Acta Medica Port
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Observational Study
Needs for Care, Service Use and Quality of Life in Dementia: 12-Month Follow-Up of the Actifcare Study in Portugal.
The intermediate stages of dementia are relatively under-researched, including in Portugal. The Actifcare (ACcess to TImely Formal Care) EU-JPND project studied people with mild-moderate dementia, namely their needs, access to and use of community services (e.g., day centers, home support). In our baseline assessment of the Portuguese Actifcare cohort, the unmet needs of some participants would call for formal support, which was not always accessible or used. We now report the main results of the 12-month follow-up, analyzing changes in needs, service (non)use, quality of life and related variables. ⋯ People with dementia displayed complex biopsychosocial unmet needs. Their cognitive-functional decline over one year was not accompanied by a corresponding increase in any pattern of unmet need, nor of service use. Reliance on informal care (namely supervision) may have contributed to this. Caregiving-related outcomes evolved according to different trends, although stability was almost the rule. Primary carers were even more present at follow-up, without an apparently heavier toll on their own needs, burden, and quality of life. Overall, this longitudinal study comprehensively assessed Portuguese community-dwelling people with dementia. Despite the lack of generalizability, participants' needs remained overall stable and partly unmet over one year. Longer follow-up periods are needed to understand such complex processes.
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Gender dysphoria is socially more visible and discussed today, but still underdiagnosed. It refers to distress and/or impaired function caused by inconsistency between the sex assigned at birth and gender identification. ⋯ We describe the diagnosis of gender dysphoria and use of a patient centered multidisciplinary and family approach in a 12-year-old rural born adolescent, assigned female at birth. Our aim is to raise awareness of early symptoms and signs of gender dysphoria and problems faced by transgender people and their families during childhood, leading to gender dysphoria, and we hope our successful approach might improve healthcare provision for these patients, particularly in rural areas.