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Musiquence – Design, Implementation and Validation of a Customizable Music and Reminiscence Cognitive Stimulation Platform for People with Dementia

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Musiquence – Design, Implementation and Validation of a Customizable Music and Reminiscence Cognitive Stimulation Platform for People with Dementia Luís Duarte Andrade Ferreira Licenciado em Design de Media Interativos Musiquence – Design, Implementation and Validation of a Customizable Music and Reminiscence Cognitive Stimulation Platform for People with Dementia Dissertação para obtenção do Grau de Doutor em Media Digitais Orientador: Doutor Sergi Bermúdez i Badia, Professor Associado, Faculdade de Ciências Exatas e da Engenharia da Universidade da Madeira Co-orientador: Doutora Sofia Carmen Faria Maia Cavaco, Professora Auxiliar, Faculdade de Ciências e Tecnologia da Universidade Nova de Lisboa Júri: Presidente: Doutor Nuno Manuel Robalo Correia, Professor Catedrático, Faculdade de Ciências e Tecnologia da Universidade Nova de Lisboa Arguente(s): Doutor António Fernando Vasconcelos Cunha Castro Coelho, Professor Associado com Agregação, Faculdade de Engenharia da Universidade do Porto Doutor Rui Filipe Fernandes Prada, Professor Associado, Instituto Superior Técnico da Universidade do Porto Vogal(ais): Doutor Dennis Reidsma, Professor Associado, University of Twente Doutor Roberto Llorens Rodríguez, Professor Auxiliar da Universitat Politècnica de Valencia Doutor Sergi Bermúdez i Badia, Professor Associado, Faculdade de Ciências Exatas e da Engenharia da Universidade da Madeira Doutora Teresa Isabel Lopes Romão, Professora Associada, Faculdade de Ciências e Tecnologia da Universidade Nova de Lisboa Junho 2020 Doctoral Dissertation Title | Musiquence - Design, Implementation and Validation of a Customizable Music and Reminiscence Cognitive Stimulation Platform for People with Dementia. Year | 2020 Author | Luís Duarte Andrade Ferreira Supervision | Professor Doctor Sergi Bermúdez i Badia and Professor Doctor Sofia Cavaco Scientific domain | Informatic engineering Course | Digital Media Institution | Universidade de Nova de Lisboa - Faculdade de Ciências e Tecnologias/ UT Austin III Copyright Luís Duarte Andrade Ferreira, Nº 48747 A Faculdade de Ciências e Tecnologia e a Universidade Nova de Lisboa têm o direito, perpétuo e sem limites geográficos, de arquivar e publicar esta dissertação através de exemplares impressos reproduzidos em papel ou de forma digital, ou por qualquer outro meio conhecido ou que venha a ser inventado, e de a divulgar através de repositórios científicos e de admitir a sua cópia e distribuição com objetivos educacionais ou de investigação, não comerciais, desde que seja dado crédito ao autor e editor. V Acknowledgments I would like to thank all the people who supported me, directly and indirectly, during the dissertation. Firstly, I want to thank my academic advisors Professor Doctor Sergi Bermudez i Badia and Professor Doctor Sofia Cavaco, for their invaluable contribution, experience, and guidance throughout this journey. I also wish to thank the following healthcare institutions: Delegação da Madeira da Alzheimer Portugal, Casa de Saúde São João de Deus, Casa de Saúde Câmara de Pestana, Centro Social e Paroquial de São Bento da Ribeira Brava and healthcare professionals for supporting the project as well as the participants with whom I learned a lot and had the pleasure to work with. I want to thank as well the following agencies for awarding me a scholarship: the Portuguese Foundation for Science and Technology under project NOVA-LINCS (PEest/UID/CEC/04516/2019) and BioVisualSpeech (CMUP-ERI/TIC/0033/2014) as well as ARDITI under the scope of project M1420-09-5369-FSE-000001 Ph.D. studentship and supported by project Larsys UID/EEA/50009/2019. Many thanks to my friends and colleagues from M-ITI and the Neurorehablab for their companionship and friendship. Many thanks to Harry Vasanth, Eduardo Gomes, Daise Faria, Alexandra Mendes, Vitor Hugo, Mary Barreto, Teresa Paulino, Joana Câmara, Rita Costa, Filipe Quintal, and Carla Pestana. Many thanks as well to Henrique Ferreira for assisting and participating in the experimental trials performed at the Delegação da Madeira da Alzheimer Portugal. I would also like to extend my deepest gratitude not only to my friends Yuri Almeida, Luís Correia, Ana Lúcia, and Sabrina Scuri for their unparalleled support during difficult and good times but also to Mónica Spínola for assisting me throughout the experimental trials, data collections and preparations for the pilot longitudinal study. Last but not least, the completion of my dissertation would not have been possible without the support and nurturing of my parents Ana Dinis and António Dinis, my sister Sara Martins and brother- in-law Marco Martins for their profound belief in my work. VII Abstract Dementia is a neurodegenerative disease that affects millions of individuals worldwide and is challenging to diagnose as symptoms may only perceivable decades later. The disease leads to a gradual loss of memory, learning, orientation, language, and comprehension skills, which compromises activities of daily living. Health-related costs caused by dementia will continue to increase over the next few years; between the years 2005 and 2009, an increase of 34% (from $315 to $422 billion worldwide) was observed in treating dementia-related issues. Pharmaceutical approaches have been developed to treat dementia symptoms; unfortunately, the risk of side effects is high. For this reason, non- pharmaceutical methods such as music and reminiscence therapies have gained acceptance as patients with dementia positively respond to such approaches even at later stages of the disease. Nevertheless, further research is needed to understand how music and reminiscence therapy should be used and to quantify their impact on individuals with dementia. The development of serious games has gained attention as an alternative approach to stimulate patients. However, the clinical impact that serious games have on individuals with dementia is still unclear. In this dissertation, we contribute with new knowledge regarding the usage of music and reminiscence approaches in people with dementia through a theoretical model. Based on Baddeley’s working memory model, our model aims to explain how the therapeutic properties of music and reminiscence can have a beneficial effect. To test our model, we developed a novel interactive platform called Musiquence, in which healthcare professionals can create music and reminiscence based cognitive activities to stimulate people with dementia. In this dissertation, we present the results from several studies about the usage and effects that music and reminiscence have on such a population. We performed two studies using Musiquence to study the feasibility of a novel learning method based on musical feedback to aid people with dementia during task performance in virtual reality settings. Results show that participants relied more on music-based feedback during the task performance of virtual reality activities than in other forms of feedback. Also, data suggest that the music-based feedback system can improve task performance, compensating for some dementia-related deficits. We also used Musiquence in a longitudinal one-month-long pilot study to assess its efficacy when used for a cognitive stimulation intervention in dementia patients. The results of the study are promising. The 3 participants showed improvements in terms of general cognition, quality of life, mood, and verbal fluency. Keywords: Music; Reminiscence; Working memory; Serious games; Therapeutic-effect; Game- customization; IX Abstrato A demência é uma doença neurodegenerativa que afeta milhões de indivíduos em todo o mundo e é difícil de diagnosticar, pois os sintomas só podem ser percecionados décadas depois. A doença leva a uma perda gradual de habilidades de memória, aprendizagem, orientação, linguagem e compreensão, que, por sua vez, compromete as atividades da vida quotidiana. Os custos de saúde causados pela demência continuarão a aumentar nos próximos anos. A título exemplificativo, no hiato compreendido entre os anos de 2005 e de 2009 foi registado um aumento de 34% (de US $ 315 para US $ 422 bilhões) nos custos de saúde relacionados com o tratamento desta doença em todo o mundo. Entretanto, foram desenvolvidas diversas abordagens farmacêuticas com vista a mitigar os efeitos da demência. Contudo, o risco de desenvolvimento de efeitos secundários continua elevado. Por esse motivo, os métodos não farmacêuticos, tal como terapia musical e de reminiscência, ganharam crescente aceitação, na medida em que os pacientes com demência têm vindo a respondem positivamente a tais abordagens, mesmo em estágios avançados da doença. No entanto, são necessários mais estudos para entender melhor como a terapia musical e de reminiscência deve ser usada e quantificar seu impacto no tratamento terapêutico de indivíduos com demência. Neste contexto, o desenvolvimento de jogos sérios foi considerado como uma abordagem alternativa para estimular as pessoas com demência. Contudo, o impacto clínico que o jogo sério tem em indivíduos com demência ainda não é claro. Deste modo, com a presente dissertação pretendemos contribuir com conhecimento novo sobre o uso da música e reminiscência em pessoas com demência, usando um modelo teórico que explica como a música e a reminiscência é benéfica para os vários componentes que compõem a memória de trabalho de Baddeley. Para testar o nosso modelo desenvolvemos uma nova plataforma chamada Musiquence que permite aos profissionais de saúde criar atividades baseadas na música e na reminiscência para estimular cognitivamente as pessoas com demência. Nesta dissertação apresentamos os resultados de vários estudos sobre os efeitos que a música e a reminiscência têm sobre
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