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

© 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

Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom : results of an online survey

Although literature on postdiagnostic support for people affected by young onset dementia acknowledges financial concerns, this topic has remained underresearched. The aim of this study was to explore the financial impact of a diagnosis of young onset dementia on individuals and families. An online survey, comprising binary yes/no, multiple‐response and open‐ended questions, was codesigned with people living with young onset dementia. The survey was promoted via networks and online platforms. Data were collected from August to October 2019. Survey respondents across the United Kingdom (n = 55) who had received a diagnosis of young onset dementia were aged between 45 and 64, were at different stages of dementia and had been diagnosed with thirteen different types of dementia. Of the 55 respondents, 71% (n = 39) had received assistance from family members when completing the survey. The main financial impact of a diagnosis of young onset dementia resulted from premature loss of income and reduced and often deferred pension entitlements. In some cases, care‐costs became unaffordable. Lack of clarity of processes and procedures around needs assessments, carers' assessments and financial assessments by different organisations resulted in some families having to ask for legal advice and, in some cases, involved lengthy appeal processes. Future research needs to involve Adult Social Care and Third Sector organisations to help codesign and test financial management interventions to support people affected by this progressive health condition

Psychosocial interventions for younger people diagnosed with dementia: A focus on communities

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Third sector provision of dementia support in the community: results from a scoping exercise of charity involvement in the UK

Third sector dementia support is characterised by wide variation and a heavy reliance on volunteer engagement. While there has been a growth in the reach and diversity of different schemes, their short-term funding results in a loss of networks, collaborations and local knowledge. This practice paper reflects on strengthening community-based dementia support and care via public and third sector partnerships. National and local data sources could help charities and commissioners begin to identify inequalities of provision.</jats:p