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      Medicines management issues in dementia and coping strategies used by people living with dementia and family carers: A systematic review

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          Abstract

          Objectives

          Medicines play a key role in the lives of people with dementia, primarily to manage symptoms. Managing medicines is complex for people with dementia and their family carers and can result in multiple problems leading to harm. We conducted a systematic review to identify and model medication issues experienced and coping strategies used by people with dementia and/or family carers.

          Methods

          Eleven general databases and four systematic review databases were searched. Studies were quality assessed using an established framework and thematically analysed.

          Results

          Twenty‐one articles were included in this study, and four domains affecting medication use were identified: cognitive, medication, social and cultural, and knowledge/educational and communication. People with dementia reported medication issues in all four domains, but few coping strategies were developed. Family carers reported issues and coping strategies related to the medication and knowledge/educational and communication domains. Common issues with regards to knowledge and communication about medicines remain unresolved. The “voices” of people with dementia appeared largely missing from the literature so were in‐depth understanding of how, whether, and in which circumstances coping strategies work in managing medicines.

          Conclusions

          Medicines management is a complex set of activities and although current coping strategies exists, these were primarily used by family carers or the person with dementia‐carer dyad. Health and social care practitioners and researchers should seek to understand in‐depth the “mechanisms of action” of existing coping strategies and actively involve people with dementia as co‐producers of knowledge to underpin any further work on medicines management.

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          Most cited references36

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          Drug development in Alzheimer’s disease: the path to 2025

          The global impact of Alzheimer’s disease (AD) continues to increase, and focused efforts are needed to address this immense public health challenge. National leaders have set a goal to prevent or effectively treat AD by 2025. In this paper, we discuss the path to 2025, and what is feasible in this time frame given the realities and challenges of AD drug development, with a focus on disease-modifying therapies (DMTs). Under the current conditions, only drugs currently in late Phase 1 or later will have a chance of being approved by 2025. If pipeline attrition rates remain high, only a few compounds at best will meet this time frame. There is an opportunity to reduce the time and risk of AD drug development through an improvement in trial design; better trial infrastructure; disease registries of well-characterized participant cohorts to help with more rapid enrollment of appropriate study populations; validated biomarkers to better detect disease, determine risk and monitor disease progression as well as predict disease response; more sensitive clinical assessment tools; and faster regulatory review. To implement change requires efforts to build awareness, educate and foster engagement; increase funding for both basic and clinical research; reduce fragmented environments and systems; increase learning from successes and failures; promote data standardization and increase wider data sharing; understand AD at the basic biology level; and rapidly translate new knowledge into clinical development. Improved mechanistic understanding of disease onset and progression is central to more efficient AD drug development and will lead to improved therapeutic approaches and targets. The opportunity for more than a few new therapies by 2025 is small. Accelerating research and clinical development efforts and bringing DMTs to market sooner would have a significant impact on the future societal burden of AD. As these steps are put in place and plans come to fruition, e.g., approval of a DMT, it can be predicted that momentum will build, the process will be self-sustaining, and the path to 2025, and beyond, becomes clearer.
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            Alzheimer Europe's position on involving people with dementia in research through PPI (patient and public involvement).

            This paper reflects Alzheimer Europe's position on PPI (patient and public involvement) in the context of dementia research and highlights some of the challenges and potential risks and benefits associated with such meaningful involvement. The paper was drafted by Alzheimer Europe in collaboration with members of INTERDEM and the European Working Group of People with Dementia. It has been formally adopted by the Board of Alzheimer Europe and endorsed by the Board of INTERDEM and by the JPND working group 'Dementia Outcome Measures - Charting New Territory'. Alzheimer Europe is keen to promote the involvement of people with dementia in research, not only as participants but also in the context of PPI, by generating ideas for research, advising researchers, being involved in consultations and being directly involved in research activities. This position paper is in keeping with this objective. Topics covered include, amongst others, planning involvement, establishing roles and responsibilities, training and support, managing information and input from PPI, recognising the contribution of people with dementia involved in research in this way, promoting and protecting the rights and well-being of people with dementia, training and support, and promoting an inclusive approach and the necessary infrastructure for PPI in dementia research.
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              Ethical and methodological issues in interviewing persons with dementia.

              People with dementia have previously not been active participants in research, with ethical difficulties often being cited as the reason for this. A wider inclusion of people with dementia in research raises several ethical and methodological challenges. This article adds to the emerging debate by reflecting on the ethical and methodological issues raised during an interview study involving people with dementia and their spouses. The study sought to explore the impact of living with dementia. We argue that there is support for the inclusion of people with dementia in research and that the benefits of participation usually far outweigh the risks, particularly when a ;safe context' has been created. The role of gatekeepers as potentially responsible for excluding people with dementia needs further consideration, with particular reference to the appropriateness of viewing consent as a primarily cognitive, universalistic and exclusionary event as opposed to a more particularistic, inclusive and context relevant process.
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                Author and article information

                Contributors
                r.h.m.lim@reading.ac.uk
                Journal
                Int J Geriatr Psychiatry
                Int J Geriatr Psychiatry
                10.1002/(ISSN)1099-1166
                GPS
                International Journal of Geriatric Psychiatry
                John Wiley and Sons Inc. (Hoboken )
                0885-6230
                1099-1166
                30 September 2018
                December 2018
                : 33
                : 12 ( doiID: 10.1002/gps.v33.12 )
                : 1562-1581
                Affiliations
                [ 1 ] Reading School of Pharmacy University of Reading Reading Berkshire UK
                Author notes
                [*] [* ] Correspondence

                R. H. Lim, Dr, Reading School of Pharmacy, University of Reading, Reading, Berkshire, UK.

                Email: r.h.m.lim@ 123456reading.ac.uk

                [†]

                Both authors contributed equally to the writing of this manuscript.

                Author information
                http://orcid.org/0000-0003-1705-1480
                http://orcid.org/0000-0002-4600-0001
                Article
                GPS4985 GPS-18-0132.R1
                10.1002/gps.4985
                6282522
                30270451
                1018279e-ac69-4fb5-9ad4-4e5bde7d98a8
                © 2018 The Authors. International Journal of Geriatric Psychiatry Published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 26 March 2018
                : 06 August 2018
                Page count
                Figures: 2, Tables: 4, Pages: 20, Words: 4282
                Funding
                Funded by: Wellcome Trust
                Award ID: 108320/Z/15/Z
                Categories
                Review Article
                Review Articles
                Custom metadata
                2.0
                gps4985
                December 2018
                Converter:WILEY_ML3GV2_TO_NLMPMC version:version=5.5.3 mode:remove_FC converted:06.12.2018

                Geriatric medicine
                coping strategies,dementia,family carers,medication management,people with dementia

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