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

Lookup NU author(s): Dr Andrea Mayrhofer



This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND).


Copyright © The Author(s) 2020. Published by Cambridge University Press.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 community level 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.

Publication metadata

Author(s): Mayrhofer AM, Shora S, Tibbs M-A, Russell S, Littlechild B, Goodman C

Publication type: Review

Publication status: Published

Journal: Ageing and Society

Year: 2021

Volume: 41

Issue: 11

Pages: 2437-2445

Print publication date: 01/11/2021

Online publication date: 05/05/2020

Acceptance date: 10/03/2020

ISSN (print): 0144-686X

ISSN (electronic): 1469-1779

Publisher: Cambridge University Press


DOI: 10.1017/S0144686X20000422