Assistive technologies to address capabilities of people with dementia: from research to practice

Assistive technologies (AT) became pervasive and virtually present in all our life domains. They can be either an enabler or an obstacle leading to social exclusion. The Fondation Médéric Alzheimer gathered international experts of dementia care, with backgrounds in biomedical, human and social sciences, to analyse how AT can address the capabilities of people with dementia, on the basis of their needs. Discussion covered the unmet needs of people with dementia, the domains of daily life activities where AT can provide help to people with dementia, the enabling and empowering impact of technology to improve their safety and wellbeing, barriers and limits of use, technology assessment, ethical and legal issues. The capability approach (possible freedom) appears particularly relevant in person-centered dementia care and technology development. The focus is not on the solution, rather on what the person can do with it: seeing dementia as disability, with technology as an enabler to promote capabilities of the person, provides a useful framework for both research and practice. This article summarizes how these concepts took momentum in professional practice and public policies in the past fifteen years (2000-2015), discusses current issues in the design, development and economic model of AT for people with dementia, and covers how these technologies are being used and assessed

Assessing Needs of Care in European Nations. ENEPRI Policy Brief No. 14, 28 December 2012

This Policy Brief presents the research questions, main results and policy implications and recommendations of the seven Work Packages that formed the basis of the ANCIEN research project, financed under the 7th EU Research Framework Programme of the European Commission. Carried out over a 44-month period and involving 20 partners from EU member states, the project principally concerns the future of long-term care (LTC) for the elderly in Europe and addresses two questions in particular: How will need, demand, supply and use of LTC develop? How do different systems of LTC perform

Sensing the care:Advancing unobtrusive sensing solutions to support informal caregivers of older adults with cognitive impairment

Older adults (65 years and above) make up a growing proportion of the world's population which is anticipated to increase further in the coming decades. As individuals age, they often become more vulnerable to cognitive impairments, necessitating a diverse array of care and support services from their caregivers to uphold their quality of life. However, the scarcity of professional caregivers and care facilities, compounded by the preference of many older adults to remain in their own homes, places a significant burden on informal caregivers, adversely affecting their physical, mental, and social well-being. To assist informal caregivers, numerous sensing solutions have been developed. However, many of these solutions are not optimally suited for older adult care, particularly in cases of cognitive impairments. In that regard, the overarching aim of this thesis was to develop and evaluate the Unobtrusive Sensing Solution (USS) for in-home monitoring of older adults with cognitive impairment (OwCI) who live alone in their own houses to ease the support of their informal caregivers. In the 'Explore and Scope' part, a scoping review was conducted to identify available unobtrusive sensing technology that can be implemented in older adult care. Subsequently, in the 'Develop and Test' part, Wi-Fi CSI technology was utilized to collect a dataset illustrating physical agitation activities (Wi-Gitation). However, upon evaluation of the Wi-Gitation dataset, a challenge of generalization across different domains (or environments) was identified. To address this, the Inter-data Selected Sequential Transfer Learning framework was proposed and implemented. Lastly, in the 'Design to Communicate' part, the thesis focused on identifying the needs and requirements of informal caregivers of OwCI towards USSs. These needs and requirements were gathered through interviews and surveys, informing the development of a Lo-Fi prototype for an interaction platform. Overall, the results obtained in this thesis not only enhance the development of Wi-Fi CSI (specifically for OwCI care) but also provide valuable insights into the informational and design requirements of informal caregivers, thereby promoting the context-aware development of USSs

Impact of digital assistive technologies on the quality of life for people with dementia: a scoping review

Background Digital assistive technologies (DATs) have emerged as promising tools to support the daily life of people with dementia (PWD). Current research tends to concentrate either on specific categories of DATs or provide a generic view. Therefore, it is of essence to provide a review of different kinds of DATs and how they contribute to improving quality of life (QOL) for PWD. Design Scoping review using the framework proposed by Arksey and O’Malley and recommendations from Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews. Data sources Cochrane, Embase, PubMed, Scopus and Web of Science (January 2013 to May 2023). Eligibility criteria for selecting studies Completed scientific literature with a primary focus on DATs for PWD, perspectives of caregivers, family members or healthcare workers in relation to a PWD, people living in diverse settings and all severities of dementia. Data extraction and synthesis Screening and data extraction were conducted, followed by quantitative and qualitative analyses using thematic analysis principles and Digital Therapeutics Alliance categories for DAT grouping. Results The literature search identified 6083 records, with 1056 duplicates. After screening, 4560 full texts were excluded, yielding 122 studies of different designs. The DATs were categorised into digital therapeutics (n=109), patient monitoring (n=30), digital diagnostics (n=2), care support (n=2) and health system clinical software (n=1). These categories were identified to impact various aspects of QOL: preserving autonomy, engagement, and social interaction, health monitoring and promotion, improving activities of daily living, improving cognition, maintaining dignity, managing behavioural and psychological symptoms of dementia and safety/surveillance. Conclusions Various DATs offer extensive support, elevating the QOL of PWD. Digital therapeutics are predominantly used for ageing-in-place and independent living through assistance with daily tasks. Future research should focus on less-represented digital health technology categories, such as care support, health & wellness or software solutions. Observing ongoing DAT developments and their long-term effects on QOL remains essential

Developing Dementia-Friendly Tourism Destinations: An Exploratory Analysis

Dementia is emerging as a global issue. Increases in life expectancy create an older population structure with accompanying health needs but also high lifestyle expectations. For example existing generations have come to expect to be able to participate in leisure and tourism activities in later life, which can be constrained by the onset of dementia. Leading healthy lifestyles and engaging in tourism activities are viewed as fundamental to remaining active and contributing to slowing the progress of dementia. This study is the first to examine the challenges and implications of the growing scale of dementia and the business opportunities this may create for destinations wishing to achieve dementia-friendly status. The paper reports results from an initial scoping study with tourism businesses in a coastal resort in the United Kingdom with such ambitions to assess the nature of the issues that arose from a series of face-to-face interviews

Literature review: the cost effectiveness of assistive technology in supporting people with dementia

Despite much emphasis on the potential of assistive technologies of many varieties to deliver cost effective ways of supporting people with dementia, and clear indications of this potential, rigorous cost-effectiveness studies of these technologies for this group remain largely absent. The review includes consideration of the indicative evidence. This report describes the process and results of the literature review. Extensive searches identified a large literature, of which 59 items were systematically reviewed and quality assessed.We are indebted to the Dementia Services Development Trust who funded the study as part of the work of the Dementia Services Development Centre in Northern Ireland. This work is supported by the Atlantic Philanthropies and the Northern Ireland DHSSPH

Executive function & semantic memory impairments in Alzheimer’s disease — investigating the decline of executive function and semantic memory in Alzheimer’s disease through computer-supported qualitative analysis of semantic verbal fluency and its applications in clinical decision support

Alzheimer’s Disease (AD) has a huge impact on an ever-aging society in highly developed industrialized countries such as the EU member states: according to the World Alzheimer’s Association the number one risk factor for AD is age. AD patients suffer from neurodegenerative processes driving cognitive decline which eventually results in the loss of patients’ ability of independent living. Episodic memory impairment is the most prominent cognitive symptom of AD in its clinical stage. In addition, also executive function and semantic memory impairments significantly affect activities of daily living and are discussed as important cognitive symptoms during prodromal as well as acute clinical stages of AD. Most of the research on semantic memory impairments in AD draws evidence from the Semantic Verbal Fluency (SVF) task which evidentially also places high demands on the executive function level. At the same time, the SVF is one of the most-applied routine assessments in clinical neuropsychology especially in the diagnosis of AD. Therefore, the SVF is a prime task to study semantic memory and executive function impairment side-by-side and draw conclusions about their parallel or successive impairments across the clinical trajectory of AD. To effectively investigate semantic memory and executive function processes in the SVF, novel computational measures have been proposed that tap into data-driven semantic as well as temporal metrics scoring an SVF performance on the item-level. With a better and more differentiated understanding of AD-related executive function and semantic memory impairments in the SVF, the SVF can grow from a well-established screening into a more precise diagnostic tool for early AD. As the SVF is one of the most-applied easy-to-use and low-burden neurocognitive assessments in AD, such advancements have a direct impact on clinical practice as well. For the last decades huge efforts have been put on the discovery of disease-modifying compounds responding to specific AD biomarker-related cognitive decline characteristics. However, as most pharmaceutical trials failed, the focus has shifted towards population-wide early screening with cost-effective and scalable cognitive tests representing an effective mid-term strategy. Computer-supported SVF analysis responds to this demand. This thesis pursues a two-fold objective: (1) improve our understanding of the progressive executive function and semantic memory impairments and their interplay in clinical AD as measured by the SVF and (2) harness those insights for applied early and specific AD screening. To achieve both objectives, this thesis comprises work on subjects from different clinical stages of AD (Healthy Aging, amnestic Mild Cognitive Impairment—aMCI, and AD dementia) and in different languages (German & French). All results are based on SVF speech data generated either as a one-time assessment or a repeated within-participant testing. From these SVF speech samples, qualitative markers are extracted with different amount of computational support (ranging from manual processing of speech to fully automated evaluation). The results indicate, that semantic memory is structurally affected from an early clinical—amnestic Mild Cognitive Impairment (aMCI)—stage on and is even more affected in the later acute dementia stage. The semantic memory impairment in AD is particularly worsened through the patients’ inability to compensate by engaging executive functions. Hence, over the course of the disease, hampered executive functioning and therefore the inability to compensate for corrupt semantic memory structures might be the main driver of later-stage AD patients’ notably poor cognitive performance. These insights generated on the SVF alone are only made possible through computer-supported qualitative analysis on an item-per-item level which leads the way towards potential applications in clinical decision support. The more fine-grained qualitative analysis of the SVF is clinically valuable for AD diagnosis and screening but very time-consuming if performed manually. This thesis shows though that automatic analysis pipelines can reliably and validly generate this diagnostic information from the SVF. Automatic transcription of speech plus automatic extraction of the novel qualitative SVF features result in clinical interpretation comparable to manual transcripts and improved diagnostic decision support simulated through machine learning classification experiments. This indicates that the computer-supported SVF could ultimately be used for cost-effective fully automated early clinical AD screening. This thesis advances current AD research in a two-fold manner. First it improves the understanding of the decline of executive function and semantic memory in AD as measured through computational qualitative analysis of the SVF. Secondly, this thesis embeds these theoretical advances into practical clinical decision support concepts that help screen population-wide and cost-effective for early-stage AD.Die Alzheimer-Krankheit (AD) stellt eine enorme Herausforderung für die immer älter werdende Gesellschaft in hochentwickelten Industrieländern wie den EU-Mitgliedsstaaten dar. Nach Angaben der World Alzheimer's Association ist der größte Risikofaktor für AD das Alter. Alzheimer-Patienten leiden unter neurodegenerativen Prozessen, die kognitiven Abbau verursachen und schließlich dazu führen, dass Patienten nicht länger selbstbestimmt leben können. Die Beeinträchtigung des episodischen Gedächtnisses ist das prominenteste kognitive Symptom von AD im klinischen Stadium. Darüber hinaus führen auch Störungen der Exekutivfunktionen sowie der semantischen Gedächtnisleistung zu erheblichen Einschränkungen bei Aktivitäten des täglichen Lebens und werden als wichtige kognitive Symptome sowohl im Prodromal- als auch im akuten klinischen Stadium von AD diskutiert. Der Großteil der Forschung zu semantischen Gedächtnisbeeinträchtigungen bei AD stützt sich auf Ergebnisse aus dem Semantic Verbal Fluency Tests (SVF), der auch die Exekutivfunktionen stark fordert. In der Praxis ist die SVF eines der am häufigsten eingesetzten Routine- Assessments in der klinischen Neuropsychologie, insbesondere bei der Diagnose von AD. Daher ist die SVF eine erstklassige Aufgabe, um die Beeinträchtigung des semantischen Gedächtnisses und der exekutiven Funktionen Seite an Seite zu untersuchen und Rückschlüsse auf ihre parallelen oder sukzessiven Beeinträchtigungen im klinischen Verlauf von AD zu ziehen. Um semantische Gedächtnis- und Exekutivfunktionsprozesse in der SVF effektiv zu untersuchen, wurden jüngst neuartige computergestützte Verfahren vorgeschlagen, die sowohl datengetriebene semantische als auch temporäre Maße nutzen, die eine SVF-Leistung auf Item-Ebene bewerten. Mit einem besseren und differenzierteren Verständnis von ADbedingten Beeinträchtigungen der Exekutivfunktionen und des semantischen Gedächtnisses in der SVF kann sich die SVF von einem gut etablierten Screening zu einem präziseren Diagnoseinstrument für frühe AD entwickeln. Da die SVF eines der am häufigsten angewandten, einfach zu handhabenden und wenig belastenden neurokognitiven Assessments bei AD ist, haben solche Fortschritte auch einen direkten Einfluss auf die klinische Praxis. In den letzten Jahrzehnten wurden enorme Anstrengungen unternommen, um krankheitsmodifizierende Substanzen zu finden, die auf spezifische, mit AD-Biomarkern verbundene Merkmale des kognitiven Abbaus reagieren. Da jedoch die meisten pharmazeutischen Studien in jüngster Vergangenheit fehlgeschlagen sind, wird heute als mittelfristige Strategie bevölkerungsweite Früherkennung mit kostengünstigen und skalierbaren kognitiven Tests gefordert. Die computergestützte SVF-Analyse ist eine Antwort auf diese Forderung. Diese Arbeit verfolgt deshalb zwei Ziele: (1) Verbesserung des Verständnisses der fortschreitenden Beeinträchtigungen der Exekutivfunktionen und des semantischen Gedächtnisses und ihres Zusammenspiels bei klinischer AD, gemessen durch die SVF, und (2) Nutzung dieser Erkenntnisse für angewandte AD-Früherkennung. Um beide Ziele zu erreichen, umfasst diese Thesis Forschung mit Probanden aus verschiedenen klinischen AD Stadien (gesundes Altern, amnestisches Mild Cognitive Impairment-aMCI, und AD-Demenz) und in verschiedenen Sprachen (Deutsch & Französisch). Alle Ergebnisse basieren auf SVF Sprachdaten, erhoben im Querschnittdesign oder als wiederholte Testung in einem Längsschnittdesign. Aus diesen SVF-Sprachproben werden mit unterschiedlicher rechnerischer Unterstützung qualitative Marker extrahiert (von manueller Verarbeitung der Sprache bis hin zu vollautomatischer Auswertung). Die Ergebnisse zeigen, dass das semantische Gedächtnis bereits im frühen aMCI Stadium strukturell beeinträchtigt ist und im späteren akuten Demenzstadium noch stärker betroffen ist. Die strukturelle Beeinträchtigung des semantischen Gedächtnisses bei Alzheimer wird insbesondere dadurch verschlimmert, dass die Patienten nicht in der Lage sind, dies durch den Einsatz exekutiver Funktionen zu kompensieren. Daher könnten im Verlauf der Erkrankung eingeschränkte Exekutivfunktionen und damit die Unfähigkeit, degenerierte semantische Gedächtnisstrukturen zu kompensieren, die Hauptursache für die auffallend schlechten kognitiven Leistungen von AD-Patienten im Akutstadium sein. Diese Erkenntnisse basierend auf der SVF alleine werden erst durch die computergestützte qualitative Analyse auf Item-per-Item-Ebene möglich und weisen den Weg zu möglichen Anwendungen in der klinischen Entscheidungsunterstützung. Die feinkörnigere qualitative Analyse der SVF ist klinisch wertvoll für die AD-Diagnose und das Screening, aber sehr zeitaufwändig, wenn sie manuell durchgeführt wird. Diese Arbeit zeigt jedoch, dass automatische Analysepipelines diese diagnostischen Informationen zuverlässig und valide aus der SVF generieren können. Die automatische Transkription von Sprache plus die automatische Extraktion der neuartigen qualitativen SVF-Merkmale führen zu einer klinischen Interpretation, die mit manuellen Analysen vergleichbar ist. Diese Verarbeitung führt auch zu einer verbesserten diagnostischen Entscheidungsunterstützung, die durch Klassifikationsexperimente mit maschinellem Lernen simuliert wurde. Dies deutet darauf hin, dass die computergestützte SVF letztendlich für ein kostengünstiges vollautomatisches klinisches AD-Frühscreening eingesetzt werden könnte. Diese Arbeit bringt die aktuelle AD-Forschung auf zweifache Weise voran. Erstens verbessert sie unser Verständnis der kognitiven Einschränkungen im Bereich der Exekutivfunktionen und des semantischen Gedächtnisses bei AD, gemessen durch die computergestützte qualitative Analyse der SVF. Zweitens bettet diese Arbeit diese theoretischen Fortschritte in ein praktisches Konzept zur klinischen Entscheidungsunterstützung ein, das zukünftig ein bevölkerungsweites und kosteneffektives Screening für AD im Frühstadium ermöglichen könnte

Evaluation of Health Services

As the costs and resources of delivering health services have increased over the years, the importance of evaluating health services and interventions has become essential. An evaluation provides a systematic process of assessing the efficacy and efficiency of health services, including an assessment of their impact on beneficiaries, whether it be individuals or communities. Evaluation in the health sector includes the evaluation of burden disease where human and economic costs resulting from poor health are measured.In this book, various evaluation studies are detailed, providing an excellent resource for both evaluation practitioners and academics alike. The geographical range and variety of case studies showcase how evaluation has become integral for health service planning and assessment and to assist public health policy makers decide how to use limited resources to minimize burden and inequity. This book will act as a ready resource for both workers experienced in health service evaluation and those intending to learn about burden of disease of evaluation