15,235 results
Search Results
2. Evaluation of the usefulness of a paper–pencil group cognitive assessment for older adults in the community
- Author
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Cho, Daisuke, Suzuki, Hiroyuki, Ogawa, Susumu, Takahashi, Tomoya, Sato, Kenichiro, Iizuka, Ai, Kobayashi, Momoko, Yamauchi, Misako, Kinai, Anna, Li, Yan, and Fujiwara, Yoshinori
- Published
- 2023
- Full Text
- View/download PDF
3. Reply to "Letter to the Editor for the Review Paper: The association between blood pressure variability with dementia and cognitive function: A systematic review and meta-analysis".
- Author
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Chiu TJ, Yeh JT, and Cheng HM
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- Blood Pressure, Cognition, Humans, Dementia, Hypertension diagnosis, Hypertension epidemiology
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- 2021
- Full Text
- View/download PDF
4. "A piece of paper is not the same as having someone to talk to": accessing post-diagnostic dementia care before and since COVID-19 and associated inequalities.
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Giebel C, Hanna K, Tetlow H, Ward K, Shenton J, Cannon J, Butchard S, Komuravelli A, Gaughan A, Eley R, Rogers C, Rajagopal M, Limbert S, Callaghan S, Whittington R, Shaw L, and Gabbay M
- Subjects
- Adult, Aged, Female, Humans, Male, Middle Aged, SARS-CoV-2, COVID-19 epidemiology, Caregivers psychology, Dementia psychology, Health Services Accessibility economics, Health Services Accessibility standards, Healthcare Disparities, Social Work
- Abstract
Background: Social support services such as day care centres are important in post-diagnostic dementia care to enable people living with dementia stay at home for longer. Little research has addressed potential inequalities in access, with no research on variations before and since COVID-19. The aim of this study was to explore inequalities in social support service usage before and since the pandemic., Methods: Unpaid carers and people living with dementia were interviewed over the phone about their experiences of accessing social support services before and since the COVID-19 pandemic. Transcripts were analysed for key themes using inductive and deductive thematic analysis., Results: Fifty participants (42 unpaid carers; eight people living with dementia) were interviewed, and five themes identified: (1) Service issues; (2) Access issues; (3) Relying on own initiative; (4) New inequalities due to COVID-19; and (5) Missing out on the benefits of support services. Participants reported transport, finances, and location as factors reducing their ability to access support service pre-COVID, with inequalities remaining and at times exacerbated since. Carers and people living with dementia also reported struggling with accessing basic necessities during COVID, including food and medicines., Conclusions: Considering the benefits of accessing support services, resourced procedures and facilities are needed to maintain access to support services with more accessible remote support provision, enabling people from all backgrounds to access the care they need.
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- 2021
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5. A Pioneering Paper That Provided a Tool for Accurate, Observer-Independent Analysis of 18 F-FDG Brain Scans in Neurodegenerative Dementias.
- Author
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Herscovitch P
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- Humans, Publications, Sensitivity and Specificity, Brain diagnostic imaging, Dementia diagnostic imaging, Fluorodeoxyglucose F18
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- 2020
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6. Priorities for research on neuromodulatory subcortical systems in Alzheimer's disease: Position paper from the NSS PIA of ISTAART
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Ehrenberg, Alexander J, Kelberman, Michael A, Liu, Kathy Y, Dahl, Martin J, Weinshenker, David, Falgàs, Neus, Dutt, Shubir, Mather, Mara, Ludwig, Mareike, Betts, Matthew J, Winer, Joseph R, Teipel, Stefan, Weigand, Alexandra J, Eschenko, Oxana, Hämmerer, Dorothea, Leiman, Marina, Counts, Scott E, Shine, James M, Robertson, Ian H, Levey, Allan I, Lancini, Elisa, Son, Gowoon, Schneider, Christoph, Van Egroo, Maxime, Liguori, Claudio, Wang, Qin, Vazey, Elena M, Rodriguez‐Porcel, Federico, Haag, Lena, Bondi, Mark W, Vanneste, Sven, Freeze, Whitney M, Yi, Yeo‐Jin, Maldinov, Mihovil, Gatchel, Jennifer, Satpati, Abhijit, Babiloni, Claudio, Kremen, William S, Howard, Robert, Jacobs, Heidi IL, and Grinberg, Lea T
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Neurosciences ,Dementia ,Acquired Cognitive Impairment ,Alzheimer's Disease ,Aging ,Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD) ,Neurodegenerative ,Brain Disorders ,Aetiology ,2.1 Biological and endogenous factors ,Neurological ,Humans ,Alzheimer Disease ,Brain ,Biomarkers ,Disease Progression ,Clinical Sciences ,Geriatrics - Abstract
The neuromodulatory subcortical system (NSS) nuclei are critical hubs for survival, hedonic tone, and homeostasis. Tau-associated NSS degeneration occurs early in Alzheimer's disease (AD) pathogenesis, long before the emergence of pathognomonic memory dysfunction and cortical lesions. Accumulating evidence supports the role of NSS dysfunction and degeneration in the behavioral and neuropsychiatric manifestations featured early in AD. Experimental studies even suggest that AD-associated NSS degeneration drives brain neuroinflammatory status and contributes to disease progression, including the exacerbation of cortical lesions. Given the important pathophysiologic and etiologic roles that involve the NSS in early AD stages, there is an urgent need to expand our understanding of the mechanisms underlying NSS vulnerability and more precisely detail the clinical progression of NSS changes in AD. Here, the NSS Professional Interest Area of the International Society to Advance Alzheimer's Research and Treatment highlights knowledge gaps about NSS within AD and provides recommendations for priorities specific to clinical research, biomarker development, modeling, and intervention. HIGHLIGHTS: Neuromodulatory nuclei degenerate in early Alzheimer's disease pathological stages. Alzheimer's pathophysiology is exacerbated by neuromodulatory nuclei degeneration. Neuromodulatory nuclei degeneration drives neuropsychiatric symptoms in dementia. Biomarkers of neuromodulatory integrity would be value-creating for dementia care. Neuromodulatory nuclei present strategic prospects for disease-modifying therapies.
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- 2023
7. Evaluation of the usefulness of a paper–pencil group cognitive assessment for older adults in the community
- Author
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Daisuke Cho, Hiroyuki Suzuki, Susumu Ogawa, Tomoya Takahashi, Kenichiro Sato, Ai Iizuka, Momoko Kobayashi, Misako Yamauchi, Anna Kinai, Yan Li, and Yoshinori Fujiwara
- Subjects
Dementia ,Cognitive decline ,Paper–pencil type group examination for cognitive assessment ,Public aspects of medicine ,RA1-1270 - Abstract
Abstract Background As the older population increases, the need for early detection of cognitive decline is also increasing. In this study, we examined whether our paper–pencil type group examination for cognitive assessment (PAPLICA) could detect the effects of years of education and aging. Methods PAPLICA was conducted on 829 older people. The inclusion criteria were age 60 years or older and the ability to come to the event site alone. The exclusion criteria were participants with a medical or psychiatric disorder or dementia.One examiner conducted the test on a group of approximately 10–20 people in approximately 25 min. Participants were instructed on tackling the issues projected on the projector, and their answers were recorded in a response booklet. Results An independent sample t-test was performed for years of education, and ANCOVA was performed for aging. Among the test items included in PAPLICA, the Speed I and Letter fluency tests were unable to detect the effects of aging. Furthermore, the age at which the effect of aging manifests varies depending on the test item. For instance, a decline in scores in the Speed I and Picture ECR Free recall tests was observed in the 70–74 age group; for that of Word DRT, Picture ECR cued recall, and Similarity, in the 75–79 age group; for CFT, in the 80–84 age group, and for CLOX, the decline was observed in the 85 ≤ age group. Conclusions PAPLICA, similar to other neuropsychological tests, was able to detect the effects of years of education and aging. Future testing should be conducted on different demographics to identify the differences in patterns of cognitive decline.
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- 2023
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8. Final Paper DAT Cognitive Art Therapy System
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Jacobson, Eric
- Abstract
Del Giacco Art Therapy is a cognitive art therapy process that focuses on stimulating the mental sensory systems and working to stabilize the nervous system and create new neural connections in the brain. This system was created by Maureen Del Giacco, Phd. after recovering from her own traumatic brain injury and is based on extensive research of neuro science concepts and observation of brain trauma victims and dementia patients and their recovery. Neuro-science has demonstrated that brain tissue is able to respond to damage or loss of neurons such as might happen in the event of a stroke, dementia or traumatic brain injury. Studies show that appropriate repetition of mental activities can stimulate the growth of new dendrites and refine some connections between neurons. If the "cell body" of the neuron is intact it can re-grow. If not nearby neurons can be "trained" to take over the role of the destroyed ones." (DAT course)
- Published
- 2009
9. MODEM: A comprehensive approach to modelling outcome and costs impacts of interventions for dementia. Protocol paper.
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Comas-Herrera A, Knapp M, Wittenberg R, Banerjee S, Bowling A, Grundy E, Jagger C, Farina N, Lombard D, Lorenz K, and McDaid D
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- Cost-Benefit Analysis, Dementia therapy, England, Female, Humans, Male, Quality of Life, Caregivers economics, Caregivers psychology, Dementia economics, Models, Economic
- Abstract
Background: The MODEM project (A comprehensive approach to MODelling outcome and costs impacts of interventions for DEMentia) explores how changes in arrangements for the future treatment and care of people living with dementia, and support for family and other unpaid carers, could result in better outcomes and more efficient use of resources., Methods: MODEM starts with a systematic mapping of the literature on effective and (potentially) cost-effective interventions in dementia care. Those findings, as well as data from a cohort, will then be used to model the quality of life and cost impacts of making these evidence-based interventions more widely available in England over the period from now to 2040. Modelling will use a suite of models, combining microsimulation and macrosimulation methods, modelling the costs and outcomes of care, both for an individual over the life-course from the point of dementia diagnosis, and for individuals and England as a whole in a particular year. Project outputs will include an online Dementia Evidence Toolkit, making evidence summaries and a literature database available free to anyone, papers in academic journals and other written outputs, and a MODEM Legacy Model, which will enable local commissioners of services to apply the model to their own populations., Discussion: Modelling the effects of evidence-based cost-effective interventions and making this information widely available has the potential to improve the health and quality of life both of people with dementia and their carers, while ensuring that resources are used efficiently.
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- 2017
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10. Impact of periodontal disease on cognitive disorders, dementia, and depression: a systematic review and meta-analysis.
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Dibello V, Custodero C, Cavalcanti R, Lafornara D, Dibello A, Lozupone M, Daniele A, Pilotto A, Panza F, and Solfrizzi V
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- Humans, Cognitive Dysfunction etiology, Cognitive Dysfunction physiopathology, Cognition Disorders etiology, Dementia epidemiology, Periodontal Diseases complications, Periodontal Diseases epidemiology, Depression epidemiology
- Abstract
A growing body of research suggested that there was a link between poor periodontal health and systemic diseases, particularly with the early development of cognitive disorders, dementia, and depression. This is especially true in cases of changes in diet, malnutrition, loss of muscular endurance, and abnormal systemic inflammatory response. Our study aimed to determine the extent of these associations to better target the multi-level healthy aging challenge investigating the impact of periodontal disease on cognitive disorders (cognitive impairment and cognitive decline), dementia, and depression. We conducted a comprehensive literature search up to November 2023 using six different electronic databases. Two independent researchers assessed the eligibility of 7363 records against the inclusion criteria and found only 46 records that met the requirements. The study is registered on PROSPERO (CRD42023485688). We generated random effects pooled estimates and 95% confidence intervals (CI) to evaluate whether periodontal disease increased the risk of the investigated outcomes. The quality assessment revealed moderate quality of evidence and risk of bias. Periodontal disease was found to be associated with both cognitive disorders (relative risk (RR) 1.25, 95% CI 1.11-1.40, in the analysis of cross-sectional studies); cognitive impairment (RR 3.01, 95% CI 1.52-5.95 for longitudinal studies, cognitive decline); and dementia (RR 1.22, 95% CI 1.10-1.36). However, no significant increased risk of depression among subjects with periodontal disease was found (RR 1.07, 95% CI 0.95-1.21). Despite the association with two of the three explored outcomes, the available evidence on periodontal diseases and dementia, cognitive disorders, and depression is controversial due to several limitations. Therefore, further investigations involving validated and standardized tools are required., (© 2024. The Author(s), under exclusive licence to American Aging Association.)
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- 2024
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11. Characteristics of people diagnosed with dementia vs lung cancer and cardiovascular disease at commencement of community palliative care: a population-based study.
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Wang G, Zanjani ME, Cook A, Dai Y, Tan M, Qin XS, Johnson CE, and Ding J
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- Humans, Male, Female, Aged, Aged, 80 and over, Australia, Middle Aged, Community Health Services methods, Palliative Care methods, Palliative Care standards, Palliative Care statistics & numerical data, Dementia therapy, Lung Neoplasms therapy, Lung Neoplasms complications, Cardiovascular Diseases therapy
- Abstract
Background: Most people diagnosed with dementia live and die in community settings. This study aimed to: (i) describe the palliative care needs of patients with dementia at commencement of community palliative care; (ii) compare palliative care needs between patients with dementia and those with lung cancer and cardiovascular disease (CVD)., Methods: This is a population-based descriptive study that involved 8,727, 7,539 and 25,279 patients who accessed community palliative care across Australia principally because of dementia, CVD and lung cancer. Patients' functional abilities, symptom burden and clinical condition were assessed at commencement of community alliative care using five validated instruments: Resource Utilisation Groups-Activities of Daily Living, Australia-modified Karnofsky Performance Status, Symptoms Assessment Scale, Palliative Care Problem Severity Score and Palliative Care Phase. We fitted ordinal logistic regression models to examine the differences in these assessments for dementia versus CVD and lung cancer, respectively., Results: Overall, patients with dementia generally had low levels of distress from symptoms but poor functional problems. Compared to the other two diagnostic groups, palliative care for dementia was often initiated later and with shorter contacts. Also, patients with dementia presented with poorer functional performance (adjusted OR (aOR) = 4.02, Confidence Interval (CI): 3.68 - 4.38 for dementia vs CVD; aOR = 17.59, CI: 15.92 - 19.44 for dementia vs lung cancer) and dependency (aOR = 5.68, CI: 5.28 - 6.12 for dementia vs CVD; aOR = 24.97, CI: 22.77 - 27.39 for dementia vs lung cancer), but experienced lower levels of distress and problem severity for the majority of symptoms., Conclusion: Community palliative care is often an ideal care option for many patients, particularly for those with dementia. We call for expansion of the palliative care workforce and options for home care support to optimize accessibility of community palliative care for dementia., (© 2024. The Author(s).)
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- 2024
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12. Dementia across the Lifespan and around the Globe-Pathophysiology, Prevention, Treatment, and Societal Impact: A Call for Papers.
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- Cost of Illness, Dementia epidemiology, Dementia physiopathology, Dementia therapy, Early Diagnosis, Global Health statistics & numerical data, Humans, Risk Factors, Dementia prevention & control
- Abstract
In this months editorial, the PLOS Medicine Editors announce an upcoming Special Issue and call for papers, with Guest Editors Carol Brayne and Bruce Miller, on dementia across the lifespan and around the globe., Competing Interests: The authors' individual competing interests are at http://journals.plos.org/plosmedicine/s/staff-editors. PLOS is funded partly through manuscript publication charges, but the PLOS Medicine Editors are paid a fixed salary (their salaries are not linked to the number of papers published in the journal).
- Published
- 2016
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13. The evaluation of a healthcare passport to improve quality of care and communication for people living with dementia (EQuIP): a protocol paper for a qualitative, longitudinal study.
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Leavey G, Abbott A, Watson M, Todd S, Coates V, McIlfactrick S, McCormack B, Waterhouse-Bradley B, and Curran E
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- Communication, Dementia therapy, Empathy, Female, Humans, Longitudinal Studies, Male, Program Evaluation, Qualitative Research, Quality of Life, Research Design, Social Support, United Kingdom, Continuity of Patient Care organization & administration, Dementia psychology, Quality Improvement organization & administration
- Abstract
Background: There is an urgent need for the development of simple communication tools that convey the strengths, assets, and healthcare needs of people living with dementia. A Healthcare Passport may improve communication with range of health and social support services, enhancing quality and continuity of care, and to permit a consideration of the challenges and how these might be managed effectively and compassionately. This study aims to evaluate the acceptability and use of this type of intervention for people living with dementia and their carers., Methods/design: This is a qualitative longitudinal study informed by a critical realist review. The participants will be individuals identified as having mild-moderate dementia and informal carers. The in-depth interviews will occur at three points over the course of 18 months as they use the passport. This will be supplemented by analysis of the content of the passports and information from health and social care providers on the daily practicalities of using the passport in a range of healthcare settings., Discussion: By using a critical realist review and a qualitative, longitudinal approach, the study allows for the assessment of a complex intervention in a manner which goes beyond evaluating the basic efficacy of the passport, but looking more deeply at how it worked, for whom, and in what context. It has the potential to develop new data on how interventions improve communication across a range of service providers, while encouraging health and social care professionals to respect and encourage the development of self-management and retention of personhood throughout the progression of life-limiting illnesses.
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- 2016
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14. 'Redefine conversation': how Just a Minute can help people living with dementia; An academic paper says the show creates ideal conditions for 'cognitive overload' and demonstrates how to avoid it
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British Broadcasting Corp. ,Dementia ,Television broadcasting industry ,Comedians ,News, opinion and commentary - Abstract
Byline: Steven Morris BBC Radio 4's Just a Minute may be wonderfully entertaining for listeners but it is often excruciating for players as they attempt to speak for 60 seconds [...]
- Published
- 2024
15. Evolving evidence for relationships between periodontitis and systemic diseases: Position paper from the Canadian Dental Hygienists Association.
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Lavigne, Salme E.
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OBESITY ,CHRONIC kidney failure ,ALZHEIMER'S disease ,META-analysis ,PERIODONTITIS ,INFLAMMATION ,ORAL health ,SYSTEMATIC reviews ,RHEUMATOID arthritis ,TUMORS ,CAUSALITY (Physics) ,DISEASE complications - Abstract
Copyright of Canadian Journal of Dental Hygiene is the property of Canadian Dental Hygienists Association and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
- Published
- 2022
16. Feature Papers "Age-Friendly Cities & Communities: State of the Art and Future Perspectives"
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van Hoof, Joost, Marston, Hannah R., and van Hoof, Joost
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Humanities ,Social interaction ,AFCCQ ,Age-Friendly Cities ,COVID-19 ,Cochrane ,Coronavirus ,Global Network of Age-Friendly Cities and Communities ,ICT ,Kazan ,Polynesian population ,Romania ,Russia ,Tāmaki Makaurau Auckland ,Te Tiriti o Waitangi ,UK ,World Health Organization ,active ageing ,age in place ,age-friendliness ,age-friendly ,age-friendly cities ,age-friendly cities and communities ,age-friendly communities ,age-friendly homes ,age-friendly transport ,age-friendly urban public transport ,ageing ,ageism ,aging ,aging in place ,ambient assisted living ,assisted living facilities ,awareness ,care services models ,case studies ,citizen science ,cluster analysis ,co-creation ,community ,connectedness ,consultation-liaison psychiatry ,consumers ,cooling ,coronavirus ,cross-cultural research ,cycling ,daily life activities monitoring ,dementia ,design guidelines ,design hacking ,digital ,digital citizenship ,digital data layer ,digital technology ,displacement ,dwellings ,e-health ,elderly ,environmental design ,evaluating smart cities initiatives ,evidence-based ,ex-prisoners ,experiments ,family ,gender ,general hospital ,gentrification ,gerontechnology ,gerontology ,governance ,group living ,health ,health information ,healthy ageing ,heating ,homes ,housing ,human centred design ,human-centered design ,indicators ,innovation ,intergenerational communication ,internet of things ,isolation ,later life ,law ,loneliness ,long-term care ,machine learning ,medicines ,mobility justice ,n/a ,neighbourhoods ,older adults ,older adults care ,older citizens ,older offenders ,older people ,organizational environment ,participation ,participatory action research ,participatory video design ,patent ,person-centered care ,personalised ageing ,perspective of older adults ,photovoice ,physical activity ,physical environment ,physical environment/space ,planning ,policy ,prisoners ,prisons ,psycho-geriatrics ,public policies on smart cities ,qualitative research ,quality improvement ,quality of life ,questionnaire ,rebellion ,regulations ,relational leadership ,review ,rural planning ,seniors ,smart ageing ,smart cities ,smart cities initiatives ,smart city ,smart ecosystem ,smart islands ,smart mobility ,social environment ,social inclusion ,social isolation ,social prescribing ,social relationships ,social robots ,spatial ,survey ,technology ,technology limitation and acceptance ,thermal comfort ,tools ,urban ageing ,urban planning ,urbanisation ,use of technology ,validation ,walking ,wearable technology ,well-being - Abstract
Summary: The "Age-Friendly Cities & Communities: States of the Art and Future Perspectives" publication presents contemporary, innovative, and insightful narratives, debates, and frameworks based on an international collection of papers from scholars spanning the fields of gerontology, social sciences, architecture, computer science, and gerontechnology. This extensive collection of papers aims to move the narrative and debates forward in this interdisciplinary field of age-friendly cities and communities.
17. Research paper does not show causal link between benzodiazepine use and diagnosis of dementia.
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Coyle-Gilchrist IT, Peck LF, and Rowe JB
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- Female, Humans, Male, Benzodiazepines adverse effects, Dementia chemically induced
- Published
- 2012
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18. Research paper most likely shows that benzodiazepines are used to treat early symptoms of dementia.
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Bocti C, Roy-Desruisseaux J, and Roberge P
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- Female, Humans, Male, Benzodiazepines adverse effects, Dementia chemically induced
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- 2012
- Full Text
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19. Topics in dementia: papers from the WFN-RGACD 2010 meeting. Introduction.
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Manes F
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- Humans, Neuropsychological Tests statistics & numerical data, Psychomotor Performance, Dementia diagnosis, Dementia psychology
- Published
- 2012
- Full Text
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20. ACNP White Paper: update on use of antipsychotic drugs in elderly persons with dementia.
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Jeste DV, Blazer D, Casey D, Meeks T, Salzman C, Schneider L, Tariot P, and Yaffe K
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- Antipsychotic Agents classification, Humans, Meta-Analysis as Topic, Randomized Controlled Trials as Topic, Antipsychotic Agents therapeutic use, Dementia drug therapy, Dementia epidemiology, Geriatrics
- Abstract
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.
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- 2008
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21. How Many People Live with Dementia in Portugal? A Discussion Paper of National Estimates
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Manuel Gonçalves-Pereira, Ana Verdelho, Matthew Prina, Maria João Marques, and Miguel Xavier
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dementia ,alzheimer disease ,epidemiology ,populational study ,community ,older people ,Public aspects of medicine ,RA1-1270 - Abstract
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.
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- 2021
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22. Smoking and dementia in male British doctors. Paper shows politically engaged research on smoking.
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Calinas-Correia J
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- Age of Onset, Humans, Male, Alzheimer Disease etiology, Dementia etiology, Smoking adverse effects
- Published
- 2000
23. Research Hotspots and Trends in Music Therapy Intervention for Patients With Dementia: A Bibliometrics and Visual Analysis of Papers Published From 2010 to 2021
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Shao Yin, Fengya Zhu, Zhao Li, Deya Che, Liuying Li, Lu Zhang, Yue Zhong, Biao Luo, and Xiaohan Wu
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dementia ,music therapy ,research hotspots ,bibliometric analysis ,biclustering analysis ,CiteSpace ,Psychiatry ,RC435-571 - Abstract
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.
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- 2022
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24. 2014 Update of the Alzheimer's Disease Neuroimaging Initiative: A review of papers published since its inception
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Weiner, Michael W, Veitch, Dallas P, Aisen, Paul S, Beckett, Laurel A, Cairns, Nigel J, Cedarbaum, Jesse, Green, Robert C, Harvey, Danielle, Jack, Clifford R, Jagust, William, Luthman, Johan, Morris, John C, Petersen, Ronald C, Saykin, Andrew J, Shaw, Leslie, Shen, Li, Schwarz, Adam, Toga, Arthur W, Trojanowski, John Q, and Initiative, Alzheimer's Disease Neuroimaging
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Biological Psychology ,Biomedical and Clinical Sciences ,Psychology ,Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD) ,Acquired Cognitive Impairment ,Clinical Research ,Clinical Trials and Supportive Activities ,Biomedical Imaging ,Neurosciences ,Dementia ,Prevention ,Alzheimer's Disease ,Aging ,Neurodegenerative ,Brain Disorders ,4.1 Discovery and preclinical testing of markers and technologies ,4.2 Evaluation of markers and technologies ,2.1 Biological and endogenous factors ,Neurological ,Alzheimer Disease ,Biomarkers ,Brain ,Early Diagnosis ,Humans ,Multicenter Studies as Topic ,Nootropic Agents ,Radionuclide Imaging ,Alzheimer's Disease Neuroimaging Initiative ,Alzheimer's disease ,Amyloid ,Biomarker ,Mild cognitive impairment ,Tau ,Clinical Sciences ,Geriatrics ,Clinical sciences ,Biological psychology - Abstract
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.
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- 2015
25. Cognitive impairment in patients with cerebrovascular disease: A white paper from the links between stroke ESO Dementia Committee
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Hugues Chabriat, Geert Jan Biessels, Marco Duering, Joanna M. Wardlaw, Olivier Godefroy, Leonardo Pantoni, Ana Verdelho, Andreas Charidimou, Aleksandra M. Pavlović, and Repositório da Universidade de Lisboa
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medicine.medical_specialty ,Review ,030204 cardiovascular system & hematology ,03 medical and health sciences ,0302 clinical medicine ,White paper ,Physical medicine and rehabilitation ,Medicine ,Dementia ,In patient ,cardiovascular diseases ,Cerebrovascular disease ,Cognitive impairment ,Stroke ,business.industry ,medicine.disease ,Small vessel disease ,3. Good health ,Neurology (clinical) ,Cardiology and Cardiovascular Medicine ,business ,030217 neurology & neurosurgery - Abstract
© European Stroke Organisation 2021, Purpose: Many daily-life clinical decisions in patients with cerebrovascular disease and cognitive impairment are complex. Evidence-based information sustaining these decisions is frequently lacking. The aim of this paper is to propose a practical clinical approach to cognitive impairments in patients with known cerebrovascular disease. Methods: The document was produced by the Dementia Committee of the European Stroke Organisation (ESO), based on evidence from the literature where available and on the clinical experience of the Committee members. This paper was endorsed by the ESO. Findings: Many patients with stroke or other cerebrovascular disease have cognitive impairment, but this is often not recognized. With improvement in acute stroke care, and with the ageing of populations, it is expected that more stroke survivors and more patients with cerebrovascular disease will need adequate management of cognitive impairment of vascular etiology. This document was conceived for the use of strokologists and for those clinicians involved in cerebrovascular disease, with specific and practical hints concerning diagnostic tools, cognitive impairment management and decision on some therapeutic options. Discussion and conclusions: It is essential to consider a possible cognitive deterioration in every patient who experiences a stroke. Neuropsychological evaluation should be adapted to the clinical status. Brain imaging is the most informative biomarker concerning prognosis. Treatment should always include adequate secondary prevention.
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- 2021
26. Interventions that may increase control at the end of life in persons with dementia: the cross-cultural CONT-END acceptability study protocol and pilot-testing.
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Smaling HJA, Jingyuan X, Nakanishi M, Shinan-Altman S, Mehr DR, Radbruch L, Gaertner J, Werner P, Achterberg WP, and van der Steen JT
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- Humans, Aged, Cross-Sectional Studies, Pilot Projects, Death, Cross-Cultural Comparison, Dementia therapy
- Abstract
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.)
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- 2023
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27. The psychosocial impact of childhood dementia on children and their parents: a systematic review.
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Nevin SM, McGill BC, Kelada L, Hilton G, Maack M, Elvidge KL, Farrar MA, Baynam G, Katz NT, Donovan L, Grattan S, Signorelli C, Bhattacharya K, Nunn K, and Wakefield CE
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- Humans, Child, Adaptation, Psychological, Databases, Factual, Parents, Rare Diseases, Quality of Life, Dementia
- Abstract
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).)
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- 2023
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28. Montessori Elder and Dementia Care, and Trauma-Informed Approaches: A Thematic Analysis Examining Connections between the Models
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Bernadette Phillips
- Abstract
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.
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- 2023
29. The Alzheimer's Disease Neuroimaging Initiative: A review of papers published since its inception
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Weiner, Michael W, Veitch, Dallas P, Aisen, Paul S, Beckett, Laurel A, Cairns, Nigel J, Green, Robert C, Harvey, Danielle, Jack, Clifford R, Jagust, William, Liu, Enchi, Morris, John C, Petersen, Ronald C, Saykin, Andrew J, Schmidt, Mark E, Shaw, Leslie, Shen, Li, Siuciak, Judith A, Soares, Holly, Toga, Arthur W, Trojanowski, John Q, and Initiative, Alzheimer's Disease Neuroimaging
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Biological Psychology ,Biomedical and Clinical Sciences ,Psychology ,Neurodegenerative ,Aging ,Brain Disorders ,Biomedical Imaging ,Prevention ,Dementia ,Alzheimer's Disease including Alzheimer's Disease Related Dementias (AD/ADRD) ,Acquired Cognitive Impairment ,Clinical Research ,Alzheimer's Disease ,Neurosciences ,Detection ,screening and diagnosis ,4.1 Discovery and preclinical testing of markers and technologies ,Neurological ,Alzheimer Disease ,Early Diagnosis ,Humans ,Multicenter Studies as Topic ,Neuroimaging ,United States ,Clinical and Health Psychology ,Mental Health ,Post-Traumatic Stress Disorder (PTSD) ,Traumatic Brain Injury (TBI) ,Physical Injury - Accidents and Adverse Effects ,Traumatic Head and Spine Injury ,Anxiety Disorders ,Injuries and accidents ,Good Health and Well Being ,Afghan Campaign 2001- ,Biomarkers ,Blast Injuries ,Brain Damage ,Chronic ,Brain Injuries ,Databases ,Factual ,Government Programs ,Iraq War ,2003-2011 ,Military Medicine ,Military Personnel ,National Institute of Neurological Disorders and Stroke (U.S.) ,Risk Factors ,Stress Disorders ,Post-Traumatic ,United States Department of Defense ,United States Department of Veterans Affairs ,Veterans Health ,Alzheimer's disease ,Risk factors ,Military medicine ,Traumatic brain injury ,Posttraumatie stress disorder ,Tau ,Beta-amyloid ,Apolipoprotein E e4 ,Alzheimer's Disease Neuroimaging Initiative ,Vietnam ,Veterans ,Chronic traumatic encephalopathy ,Blast injury ,Clinical Sciences ,Geriatrics ,Clinical sciences ,Biological psychology - Abstract
Traumatic brain injury (TBI) and post-traumatic stress disorder (PTSD) are signature injuries of the wars in Iraq and Afghanistan and have been linked to an increased risk of Alzheimer's disease (AD) and other dementias. A meeting hosted by the Alzheimer's Association and the Veterans' Health Research Institute (NCIRE) in May 2012 brought together experts from the U.S. military and academic medical centers around the world to discuss current evidence and hypotheses regarding the pathophysiological mechanisms linking TBI, PTSD, and AD. Studies underway in civilian and military populations were highlighted, along with new research initiatives such as a study to extend the Alzheimer's Disease Neuroimaging Initiative (ADNI) to a population of veterans exposed to TBI and PTSD. Greater collaboration and data sharing among diverse research groups is needed to advance an understanding and appropriate interventions in this continuum of military injuries and neurodegenerative disease in the aging veteran.
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- 2013
30. Co-design of the EMBED-Care Framework as an intervention to enhance shared decision-making for people affected by dementia and practitioners, comprising holistic assessment, linked with clinical decision support tools: A qualitative study.
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Aworinde J, Evans CJ, Gillam J, Ramsenthaler C, Davies N, and Ellis-Smith C
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- Humans, Decision Making, Shared, Caregivers, Qualitative Research, Decision Support Systems, Clinical, Dementia therapy, Dementia diagnosis
- Abstract
Introduction: Shared decision-making intends to align care provision with individuals' preferences. However, the involvement of people living with dementia in decision-making about their care varies. We aimed to co-design the EMBED-Care Framework, to enhance shared decision-making between people affected by dementia and practitioners., Methods: A theory and evidence driven co-design study was conducted, using iterative workshops, informed by a theoretical model of shared decision-making and the EMBED-Care Framework (the intervention) for person-centred holistic palliative dementia care. The intervention incorporates a holistic outcome measure for assessment and review, linked with clinical decision-support tools to support shared decision-making. We drew on the Medical Research Council (MRC) guidance for developing and evaluating complex interventions. Participants included people with dementia of any type, current or bereaved family carers and practitioners. We recruited via established dementia groups and research and clinical networks. Data were analysed using reflexive thematic analysis to explore how and when the intervention could enhance communication and shared decision-making, and the requirements for use, presented as a logic model., Results: Five co-design workshops were undertaken with participants comprising people affected by dementia (n = 18) and practitioners (n = 36). Three themes were generated, comprising: (1) 'knowing the person and personalisation of care', involving the person with dementia and/or family carer identifying the needs of the person using a holistic assessment. (2) 'engaging and considering the perspectives of all involved in decision-making' required listening to the person and the family to understand their priorities, and to manage multiple preferences. (3) 'Training and support activities' to use the Framework through use of animated videos to convey information, such as to understand the outcome measure used to assess symptoms., Conclusions: The intervention developed sought to enhance shared decision-making with individuals affected by dementia and practitioners, through increased shared knowledge of individual priorities and choices for care and treatment. The workshops generated understanding to manage disagreements in determining priorities. Practitioners require face-to-face training on the intervention, and on communication to manage sensitive conversations about symptoms, care and treatment with individuals and their family. The findings informed the construction of a logic model to illustrate how the intervention is intended to work., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)
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- 2024
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31. Patient and public involvement and engagement with underserved communities in dementia research: Reporting on a partnership to co-design a website for postdiagnostic dementia support.
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Di Lorito C, Griffiths S, Poole M, Kaviraj C, Robertson M, Cutler N, and Wilcock J
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- Female, Humans, Patients, Minority Groups, Patient Participation, Sexual and Gender Minorities, Dementia diagnosis, Dementia therapy
- Abstract
Introduction: Despite the advancements in Patient and Public Involvement and Engagement (PPIE), the voices of traditionally underserved groups are still poorly reflected in dementia research. This study aimed to report on a PPIE partnership between academics and members of the public from underserved communities to co-design Forward with Dementia-Social Care, a resource and information website supporting people receiving a dementia diagnosis., Methods: The PPIE partnership was set up in four stages: 1-identifying communities that have been under-represented from PPIE in dementia research; 2-recruiting PPIE partners from these communities; 3-supporting PPIE partners to become confident to undertake their research roles and 4-undertaking research co-design activities in an equitable fashion., Results: To address under-representation from PPIE in dementia research we recruited seven PPIE partners from Black, Asian and other minority ethnic groups; lesbian, gay, bisexual, transgender, queer+ communities; remote/rural area; religious minorities and partners living with rare forms of dementia. The partners met regularly throughout the project to oversee new sections for the study website, refine existing content and promote the website within their communities., Conclusion: Strategies can be used to successfully recruit and involve PPIE partners from underserved communities in co-design activities. These include networking with community leaders, developing terms of reference, setting out 'rules of engagement', and investing adequate resources and time for accessible and equitable involvement. These efforts facilitate the co-design of research outputs that reflect the diversity and complexity of UK contemporary society., Patient or Public Contribution: This study received support from seven members of the public with lived experience of dementia from communities that have been traditionally underserved in dementia research. These seven members of the public undertook the role of partners in the study. They all equally contributed to the study design, recruitment of participants, development and revision of topic guides for the interviews and development of the website. Three of these partners were also co-authors of this paper. On top of the activities shared with the other partners, they contributed to write independently of the academic team the section in this paper titled 'Partners' experiences, benefits and challenges of the partnership'. Further, they provided input in other sections of the paper on a par with the other (academic) co-authors., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)
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- 2024
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32. Predictors of live-in migrant caregiver employment for people with dementia in Taiwan.
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Li JR, Tsai CF, Huang MH, Lee JJ, Wang WF, Huang LC, Hsu CC, Lin YS, Kuo YS, and Fuh JL
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- Humans, Caregivers psychology, Taiwan, Employment, Lewy Body Disease psychology, Dementia, Transients and Migrants
- Abstract
Background: With the increasing number of individuals with dementia, families have hired an increasing number of live-in migrant caregivers (LIMCs). Currently, limited evidence is available regarding the influence of long-term care resource utilization on the hiring of LIMCs for caring for individuals with dementia in Taiwan., Methods: We recruited individuals with dementia who did not hire LIMCs and their primary family caregivers from nine hospitals in Taiwan as baseline. Multivariable logistic regression was used to evaluate the utilization of long-term care resources for individuals with dementia and other factors that may affect the decision to hire LIMCs., Results: The users of non-long-term care resources had the highest likelihood of hiring LIMCs (odds ratio [OR] = 4.24, 95% CI, 2.30-7.84). Compared with spouses, nonimmediate family caregivers (OR = 3.40, 95% CI, 1.16-9.90) were significantly more likely to hire LIMCs. A higher likelihood of hiring LIMCs was observed for those with Lewy body dementia compared with other individuals (OR = 2.31, 95% CI, 1.03-5.14). Compared with individuals who did not hire LIMCs, those who hired LIMCs exhibited higher scores on the Neuropsychiatric Inventory (NPI) and higher severity of individual NPI items., Conclusion: Hiring LIMCs is strongly correlated with the utilization of non-long-term care resources and is influenced by the dynamics between individuals with dementia and their primary family caregivers. A higher likelihood of hiring LIMCs was observed for individuals with Lewy body dementia and individuals with elevated NPI scores compared with their counterparts. Given these observations, various support strategies and interventions should be tailored to the specific requirements of individuals with dementia and their families., Competing Interests: Conflicts of interest: Dr. Jong-Ling Fuh, an editorial board member at Journal of the Chinese Medical Association, had no role in the peer review process of or decision to publish this article. The other authors declare that they have no conflicts of interest related to the subject matter or materials discussed in this article., (Copyright © 2023, the Chinese Medical Association.)
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- 2024
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33. Person-centred caregiver singing for people living with dementia in South Africa: A mixed methods evaluation of acceptability, feasibility, and professional caregivers' experiences.
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Stuart-Röhm K, Clark IN, and Baker FA
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- Humans, South Africa, Male, Female, Surveys and Questionnaires, Middle Aged, Feasibility Studies, Adult, Aged, Dementia therapy, Caregivers psychology, Singing, Patient-Centered Care
- Abstract
Background: Dementia care in South Africa faces challenges including a paucity of published research, a prevalent medical model in healthcare, and inadequate caregiver training. Music is a meaningful psychosocial intervention in dementia care, yet its application is not always safe and effective. A training protocol was codesigned to enhance caregivers' delivery of person-centred care through attuned, live singing., Objectives: This study explored the acceptability and caregivers' experiences of a person-centred caregiver singing (PCCS) protocol in South Africa., Methods: A PCCS workshop was applied at seven aged care homes in Cape Town, South Africa. Forty-one formal caregivers adhered to inclusion criteria and consented to attend one workshop on PCCS. Mixed methods data collection was obtained from questionnaires containing a Likert scale and written reflections. Quantitative data were analysed through nonparametric tests and narrative descriptions, and qualitative data through thematic content analysis. Findings were integrated deductively using seven components of acceptability., Results: Findings converged to show caregivers' positive experiences, highlighting observed improvements in residents' wellbeing, caregivers' capabilities, empathic connection, and person-centred care beyond the one-on-one. Caregivers' limited song repertoire and residents' unpredictability hindered implementation, however, the skills acquired appeared useful and applicable., Conclusions: Integration of findings suggests the acceptability of PCCS as caregivers experienced PCCS as a helpful, easy-to-implement intervention that contributes to their delivery of person-centred care. Further research focused on caregiver self-efficacy, empathy, and caregivers' own personhood is needed as well as determining the most effective strategies to ensure maximum uptake and sustainability in the sector., Patient or Public Contribution: Formal caregivers participated in this study, both attending the training and implementing the singing protocol with residents in their care at their respective care homes. The people living with dementia residing at the care home were recipients of the singing protocol but not included as participants in the research., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)
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- 2024
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34. Embedding music and music therapy in care pathways for people with dementia in the 21st century - a position paper
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Helen Odell-Miller
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Improvisation ,Music therapy ,05 social sciences ,Perspective (graphical) ,Psychological intervention ,06 humanities and the arts ,medicine.disease ,behavioral disciplines and activities ,050105 experimental psychology ,humanities ,060404 music ,BF1-990 ,Position (obstetrics) ,medicine ,Position paper ,Dementia ,Psychology ,0501 psychology and cognitive sciences ,M1-5000 ,human activities ,0604 arts ,Music ,Cognitive psychology - Abstract
Unique music therapy interventions are discussed from a clinical educational and research perspective, demonstrating a current position on music therapy for people living with dementia and their carers. The position paper, adapted from the keynote lecture given at the workshop “Music Selves and Societies” at Cambridge University in 2018, outlines current research and practice across music and music therapy fields, focussing upon embedding music in daily life and care for people living with dementia. Worldwide, around 50m people have dementia; this is estimated to increase to 75.6m in 2030 and 135.5m in 2050. This results in increased demand for long-term care and a need for heightened awareness and capacity for home care in local settings. Distinctions between interventions delivered by music therapists (direct music therapy) and interventions delivered by musicians or carers arising from training from music therapists (indirect music therapy) are discussed. Political and strategic developments for music and dementia are summarized, highlighting the need for increased training in the field and access to music at all stages of dementia. Case study examples are presented to highlight emerging practices and research; for example, couples attending music therapy groups in a rural community setting (Together in Sound) improved relationships and attitudes for people living with dementia. An international trial investigating reading and music interventions for people living with dementia and their homebased family carers (Homeside) is introduced, alongside practice and research in care homes where music therapy had been found to reduce agitation and improve carers’ well-being. Research shows music therapy interventions address personalized needs linked to daily lived experiences. However, indirect music therapy is needed to reach all who can benefit from music and are living with dementia. It is concluded that high quality, accessible music interventions should be embedded in care, and further research is needed to ascertain best practice.
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- 2021
35. Italian guidance on Dementia Day Care Centres: A position paper
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Mossello, Enrico, Baccini, Marco, Caramelli, Francesca, Biagini, Carlo Adriano, Cester, Alberto, De Vreese, Luc Pieter, Darvo, Gianluca, Vampini, Claudio, Gotti, Mabel, Fabbo, Andrea, Marengoni, Alessandra, Cavallini, Maria Chiara, Gori, Guido, Chattat, Rabih, Marini, Monica, Ceron, Davide, Lanzoni, Alessandro, Pizziolo, Paolo, Mati, Andrea, Zilli, Iole, Cantini, Claudia, Caleri, Veronica, Tonon, Elisabetta, Simoni, David, Mecocci, Patrizia, Ungar, Andrea, and Masotti, Giulio
- Subjects
Dementia day care centre ,Aging ,Long-term care ,Behavioural symptoms ,Dementia ,Caregiver ,Geriatrics and Gerontology - Abstract
Dementia Day Care Centres (DDCCs) are defined as services providing care and rehabilitation to people with dementia associated with behavioural and psychological symptoms (BPSD) in a semi-residential setting. According to available evidence, DDCCs may decrease BPSD, depressive symptoms and caregiver burden. The present position paper reports a consensus of Italian experts of different disciplines regarding DDCCs and includes recommendations about architectural features, requirements of personnel, psychosocial interventions, management of psychoactive drug treatment, prevention and care of geriatric syndromes, and support to family caregivers. DDCCs architectural features should follow specific criteria and address specific needs of people with dementia, supporting independence, safety, and comfort. Staffing should be adequate in size and competence and should be able to implement psychosocial interventions, especially focused on BPSD. Individualized care plan should include prevention and treatment of geriatric syndromes, a targeted vaccination plan for infectious diseases including COVID-19, and adjustment of psychotropic drug treatment, all in cooperation with the general practitioner. Informal caregivers should be involved in the focus of intervention, with the aim of reducing assistance burden and promoting the adaptation to the ever-changing relationship with the patient.
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- 2023
36. Cerebrovascular disease in patients with cognitive impairment: A white paper from the ESO dementia committee - A practical point of view with suggestions for the management of cerebrovascular diseases in memory clinics
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Aleksandra M. Pavlović, Hugues Chabriat, Andreas Charidimou, Ana Verdelho, Joanna M. Wardlaw, Leonardo Pantoni, Marco Duering, Olivier Godefroy, and Geert Jan Biessels
- Subjects
medicine.medical_specialty ,small vessel disease ,Vascular disease ,business.industry ,Review ,medicine.disease ,stroke ,3. Good health ,03 medical and health sciences ,0302 clinical medicine ,Physical medicine and rehabilitation ,White paper ,medicine ,Dementia ,In patient ,030212 general & internal medicine ,Neurology (clinical) ,Cerebrovascular disease ,Cardiology and Cardiovascular Medicine ,Cognitive impairment ,business ,Stroke ,030217 neurology & neurosurgery ,cognitive impairment ,dementia - Abstract
Purpose Practical suggestions on clinical decisions about vascular disease management in patients with cognitive impairment are proposed. Methods The document was produced by the Dementia Committee of the European Stroke Organisation (ESO) based on the evidence from the literature where available and on the clinical experience of the Committee members. This paper was endorsed by the ESO. Findings Vascular risk factors and cerebrovascular disease are frequent in patients with cognitive impairment. While acute stroke treatment has evolved substantially in last decades, evidence of management of cerebrovascular pathology beyond stroke in patients with cognitive impairment and dementia is quite limited. Additionally, trials to test some daily-life clinical decisions are likely to be complex, difficult to undertake and take many years to provide sufficient evidence to produce recommendations. This document was conceived to provide some suggestions until data from field trials are available. It was conceived for the use of clinicians from memory clinics or involved specifically in cognitive disorders, addressing practical aspects on diagnostic tools, vascular risk management and suggestions on some therapeutic options. Discussion and conclusions The authors did not aim to do an exhaustive or systematic review or to cover all current evidence. The document approach in a very practical way frequent issues concerning cerebrovascular disease in patients with known cognitive impairment.
- Published
- 2020
37. Cognitive functioning and prevalence of seizures among older persons in Uganda: A hospital-based, cross-sectional study.
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Kaddumukasa M, Bongomin F, Mugenyi L, Kiyingi M, Katabira E, and Sajatovic M
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- Aged, Aged, 80 and over, Cross-Sectional Studies, Female, Hospitals, Humans, Male, Prevalence, Seizures epidemiology, Uganda epidemiology, Cognition, Dementia
- Abstract
There is limited data on the prevalence of seizures and dementia among older persons in Uganda. We evaluated cognitive functioning, and the prevalence and factors associated with seizures among older persons attending an outpatient medical clinic in Uganda. We randomly selected older adults (60 years and above) attending Kiruddu National Referral Hospital medical outpatient clinics between October 2020 and March 2021. We excluded individuals with a history of head injury, brain tumors, mental retardation, co-morbidity with HIV and patients who have had recent brain surgery. Cognitive functioning was assessed using the Identification for Dementia in Elderly Africans (IDEA) tool. We enrolled 407 participants, with a median (inter-quartile range) age of 67 (64-73) years. Majority were female (n = 292, 71.7%). The prevalence of seizure was 1.5% (95% confidence interval [CI]: 0.7-3.3). All 6 participants reported generalized tonic-clonic seizure type. Self-reported seizure was associated with being female (adjusted prevalence ratio [aPR]: 0.79, 95%CI: 0. 67-0.93, P = .02) and residing in Mukono district (aPR: 17.26, 95%CI: 1.64-181.55, P = .018). Overall, 114 (28.1%) participants had cognitive deficit; 9 (2.2%) dementia and 105 (25.9%) impaired cognition. Cognitive deficit was independently associated with female gender (aPR: 0.61, 95%CI: 0.44-0.85, P = .003), formal employment (aPR: 0.53, 95%CI: 0.35-0.81, P = .003), age 70-74 (aPR: 1.69, 95%CI: 1.00-2.86, P = .049), and ≥ 75 years (aPR: 2.81, 95%CI: 1.71-4.61, P = .001). Prevalence of seizures among participants with cognitive deficit was 5.3% (6/114). Among older persons attending a medical clinic in Uganda, almost one-third had cognitive deficit with seizure prevalence being higher among these individuals., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2022 the Author(s). Published by Wolters Kluwer Health, Inc.)
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- 2022
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38. Flaws in advance directives that request withdrawing assisted feeding in late-stage dementia may cause premature or prolonged dying.
- Author
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Terman SA, Steinberg KE, and Hinerman N
- Subjects
- Advance Directives, Humans, Paternalism, Personal Autonomy, Proxy, Dementia
- Abstract
Background: The terminal illness of late-stage (advanced) Alzheimer's and related dementias is progressively cruel, burdensome, and can last years if caregivers assist oral feeding and hydrating. Options to avoid prolonged dying are limited since advanced dementia patients cannot qualify for Medical Aid in Dying. Physicians and judges can insist on clear and convincing evidence that the patient wants to die-which many advance directives cannot provide. Proxies/agents' substituted judgment may not be concordant with patients' requests. While advance directives can be patients' last resort to attain a peaceful and timely dying consistent with their lifelong values, success depends on their being effective and acceptable. A single flaw can provide opponents justification to refuse the directive's requests to cease assisted feeding., Aim: This article considers 24 common advance directive flaws in four categories. Process flaws focus on how patients express their end-of-life wishes. Content flaws reflect drafters' selection of conditions and interventions, and how they are described. Inherent flaws can make advance directives unacceptable to authorities concerned about premature dying. Strategies are needed to compel physicians to write needed orders and to prevent third parties from sabotaging these orders after they are implemented. The article includes excerpts from "dementia-specific" directives or supplements that exemplify each flaw-mostly from the US and Europe. No directive critiqued here included an effective strategy to resolve this long-debated bioethical conflict: the past directive requests "Cease assisted feeding" but the incapacitated patient apparently expresses the desire to "Continue assisted feeding." Some opponents to the controversial request, cease assisted feeding, use this conflict as a conceptual wedge to practice hard paternalism. This article proposes a protocol to prevent this conflict from emerging. These strategies may prevent authorities from requiring patients to fulfill authorities' additional clinical criteria as a prerequisite to honor the requests in patients directives., Conclusion: This critique of flaws may serve as a guide to drafting and to selecting effective and acceptable advance directives for dementia. It also poses several bioethical and clinical questions to those in authority: Does your paternalistic refusal to honor patients' wishes respect their self-determination? Protect vulnerable patients from harm? Force patients to endure prolonged suffering? Violate the principles of bioethics? Violate the very foundation of patient-centered care?, (© 2022. The Author(s).)
- Published
- 2022
- Full Text
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39. Does Your Loved One With Cognitive Symptoms Need to See a Doctor? Check It Online.
- Author
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Agüera-Ortiz, Luis, Martín-Carrasco, Manuel, Arriola-Manchola, Enrique, Martínez-Lage, Pablo, Andrés Pérez-Martínez, David, Ojea, Tomás, Soler-López, Begoña, and García-Ribas, Guillermo
- Subjects
ALZHEIMER'S disease ,PHYSICIANS ,SYMPTOMS ,ELECTRONIC paper ,INFORMATION & communication technologies - Abstract
Widespread access to emerging information and communication technologies (ICT) allows its use for the screening of diseases in the general population. At the initiative of the Spanish Confederation of Associations of Families of People with Alzheimer's disease and other dementias (CEAFA), a website (http://www.problemasmemoria.com) has been created that provides information about Alzheimer's disease and includes questionnaires to be completed by family or friends concerned about memory problems of a relative. A cross-sectional, randomized, multicenter study was performed to evaluate feasibility, validity, and user satisfaction with an electronic method of completion vs. the current method of paper-based questionnaires for clinically dementia screening completed by the informants: the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE) and the Alzheimer's disease-8 screening test (AD8). A total of 111 pairs were recruited by seven memory clinics. Informants completed IQCODE and AD8 questionnaires both in their paper and electronic versions. The correlation between paper and electronic versions was significantly positive for IQCODE (r = 0.98; p < 0.001) and AD8 (r = 0.96; p < 0.001). The execution time did not differ significantly, and participants considered their use equally easy. This study shows that an electronic version of the IQCODE and AD8 questionnaires is suitable for its online use via the internet and achieves the same results as the traditional paper versions. [ABSTRACT FROM AUTHOR]
- Published
- 2022
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40. United Kingdom : National conversation to inform a new dementia strategy: discussion paper
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Dementia ,Business, international - Abstract
his is a discussion paper developed by the Scottish Government to help you respond to our National Conversation on the future of dementia policy in Scotland. Who is it for? [...]
- Published
- 2022
41. The Rogdi knockout mouse is a model for Kohlschütter-Tönz syndrome.
- Author
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Jimenez-Armijo A, Morkmued S, Ahumada JT, Kharouf N, de Feraudy Y, Gogl G, Riet F, Niederreither K, Laporte J, Birling MC, Selloum M, Herault Y, Hernandez M, and Bloch-Zupan A
- Subjects
- Humans, Animals, Mice, Seizures, Mutation, Membrane Proteins genetics, Nuclear Proteins genetics, Amelogenesis Imperfecta genetics, Epilepsy, Dementia, Tooth Abnormalities
- Abstract
Kohlschütter-Tönz syndrome (KTS) is a rare autosomal recessive disorder characterized by severe intellectual disability, early-onset epileptic seizures, and amelogenesis imperfecta. Here, we present a novel Rogdi mutant mouse deleting exons 6-11- a mutation found in KTS patients disabling ROGDI function. This Rogdi
-/- mutant model recapitulates most KTS symptoms. Mutants displayed pentylenetetrazol-induced seizures, confirming epilepsy susceptibility. Spontaneous locomotion and circadian activity tests demonstrate Rogdi mutant hyperactivity mirroring patient spasticity. Object recognition impairment indicates memory deficits. Rogdi-/- mutant enamel was markedly less mature. Scanning electron microscopy confirmed its hypomineralized/hypomature crystallization, as well as its low mineral content. Transcriptomic RNA sequencing of postnatal day 5 lower incisors showed downregulated enamel matrix proteins Enam, Amelx, and Ambn. Enamel crystallization appears highly pH-dependent, cycling between an acidic and neutral pH during enamel maturation. Rogdi-/- teeth exhibit no signs of cyclic dental acidification. Additionally, expression changes in Wdr72, Slc9a3r2, and Atp6v0c were identified as potential contributors to these tooth acidification abnormalities. These proteins interact through the acidifying V-ATPase complex. Here, we present the Rogdi-/- mutant as a novel model to partially decipher KTS pathophysiology. Rogdi-/- mutant defects in acidification might explain the unusual combination of enamel and rare neurological disease symptoms., (© 2024. The Author(s).)- Published
- 2024
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42. Caring for persons with Dementia: a qualitative study of the needs of carers following care recipient discharge from hospital.
- Author
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Du Preez J, Celenza A, Etherton-Beer C, Moffat P, Campbell E, and Arendts G
- Subjects
- Humans, Aged, Patient Discharge, Australia, Hospitals, Caregivers, Dementia therapy
- Abstract
Background: A randomised clinical trial titled the Carer End of Life Planning Intervention (CELPI) in people dying with dementia evaluated the effect of carer education and support about palliative care on care recipient outcomes. We present a pre-planned qualitative analysis of data collected during the CELPI trial in which needs of carers randomised to the study intervention group were assessed using a novel instrument (Carer Needs Directed Assessment in Dementia (CANDID). This tool aimed to identify carers' perceptions of their own and their care-recipients' needs and is an important step in identifying support provision for dementia-specific, palliative cares services upon hospital discharge., Methods: The CANDID tool was designed to identify the needs and experiences of primary carers and of their care recipients during the last twelve months of the care recipient's life. The tool consisted of 33 open-ended questions evaluating: symptom management, emergency contacts, advance care planning, carer's perception of the care recipient's future needs, carer's current needs, and a proposed current and future care plan. The researcher's philosophical assumption of interpretative phenomenology informed the study and approach to data collection and analysis. Qualitative data collected during interviews using this tool were thematically analysed in five steps: compiling, disassembling, reassembling, interpreting and concluding. An interpretation of participants' reality emerged from their common experiences and the subjective meanings assigned to actions attached to the phenomena studied., Results: Thirty carer participants were included. Analysis identified three major themes: Carers' perceived stressors, systemic barriers to care provision, and future planning. Issues identified included barriers to accessing supports, carer health and division between roles, financial burden, familial conflicts, adquate care in hospital and aged care facilities, concern about future needs, and end-of-life discussions., Conclusion: The CANDID tool enabled an evaluation of carer needs and concerns. Identifying those needs may inform a referral to palliative care services where the level of management required may be benenficial for both the person living with dementia and their primary carer., Trial Registration: Australian Clinical Trials Registration: (ACTRN12619001187134)., (© 2023. The Author(s).)
- Published
- 2023
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43. The primary care physician and Alzheimer’s disease: An international position paper
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Villars, H., Oustric, S., Andrieu, S., Baeyens, J. P., Bernabei, R., Brodaty, H., Brummel-Smith, K., Celafu, C., Chappell, N., Fitten, J., Frisoni, G., Froelich, L., Guerin, O., Gold, G., Holmerova, I., Iliffe, S., Lukas, A., Melis, R., Morley, J. E., Nies, H., Nourhashemi, F., Petermans, J., Ribera Casado, J., Rubenstein, L., Salva, A., Sieber, C., Sinclair, A., Schindler, R., Stephan, E., Wong, R. Y., and Vellas, B.
- Published
- 2010
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44. Researchers from Charles University of Prague Report Findings in Alzheimer Disease (Sex and Gender Differences In Alzheimer's Disease: Current Challenges and Implications for Clinical Practice Position Paper of the Dementia and Cognitive ...)
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Women's health -- Reports ,Medical research -- Reports ,Alzheimer's disease -- Development and progression ,Dementia ,Neurodegenerative diseases ,Advertising executives ,Clinical trials ,Editors ,Women ,Diseases ,Health ,Women's issues/gender studies - Abstract
2020 APR 30 (NewsRx) -- By a News Reporter-Staff News Editor at Women's Health Weekly -- Data detailed on Neurodegenerative Diseases and Conditions - Alzheimer Disease have been presented. According [...]
- Published
- 2020
45. Creating Pathways: Why What You Teach Today Will Matter Far into the Future
- Author
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Hendy, Bronwyn
- Abstract
This paper presents an account of current literature on the topic of music and memory, supplemented by qualitative research in the form of interviews with seniors who are living with dementia. Music is a strong memory trigger, often linked with emotion, and stored in parts of the brain that, for most people, still function after other memories have vanished. Strong, sequential aural-vocal musicianship education programs are linked to improvements in children's working memory and ability to retrieve long-term memories, as well as influencing their ability to learn language and better process other subject information. This paper suggests that using music education to give children a greater ability, inclination and aptitude for collecting musical memories across their lifetimes has the potential to increase their quality of life long into the future.
- Published
- 2020
46. A mapping review of barriers and facilitators to a dementia diagnosis adopting an intersectionality lens: A protocol paper
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Farina, Nicolas, Razaghi, Leana, and Hicks, Ben
- Subjects
mapping review ,barriers ,mental disorders ,facilitators ,dementia - Abstract
A protocol paper for a mapping review of the barriers and facilitators to a dementia diagnosis.
- Published
- 2021
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47. DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers (DETERMIND): A protocol paper
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Louise Robinson, Carol Brayne, Margaret Dangoor, Nicolas Farina, Raphael Wittenberg, Martin Knapp, Kate Baxter, Eleanor Miles, Sube Banerjee, Ben Hicks, Alan J. Thomas, Robert Stewart, Sanna Read, Josie Dixon, Yvonne Birks, Jennifer Rusted, Peter R. Harris, Bo Hu, and Rotem Perach
- Subjects
Gerontology ,Inequality ,Cost-Benefit Analysis ,media_common.quotation_subject ,Ethnic group ,Detailed data ,HV Social pathology. Social and public welfare. Criminology ,03 medical and health sciences ,0302 clinical medicine ,Quality of life ,RA0421 Public health. Hygiene. Preventive Medicine ,mental disorders ,medicine ,Humans ,Dementia ,Quality of Health Care ,media_common ,Equity (economics) ,030214 geriatrics ,Theory of change ,medicine.disease ,Psychiatry and Mental health ,Caregivers ,Socioeconomic Factors ,Cohort ,Quality of Life ,Geriatrics and Gerontology ,Psychology - Abstract
Objectives: DETERMIND (DETERMinants of quality of life, care and costs, and consequences of INequalities in people with Dementia and their carers) is designed to address fundamental, and, as yet unanswered, questions about inequalities, outcomes and costs following diagnosis with dementia. These answers are needed to improve the quality of care and equity of access to care, and therefore the quality of life, of people with dementia and their carers.\ud \ud Method: DETERMIND is a programme of research consisting of seven complementary workstreams (WS) exploring various components that may result in unequal dementia care:\ud WS1: Recruitment and follow-up of the DETERMIND cohort - 900 people with dementia and their carers from three geographically and socially diverse sites within six months following diagnosis, and follow them up for three years.\ud WS2: Investigation of the extent of inequalities in access to dementia care\ud WS3: Relationship between use and costs of services and outcomes \ud WS4: Experiences of self-funders of care \ud WS5: Decision-making processes for people with dementia and carers\ud WS6: Effect of diagnostic stage and services on outcomes \ud WS7: Theory of Change informed strategy and actions for applying the research findings\ud \ud Outcomes: During the life of the programme, analysing baseline results and then follow-up of the DETERMIND cohort over 3 years, we will establish evidence on current services and practice. DETERMIND will deliver novel, detailed data on inequalities in dementia care and what drives positive and negative outcomes and costs for people with dementia and carers, and identify factors that help or hinder living well with dementia.
- Published
- 2019
48. Home-based care for people living with dementia at the end of life: the perspective of experts.
- Author
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Pinkert C and Holle B
- Subjects
- Humans, Death, Ambulatory Care, Palliative Care, Home Care Services, Dementia therapy
- Abstract
Background: In the last phase of their lives, people living with dementia often indicate restlessness, anxiety or pain. Further, their care is considered inadequate, as they are, for example, sometimes overtreated for curative care or undertreated for pain management. These patients also face multiple barriers in accessing palliative care. This qualitative study explores the perception of experts about how people living with dementia in Germany are cared for at home toward the end of their lives., Methods: A total of 12 experts involved in outpatient/palliative care were recruited to constitute a purposive, heterogeneous sample. Interviews, which were structured using an interview guide, were conducted with physicians, nurses, representatives of health insurance funds, welfare associations, municipal counselling centres, scientists and coordinators of outpatient palliative care and voluntary work; the interviews were transcribed and analysed via thematic content analysis, based on Kuckartz's method., Results: The analysis of the results led to the establishment of four main categories that focused on formal care arrangements, the roles of relatives in care arrangements, the specifics of dementia, and restrictions on access to palliative care., Conclusions: Suitable end-of-life care for people living with dementia and support for their relatives require resources and the conceptualisation of specific care arrangements to help minimise potential barriers that prevent access to palliative care., (© 2023. BioMed Central Ltd., part of Springer Nature.)
- Published
- 2023
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49. Dementia prediction in the general population using clinically accessible variables: a proof-of-concept study using machine learning. The AGES-Reykjavik study.
- Author
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Twait EL, Andaur Navarro CL, Gudnason V, Hu YH, Launer LJ, and Geerlings MI
- Subjects
- Humans, Female, Aged, Male, Proof of Concept Study, Supervised Machine Learning, Algorithms, Machine Learning, Dementia diagnosis, Dementia epidemiology
- Abstract
Background: Early identification of dementia is crucial for prompt intervention for high-risk individuals in the general population. External validation studies on prognostic models for dementia have highlighted the need for updated models. The use of machine learning in dementia prediction is in its infancy and may improve predictive performance. The current study aimed to explore the difference in performance of machine learning algorithms compared to traditional statistical techniques, such as logistic and Cox regression, for prediction of all-cause dementia. Our secondary aim was to assess the feasibility of only using clinically accessible predictors rather than MRI predictors., Methods: Data are from 4,793 participants in the population-based AGES-Reykjavik Study without dementia or mild cognitive impairment at baseline (mean age: 76 years, % female: 59%). Cognitive, biometric, and MRI assessments (total: 59 variables) were collected at baseline, with follow-up of incident dementia diagnoses for a maximum of 12 years. Machine learning algorithms included elastic net regression, random forest, support vector machine, and elastic net Cox regression. Traditional statistical methods for comparison were logistic and Cox regression. Model 1 was fit using all variables and model 2 was after feature selection using the Boruta package. A third model explored performance when leaving out neuroimaging markers (clinically accessible model). Ten-fold cross-validation, repeated ten times, was implemented during training. Upsampling was used to account for imbalanced data. Tuning parameters were optimized for recalibration automatically using the caret package in R., Results: 19% of participants developed all-cause dementia. Machine learning algorithms were comparable in performance to logistic regression in all three models. However, a slight added performance was observed in the elastic net Cox regression in the third model (c = 0.78, 95% CI: 0.78-0.78) compared to the traditional Cox regression (c = 0.75, 95% CI: 0.74-0.77)., Conclusions: Supervised machine learning only showed added benefit when using survival techniques. Removing MRI markers did not significantly worsen our model's performance. Further, we presented the use of a nomogram using machine learning methods, showing transportability for the use of machine learning models in clinical practice. External validation is needed to assess the use of this model in other populations. Identifying high-risk individuals will amplify prevention efforts and selection for clinical trials., (© 2023. BioMed Central Ltd., part of Springer Nature.)
- Published
- 2023
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50. Tourism, ageing and the demographic time bomb – the implications of dementia for the visitor economy: a perspective paper
- Author
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Joanne Connell and Stephen J. Page
- Subjects
business.industry ,Visitor pattern ,05 social sciences ,Geography, Planning and Development ,Perspective (graphical) ,Creative commons ,Customer relationship management ,Public relations ,medicine.disease ,Tourism, Leisure and Hospitality Management ,0502 economics and business ,medicine ,Dementia ,050211 marketing ,Sociology ,Economic impact analysis ,Attribution ,business ,050212 sport, leisure & tourism ,Tourism - Abstract
Purpose This paper aims to examine the development of research on ageing and demography and the implications for the study of tourism. It examines the demographic time bomb created by an ageing population and the implications of complex health conditions, such as dementia, for the visitor economy. Practical measures are identified with an example of a “call to action” for small to medium-sized tourism businesses. Design/methodology/approach This review is based on existing knowledge of ageing and draws upon a historical timeline that stretches from the nineteenth century to 2100. Findings The impact of complex health conditions such as dementia will pose major challenges for the visitor economy and will require behavioural change within existing business practices to accommodate the needs of people with dementia and their carers. Research limitations/implications Major changes in business practices and the development of more holistic views of accessibility will be needed to accommodate an ageing population in 2100. Some of the initial changes businesses can make are outlined in a “call to action” leaflet extract. Practical implications Businesses will need to focus more on customer care practices to ensure that they can accommodate the complex needs of people with dementia and their carers as they continue to pursue the tourism and leisure activities that they have grown accustomed to. Social implications Businesses will need to become more fully engaged with new agendas on accessibility, inclusivity and good business practice that raise significant ethical, financial and legal issues for the way they do business in the future. Originality/value The paper sets out an overarching grand societal challenge around ageing that is now confronting many countries worldwide. As part of that agenda, this paper raises the issue of hidden conditions such as dementia. The paper seeks to stimulate a wider debate for researchers and policymakers going forward, framed around the following questions which arise from the paper: How is dementia understood as a hidden condition in the visitor economy? To what extent is there awareness and action in the visitor economy sector? What can the visitor economy sector do to address issues of inclusivity and dementia?
- Published
- 2019
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