non-intrusive language-based tools for the early identification of cognitive frailty due to dementia. We also discuss some challenges and open problems raised by this approach. Methods & Procedures: We performed a scoping review to examine emerging evidence about this novel domain. Potentially relevant studies published up to November 2021 were identified from the databases of MEDLINE, Cochrane and Web of Science. We also browsed the proceedings of leading international conferences (e.g., ACL, COLING, Interspeech, LREC) from 2017 to 2021, and checked the reference lists of relevant studies and reviews. Main Contribution: The paper provides an introductory, but complete, overview of the application of NLP techniques for studying language disruption due to dementia. We also suggest that this technique can be fruitfully applied to other medical conditions (e.g., cognitive dysfunctions associated with dysarthria, cerebrovascular disease and mood disorders). Conclusions & Implications: Despite several critical points need to be addressed by the scientific community, a growing body of empirical evidence shows that NLP techniques can represent a promising tool for studying language changes in pathological aging, with a high potential to lead a significant shift in clinical practice.

Background: This study reports on new contexts in which formulaic language has been used in the years since 2013 when the last synthesis was carried out. The background presents an old but still useful definition and lists themes under which research was arranged in 2013 and which continue to be used. Aims: This study has a particular emphasis on the relevance of formulaic language to people living with dementia. Methods: Section 3, identifying new directions, reviews new 'third waves' of research priorities in several fields in which formulaic sequences play a major role, including sociolinguistic variation, corpus-based and corpus-driven analyses, pragmatics, human-computer interaction, and psycholinguistics, all of which are relevant to speech-language therapists. Section 4, outreach and expansions, illustrates new contributions from cognitively impaired person-to-person exchanges in online environments, recent examinations of infant- and pet-directed speech incorporating formulaic language, and online graphic explorations such as emojis. Section 5 focuses on growth of research in theoretical and clinical applications by Van Lancker Sidtis, as illustrated by references to her recent work. Main Contribution: The paper's main contribution is to summarize the work on formulaic language over the last 10 years, to indicate its continued importance and relevance in ordinary conversation, and especially in allowing people living with dementia to continue to interact with others. Conclusion: The paper concludes by suggesting that more focus be placed on the analysis of formulaic language with an emphasis on its relevance for speech-language therapists and other clinicians.

Background: Interventions such as advance care planning (ACP), technology, or access to euthanasia may increase the sense of control over the end of life. In people with advanced dementia, the loss of cognitive and physical function limits the ability to control care. To date, little is known about the acceptability of these interventions from the perspective of persons with dementia and others involved. This study will examine the cross-cultural acceptability, and factors associated with acceptability, of four end-of-life interventions in dementia which contain an element of striving for control. Also, we report on the development and pilot testing of animation video vignettes that explain the interventions in a standardized manner., Methods: Cross-sectional mixed-methods vignette study. We assess acceptability of two ACP approaches, technology use at the end of life and euthanasia in persons with dementia, their family caregivers and physicians in six countries (Netherlands, Japan, Israel, USA, Germany, Switzerland). We aim to include 80 participants per country, 50 physicians, 15 persons with dementia, and 15 family caregivers. After viewing each animation video, participants are interviewed about acceptability of the intervention. We will examine differences in acceptability between group and country and explore other potentially associated factors including variables indicating life view, personality, view on dementia and demographics. In the pilot study, participants commented on the understandability and clarity of the vignettes and instruments. Based on their feedback, the scripts of the animation videos were clarified, simplified and adapted to being less slanted in a specific direction., Discussion: In the pilot study, the persons with dementia, their family caregivers and other older adults found the adapted animation videos and instruments understandable, acceptable, feasible, and not burdensome. The CONT-END acceptability study will provide insight into cross-cultural acceptability of interventions in dementia care from the perspective of important stakeholders. This can help to better align interventions with preferences. The study will also result in a more fundamental understanding as to how and when having control at the end of life in dementia is perceived as beneficial or perhaps harmful., Trial Registration: The CONT-END acceptability study was originally registered at the Netherlands Trial Register (NL7985) at 31 August, 2019, and can be found on the International Clinical Trials Registry Platform., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia., Methods: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs., Results: Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child's rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child's condition trajectory., Conclusion: This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families., (© 2023. Institut National de la Santé et de la Recherche Médicale (INSERM).)