The MOPEAD project: Advancing patient engagement for the detection of "hidden" undiagnosed cases of Alzheimer's disease in the community.

In most, if not all health systems, dementia is underdiagnosed, and when diagnosis occurs, it is typically at a relatively late stage in the disease process despite mounting evidence showing that a timely diagnosis would result in numerous benefits for patients, families, and society. Moving toward earlier diagnoses in Alzheimer's disease (AD) requires a conscientious and collective effort to implement a global strategy addressing the multiple causes hindering patient engagement at different levels of society. This article describes the design of the Models of Patient Engagement for Alzheimer's Disease project, an ongoing EU-funded public-private multinational initiative that will compare four innovative patient engagement strategies across five European countries regarding their ability to identify individuals with prodromal AD and mild AD dementia, which are "hidden" in their communities and traditionally not found in the typical memory clinic setting. The strategies include an online AD citizen science platform, an open house initiative at the memory clinics, and patient engagement at primary care and diabetologist clinics.

Achieving consensus and controversy around applicability of palliative care to dementia.

BACKGROUND: People with dementia may benefit from palliative care which specifically addresses the needs of patients and families affected by this life-limiting disease. On behalf of the European Association for Palliative Care (EAPC), we recently performed a Delphi study to define domains for palliative care in dementia and to provide recommendations for optimal care. An international panel of experts in palliative care, dementia care or both, achieved consensus on almost all domains and recommendations, but the domain concerning the applicability of palliative care to dementia required revision. METHODS: To examine in detail, the opinions of the international panel of 64 experts around the applicability of palliative care, we explored feedback they provided in the Delphi process. To examine which experts found it less important or less applicable, ordinal regression analyses related characteristics of the panelists to ratings of overall importance of the applicability domain, and to agreement with the domain's four recommendations. RESULTS: Some experts expressed concerns about bringing up end-of-life issues prematurely and about relabeling dementia care as palliative care. Multivariable analyses with the two outcomes of importance and agreement with applicability indicated that younger or less experienced experts and those whose expertise was predominantly in dementia care found palliative care in dementia less important and less applicable. CONCLUSIONS: Benefits of palliative care in dementia are acknowledged by experts worldwide, but there is some controversy around its early introduction. Further studies should weigh concerns expressed around care receiving a "palliative" label versus the benefits of applying palliative care early.

An evaluation of palliative care contents in national dementia strategies in reference to the European Association for Palliative Care white paper.

BACKGROUND: Dementia involves a progressive decline in many functional areas. Policy and practice guidelines should cover the entire course of the disease from early detection to the end-of-life. The present study aimed to evaluate the contents of national dementia strategies with a focus on palliative care content. METHODS: We employed qualitative content analyses. Sixteen national dementia strategies from 14 countries were reviewed. Using open coding, the contents were compared to the domains and recommendations of the palliative care in dementia white paper of the European Association for Palliative Care (EAPC). RESULTS: Although palliative care was not explicitly referred to in eight of the 14 countries and only to a limited extent in three countries, a number of domains from the EAPC white paper were well represented, including "person-centered care, communication, and shared decision making"; "continuity of care"; and "family care and involvement." Three countries that referred to palliative care did so explicitly, with two domains being well represented: "education of the health care team"; and "societal and ethical issues." The strategies all lacked reference to the domain of "prognostication and timely recognition of dying" and to spiritual caregiving. CONCLUSIONS: National dementia strategies cover part of the recent definition of palliative care in dementia, although they do not frequently label these references as "palliative care." In view of the growing numbers of people dying with dementia, preparation for the last phase of life should be added to national strategies.

White paper defining optimal palliative care in older people with dementia: a Delphi study and recommendations from the European Association for Palliative Care.

BACKGROUND: Dementia is a life-limiting disease without curative treatments. Patients and families may need palliative care specific to dementia. AIM: To define optimal palliative care in dementia. METHODS: Five-round Delphi study. Based on literature, a core group of 12 experts from 6 countries drafted a set of core domains with salient recommendations for each domain. We invited 89 experts from 27 countries to evaluate these in a two-round online survey with feedback. Consensus was determined according to predefined criteria. The fourth round involved decisions by the core team, and the fifth involved input from the European Association for Palliative Care. RESULTS: A total of 64 (72%) experts from 23 countries evaluated a set of 11 domains and 57 recommendations. There was immediate and full consensus on the following eight domains, including the recommendations: person-centred care, communication and shared decision-making; optimal treatment of symptoms and providing comfort (these two identified as central to care and research); setting care goals and advance planning; continuity of care; psychosocial and spiritual support; family care and involvement; education of the health care team; and societal and ethical issues. After revision, full consensus was additionally reached for prognostication and timely recognition of dying. Recommendations on nutrition and dehydration (avoiding overly aggressive, burdensome or futile treatment) and on dementia stages in relation to care goals (applicability of palliative care) achieved moderate consensus. CONCLUSION: We have provided the first definition of palliative care in dementia based on evidence and consensus, a framework to provide guidance for clinical practice, policy and research.

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.