{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,10,11]],"date-time":"2025-10-11T01:00:42Z","timestamp":1760144442352,"version":"build-2065373602"},"reference-count":34,"publisher":"MDPI AG","issue":"4","license":[{"start":{"date-parts":[[2024,4,22]],"date-time":"2024-04-22T00:00:00Z","timestamp":1713744000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Royal Melbourne Hospital Foundation"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["IJERPH"],"abstract":"<jats:p>Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers\u2019 mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.<\/jats:p>","DOI":"10.3390\/ijerph21040513","type":"journal-article","created":{"date-parts":[[2024,4,22]],"date-time":"2024-04-22T09:53:52Z","timestamp":1713779632000},"page":"513","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Peer Support for Caregivers of People Living with Posterior Cortical Atrophy in Melbourne, Australia: A Feasibility Study"],"prefix":"10.3390","volume":"21","author":[{"given":"Alexander","family":"Mitchell","sequence":"first","affiliation":[{"name":"Neuropsychiatry Centre, Royal Melbourne Hospital, 300 Grattan Street, Parkville 3050, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Wendy","family":"Kelso","sequence":"additional","affiliation":[{"name":"Neuropsychiatry Centre, Royal Melbourne Hospital, 300 Grattan Street, Parkville 3050, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1845-126X","authenticated-orcid":false,"given":"Camille","family":"Paynter","sequence":"additional","affiliation":[{"name":"Melbourne School of Health Sciences, University of Melbourne, Parkville 3052, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Leanne","family":"Hayes","sequence":"additional","affiliation":[{"name":"Neuropsychiatry Centre, Royal Melbourne Hospital, 300 Grattan Street, Parkville 3050, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dennis","family":"Velakoulis","sequence":"additional","affiliation":[{"name":"Neuropsychiatry Centre, Royal Melbourne Hospital, 300 Grattan Street, Parkville 3050, Australia"},{"name":"Department of Psychiatry, University of Melbourne, Parkville 3052, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-4953-4500","authenticated-orcid":false,"given":"Samantha M.","family":"Loi","sequence":"additional","affiliation":[{"name":"Neuropsychiatry Centre, Royal Melbourne Hospital, 300 Grattan Street, Parkville 3050, Australia"},{"name":"Department of Psychiatry, University of Melbourne, Parkville 3052, Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"1968","published-online":{"date-parts":[[2024,4,22]]},"reference":[{"key":"ref_1","first-page":"52","article-title":"Posterior Cortical Atrophy","volume":"25","author":"Schott","year":"2019","journal-title":"Contin. Minneap. Minn."},{"key":"ref_2","doi-asserted-by":"crossref","first-page":"789","DOI":"10.1001\/archneur.1988.00520310107024","article-title":"Posterior Cortical Atrophy","volume":"45","author":"Benson","year":"1988","journal-title":"Arch. Neurol."},{"key":"ref_3","doi-asserted-by":"crossref","first-page":"68","DOI":"10.1097\/WCO.0000000000000767","article-title":"Update on Posterior Cortical Atrophy","volume":"33","author":"Holden","year":"2020","journal-title":"Curr. Opin. Neurol."},{"key":"ref_4","doi-asserted-by":"crossref","first-page":"493","DOI":"10.3233\/JAD-210368","article-title":"Benson\u2019s Disease or Posterior Cortical Atrophy, Revisited","volume":"82","author":"Yerstein","year":"2021","journal-title":"J. Alzheimer\u2019s Dis."},{"key":"ref_5","doi-asserted-by":"crossref","first-page":"23","DOI":"10.1007\/s11940-022-00745-0","article-title":"Diagnosis and Management of Posterior Cortical Atrophy","volume":"25","author":"Yong","year":"2023","journal-title":"Curr. Treat. Options Neurol."},{"key":"ref_6","doi-asserted-by":"crossref","first-page":"870","DOI":"10.1016\/j.jalz.2017.01.014","article-title":"Alzheimer\u2019s Association ISTAART Atypical Alzheimer\u2019s Disease and Associated Syndromes Professional Interest Area. Consensus Classification of Posterior Cortical Atrophy","volume":"13","author":"Crutch","year":"2017","journal-title":"Alzheimer\u2019s Dement. J. Alzheimer\u2019s Assoc."},{"key":"ref_7","doi-asserted-by":"crossref","first-page":"1589","DOI":"10.1001\/jama.2019.4782","article-title":"Diagnosis and Management of Dementia: Review","volume":"322","author":"Arvanitakis","year":"2019","journal-title":"JAMA"},{"key":"ref_8","doi-asserted-by":"crossref","first-page":"182","DOI":"10.5694\/mja2.51849","article-title":"Young-Onset Dementia Diagnosis, Management and Care: A Narrative Review","volume":"218","author":"Loi","year":"2023","journal-title":"Med. J. Aust."},{"key":"ref_9","doi-asserted-by":"crossref","first-page":"e021166","DOI":"10.1136\/bmjopen-2017-021166","article-title":"Understanding the Needs and Experiences of People with Young Onset Dementia: A Qualitative Study","volume":"8","author":"Rabanal","year":"2018","journal-title":"BMJ Open"},{"key":"ref_10","doi-asserted-by":"crossref","unstructured":"Cations, M., Withall, A., Horsfall, R., Denham, N., White, F., Trollor, J., Loy, C., Brodaty, H., Sachdev, P., and Gonski, P. (2017). Why Aren\u2019t People with Young Onset Dementia and Their Supporters Using Formal Services? Results from the INSPIRED Study. PLoS ONE, 12.","DOI":"10.1371\/journal.pone.0180935"},{"key":"ref_11","doi-asserted-by":"crossref","first-page":"779","DOI":"10.1111\/imj.13099","article-title":"Young Onset Dementia","volume":"46","author":"Draper","year":"2016","journal-title":"Intern. Med. J."},{"key":"ref_12","doi-asserted-by":"crossref","first-page":"1091","DOI":"10.1002\/gps.2439","article-title":"Impact of Early Onset Dementia on Caregivers: A Review","volume":"25","author":"Bakker","year":"2010","journal-title":"Int. J. Geriatr. Psychiatry"},{"key":"ref_13","unstructured":"(2016). Posterior Cortical Atrophy Support Group Evaluation, AP Psychology and Consulting Service."},{"key":"ref_14","doi-asserted-by":"crossref","first-page":"507","DOI":"10.1080\/09602011.2019.1707099","article-title":"Positive Behaviour Support in Frontotemporal Dementia: A Pilot Study","volume":"31","author":"Mioshi","year":"2021","journal-title":"Neuropsychol. Rehabil."},{"key":"ref_15","doi-asserted-by":"crossref","first-page":"299","DOI":"10.1080\/09638288.2017.1387614","article-title":"The Tailored Activity Program (TAP) to Address Behavioral Disturbances in Frontotemporal Dementia: A Feasibility and Pilot Study","volume":"41","author":"Clemson","year":"2019","journal-title":"Disabil. Rehabil."},{"key":"ref_16","doi-asserted-by":"crossref","first-page":"48","DOI":"10.1159\/000506125","article-title":"Pronounced Impairment of Activities of Daily Living in Posterior Cortical Atrophy","volume":"49","author":"Ahmed","year":"2020","journal-title":"Dement. Geriatr. Cogn. Disord."},{"key":"ref_17","doi-asserted-by":"crossref","first-page":"381","DOI":"10.3233\/JAD-141071","article-title":"Pronounced Impairment of Everyday Skills and Self-Care in Posterior Cortical Atrophy","volume":"43","author":"Shakespeare","year":"2015","journal-title":"J. Alzheimer\u2019s Dis."},{"key":"ref_18","doi-asserted-by":"crossref","first-page":"e018663","DOI":"10.1136\/bmjopen-2017-018663","article-title":"\u2018Because My Brain Isn\u2019t as Active as It Should Be, My Eyes Don\u2019t Always See\u2019: A Qualitative Exploration of the Stress Process for Those Living with Posterior Cortical Atrophy","volume":"8","author":"Harding","year":"2018","journal-title":"BMJ Open"},{"key":"ref_19","unstructured":"(2024, February 20). Posterior Cortical Atrophy (PCA)\u2014Rare Dementia Support. Available online: https:\/\/www.raredementiasupport.org\/posterior-cortical-atrophy\/."},{"key":"ref_20","doi-asserted-by":"crossref","first-page":"1441","DOI":"10.1017\/S1041610216000132","article-title":"Psychosocial Interventions for People with Young Onset Dementia and Their Carers: A Systematic Review","volume":"28","author":"Richardson","year":"2016","journal-title":"Int. Psychogeriatr."},{"key":"ref_21","doi-asserted-by":"crossref","unstructured":"Kang, M., Farrand, S., Walterfang, M., Velakoulis, D., Loi, S.M., and Evans, A. (2022). Carer Burden and Psychological Distress in Young-Onset Dementia: An Australian Perspective. Int. J. Geriatr. Psychiatry, 37.","DOI":"10.1002\/gps.5765"},{"key":"ref_22","doi-asserted-by":"crossref","first-page":"248","DOI":"10.1016\/j.jamda.2012.09.011","article-title":"Predictors of the Time to Institutionalization in Young- versus Late-Onset Dementia: Results from the Needs in Young Onset Dementia (NeedYD) Study","volume":"14","author":"Bakker","year":"2013","journal-title":"J. Am. Med. Dir. Assoc."},{"key":"ref_23","doi-asserted-by":"crossref","first-page":"195","DOI":"10.12998\/wjcc.v4.i8.195","article-title":"Non-Pharmacological Intervention for Posterior Cortical Atrophy","volume":"4","author":"Alves","year":"2016","journal-title":"World J. Clin. Cases"},{"key":"ref_24","doi-asserted-by":"crossref","first-page":"335","DOI":"10.1016\/0005-7967(94)00075-U","article-title":"The Structure of Negative Emotional States: Comparison of the Depression Anxiety Stress Scales (DASS) with the Beck Depression and Anxiety Inventories","volume":"33","author":"Lovibond","year":"1995","journal-title":"Behav. Res. Ther."},{"key":"ref_25","doi-asserted-by":"crossref","first-page":"649","DOI":"10.1093\/geront\/20.6.649","article-title":"Relatives of the Impaired Elderly: Correlates of Feelings of Burden","volume":"20","author":"Zarit","year":"1980","journal-title":"Gerontologist"},{"key":"ref_26","doi-asserted-by":"crossref","unstructured":"Devlin, N., Parkin, D., and Janssen, B. (2020). Methods for Analysing and Reporting EQ-5D Data, Springer International Publishing.","DOI":"10.1007\/978-3-030-47622-9"},{"key":"ref_27","doi-asserted-by":"crossref","first-page":"136","DOI":"10.1177\/0891988714554713","article-title":"The Neuropsychiatric Profile of Posterior Cortical Atrophy","volume":"28","author":"Isella","year":"2015","journal-title":"J. Geriatr. Psychiatry Neurol."},{"key":"ref_28","doi-asserted-by":"crossref","first-page":"277","DOI":"10.1080\/13607863.2020.1857697","article-title":"\u2018They Simply Do Not Understand\u2019: A Focus Group Study Exploring the Lived Experiences of Family Caregivers of People with Frontotemporal Dementia","volume":"26","author":"Bruinsma","year":"2022","journal-title":"Aging Ment. Health"},{"key":"ref_29","doi-asserted-by":"crossref","first-page":"1232","DOI":"10.1080\/13607863.2020.1753014","article-title":"The Prevalence and Predictors of Loneliness in Caregivers of People with Dementia: Findings from the IDEAL Programme","volume":"25","author":"Victor","year":"2021","journal-title":"Aging Ment. Health"},{"key":"ref_30","doi-asserted-by":"crossref","first-page":"572","DOI":"10.1177\/1357633X19873793","article-title":"Implementing a Peer-Support Programme by Group Videoconferencing for Isolated Carers of People with Dementia","volume":"25","author":"Banbury","year":"2019","journal-title":"J. Telemed. Telecare"},{"key":"ref_31","doi-asserted-by":"crossref","unstructured":"Gerritzen, E.V., Orrell, M., and McDermott, O. (2024). Optimising Online Peer Support for People with Young Onset Dementia. Int. J. Environ. Res. Public Health, 21.","DOI":"10.3390\/ijerph21010060"},{"key":"ref_32","doi-asserted-by":"crossref","first-page":"218","DOI":"10.1177\/14713012221140468","article-title":"Peer Support through Video Meetings: Experiences of People with Young Onset Dementia","volume":"22","author":"Gerritzen","year":"2023","journal-title":"Dement. Lond. Engl."},{"key":"ref_33","doi-asserted-by":"crossref","first-page":"2386","DOI":"10.1080\/13607863.2023.2205833","article-title":"Online Peer Support: Views and Experiences of People with Young Onset Dementia (YOD)","volume":"27","author":"Gerritzen","year":"2023","journal-title":"Aging Ment. Health"},{"key":"ref_34","doi-asserted-by":"crossref","unstructured":"Loi, S.M., Flynn, L., Cadwallader, C., Stretton-Smith, P., Bryant, C., and Baker, F.A. (2022). Music and Psychology & Social Connections Program: Protocol for a Novel Intervention for Dyads Affected by Younger-Onset Dementia. Brain Sci., 12.","DOI":"10.3390\/brainsci12040503"}],"container-title":["International Journal of Environmental Research and Public Health"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/1660-4601\/21\/4\/513\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T14:32:12Z","timestamp":1760106732000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/1660-4601\/21\/4\/513"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,4,22]]},"references-count":34,"journal-issue":{"issue":"4","published-online":{"date-parts":[[2024,4]]}},"alternative-id":["ijerph21040513"],"URL":"https:\/\/doi.org\/10.3390\/ijerph21040513","relation":{},"ISSN":["1660-4601"],"issn-type":[{"type":"electronic","value":"1660-4601"}],"subject":[],"published":{"date-parts":[[2024,4,22]]}}}