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      Living with Dementia in Aotearoa (LiDiA): a cross-sectional feasibility study protocol for a multiethnic dementia prevalence study in Aotearoa/New Zealand

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          Abstract

          Introduction

          Aotearoa/New Zealand (NZ) is officially recognised as a bicultural country composed of Māori and non-Māori. Recent estimations have projected a threefold increase in dementia prevalence in NZ by 2050, with the greatest increase in non-NZ–Europeans. The NZ government will need to develop policies and plan services to meet the demands of the rapid rise in dementia cases. However, to date, there are no national data on dementia prevalence and overseas data are used to estimate the NZ dementia statistics. The overall aim of the Living with Dementia in Aotearoa study was to prepare the groundwork for a large full-scale NZ dementia prevalence study.

          Methods and analysis

          The study has two phases. In phase I, we will adapt and translate the 10/66 dementia assessment protocol to be administered in Māori, Samoan, Tongan and Fijian–Indian elders. The diagnostic accuracy of the adapted 10/66 protocol will be tested in older people from these ethnic backgrounds who were assessed for dementia at a local memory service. In phase II, we will address the feasibility issues of conducting a population-based prevalence study by applying the adapted 10/66 protocol in South Auckland and will include NZ–European, Māori, Samoan, Tongan, Chinese and Fijian–Indian participants. The feasibility issues to be explored are as follows: (1) how do we sample to ensure we get accurate community representation? (2) how do we prepare a workforce to conduct the fieldwork and develop quality control? (3) how do we raise awareness of the study in the community to maximise recruitment? (4) how do we conduct door knocking to maximise recruitment? (5) how do we retain those we have recruited to remain in the study? (6) what is the acceptability of study recruitment and the 10/66 assessment process in different ethnic groups?

          Ethics and dissemination

          The validity and feasibility studies were approved by the New Zealand Northern A Health and Disability Ethics Committee (numbers 17NTA234 and 18NTA176, respectively). The findings will be disseminated through peer-reviewed academic journals, national and international conferences, and public events. Data will be available on reasonable request from the corresponding author.

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          NIA-AA Research Framework: Toward a biological definition of Alzheimer’s disease

          In 2011, the National Institute on Aging and Alzheimer’s Association created separate diagnostic recommendations for the preclinical, mild cognitive impairment, and dementia stages of Alzheimer’s disease. Scientific progress in the interim led to an initiative by the National Institute on Aging and Alzheimer’s Association to update and unify the 2011 guidelines. This unifying update is labeled a “research framework” because its intended use is for observational and interventional research, not routine clinical care. In the National Institute on Aging and Alzheimer’s Association Research Framework, Alzheimer’s disease (AD) is defined by its underlying pathologic processes that can be documented by postmortem examination or in vivo by biomarkers. The diagnosis is not based on the clinical consequences of the disease (i.e., symptoms/signs) in this research framework, which shifts the definition of AD in living people from a syndromal to a biological construct. The research framework focuses on the diagnosis of AD with biomarkers in living persons. Biomarkers are grouped into those of β amyloid deposition, pathologic tau, and neurodegeneration [AT(N)]. This ATN classification system groups different biomarkers (imaging and biofluids) by the pathologic process each measures. The AT(N) system is flexible in that new biomarkers can be added to the three existing AT(N) groups, and new biomarker groups beyond AT(N) can be added when they become available. We focus on AD as a continuum, and cognitive staging may be accomplished using continuous measures. However, we also outline two different categorical cognitive schemes for staging the severity of cognitive impairment: a scheme using three traditional syndromal categories and a six-stage numeric scheme. It is important to stress that this framework seeks to create a common language with which investigators can generate and test hypotheses about the interactions among different pathologic processes (denoted by biomarkers) and cognitive symptoms. We appreciate the concern that this biomarker-based research framework has the potential to be misused. Therefore, we emphasize, first, it is premature and inappropriate to use this research framework in general medical practice. Second, this research framework should not be used to restrict alternative approaches to hypothesis testing that do not use biomarkers. There will be situations where biomarkers are not available or requiring them would be counterproductive to the specific research goals (discussed in more detail later in the document). Thus, biomarker-based research should not be considered a template for all research into age-related cognitive impairment and dementia; rather, it should be applied when it is fit for the purpose of the specific research goals of a study. Importantly, this framework should be examined in diverse populations. Although it is possible that β-amyloid plaques and neurofibrillary tau deposits are not causal in AD pathogenesis, it is these abnormal protein deposits that define AD as a unique neurodegenerative disease among different disorders that can lead to dementia. We envision that defining AD as a biological construct will enable a more accurate characterization and understanding of the sequence of events that lead to cognitive impairment that is associated with AD, as well as the multifactorial etiology of dementia. This approach also will enable a more precise approach to interventional trials where specific pathways can be targeted in the disease process and in the appropriate people.
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            Dementia prevention, intervention, and care

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              Diagnosis and management of dementia with Lewy bodies

              The Dementia with Lewy Bodies (DLB) Consortium has refined its recommendations about the clinical and pathologic diagnosis of DLB, updating the previous report, which has been in widespread use for the last decade. The revised DLB consensus criteria now distinguish clearly between clinical features and diagnostic biomarkers, and give guidance about optimal methods to establish and interpret these. Substantial new information has been incorporated about previously reported aspects of DLB, with increased diagnostic weighting given to REM sleep behavior disorder and 123iodine-metaiodobenzylguanidine (MIBG) myocardial scintigraphy. The diagnostic role of other neuroimaging, electrophysiologic, and laboratory investigations is also described. Minor modifications to pathologic methods and criteria are recommended to take account of Alzheimer disease neuropathologic change, to add previously omitted Lewy-related pathology categories, and to include assessments for substantia nigra neuronal loss. Recommendations about clinical management are largely based upon expert opinion since randomized controlled trials in DLB are few. Substantial progress has been made since the previous report in the detection and recognition of DLB as a common and important clinical disorder. During that period it has been incorporated into DSM-5, as major neurocognitive disorder with Lewy bodies. There remains a pressing need to understand the underlying neurobiology and pathophysiology of DLB, to develop and deliver clinical trials with both symptomatic and disease-modifying agents, and to help patients and carers worldwide to inform themselves about the disease, its prognosis, best available treatments, ongoing research, and how to get adequate support.
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                Author and article information

                Journal
                BMJ Open
                BMJ Open
                bmjopen
                bmjopen
                BMJ Open
                BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
                2044-6055
                2021
                3 May 2021
                : 11
                : 5
                : e046143
                Affiliations
                [1 ] departmentDepartment of Psychological Medicine , The University of Auckland , Auckland, New Zealand
                [2 ] departmentDepartamento de Epidemiología Demográfica y Determinantes Sociales , Instituto Nacional de Geriatria , Ciudad de Mexico, Mexico
                [3 ] departmentSchool of Psychology , The University of Auckland , Auckland, New Zealand
                [4 ] departmentNational Institute for Stroke and Applied Neurosciences , Auckland University of Technology , Auckland, New Zealand
                [5 ] departmentSchool of Population Health , The University of Auckland , Auckland, New Zealand
                [6 ] departmentResearch Department , Moana Research , Auckland, New Zealand
                [7 ] departmentDepartment of Statistics , The University of Auckland , Auckland, New Zealand
                [8 ] departmentDepartment of Mental Health Services for Older People , Counties Manukau District Health Board , Auckland, New Zealand
                Author notes
                [Correspondence to ] Dr Sarah Cullum; sarah.cullum@ 123456auckland.ac.nz
                Author information
                http://orcid.org/0000-0003-4974-6674
                http://orcid.org/0000-0003-0785-9101
                Article
                bmjopen-2020-046143
                10.1136/bmjopen-2020-046143
                8098966
                33941631
                9318519e-07e3-4a4a-b6f5-4af26719130d
                © Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

                This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See:  http://creativecommons.org/licenses/by-nc/4.0/.

                History
                : 26 October 2020
                : 16 March 2021
                : 20 April 2021
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100001505, Health Research Council of New Zealand;
                Award ID: 18/590
                Funded by: Counties Manukau District Health Board Tupu fund grant;
                Award ID: 498
                Funded by: Brain Research New Zealand Centre of Research Excellence;
                Award ID: 3715238
                Categories
                Mental Health
                1506
                1712
                Protocol
                Custom metadata
                unlocked

                Medicine
                dementia,old age psychiatry,geriatric medicine,public health
                Medicine
                dementia, old age psychiatry, geriatric medicine, public health

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