Living with young onset dementia: Reflections on recent developments, current discourse, and implications for policy and practice

Abstract

© The Author(s) 2020. Published by Cambridge University Press. This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (http://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.Recent research on young onset dementia (formal diagnosis at age <65) evidences emerging work around pre-diagnosis, diagnosis and the need to improve post-diagnostic support for this group. An increased awareness of young onset dementia has led to the establishment of peer-support groups, support networks and the involvement of people affected by dementia in research. However, the need to join up services at the systems level persists. Third-sector organisations that offer post-diagnostic support at the communitylevel rely heavily on volunteers. Implications for policy and practice are that community-based commissioning of integrated services between health care, social care and the third sector would go a long way to providing the continuity and stability required in dementia support and care along the illness trajectory. This discussion document was written in collaboration with diagnostic services, the charity sector and conversations with people living with, and affected by, dementia.Peer reviewedFinal Published versio