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Increasing evidence indicates a role of hyperpolarization activated cation (HCN) channels in controlling the resting membrane potential, pacemaker activity, memory formation, sleep, and arousal. Their disfunction may be associated with the development of epilepsy and age-related memory decline. Neuronal hyperexcitability involved in epileptogenesis and EEG desynchronization occur in the course of dementia in human Alzheimer's Disease (AD) and animal models, nevertheless the underlying ionic and cellular mechanisms of these effects are not well understood. Some suggest that theta rhythms involved in memory formation could be used as a marker of memory disturbances in the course of neurogenerative diseases, including AD. This review focusses on the interplay between hyperpolarization HCN channels, theta oscillations, memory formation and their role(s) in dementias, including AD. While individually, each of these factors have been linked to each other with strong supportive evidence, we hope here to expand this linkage to a more inclusive picture. Thus, HCN channels could provide a molecular target for developing new therapeutic agents for preventing and/or treating dementia. [ABSTRACT FROM AUTHOR]

Background and Objectives: People living with dementia have historically been excluded from qualitative research and their voices ignored due to the perception that a person with dementia is not able to express their opinions, preferences and feelings. Research institutions and organizations have contributed by adopting a paternalistic posture of overprotection. Furthermore, traditional research methods have proven to be exclusionary towards this group. The objective of this paper is to address the issue of inclusion of people with dementia in research and provide an evidence-based framework for dementia researchers based on the five principles of human rights: Participation, Accountability, Non-discrimination and equality, Empowerment and Legality (PANEL). Design: This paper adapts the PANEL principles to the research context, and uses evidence from the literature to create a framework for qualitative research in people with dementia. This new framework aims to guide dementia researchers in designing studies around the needs of people with dementia, to improve involvement and participation, facilitate research development and maximize research outcomes. Results: A checklist is presented with questions related to the five PANEL principles. These questions cover ethical, methodological and legal issues that researchers may need to consider while developing qualitative research for people with dementia. Conclusions: The proposed checklist offers a series of questions and considerations to facilitate the development of qualitative research in patients with dementia. It is inspired by current human rights work of recognized dementia researchers and organizations who have been directly involved in policy development. Future studies need to explore its utility in improving participation, facilitating ethics approvals and ensuring that outcomes are relevant to people with dementia. [ABSTRACT FROM AUTHOR]

Many people with dementia are interested in taking part in research, including when they no longer have capacity to provide informed consent. Advance research directives (ARD) enable people to document their wishes about research participation prior to becoming decisionally incapacitated. However, there are few available ARD resources. This Australian interview study elicited the views of people aged 55 years and older about the content of an ARD form and guidance booklet and processes to support research planning. Participants (n = 25; 55 to 83 years) had interests in dementia research. All participants described the ARD materials as easy to understand, and all expressed willingness to take part in future research. Nearly half believed that an ARD should be legally enforceable, while others saw it as a nonbinding document to guide decisions about their participation in research. Close family members were preferred as proxy decision‐makers. The ARD form and guidance booklet may be adapted for use elsewhere. [ABSTRACT FROM AUTHOR]

Plain English Summary The COVID-19 pandemic has impacted the engagement of patients and the public in research. Lockdowns, social distancing, and reduced physical contact have affected the involvement of public contributors in research studies. In particular, the pandemic triggered a rapid transition to digital working, increasing the use of Information and Communication Technologies such as video conferencing on computers and mobile devices. With little time to reflect on the consequences of digital working in PPI and with a continuing legacy of hybrid or blended approaches to involvement, this project highlights the challenges and potential for e-PPI approaches (electronic/digital PPI) within the context of dementia research. In addition to examining the transition to digital working in this area, we present a co-produced framework for researchers, PPI coordinators and public contributors.

Tanja Louise Ibsen,1 Siren Eriksen1,2 1Norwegian National Advisory Unit on Aging and Health (Aging and Health), Vestfold Hospital Trust, Tønsberg, Norway; 2Lovisenberg Diaconal University College, Oslo, NorwayCorrespondence: Tanja Louise Ibsen, Email tanja.ibsen@aldringoghelse.noAbstract: Authorities and research institutions emphasise and encourage interdisciplinary research to meet complex societal health challenges as dementia. However, studies that describe an interdisciplinary approach for dementia research are limited. What does it take for research to become interdisciplinary? Is it enough to include researchers from different disciplines? This paper reflects on an interdisciplinary approach to dementia research. Based on existing literature and theories, we elaborate the concept of interdisciplinarity, and how the perspective can contribute and improve dementia care.Keywords: interdisciplinary research, interdisciplinarity, dementia, dementia research

Abstract Background Advance research directives (ARD) have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study (“token disclosure”), ARDs can typically only include generic information (“type disclosure”). The introduction of ARDs could thus establish a double standard in the sense that within the context of ARDs, type disclosure would be considered sufficient, while beyond this context, token disclosure would remain necessary. Main body This paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include type disclosure can be acceptable under suitable circumstances. Such an approach raises a number of objections. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach. Conclusion The approach presented in this paper avoids introducing a double standard. It is, therefore, more suitable for the implementation of ARDs than established approaches.

Background: Multiple studies have analysed gender disparities in academic research. Here we study the gender composition of the dementia research field at different stages in the career pipeline. Methods: We use various data sources to gain insights about the gender ratio across career stages: conference attendance data as a proxy for the field as a whole; bibliometric data to know who publishes, and who occupies positions of seniority among the listed authors; and Alzheimer’s Research UK’s (ARUK) internal grant funding data to understand who obtains funding. We also analyse the scoring of grant applications based on the gender of the reviewers. Results: Our results confirm that female researchers leave dementia academic research at higher rates than men, before transitioning into senior positions. In 2020, they comprised over 60% of the field, produced 54% of first authorships, but only accounted for 38% of last authorships. Overall, women received 37% of ARUK’s competitive grants, with significant differences between grant schemes awarded for early career researchers (64% female awardees) compared to grant schemes aimed at senior researchers (33% female awardees). Men and women applied for and obtained grants at significantly different rates depending on the career stage at which the grant was aimed. Finally, we also observed that male and female reviewers apply evaluation criteria differently, with men giving better scores than women on average. Conclusions: Our study adds to the evidence that shows that women get published less, receive less funding, and transition into senior academic positions at disproportionally lower rates than men do. We briefly discuss potential reasons why gender disparities arise as researchers progress into senior positions, and offer interventions ARUK can implement in its application and evaluation process to address those disparities.

Background: The rapid transition to digital working, accelerated due to the response to the COVID-19 pandemic, has impacted the involvement of patients and public in research. This paper presents experiences of engaging in digital Patient and Public Involvement (e-PPI) in dementia research since the lockdowns, offering recommendations regarding future digital and hybrid working. Furthermore, it introduces a co-produced framework for researchers, PPI coordinators and public contributors to identify and discuss challenges and opportunities provided by e-PPI. Methods: Two online workshops and one individual interview were performed with a group of researchers and PPI coordinators with experience in PPI in dementia research, and with an existing dementia PPI group having some experience of working online during the pandemic. The project was constructed as a PPI activity, with the MindTech Involvement Team (PPI group) involved in the entire process, and a collaborative data analysis process was adopted. Results: After refinement of the coding structure, the MindTech Involvement Team and Project Leaders identified four main themes, resulting in the 'E-nabling Digital Co-production' Framework. During this framework development, different positions were expressed, associated with the transition to digital working. Two main themes were shared by the participating groups regarding e-PPI: wider potential reach without geographical constraints, and the perception of more business-like sessions with reduced opportunities for social interactions and communication. Specifically for dementia research, whilst e-PPI may allow public contributors to attend more meetings, potentially mutually supportive environments provided by face-to-face meetings could be diminished, with carers experiencing a possible reduction in informal respite opportunities. Conclusions: Through involving public contributors, researchers, and PPI coordinators with a focus on digital PPI in dementia research, we were able to further refine and co-produce the 'E-nabling Digital Co-production' Framework. Demonstrating potential for analysis of benefits and limitations within e-PPI, it was possible to identify both general insights and those specific to dementia research. However, the most significant contribution of the framework is the potential to support local journeys of co-production in ongoing digital and hybrid public involvement activities. Plain English Summary : The COVID-19 pandemic has impacted the engagement of patients and the public in research. Lockdowns, social distancing, and reduced physical contact have affected the involvement of public contributors in research studies. In particular, the pandemic triggered a rapid transition to digital working, increasing the use of Information and Communication Technologies such as video conferencing on computers and mobile devices. With little time to reflect on the consequences of digital working in PPI and with a continuing legacy of hybrid or blended approaches to involvement, this project highlights the challenges and potential for e-PPI approaches (electronic/digital PPI) within the context of dementia research. In addition to examining the transition to digital working in this area, we present a co-produced framework for researchers, PPI coordinators and public contributors. [ABSTRACT FROM AUTHOR]

Abstract Background When including participants with dementia in research, various ethical issues arise. At present, there are only a few existing dementia-specific research guidelines (Committee for Medicinal Products for Human Use in Clinical investigation of medicines for the treatment Alzheimer’s disease (Internet). https://www.ema.europa.eu/en/clinical-investigation-medicines-treatment-alzheimers-disease ; Food and Drug Administration, Early Alzheimer’s Disease: Developing Drugs for Treatment Guidance for Industry [Internet]. http://www.fda.gov/regulatory-information/search-fda-guidance-documents/alzheimers-disease-developing-drugs-treatment-guidance-industy ), necessitating a more systematic and comprehensive approach to this topic to help researchers and stakeholders address dementia-specific ethical issues in research. A systematic literature review provides information on the ethical issues in dementia-related research and might therefore serve as a basis to improve the ethical conduct of this research. This systematic review aims to provide a broad and unbiased overview of ethical issues in dementia research by reviewing, analysing, and coding the latest literature on the topic. Methods We conducted a systematic review in PubMed and Google Scholar (publications in English between 2007 and 2020, no restrictions on the type of publication) of literature on research ethics in dementia research. Ethical issues in research were identified by qualitative text analysis and normative analysis. Results The literature review retrieved 110 references that together mentioned 105 ethical issues in dementia research. This set of ethical issues was structured into a matrix based on the eight major principles from a pre-existing framework on biomedical ethics (Emanuel et al. An Ethical Framework for Biomedical Research. in The Oxford textbook of clinical research ethics, Oxford University Press, Oxford, 2008). Consequently, subcategories were created and further categorized into dementia stages and study phases. Conclusions The systematically derived matrix helps raise awareness and understanding of the complex topic of ethical issues in dementia research. The matrix can be used as a basis for researchers, policy makers and other stakeholders when planning, conducting and monitoring research, making decisions on the legal background of the topic, and creating research practice guidelines.

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Background: Advance research directives (ARD) have been suggested as a means by which to facilitate research with incapacitated subjects, in particular in the context of dementia research. However, established disclosure requirements for study participation raise an ethical problem for the application of ARDs: While regular consent procedures call for detailed information on a specific study ("token disclosure"), ARDs can typically only include generic information ("type disclosure"). The introduction of ARDs could thus establish a double standard in the sense that within the context of ARDs, type disclosure would be considered sufficient, while beyond this context, token disclosure would remain necessary.Main Body: This paper provides an ethical analysis of ARDs, taking into account the results of numerous empirical studies that have been performed so far. It will be argued that a revised understanding of informed consent can allow for context-sensitive disclosure standards. As a consequence, ARDs that include type disclosure can be acceptable under suitable circumstances. Such an approach raises a number of objections. A thorough examination shows, however, that they are not sufficient to justify a rejection of the approach.Conclusion: The approach presented in this paper avoids introducing a double standard. It is, therefore, more suitable for the implementation of ARDs than established approaches. [ABSTRACT FROM AUTHOR]

Abstract Background Internationally, there is a drive to involve patients and the public in health research, due to recognition that patient and public involvement (PPI) may increase the impact and relevance of health research. This scoping review describes the extent and nature of PPI in dementia research in the European Union (EU) and summarises: (i) how PPI is carried out; and (ii) the impact of PPI on people living with dementia and the public, researchers, and the research process. Methods Relevant studies were identified by searches in electronic reference databases and then filtered by two reviewers independently. Eligibility criteria for included studies were: (i) people living with dementia and/or care partners; (ii) PPI activity in dementia research conducted in the European Union (EU); and (iii) published between 2000 and 2018. An adapted version of the Guidance for Reporting Involvement of Patients and the Public (GRIPP2 SF) was used to collate the data. There was no language restriction other than the abstract needed to be available in English. Results We found 19 studies from the UK and one from the Netherlands meeting inclusion criteria. No studies from other EU countries met inclusion criteria. Studies reported various methods of PPI including workshops, drop-in sessions, meetings, consensus conference, reader consultation and participatory approach. The reported aims of PPI included identifying and prioritising research questions (n = 4), research design (n = 5), undertaking and managing research (n = 8), and data analysis and interpretation (n = 3). All PPI related to design and implementation of non-pharmacological studies. One study described two pharmacological studies as case studies incorporating PPI. Seventeen studies reported anecdotal impacts of PPI. Conclusions Further development of PPI in dementia research in the EU and in pharmacological dementia research is required. Given the wide range of objectives of PPI in dementia research, PPI methods should be flexible and appropriate for the research context. Researchers should also formally evaluate and report the impacts of PPI for researchers, patients and the general public using good quality research designs to foster development of the field and enable the benefits and challenges of PPI to be better understood. Trial registration PROSPERO 2017: CRD42017053260.

Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with “lived experience” of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time.Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia.Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto different “rings” of the Wellcome Trust's “Public Engagement Onion” model. The PPI activities included planning for public engagement events, consultation on the study protocol and conduct, the adaptation of a study screening checklist, development and delivery of dementia training for professionals, and a dementia training programme for public contributors. Part 2 involved an online survey with local researchers to gain insight on their experience of applying PPI in dementia research.Results: Overall, capacity and capability to include PPI in dementia research was significantly enhanced across the sites. Researchers reported that engaging in PPI activities had enhanced their understanding of dementia research and increased the meaningfulness of the work. Moreover, each site reported their own PPI activity-related outcomes, including: (1) changes in attitudes and behavior to dementia and research involvement; (2) best methods to inform participants about the dementia study; (3) increased opportunities to share knowledge and study outcomes; and (4) adaptations to the study protocol through co-production.Conclusions: Introducing PPI for dementia research in LMIC settings, using a range of activity types is important for meaningful and impactful dementia research. To our knowledge, this is the first example of PPI for dementia research in South Asia.

Background: When including participants with dementia in research, various ethical issues arise. At present, there are only a few existing dementia-specific research guidelines (Committee for Medicinal Products for Human Use in Clinical investigation of medicines for the treatment Alzheimer's disease (Internet). https://www.ema.europa.eu/en/clinical-investigation-medicines-treatment-alzheimers-disease ; Food and Drug Administration, Early Alzheimer's Disease: Developing Drugs for Treatment Guidance for Industry [Internet]. http://www.fda.gov/regulatory-information/search-fda-guidance-documents/alzheimers-disease-developing-drugs-treatment-guidance-industy ), necessitating a more systematic and comprehensive approach to this topic to help researchers and stakeholders address dementia-specific ethical issues in research. A systematic literature review provides information on the ethical issues in dementia-related research and might therefore serve as a basis to improve the ethical conduct of this research. This systematic review aims to provide a broad and unbiased overview of ethical issues in dementia research by reviewing, analysing, and coding the latest literature on the topic.Methods: We conducted a systematic review in PubMed and Google Scholar (publications in English between 2007 and 2020, no restrictions on the type of publication) of literature on research ethics in dementia research. Ethical issues in research were identified by qualitative text analysis and normative analysis.Results: The literature review retrieved 110 references that together mentioned 105 ethical issues in dementia research. This set of ethical issues was structured into a matrix based on the eight major principles from a pre-existing framework on biomedical ethics (Emanuel et al. An Ethical Framework for Biomedical Research. in The Oxford textbook of clinical research ethics, Oxford University Press, Oxford, 2008). Consequently, subcategories were created and further categorized into dementia stages and study phases.Conclusions: The systematically derived matrix helps raise awareness and understanding of the complex topic of ethical issues in dementia research. The matrix can be used as a basis for researchers, policy makers and other stakeholders when planning, conducting and monitoring research, making decisions on the legal background of the topic, and creating research practice guidelines. [ABSTRACT FROM AUTHOR]

Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with "lived experience" of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time. Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia. Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto different "rings" of the Wellcome Trust's "Public Engagement Onion" model. The PPI activities included planning for public engagement events, consultation on the study protocol and conduct, the adaptation of a study screening checklist, development and delivery of dementia training for professionals, and a dementia training programme for public contributors. Part 2 involved an online survey with local researchers to gain insight on their experience of applying PPI in dementia research. Results: Overall, capacity and capability to include PPI in dementia research was significantly enhanced across the sites. Researchers reported that engaging in PPI activities had enhanced their understanding of dementia research and increased the meaningfulness of the work. Moreover, each site reported their own PPI activity-related outcomes, including: (1) changes in attitudes and behavior to dementia and research involvement; (2) best methods to inform participants about the dementia study; (3) increased opportunities to share knowledge and study outcomes; and (4) adaptations to the study protocol through co-production. Conclusions: Introducing PPI for dementia research in LMIC settings, using a range of activity types is important for meaningful and impactful dementia research. To our knowledge, this is the first example of PPI for dementia research in South Asia. [ABSTRACT FROM AUTHOR]

Dementia is a public health problem of today. Dementia is characterized by a loss of or decline in memory and other cognitive abilities, and it reduces the lifespan of affected people. It is estimated that 24.3 million worldwide and 1.8 million people in India were affected with dementia. Quality of life in recent years has evolved as a very useful indicator in assessing the present overall wellbeing of an individual. Thus evaluating the quality of life in persons with dementia and finding its predictors is important. The literature review was done to form a document about the possible research scopes and policy direction in this regard. It was found that male gender, poor socioeconomic status, illiteracy, diabetes, hypertension, the presence of stigma were significant predictors of quality of life in dementia. It was also found that the presence of good caregivers and proper family support were also significant predictors for quality of life in dementia. Thus community-based studies in this regard should be conducted. Establishment of dementia-specific care centres, more awareness generation camps to reduce the stigma of dementia should be considered. Revamping the public healthcare delivery system to make it dementia friendly is an essential area for thought. Specialized health programmes on dementia are the urgent need of the country.

Key points: Dementia studies often struggle to recruit research participants. Volunteer registers can potentially help facilitate participant recruitment.Join Dementia Research (JDR) register helped in recruiting study volunteers and raised awareness of dementia research in general.The effectiveness of research registers depends on their design, maintenance and the information included. [ABSTRACT FROM AUTHOR]

The National Alzheimer's Project Act identifies the effective treatment and prevention of Alzheimer's by 2025 as an urgent public health mission. This priority is reflected in the recent increases in public funding that is accelerating Alzheimer's and related dementias research. Many drugs and clinical interventions are in rapid development, with the promising ones moving to clinical trials to be tested. There are currently more than 200 on-going clinical trials, seeking more than 270,000 participants, which will require screening of more than a million individuals. With the race to treatment, how inclusive will screenings be to ensure diversification of the citizens volunteering to become trial participants? Underrepresented groups are chronically under-enrolled in clinical research studies. This under-enrollment leads to conclusions about disease risk factors and processes without all the necessary data because the studies are not representative of all people and all life experiences. [ABSTRACT FROM AUTHOR]

Advance research directives (ARDs) are a means by which people can document their wishes about research participation in the event of future incapacity. ARDs have been endorsed in some ethics guidelines and position statements, however, formal legal recognition is limited. A few empirical studies have investigated the views of researchers and other stakeholders on ARDs and tested strategies to implement such directives. To further knowledge in this area, we undertook a survey of dementia researchers in Australia (n = 63) to examine their views on ARDs. Most of the survey respondents (>80%) thought ARDs would promote autonomy in decision-making and enable opportunities for people with cognitive impairment to be included in research. Respondents indicated concern about directives not being available when needed (71%) and that ethics committees would not accept ARDs (60%). Few respondents had used ARDs, but a majority (from 57–80%) would be willing to offer ARDs for a range of research activities, such as observing behaviour and taking measures, blood samples or scans. Nearly all respondents (92%) agreed that current dissent should override prior wishes stated in an ARD. The survey findings are contextualised with attention to ethics guidelines, laws and practices to support advance research planning. [ABSTRACT FROM AUTHOR]

Aging research has experienced a burst of scientific efforts in the last decades as the growing ratio of elderly people has begun to pose an increased burden on the healthcare and pension systems of developed countries. Although many breakthroughs have been reported in understanding the cellular mechanisms of aging, the intrinsic and extrinsic factors that contribute to senescence on higher biological levels are still barely understood. The dog, Canis familiaris, has already served as a valuable model of human physiology and disease. The possible role the dog could play in aging research is still an open question, although utilization of dogs may hold great promises as they naturally develop age-related cognitive decline, with behavioral and histological characteristics very similar to those of humans. In this regard, family dogs may possess unmatched potentials as models for investigations on the complex interactions between environmental, behavioral, and genetic factors that determine the course of aging. In this review, we summarize the known genetic pathways in aging and their relevance in dogs, putting emphasis on the yet barely described nature of certain aging pathways in canines. Reasons for highlighting the dog as a future aging and gerontology model are also discussed, ranging from its unique evolutionary path shared with humans, its social skills, and the fact that family dogs live together with their owners, and are being exposed to the same environmental effects.

Aging research has experienced a burst of scientific efforts in the last decades as the growing ratio of elderly people has begun to pose an increased burden on the healthcare and pension systems of developed countries. Although many breakthroughs have been reported in understanding the cellular mechanisms of aging, the intrinsic and extrinsic factors that contribute to senescence on higher biological levels are still barely understood. The dog, Canis familiaris , has already served as a valuable model of human physiology and disease. The possible role the dog could play in aging research is still an open question, although utilization of dogs may hold great promises as they naturally develop age-related cognitive decline, with behavioral and histological characteristics very similar to those of humans. In this regard, family dogs may possess unmatched potentials as models for investigations on the complex interactions between environmental, behavioral, and genetic factors that determine the course of aging. In this review, we summarize the known genetic pathways in aging and their relevance in dogs, putting emphasis on the yet barely described nature of certain aging pathways in canines. Reasons for highlighting the dog as a future aging and gerontology model are also discussed, ranging from its unique evolutionary path shared with humans, its social skills, and the fact that family dogs live together with their owners, and are being exposed to the same environmental effects. [ABSTRACT FROM AUTHOR]

This article advocates a certain interpretation of grounded theory for the analysis of interviews with people diagnosed with dementia. Distinguishing itself from the methodological approaches that, closer to thematic analysis, consider the discourses of the participants as "pure symptoms" or "pure meanings," this interpretation consists in interpreting the content of the interviews jointly with their enunciation situation and the social trajectories of the participants. It then allows for extending the space of interpreting possibilities, an endeavor especially crucial in research among discredited populations. [ABSTRACT FROM AUTHOR]

A reflection on the process that led to the development of dementia friendly theatre performances at Leeds Playhouse (formerly West Yorkshire Playhouse) including the vital involvement of people living with dementia as creative consultants. This article outlines the inspiration behind such performances, the steps required to make the necessary adaptations and enhancements identified by people living with dementia, and the potential for theatres to value and validate the voices of people with dementia through continued cultural engagement. [ABSTRACT FROM AUTHOR]

OBJECTIVES To examine the effect of 25‐hydroxyvitamin D (25(OH)D) levels recommended by Endocrine Society guidelines (>30 ng/mL) on cognition in healthy older African‐American women over 3 years. DESIGN Randomized, double‐blind, placebo‐controlled clinical trial. SETTING Bone Mineral Research Center at New York University Winthrop Hospital. PARTICIPANTS Healthy postmenopausal African American women aged 65 and older (N=260; mean age 68.2 ± 4.9; 46% college education or higher). INTERVENTION Half of the women were randomized to receive vitamin D (adjusted to achieve a serum level > 30 ng/mL) with calcium (diet and supplement total of 1,200 mg), and half were randomized to receive placebo with calcium (1,200 mg). MEASUREMENTS Cognitive assessments every 6 months using the Mini‐Mental State Examination (MMSE) to detect cognitive decline. Mean MMSE scores were calculated over time for both groups. Those with MMSE scores less than 21 at baseline were excluded. RESULTS: The average dose of vitamin D3 was 3,490 ± 1,465 IU per day, and average serum 25(OH)D at 3 years was 46.8 ± 1.2 ng/mL in the active group and 20.7 ± 1.1 ng/mL in the placebo group. Serum 25(OH)D concentration was maintained at greater than 30 ng/mL in 90% of the active group. Over the 3‐year period, MMSE scores increased in both groups (p <.001), although change over time was not significantly different between the groups. No adverse events associated with vitamin D were observed. CONCLUSION: There was no difference in cognition over time between older African‐American women with serum concentrations of 25(OH)D of 30 ng/mL and greater than those taking placebo. There is no evidence to support vitamin D intake greater than the recommended daily allowance in this population for preventing cognitive decline. J Am Geriatr Soc 67:81–86, 2019. [ABSTRACT FROM AUTHOR]

In the article, the authors present their study to identify the need for and accessibility of specialized structures for dementia treatment based on geographic analysis in Germany. Also cited are the support by the German Centre for Neurodegenerative Diseases (DZNE) for dementia research, and the medical specialties involved in the diagnosis and treatment of patients with memory impairments.

Background: Accurate assessment of health-related quality of life as an endpoint in intervention studies is a major challenge in dementia research. The DEMQOL (29 items) and the proxy version (32 items), which is partly based on the DEMQOL, are internationally used instruments. To date, there is no information on the structural validity, item distribution, or internal consistency for the German language version of these questionnaires.Methods: This psychometric study is based on a secondary data analysis of a sample of 201 outpatients with a mild form of Alzheimer's disease (AD) and their informal caregivers. The informal caregivers who were interviewed were involved in the care of the person with AD several times per week. The analysis for the evaluation of the structural validity was performed using Mokken scale analysis. The internal consistency was calculated using the ρ of the Molenaar Sijtsma statistic and Cronbach's α.Results: For both versions, four subscales were identified: [A] "positive emotions", [B] "negative emotions", [C] "physical and cognitive functioning", and [D] "daily activities and social relationships". For both instruments, the internal consistency of all subscales was considered "good" (ρ = 0.71-0.88, α = 0.72-0.87).Conclusions: The results are a first indication of good construct validity of the instruments used for the German setting. We recommend further investigations of the test-retest reliability and the inter-rater reliability of the proxy instrument. [ABSTRACT FROM AUTHOR]

The doctrine of informed consent sits at the intersection of law, ethics, and neuroscience, posing unique challenges for human subject research involving neurological patients. These challenges are compounded by the variegated nature of both neurological injury and the law governing research consent. This article provides a framework for investigators likely to encounter subjects with some degree of neurological impairment, whose capacity to consent requires scrupulous assessment prior to enrollment in research trials. We consider several researches and disease contexts—from emergency epilepsy research to long-term dementia research—and clarify the ethical and legal principles governing consent for participation in each. We additionally explore empirical research on consent capacity and survey several areas of emerging ethical import that will require the attention of investigators in decades to come. [ABSTRACT FROM AUTHOR]

Dementia is a public health problem of today. Dementia is characterized by a loss of or decline in memory and other cognitive abilities, and it reduces the lifespan of affected people. It is estimated that 24.3 million worldwide and 1.8 million people in India were affected with dementia. Quality of life in recent years has evolved as a very useful indicator in assessing the present overall wellbeing of an individual. Thus evaluating the quality of life in persons with dementia and finding its predictors is important. The literature review was done to form a document about the possible research scopes and policy direction in this regard. It was found that male gender, poor socioeconomic status, illiteracy, diabetes, hypertension, the presence of stigma were significant predictors of quality of life in dementia. It was also found that the presence of good caregivers and proper family support were also significant predictors for quality of life in dementia. Thus community-based studies in this regard should be conducted. Establishment of dementia-specific care centres, more awareness generation camps to reduce the stigma of dementia should be considered. Revamping the public healthcare delivery system to make it dementia friendly is an essential area for thought. Specialized health programmes on dementia are the urgent need of the country. [ABSTRACT FROM AUTHOR]

Objective: National and global dementia plans have focused on the research ambition to develop a cure or disease-modifying therapy by 2025, with the initial focus on investment in drug discovery approaches. We set out to develop complementary research ambitions in the areas of prevention, diagnosis, intervention, and care and strategies for achieving them.Methods: Alzheimer's Society facilitated a taskforce of leading UK clinicians and researchers in dementia, UK funders of dementia research, people with dementia, and carer representatives to develop, using iterative consensus methodology, goals and recommendations to advance dementia research.Results: The taskforce developed 5 goals and 30 recommendations. The goals focused on preventing future cases of dementia through risk reduction, maximising the benefit of a dementia diagnosis, improving quality of life, enabling the dementia workforce to improve practice, and optimising the quality and inclusivity of health and social care systems. Recommendations addressed gaps in knowledge and limitations in research methodology or infrastructure that would facilitate research in prioritised areas. A 10-point action plan provides strategies for delivering the proposed research agenda.Conclusions: By creating complementary goals for research that mirror the need to find effective treatments, we provide a framework that enables a focus for new investment and initiatives. This will support a broader and more holistic approach to research on dementia, addressing prevention, surveillance of population changes in risk and expression of dementia, the diagnostic process, diagnosis itself, interventions, social support, and care for people with dementia and their families. [ABSTRACT FROM AUTHOR]

Most studies that enroll individuals with dementia require a study partner for each participant. Study partners--usually family members--perform several key roles: accompanying the participant to visits, providing information about the participant, and assisting with procedures such as taking medication. Little is known, however, about their experiences when performing these roles. Dementia researchers and institutional review boards need to know these experiences because the study partner role is one key factor in a study's success. This prospective qualitative study, using up to three semi-structured interviews with 62 study partners involved in a range of dementia studies, documented their subjective experiences. Content analysis demonstrates that study partners perform a range of tasks--often within the context of being a caregiver--that enable cognitively impaired individuals to participate in dementia research. These tasks present study partners with unique burdens and benefits, some of which dementia researchers and institutional review boards can address. [ABSTRACT FROM AUTHOR]

The landscape of frontotemporal dementia (FTD) has evolved remarkably in recent years and is barely recognizable from two decades ago. Knowledge of the clinical phenomenology, cognition, neuroimaging, genetics, pathology of the different subtypes of FTD, and their relations to other neurodegenerative conditions, has increased rapidly, due in part, to the growing interests into these neurodegenerative brain conditions. This article reviews the major advances in the field of FTD over the past 20 years, focusing primarily on the work of Frontier, the frontotemporal dementia clinical research group, based in Sydney, Australia. Topics covered include clinical presentations (cognition, behavior, neuroimaging), pathology, genetics, and disease progression, as well as interventions and carer directed research. This review demonstrates the improvement in diagnostic accuracy and capacity to provide advice on genetic risks, prognosis, and outcome. The next major challenge will be to capitalize on these research findings to develop effective disease modifying drugs, which are currently lacking. [ABSTRACT FROM AUTHOR]

Objectives: To identify information available in six European countries (England, France, Germany, Netherlands, Portugal, Sweden) that addresses the specific needs of people with young onset dementia (YOD) and their carers, and identify gaps.Methods: Search of websites of organisations with potential interest in dementia. Narrative synthesis and comparative analysis.Results: 21 sources of information were identified (Netherlands 6, England 6, France 3, Germany 2, Portugal 2, Sweden 2); 11 were from voluntary sector organisations. Sources dedicated to YOD were limited (4 websites, 4 books); all other YOD information was sub-entries in generic dementia sources, difficult to locate and with limited coverage of relevant topics. Gaps related to implications of living with YOD in Germany, Portugal and Sweden.Conclusion: Availability of information varies among countries, some having no dedicated source and incomplete coverage of issues of importance to YOD.Practical Implications: Information is an important means of supporting carers; their needs change as the condition progresses. A comprehensive resource collating key information is needed so that the issues that differentiate the specific needs of people living with YOD from those of people with dementia in older age are available and easily located. [ABSTRACT FROM AUTHOR]