Abstract
The chapter focuses on the topics of timely diagnosis, disclosure of the diagnosis (e.g. quality of the disclosure, reactions and sharing the diagnosis with others) and the provision of appropriate support and care after diagnosis (e.g. information received, care and support at the time of diagnosis). Each section begins with a brief overview of key issues related to the topic and how these should be addressed from an ethical and human rights perspective. This is followed by a reflection on the current situation and practices based on a five-country survey on the experiences of diagnosis and post-diagnostic support of family carers for a relative with dementia. The final part of the chapter highlights issues that need to be addressed and improved and provides some recommendations.
This chapter was written by Alzheimer Europe, building on existing literature and previous work developed by the organisation, such as the five-country survey. It also includes some short supporting commentaries from members of the organisation’s European Working Group of People with Dementia.
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Notes
- 1.
Principle in the Convention on the Rights of Persons with Disabilities (2006), which states that reasonable adaptations should be made to ensure that people with disabilities enjoy the same rights and opportunities as other members of society.
Abbreviations
- AE:
-
Alzheimer Europe
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Gove, D., Diaz-Ponce, A., Georges, J. (2021). Diagnosis and Support of Patients with Dementia: A Patient Perspective on Current Goals and Practice. In: Frederiksen, K.S., Waldemar, G. (eds) Management of Patients with Dementia. Springer, Cham. https://doi.org/10.1007/978-3-030-77904-7_2
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