{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,11,2]],"date-time":"2026-11-02T04:27:39Z","timestamp":1793593659709,"version":"4.5.0"},"reference-count":55,"publisher":"SAGE Publications","issue":"8","license":[{"start":{"date-parts":[[2026,7,26]],"date-time":"2026-07-26T00:00:00Z","timestamp":1785024000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,7,26]],"date-time":"2026-07-26T00:00:00Z","timestamp":1785024000000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"name":"Alzheimer\u2019s Society","award":["515"],"award-info":[{"award-number":["515"]}],"id":[{"id":"https:\/\/ror.org\/0472gwq90","id-type":"ROR","asserted-by":"crossref"}]},{"name":"Scottish Dementia Research Consortium ECR Resource Fund"}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Dementia"],"published-print":{"date-parts":[[2026,11]]},"abstract":"<jats:p>Volunteering has been proposed as a way for people with young onset dementia to engage in personally meaningful activities; promoting social connections and creating opportunities to actively participate in the community. However, people with young onset dementia are typically positioned as dependent on volunteers, rather than being recognised as a resource. A social citizenship approach challenges this positioning; illuminating the contribution that people with young onset dementia can make when appropriate support is available. However, there is little understanding of how to facilitate volunteering for people with young onset dementia. This study was co-produced by The Smarties, a team of six researchers living with young onset dementia and two facilitators. Together we explored how people with young onset dementia volunteer in the UK, the benefits and barriers, and how access to volunteering can be improved. Audio data of people with young onset dementia discussing their experiences of volunteering were used from the Dementia Diaries project. The data were co-analysed with the co-researchers living with dementia. Three themes were developed that highlight the importance of valuing the volunteer; encompassing what they bring to the volunteering from their past, what they gain from it in their present, and for what they could achieve in the future. This research contributes to the limited pool of literature demonstrating how volunteering could be a way for people living with young onset dementia to engage in personally meaningful activity. It highlights how volunteering can be a practice of social citizenship, empowering people with dementia to take control of their narrative by learning new skills, building solidarity with peers, and celebrating unique interests and identities. We share practical recommendations guided by the understanding that for volunteering to be accessible to people with young onset dementia, then ensuring disabling structures and practices are recognised and removed is paramount.<\/jats:p>","DOI":"10.1177\/14713012261471610","type":"journal-article","created":{"date-parts":[[2026,7,27]],"date-time":"2026-07-27T03:39:40Z","timestamp":1785123580000},"page":"1743-1760","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["Volunteering as Meaningful Activity for People Living With Young Onset Dementia: A Thematic Co-Analysis"],"prefix":"10.1177","volume":"25","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-4491-4894","authenticated-orcid":false,"given":"Rose E.","family":"Vincent","sequence":"first","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4378-1735","authenticated-orcid":false,"given":"Rosalie","family":"Ashworth","sequence":"additional","affiliation":[{"name":"NHS Tayside"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Irene","family":"Donaldson","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Julie","family":"Hayden","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gerald","family":"King","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Chris","family":"Maddocks","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Keith","family":"Oliver","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martin","family":"Robertson","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9797-2188","authenticated-orcid":false,"given":"Tom C.","family":"Russ","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-0782-9746","authenticated-orcid":false,"given":"Heather","family":"Wilkinson","sequence":"additional","affiliation":[{"name":"University of Edinburgh"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"179","published-online":{"date-parts":[[2026,7,26]]},"reference":[{"key":"e_1_3_8_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40900-024-00669-w"},{"key":"e_1_3_8_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-031-27223-3"},{"key":"e_1_3_8_4_1","doi-asserted-by":"publisher","DOI":"10.1080\/09687599.2014.924905"},{"key":"e_1_3_8_5_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0144686X12001158"},{"key":"e_1_3_8_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaging.2006.09.002"},{"key":"e_1_3_8_7_1","doi-asserted-by":"publisher","DOI":"10.51952\/9781847428585"},{"key":"e_1_3_8_8_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301218789292"},{"key":"e_1_3_8_9_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301216639463"},{"key":"e_1_3_8_10_1","volume-title":"Successful qualitative research: A practical guide for beginners","author":"Braun V.","year":"2013","unstructured":"Braun V., Clarke V. (2013). Successful qualitative research: A practical guide for beginners. Sage."},{"key":"e_1_3_8_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732318774768"},{"key":"e_1_3_8_12_1","volume-title":"Why DemenTalent","author":"DemenTalent","unstructured":"DemenTalent. (n.d.). Why DemenTalent. https:\/\/www.dementalent.nl\/waarom-dementalent-2"},{"key":"e_1_3_8_13_1","unstructured":"Dementia Diaries. (n.d.). Dementia Diaries. https:\/\/dementiadiaries.org\/"},{"key":"e_1_3_8_14_1","volume-title":"70,800 UK adults are affected by young onset dementia","author":"DementiaUK","year":"2022","unstructured":"DementiaUK. (2022, 14th September 2022). 70,800 UK adults are affected by young onset dementia. https:\/\/www.dementiauk.org\/news\/new-figures-show-70800-uk-adults-are-affected-by-young-onset-dementia\/"},{"key":"e_1_3_8_15_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301220973632"},{"key":"e_1_3_8_16_1","doi-asserted-by":"publisher","DOI":"10.1002\/9780470776094"},{"key":"e_1_3_8_17_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-020-5027-8"},{"key":"e_1_3_8_18_1","doi-asserted-by":"publisher","DOI":"10.1332\/239788219X15538570345636"},{"key":"e_1_3_8_19_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.maturitas.2016.07.019"},{"key":"e_1_3_8_20_1","volume-title":"Young onset dementia: A guide to recognition, diagnosis, and supporting individuals with dementia and their families","author":"Hayo H.","year":"2018","unstructured":"Hayo H., Alison W., Parkes J. (2018). Young onset dementia: A guide to recognition, diagnosis, and supporting individuals with dementia and their families. Jessica Kingsley Publishers."},{"key":"e_1_3_8_21_1","doi-asserted-by":"publisher","DOI":"10.4276\/030802213X13757040168270"},{"key":"e_1_3_8_22_1","first-page":"173","volume-title":"A critical history of dementia studies","author":"Houston A.","year":"2024","unstructured":"Houston A., McAdam N., McKillop J., Robertson M., Brown P. (2024). Experts by experience: 'I don't want to be shaken, I want to be a shaker. In Capstick A., Fletcher J. R. (Eds.), A critical history of dementia studies (1 ed., Vol. 1, pp. 173\u2013185). Routledge. https:\/\/doi.org\/10.4324\/9781003290353-18","edition":"1"},{"key":"e_1_3_8_23_1","first-page":"176","volume-title":"Young onset dementia reconsidered","author":"Hussey J.","year":"2025","unstructured":"Hussey J., Oyebode J. (2025). Meaningful activity. In Oyebode J., Rook G. (Eds.), Young onset dementia reconsidered (pp. 176\u2013191). Open University Press."},{"key":"e_1_3_8_24_1","volume-title":"Review of literature, in The ABC of BAME New, mixed method research into black, Asian and minority ethnic groups and their motivations and barriers to volunteering","author":"Hylton K.","year":"2019","unstructured":"Hylton K., Lawton R., Watt W., Wright H., Williams K. (2019). Review of literature, in The ABC of BAME New, mixed method research into black, Asian and minority ethnic groups and their motivations and barriers to volunteering. https:\/\/eprints.leedsbeckett.ac.uk\/id\/eprint\/5601\/"},{"key":"e_1_3_8_25_1","volume-title":"Time well spent 2023: A national survey on the volunteer experience","author":"Kanemura R.","year":"2023","unstructured":"Kanemura R., McGarvey A., Farrow A. (2023). Time well spent 2023: A national survey on the volunteer experience. https:\/\/www.ncvo.org.uk\/news-and-insights\/news-index\/time-well-spent-2023\/download-this-report\/"},{"key":"e_1_3_8_26_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301211407806"},{"key":"e_1_3_8_27_1","volume-title":"People with dementia at the heart of research","author":"Litherland R.","year":"2024","unstructured":"Litherland R., Hare P. (2024). People with dementia at the heart of research. Jessica Kingsley Publishers."},{"key":"e_1_3_8_28_1","first-page":"125","volume-title":"Young onset dementia reconsidered","author":"Mayrhofer A.","year":"2025","unstructured":"Mayrhofer A. (2025). Having a voice in planning services. In Oyebode J., Rook G. (Eds.), Young onset dementia reconsidered (pp. 125\u2013143). Open University Press."},{"key":"e_1_3_8_29_1","doi-asserted-by":"publisher","DOI":"10.1080\/13607863.2017.1334038"},{"key":"e_1_3_8_30_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301218793463"},{"key":"e_1_3_8_31_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0144686X20000422"},{"key":"e_1_3_8_32_1","volume-title":"Dutch national dementia strategy 2021-2030","author":"Ministry of Health Welfare and Sport","year":"2020","unstructured":"Ministry of Health Welfare and Sport. (2020). Dutch national dementia strategy 2021-2030. Retrieved from. https:\/\/www.alzint.org\/u\/Netherlands-NationalDementiaStrategy2021-2030.pdf"},{"key":"e_1_3_8_33_1","volume-title":"What is volunteering?","author":"NCVO","year":"2021","unstructured":"NCVO. (2021, 12 April 2021). What is volunteering?.https:\/\/www.ncvo.org.uk\/help-and-guidance\/involving-volunteers\/understanding-volunteering\/what-is-volunteering\/"},{"key":"e_1_3_8_34_1","volume-title":"The true cost of delivering public services","author":"NCVO","year":"2024","unstructured":"NCVO. (2024). The true cost of delivering public services. https:\/\/www.ncvo.org.uk\/news-and-insights\/news-index\/the-true-cost-of-delivering-public-services\/survey-findings\/#:\u223c:text=However%2Cpublicbodiesseemto,theneedswithinacommunity"},{"key":"e_1_3_8_35_1","doi-asserted-by":"publisher","DOI":"10.1093\/geroni\/igae098.4127"},{"key":"e_1_3_8_36_1","volume-title":"Guidance on co-producing a research project","author":"NIHR","year":"2021","unstructured":"NIHR. (2021\/2024). Guidance on co-producing a research project. https:\/\/www.learningforinvolvement.org.uk\/content\/resource\/nihr-guidance-on-co-producing-a-research-project\/"},{"key":"e_1_3_8_37_1","doi-asserted-by":"publisher","DOI":"10.1177\/16094069231211247"},{"key":"e_1_3_8_38_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012221138145"},{"key":"e_1_3_8_39_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301217701274"},{"key":"e_1_3_8_40_1","doi-asserted-by":"publisher","DOI":"10.1080\/17482631.2023.2176278"},{"key":"e_1_3_8_41_1","doi-asserted-by":"publisher","DOI":"10.1177\/14713012221111014"},{"key":"e_1_3_8_42_1","first-page":"162","volume-title":"Young onset dementia reconsidered","author":"Ritchie L.","year":"2025","unstructured":"Ritchie L., Lebec L., Allen R. (2025). Young onset dementia and employment. In Oyebode J., Rook G. (Eds.), Young onset dementia reconsidered (pp. 162\u2013175). Open University Press."},{"key":"e_1_3_8_43_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0144686X17000563"},{"key":"e_1_3_8_44_1","doi-asserted-by":"publisher","DOI":"10.1111\/jpm.12154"},{"key":"e_1_3_8_45_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.12852"},{"key":"e_1_3_8_46_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301212473881"},{"key":"e_1_3_8_47_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jaging.2020.100831"},{"key":"e_1_3_8_48_1","doi-asserted-by":"publisher","DOI":"10.1017\/S0144686X22000162"},{"key":"e_1_3_8_49_1","volume-title":"Volunteering, inequalities and barriers to volunteering: A rapid evidence review","author":"Southby K.","year":"2016","unstructured":"Southby K., South J. (2016). Volunteering, inequalities and barriers to volunteering: A rapid evidence review. https:\/\/eprints.leedsbeckett.ac.uk\/id\/eprint\/3434\/1\/Barriers"},{"key":"e_1_3_8_50_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11266-019-00119-2"},{"key":"e_1_3_8_51_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301217690904"},{"key":"e_1_3_8_52_1","doi-asserted-by":"publisher","DOI":"10.1177\/1471301214548136"},{"key":"e_1_3_8_53_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1041610217001314"},{"key":"e_1_3_8_54_1","volume-title":"The perspectives of people with dementia: Research methods and motivations","author":"Wilkinson H.","year":"2002","unstructured":"Wilkinson H. (2002). The perspectives of people with dementia: Research methods and motivations. Jessica Kingsley."},{"key":"e_1_3_8_55_1","doi-asserted-by":"publisher","DOI":"10.1177\/1468794119893608"},{"key":"e_1_3_8_56_1","volume-title":"What is young onset dementia?","author":"Young Dementia Network","year":"2025","unstructured":"Young Dementia Network. (2025). What is young onset dementia? https:\/\/www.youngdementianetwork.org\/about-young-onset-dementia\/what-is-young-onset-dementia\/"}],"container-title":["Dementia"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/14713012261471610","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/14713012261471610","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/14713012261471610","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,11,2]],"date-time":"2026-11-02T04:03:25Z","timestamp":1793592205000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/14713012261471610"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,26]]},"references-count":55,"journal-issue":{"issue":"8","published-print":{"date-parts":[[2026,11]]}},"alternative-id":["10.1177\/14713012261471610"],"URL":"https:\/\/doi.org\/10.1177\/14713012261471610","relation":{},"ISSN":["1471-3012","1741-2684"],"issn-type":[{"value":"1471-3012","type":"print"},{"value":"1741-2684","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,26]]}}}