{"title":"Caring for people with dementia: Mapping the experience and journey from diagnosis.","authors":"Ruth Brookman, Ruby Lipson-Smith, Olivia Maurice, Nina Mcllwain, Lukas Hofstaetter, Michelle DiGiacomo, Danielle Ní Chróinín, Madeleine J Cannings, Celia B Harris","doi":"10.1093/geront/gnaf053","DOIUrl":null,"url":null,"abstract":"<p><strong>Background and objectives: </strong>Family care partners of people with dementia are not typically the focus of healthcare and aged care providers. They experience unmet needs, missed opportunities for support, and barriers to wellbeing that impact the dyad. This longitudinal study aimed to understand the experience of care partners, mapping their journey as they navigated healthcare and aged care systems as well as other supports.</p><p><strong>Research design and methods: </strong>Fifteen family care partners participated in this longitudinal, qualitative study. For 6 months they recorded details (provider, date, purpose, outcome, and satisfaction rating) of interactions with health and aged care services. Monthly semi-structured interviews reviewed experiences, prompted by logbooks. Thematic analysis identified factors that influenced care partners' experiences and mapped the typical journey.</p><p><strong>Results: </strong>Data indicated that participants' needs fluctuated with three key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care. Thematic analysis identified three corresponding themes of carer need and risk: 'psychological support/ distress', 'social connection/social isolation', and 'knowledge/disempowerment'.</p><p><strong>Discussion and implications: </strong>Findings suggest a critical role of time in dementia care journeys, impacting the support that care partners need from healthcare and aged care systems. The potentially foreseeable, time-based nature of unmet needs suggests that education and training can highlight needs for knowledge, support, and connection, and the importance of prioritising them differentially according to the stages of the carer journey.</p>","PeriodicalId":51347,"journal":{"name":"Gerontologist","volume":" ","pages":""},"PeriodicalIF":4.6000,"publicationDate":"2025-02-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Gerontologist","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/geront/gnaf053","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"GERONTOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
Background and objectives: Family care partners of people with dementia are not typically the focus of healthcare and aged care providers. They experience unmet needs, missed opportunities for support, and barriers to wellbeing that impact the dyad. This longitudinal study aimed to understand the experience of care partners, mapping their journey as they navigated healthcare and aged care systems as well as other supports.
Research design and methods: Fifteen family care partners participated in this longitudinal, qualitative study. For 6 months they recorded details (provider, date, purpose, outcome, and satisfaction rating) of interactions with health and aged care services. Monthly semi-structured interviews reviewed experiences, prompted by logbooks. Thematic analysis identified factors that influenced care partners' experiences and mapped the typical journey.
Results: Data indicated that participants' needs fluctuated with three key time points of heightened need: dementia diagnosis, in-home care, and transition into residential care. Thematic analysis identified three corresponding themes of carer need and risk: 'psychological support/ distress', 'social connection/social isolation', and 'knowledge/disempowerment'.
Discussion and implications: Findings suggest a critical role of time in dementia care journeys, impacting the support that care partners need from healthcare and aged care systems. The potentially foreseeable, time-based nature of unmet needs suggests that education and training can highlight needs for knowledge, support, and connection, and the importance of prioritising them differentially according to the stages of the carer journey.
期刊介绍：
The Gerontologist, published since 1961, is a bimonthly journal of The Gerontological Society of America that provides a multidisciplinary perspective on human aging by publishing research and analysis on applied social issues. It informs the broad community of disciplines and professions involved in understanding the aging process and providing care to older people. Articles should include a conceptual framework and testable hypotheses. Implications for policy or practice should be highlighted. The Gerontologist publishes quantitative and qualitative research and encourages manuscript submissions of various types including: research articles, intervention research, review articles, measurement articles, forums, and brief reports. Book and media reviews, International Spotlights, and award-winning lectures are commissioned by the editors.
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