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dc.contributor.authorMayrhofer, Andrea
dc.contributor.authorGreenwood, Nan
dc.contributor.authorSmeeton, Nigel
dc.contributor.authorAlmack, Kathryn
dc.contributor.authorBuckingham, Louise
dc.contributor.authorShora , Shaheen
dc.contributor.authorGoodman, Claire
dc.date.accessioned2021-03-28T22:00:01Z
dc.date.available2021-03-28T22:00:01Z
dc.date.issued2021-03-21
dc.identifier.citationMayrhofer , A , Greenwood , N , Smeeton , N , Almack , K , Buckingham , L , Shora , S & Goodman , C 2021 , ' Understanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom : Results of an online survey ' , Health and Social Care in the Community . https://doi.org/10.1111/hsc.13334
dc.identifier.issn0966-0410
dc.identifier.otherPURE: 24737334
dc.identifier.otherPURE UUID: 1cda12d1-d537-4c4c-98b9-14850d4a345a
dc.identifier.otherScopus: 85102737319
dc.identifier.otherORCID: /0000-0001-9460-5411/work/91649651
dc.identifier.otherORCID: /0000-0002-4342-241X/work/91649690
dc.identifier.urihttp://hdl.handle.net/2299/24194
dc.description© 2021 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd. This is an open access article. https://creativecommons.org/licenses/by/4.0/
dc.description.abstractAlthough 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.en
dc.format.extent8
dc.language.isoeng
dc.relation.ispartofHealth and Social Care in the Community
dc.subjectyoung onset dementia, financial impact, personal independence payment (PIP), social care, assessment, care costs, financial advice
dc.subjectassessment
dc.subjectpersonal independence payment (PIP)
dc.subjectyoung onset dementia
dc.subjectcare costs
dc.subjectfinancial impact
dc.subjectfinancial advice
dc.subjectsocial care
dc.subjectPublic Health, Environmental and Occupational Health
dc.subjectHealth Policy
dc.subjectSocial Sciences (miscellaneous)
dc.subjectSociology and Political Science
dc.titleUnderstanding the financial impact of a diagnosis of young onset dementia on individuals and families in the United Kingdom : Results of an online surveyen
dc.contributor.institutionCentre for Research in Public Health and Community Care
dc.contributor.institutionOlder People's Health and Complex Conditions
dc.contributor.institutionSchool of Health and Social Work
dc.contributor.institutionCommunities, Young People and Family Lives
dc.description.statusPeer reviewed
dc.identifier.urlhttp://www.scopus.com/inward/record.url?scp=85102737319&partnerID=8YFLogxK
rioxxterms.versionVoR
rioxxterms.versionofrecordhttps://doi.org/10.1111/hsc.13334
rioxxterms.typeJournal Article/Review
herts.preservation.rarelyaccessedtrue


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