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Abstract Book Plenary Abstracts PL01 Date: Friday 22 April 2016 Session: Advances Towards Prevention, Treatment and Cure LATEST DIAGNOSIS AND TREATMENT 2016 Serge Gauthier1 1McGill Center for Studies in Aging, AD Research Unit, H4H 1R3, Montreal, 6825 LaSalle Boulevard, CANADA Abstract: There are ongoing efforts at harmonizing research diagnostic criteria for Alzheimer’s disease (AD) throughout its stages (asymptomatic at risk, MCI, dementia). This will facilitate research on prevention using non-pharmacologic and pharmacologic strategies. There is a concerted effort from governments, regulators, the pharmaceutical industry and investigators to accelerate the pace of therapeutic research through all these stages of AD. Recruiting for therapeutic research will be facilitated by the involvement of persons at risk and patients through “trial ready cohorts”. The increasing use of biomarkers measuring the amount of amyloid and tau pathology in the brain may help to choose the right treatment for the right person at the right stage of disease. In the near future combinations of treatments will be tried, and we need to learn from the fields of infectious disease and cancer about trial design, practice guidelines and costs sharing. National plans will help implement current and future diagnostic and treatment strategies world-wide. Keywords: research 2 | www.adi2016.org @ADIConferenve / ADI2016 Plenary Abstracts PL02 Date: Friday 22 April 2016 Session: Advances Towards Prevention, Treatment and Cure THE WELL-EDUCATED LAB RAT: A VIEW OF CLINICAL RESEARCH FROM INSIDE THE MAZE Mary L Radnofsky1 1The Socrates Institute, 22304, Alexandria, 151 Ingle Place, Alexandria, Virginia, 22304 USA, UNITED STATES Abstract: Mary L. Radnofsky, PhD, Dementia Alliance International (DAI) As a former research professor and ethnographer, I know about quantitative and qualitative data-gathering instruments; I’ve done fieldwork in educational cultures with children, and watched these “rats” in their classroom “mazes.” But my reason for becoming the lab rat, myself, in medical research, was altogether unrelated to my profession: I just needed to see a doctor because I was sick. With a white matter disease, no job, and no health insurance, I found a way to access the best physicians, medical tests, and cutting-edge technology in the country: volunteer for a clinical trial at the National Institutes of Health. Two years later, I’m still a part-time lab rat. Sometimes it’s actually good healthcare, as I get the most concerned specialists, nurses, researchers, and medical students, all focused on understanding me. I also learn much from these top experts about my condition. But being a lab rat takes emotional and physical tolls; for example, I didn’t have the “target” disease in my first clinical trial, so I “lost” that year, in the sense that I couldn’t get treatment. I do have a rare disease, though, so I was given many kinds of tests – some fascinating, some painful – both on my mind and body. And I caught a hospital-borne virus that nearly killed me. Heavy toll. But I recovered, so I volunteered for another study. I still believe in the power of science. I was enrolled for genome mapping, and had exciting results – though inconclusive, so I must wait to “fit in” to yet another study for follow-up tests; thus another year passed. In the meantime, I’ve been invited back to the first study for more tests; this time, they’re going to pay me a few hundred dollars for a pound of flesh. So I’ll go back into the cage with the other lab rats, but don’t bother putting an exercise wheel in there. We’re already busy enough on a roller coaster of tests, expectations, fear, procedures, hope, paperwork, schedules, bureaucratic mazes, pain, interviews, delays, vouchers, new symptoms, old symptoms, excitement, treatments, confusion – oh, and by the way, we’re sick! But we’re still important, funny, loved, needed, wanted, and occasionally, very well-educated lab rats. And we’ve got something to say about the ways you study us. Thanks for listening. Keywords: Research Subject, Clinical Trials, Participant-Observer alzheimersdiseaseinternational www.adi2016.org | 3 Plenary Abstracts PL03 Date: Friday 22 April 2016 Session: Advances Towards Prevention, Treatment and Cure SPEECH AND DEMENTIA János Kálmán1 1University of Szeged, Department of Psychiatry, 6725, Szeged, Kálvária sgt 57., HUNGARY Abstract: The complex temporal and situational set of analog signals of spontaneous vocalisation developed historically in a special cultural setting in order to transfer internal cognitive processes to other humans is considered as speech. The analysis of speech signals as the simpliest, less expensive, non-invasive biological markers of dementia is a relatively neglected area of Alzheimer’s (AD) research. The lexical, semantic and pragmatic domains of language are summarised and correlated with other neurocognitive parameters of AD in my presentation. Specific pattern of phonologic, syntactic, semantic and pragmatic alterations of speech will be discussed during the natural course of cognitive decline in AD. Novel acoustic biomarkers of mild cognitive impairment (MCI) such as the number and length of silent and filled pauses and hesitation speech tempo have been recently reported by our group based on the manual analysis of speech signals in a complex episodic memory paradigm. These findings lead us to develop an automatic speech recognition signal processing-based software for automatic detection of specific indicators of phonetic level transcripts. Machine learning methods were employed to improve the diagnostic accuracy of our system (F value 85.3) and compared with other recent speech analytical approaches of AD. Our system might be the base for the develoment of a mobile phone based automated MCI screening application what is currently under development in our research programme. Keywords: language, MCI, screening 4 | www.adi2016.org @ADIConferenve / ADI2016 Plenary Abstracts PL04 Date: Friday 22 April 2016 Session: Improving Dementia Care Through Research PALLIATIVE CARE FOR PEOPLE WITH DEMENTIA AND THEIR FAMILIES Jenny T. Van der Steen1 1VU University Medical Center, EMGO Institute for Health and Care Research, Department of General Practice & Elderly Care Medicine, 1081BT, Amsterdam, Van der Boechorststraat 7, NETHERLANDS Abstract: Palliative care is multidisciplinary, holistic, person-centred care that focuses on quality of life in case of a progressive disease that cannot be cured or that is life-threatening. Although the course of the disease is difficult to predict, there are good reasons for people with dementia and their families to access palliative care. Both the person with dementia and their family may have complex, individual and variable needs as the disease progresses, and for this a palliative approach offers important benefits. Palliative care is often misunderstood; it is not limited to the withholding of futile aggressive medical interventions, or terminal care for the dying. Important mainstays of palliative care in practice are (1) the providing of comfort through systematic monitoring and (non)pharmacological treatment of burdensome symptoms, and (2) person-centred care, communication and shared decision making. Experts found these domains the most important for both palliative care practice and research in people with dementia. Anticipation of needs and symptoms and preparing families for new roles is important in palliative care, as is spiritual care in addition to physical and psychosocial care. Palliative care may start early in the disease course, but a focus on quality of life in terms of functioning or comfort rather than length of life becomes more and more important and may ultimately become the preferred treatment goal with progression of the dementia. Hot topics in research at present include the developing and testing of tools that support advance care planning and tools to help identify symptoms in non]verbal people with dementia, and the development of complex palliative care interventions. Promising strategies to improve care for people with dementia and their families link dementia care expertise to expertise in palliative care. This may be achieved by promoting collaboration on the level of organizations, and by educating caregivers who specialize in either of the two areas for a better understanding of why, how and when to apply palliative care in dementia. The presentation will illustrate palliative care in dementia as defined by the European Association for Palliative Care and recent research in palliative care in dementia. Keywords: Palliative care, End of life alzheimersdiseaseinternational www.adi2016.org | 5 Plenary Abstracts PL05 Date: Friday 22 April 2016 Session: Improving Dementia Care Through Research IMPROVING DEMENTIA CARE THROUGH RESEARCH Martin Orrell1 1Institute of Mental Health, Nottingham, UNITED KINGDOM Abstract: The recent World Health Organisation Ministerial Conference on Global Action against Dementia shows that the focus on finding the causes and the cures for the dementias is intensifying. Since a ‘cure’ for the complex syndrome of dementia is not expected before 2025 there is an urgent need for a huge research investment both on prevention of dementia and also how to improve care for people with dementia and their families. The 21st century has seen major research advances in psychosocial interventions for dementia and also support for family carers thanks to increased funding, better methodology, and collaboration and knowledge
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