Access to timely formal care in dementia: Baseline results of the Actifcare cohort study with a focus on the Portuguese sample
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Introduction: Persons with dementia (PwD) and their informal carers have unmet needs, partly related to untimely access to services (e.g. day care, home support). We lack international comparisons on how these issues impact on quality of life, namely in the intermediate stages of dementia. The Actifcare (ACcess to Timely Formal Care) EU-JPND project aims to evaluate access to and (non)utilization of dementia formal care in eight countries (The Netherlands, UK, Germany, Sweden, Norway, Ireland, Italy, Portugal), as related to unmet needs and quality of life. Methods: Besides conducting reviews on access/utilization of services and qualitative explorations of PwD, carers and professionals' views, Actifcare includes a prospective study (one year follow-up) of PwD and their informal carers. Assessments include the Camberwell Assessment of Need for the Elderly and QoL-AD. We describe the baseline characteristics of our cohort, focusing on Portuguese data (FCT-JPND-HC/0001/2012). Results: We recruited 453 dyads (n = 66 in Portugal), generally interviewed at home. PwD were mostly women (54%), aged 47-98 years; Alzheimer's disease was the most frequent diagnosis (48%). Carers were spouses (60%), women (66%), mean age 66 (SD = 14) years. In Portugal, recruitment took place in primary care, neurology and psychiatry outpatient services, NGOs and Alzheimer Portugal. Conclusions: The cohort study is being successfully conducted. By mid-2016, we will start to analyse international differences regarding the (un)timely access to services and its impact on quality of life and needs for care. Some differences amongst countries are already becoming apparent. We hope to contribute significantly to best practice recommendations in dementia.