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Funding Information: Work leading directly to this paper was not funded. The 10/66 DRG dementia prevalence study in Portugal was supported by FCT (Fundação para a Ciência e a Tecnologia; PTDC/SAU-EPI/113652/2009: “Prevalence of old age neuropsychiatric disorders: contribution to mental health policy in Portugal” – P.I. M. Xavier). Publisher Copyright: © 2021 The Author(s). Published by S. Karger AG, Basel on behalf of NOVA National School of Public Health. This article is licensed under the Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC). Dementia poses major public health challenges, and high-quality epidemiological data are needed for service planning. Published estimates of numbers of people with dementia in Portugal have been based, in most cases, on prevalence rates derived from international studies or expert consensus. As in many other countries, Portuguese community prevalence studies' results are nongeneralizable to a country level. Moreover, their prevalence estimates differ (not surprisingly, owing to different methodologies, e.g., design, sampling, and diagnostic criteria). Regardless, the Portuguese 10/66 Dementia Research Group (10/66 DRG) population-based survey fulfilled 10 out of 11 Alzheimer's Disease International quality criteria for prevalence studies. It relied on cross-culturally validated methods, fostering a wide comparability of results. Therefore, we can provide rough estimates of 217,549 community dwellers with dementia in Portugal according to the 10/66 DRG criteria (that would be only 85,162 according to DSM-IV criteria). This refers to people aged 65 years or older who are not institutionalized. Although broadly consistent with international projections, these estimates must be cautiously interpreted. Particularly in the context of scarce funding, which will probably last for years, we need more efficient, evidence-based dementia policies. Concerning further epidemiological studies, high-quality methods are needed but also their comparability potential should be improved at national and international levels. Most of all, fund allocation in Portugal should now privilege routine dementia information systems in both health and social services. publishersversion published

Objectives To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. Methods We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. Results Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p

OBJECTIVES: To examine prospectively the association between unmet needs for daytime activities and company and behavioural and psychological symptoms of dementia. METHODS: We included 451 people with mild or moderate dementia, from eight European countries, who were assessed three times over 12 months. Unmet needs were measured with the Camberwell Assessment of Need for the Elderly. Three sub-syndromes of the Neuropsychiatric Inventory-Questionnaire were regressed, one-by-one, against unmet needs for daytime activities and company, adjusting for demographic and clinical-functional covariates. RESULTS: Unmet needs for daytime activities were associated with more affective symptoms at baseline, six and twelve months, mean 0.74 (p

Funding: Fundação para a Ciência e Tecnologia - JPND- -HC/0001/2012/EU Joint Programme–Neurodegenerative Disease Research, JPND/2013/2. A autora Maria J. Marques foi apoiada pela FCT (PD/ BD/128011/2016) e pelo Fundo Social Europeu através do Programa Operacional Potencial Humano. publishersversion published

Funding: The Research Council of Norway; Portugal, Foundation for Science and Technology (FCT - JPND-HC/0001/2012); the United Kingdom, Economic and Social Research Council. The funding organisations did not influence the design of the study or the content of the manuscript Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken by decision makers to enhance access and use of community care services, and thereby enhance quality of care and quality of life for home dwelling people with dementia and their informal carers. publishersversion published

Purpose The Quality of Life Alzheimer’s Disease Scale (QoL-AD) is commonly used to assess disease specific health-related quality of life (HRQoL) as rated by patients and their carers. For cost-effectiveness analyses, utilities based on the EQ-5D are often required. We report a new mapping algorithm to obtain EQ-5D indices when only QoL-AD data are available. Methods Different statistical models to estimate utility directly, or responses to individual EQ-5D questions (response mapping) from QoL-AD, were trialled for patient-rated and proxy-rated questionnaires. Model performance was assessed by root mean square error and mean absolute error. Results The response model using multinomial regression including age and sex, performed best in both the estimation dataset and an independent dataset. Conclusions The recommended mapping algorithm allows researchers for the first time to estimate EQ-5D values from QoL-AD data, enabling cost-utility analyses using datasets where the QoL-AD but no utility measures were collected.

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Purpose Informal care constitutes an important part of the total care for people with dementia. Therefore, the impact of the syndrome on their caregivers as well as that of health and social care services for people with dementia should be considered. This study investigated the convergent and clinical validity of the CarerQol instrument, which measures and values the impact of providing informal care, in a multi-country sample of caregivers for people with dementia. Methods Cross-sectional data from a sample of 451 respondents in eight European countries, collected by the Actifcare project, were evaluated. Convergent validity was analysed with Spearman’s correlation coefficients and multivariate correlations between the CarerQol-7D utility score and dimension scores, and other similar quality of life measures such as CarerQol-VAS, ICECAP-O, and EQ-5D. Clinical validity was evaluated by bivariate and multivariate analyses of the degree to which the CarerQol instrument can differentiate between characteristics of caregivers, care receivers and caregiving situation. Country dummies were added to test CarerQol score differences between countries. Results The mean CarerQol utility score was 77.6 and varied across countries from 74.3 (Italy) to 82.3 (Norway). The scores showed moderate to strong positive correlations with the CarerQol-VAS, ICECAP-O, and EQ-5D health problems score of the caregiver. Multivariate regression analysis showed that various characteristics of the caregiver, care receiver and caregiving situation were associated with caregiver outcomes, but there was no evidence of a country-level effect. Conclusion This study demonstrates the convergent and clinical validity of the CarerQol instrument to evaluate the impact of providing informal care for people with dementia.

Objectives: Home-dwelling people with dementia and their informal carers experience barriers impeding access to community care services. This study is a part of the Actifcare project where eight countries participated. The aim was to achieve consensus on best practice recommendations for enhancing access to and use of formal community care services. Method: A Delphi consensus process was conducted. A total of 48 professional experts, 14 people with dementia and 20 informal carers rated the importance of 72 statements on a 7-point Likert scale. Consensus was based on the median and level of dispersion. Results: Sixty-two statements reached consensus, resulting in three categories of recommendations. An appointed contact person was central in Recommendations to enhance access. Coordination and flexibility in setting and type of services were among the Recommendations to enhance use. Training of health care personnel and person-centred care were central Recommendations that can facilitate access or use indirectly. Conclusion: The Actifcare Best Practice Recommendations suggest practical measures that can be taken bydecision makers to enhance access and use of community care services, and there by enhance quality of care and quality of life for home dwelling people with dementia and their informal carers. Abbreviations: Actifcare: ACcess to TImely Formal Care; AE: Alzheimer Europe;; EWGPWD: European Working Group of People with Dementia;; GP: General Practitioner.