The landscape of inequalities in dementia across Europe: First insights from the INTERDEM taskforce.

BACKGROUND: Getting a diagnosis of dementia does not equate to equitable access to care. People with dementia and unpaid carers face many barriers to care, which can vary within, and across, different countries and cultures. With little evidence across different countries, the aim of this scoping exercise was to identify the different and similar types of inequalities in dementia across Europe, and provide recommendations for addressing these. METHODS: We conducted a brief online survey with INTERDEM and INTERDEM Academy members across Europe, and with members of Alzheimer Europe's European Working Group of People with Dementia and Carers in February and March 2023. Members were asked about whether inequalities in dementia care existed within their country; if yes, to highlight three key inequalities. Responses on barriers were coded into groups, and frequencies of inequalities were calculated. Highlighted inequalities were discussed and prioritised at face-to-face and virtual consensus meetings in England, Ireland, Italy, and Poland, involving people with dementia, unpaid carers, health and social care providers, and non-profit organisations. RESULTS: Forty-nine academics, PhD students, people with dementia and unpaid carers from 10 countries (Belgium, Denmark, Germany, Greece, Ireland, Italy, Poland, Malta, Netherlands, UK) completed the survey. The most frequently identified inequalities focused on unawareness and lack of information, higher level system issues (i.e. lack of communication among care professionals), lack of service suitability, and stigma. Other barriers included workforce training and knowledge, financial costs, culture and language, lack of single-point-of-contact person, age, and living location/postcode lottery. There was general consensus among people living dementia and care providers of unawareness as a key barrier in different European countries, with varied priorities in Ireland depending on geographical location. CONCLUSIONS: These findings provide a first insight on dementia inequalities across Europe, generate cross-country learnings on how to address these inequalities in dementia, and can underpin further solution-focused research that informs policy and key decision makers to implement changes.

The perspectives of people with dementia and their supporters on advance care planning: A qualitative study with the European Working Group of People with Dementia.

BACKGROUND: Advance care planning has been defined in an international consensus paper, supported by the European Association for Palliative Care. There are concerns that this definition may not apply to dementia. Moreover, it is not informed by input from people with dementia. AIM: To gather the perspective of the European Working Group of People with Dementia and their supporters on how advance care planning is defined and develop recommendations for changes to the definition. DESIGN: An in-depth qualitative study was conducted, analysing online focus groups and interviews using thematic analysis. SETTING/PARTICIPANTS: We included 12 people with dementia and 9 supporters. RESULTS: Participants suggested several changes to the current advance care planning definition: mentioning people with decreasing decisional capacity; better reflecting the role of family and/or trust-based relationships; reducing focus on end-of-life/medical decisions; strengthening focus on social aspects of care. Elements of the current definition that participants suggested keeping and highlighting include the framing of advance care planning as a continuous process, that is also optional; mention of communication next to documentation of decisions; and the importance of proxy decision makers. Based on this input, we developed three overarching and 16 specific recommendations for a modified definition of advance care planning that is inclusive of people with dementia. CONCLUSIONS: The perspectives of the European Working Group of People with Dementia and their supporters highlighted the need for a person-centred and dementia-inclusive advance care planning definition. We provide tangible recommendations for future adaptations of the definition that reflect these perspectives.

Intelligent digital tools for screening of brain connectivity and dementia risk estimation in people affected by mild cognitive impairment: the AI-Mind clinical study protocol.

More than 10 million Europeans show signs of mild cognitive impairment (MCI), a transitional stage between normal brain aging and dementia stage memory disorder. The path MCI takes can be divergent; while some maintain stability or even revert to cognitive norms, alarmingly, up to half of the cases progress to dementia within 5 years. Current diagnostic practice lacks the necessary screening tools to identify those at risk of progression. The European patient experience often involves a long journey from the initial signs of MCI to the eventual diagnosis of dementia. The trajectory is far from ideal. Here, we introduce the AI-Mind project, a pioneering initiative with an innovative approach to early risk assessment through the implementation of advanced artificial intelligence (AI) on multimodal data. The cutting-edge AI-based tools developed in the project aim not only to accelerate the diagnostic process but also to deliver highly accurate predictions regarding an individual's risk of developing dementia when prevention and intervention may still be possible. AI-Mind is a European Research and Innovation Action (RIA H2020-SC1-BHC-06-2020, No. 964220) financed between 2021 and 2026. First, the AI-Mind Connector identifies dysfunctional brain networks based on high-density magneto- and electroencephalography (M/EEG) recordings. Second, the AI-Mind Predictor predicts dementia risk using data from the Connector, enriched with computerized cognitive tests, genetic and protein biomarkers, as well as sociodemographic and clinical variables. AI-Mind is integrated within a network of major European initiatives, including The Virtual Brain, The Virtual Epileptic Patient, and EBRAINS AISBL service for sensitive data, HealthDataCloud, where big patient data are generated for advancing digital and virtual twin technology development. AI-Mind's innovation lies not only in its early prediction of dementia risk, but it also enables a virtual laboratory scenario for hypothesis-driven personalized intervention research. This article introduces the background of the AI-Mind project and its clinical study protocol, setting the stage for future scientific contributions.

Declaração de consenso da seção de psiquiatria geriátrica da Associação Mundial de Psiquiatria sobre ética e capacidade em pessoas idosas com doença mental / World Psychiatric Association section of old age psychiatry consensus statement on ethics and capacity in older people with mental disorders

CONTEXTO: A Seção de Psiquiatria Geriátrica da Associação Mundial de Psiquiatria (AMP), desde 1997, vem desenvolvendo Declarações de Consenso relevantespara a prática da Psiquiatria Geriátrica. Desde 2006, a Seção vem trabalhando para desenvolver uma Declaração de Consenso sobre Ética e Capacidade em pessoas idosas com transtornos mentais. MÉTODO: Uma Conferência de Consenso foi realizada em Praga em setembro de 2008. Organizada pela Seção de Psiquiatria da Pessoa Idosa da AMP, ela contou com a participação do International Council of Nurses, Alzheimer Europe e Alzheimer Disease International. Os participantes foram reconhecidos pela sua perícia nesse domínio e vieram de 11 países. Incluíam psiquiatras, uma neurologista, um enfermeiro e representantes de cuidadores familiares. RESULTADOS: Após dois dias de reuniões e debate, redigiu-se um rascunho da declaração que foi submetida para análise nas diversas organizações/associações que participaram da reunião. Após as sugestões finais recolhidas, um texto definitivo foi preparado em inglês e publicado. A presente versão em português é da responsabilidade de dois participantes lusófonos da reunião, que são também coautores da declaração de consenso final. CONCLUSÕES: Essa Declaração de Consenso oferece aos clínicos em saúde mental que cuidam de pessoas idosas com transtornos mentais, cuidadores, outros profissionais da saúde e o público em geral as definições e o debate sobre os princípios éticos que podem frequentemente ser complexos e desafiadores, apoiados em orientações práticas para satisfazer tais necessidades e padrões éticos e encorajar a boa prática clínica.

BACKGROUND: The World Psychiatric Association (WPA) Section of Old Age Psychiatry, since 1997, has developed Consensus Statements relevant to the practice of Old Age Psychiatry. Since 2006 the Section has worked to develop a Consensus Statement on Ethics and Capacity in older people with mental disorders. METHOD: A Consensus Conference was realized in Prague, September 2008. The meeting was organized by the WPA Section of Old Age Psychiatry, with the participation of International Council of Nurses, Alzheimer Europe and Alzheimer Disease International. Participants who are recognised for their expertise in this area came from 11 countries and include psychiatrists, a neurologist, a nurse and family caregiving representatives. RESULTS: After two days of debate a draft was prepared and submitted to the organizations/associations represented at the meeting. When their respective comments were collected, a final text was prepared and published originally in English. This Portuguese version was prepared by two members of the meeting who came from Portuguese spoken countries. DISCUSSION: This Consensus Statement offers to mental health clinicians caring for older people with mental disorders, caregivers, other health professionals and the general public the setting out of and discourse in ethical principles which can often be complex and challenging, supported by practical guidance in meeting such ethical needs and standards, and to encouraged good clinical practice.