Dementia (London, England)
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Research is limited on end-of-life treatment decisions made by African American family caregivers. In a pilot study, we examined the feasibility of implementing an advance care treatment plan (ACT-Plan), a group-based education intervention, with African American dementia caregivers. Theoretically based, the ACT-Plan included strategies to enhance knowledge, self-efficacy, and behavioral skills to make end-of-life treatment plans in advance. ⋯ Self-efficacy and knowledge about dementia, cardiopulmonary resuscitation, mechanical ventilation, and tube feeding increased for ACT-Plan participants but not for the attention-control. More ACT-Plan than attention-control participants developed advance care plans for demented relatives. Findings warrant a randomized efficacy trial.
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The experience of being a carer of a person with dementia at the end of life is expressed in these 12 accounts. This is a synthesis of the concerns and challenges for carers at the end of life. ⋯ What emerges from this review is a range of perspectives that provide contrasting views of the heterogeneity of carers and professionals. This may be helpful for professionals and policy makers to consider when planning end-of-life care strategies for people with dementia and insights drawn from hearing directly from carers may be powerful learning tools.
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Primary care is ideally placed to recognise and manage dementia and yet dementia can be overlooked or misattributed by primary care practitioners and is underdiagnosed. This might be explained by a lack of formal training in the diagnosis of dementia combined with a reluctance to diagnose due to its associated stigma. ⋯ Data was analysed thematically and four themes emerged: Reframing dementia as cognitive decline (Individual level); triggers for the recognition of dementia (Practitioner level); engaging the whole primary care team (Practice level); the relationship between primary and secondary care (Service level). Findings are discussed in the context of their contribution to challenging attitudes to dementia in primary care and the positive aspects of person-centred primary care for dementia.