Pavković Slađana, Goldberg Lynette R, Farrow Maree, Alty Jane, Abela Melissa, Low Lee-Fay
Wicking Dementia Center, University of Tasmania Faculty of Health, Hobart, TAS, Australia.
Wicking Dementia Research and Education Centre, University of Tasmania College of Health and Medicine, Hobart, TAS, Australia.
Dementia (London). 2025 Apr 14;24(6):14713012251333880. doi: 10.1177/14713012251333880.
Timely post-diagnostic support is necessary to help people with dementia and those who provide care adapt to the diagnosis and optimise independence and quality of life. However, evidence from people with dementia and carers regarding the support they need is scarce. To explore the perspectives of people with dementia and their carers regarding the support they had been offered, barriers and facilitators to accessing such support, and support they viewed as desirable or ideal. This was a cross-sectional qualitative exploratory study. Data were collected from individual interviews with 13 people recently diagnosed with dementia at nine Australian memory clinics and 17 carers. Interviews were conducted between September 2021 and October 2022. Reflexive thematic analysis was used to examine participants' comments under four topics: Current Care and Support, Barriers, Facilitators, and Desirable Care and Support. Current Care and Support: Four themes emerged: Communication with empathy; Written information valuable but could be overwhelming; Referrals provided but not necessarily followed; A focus on prescribed anti-dementia medications. Under the topic of Barriers, three themes were derived: Dementia stigma restricts life after diagnosis; Disapointment in Health and Aged Care systems; Limited insight into and/or difficulty expressing own needs. Under the topic of Facilitators, comments focused on Support from family and friends is crucial. Under the topic of Desirable Care and Support, three themes emerged: A single person guiding ongoing post-diagnostic support; Support with driving concerns; Engaging and tailored information. Perspectives of people recently diagnosed with dementia and their carers identified the need to ensure that post-diagnostic support addressed their individual needs, was clear, ongoing and involved the support of family and friends to reduce barriers and facilitate access. The importance of guidance by a trusted professional support person was considered key in facilitating more effective post-diagnostic dementia care.
及时的诊断后支持对于帮助痴呆症患者及护理人员适应诊断结果、优化独立性和生活质量至关重要。然而,痴呆症患者及其护理人员关于他们所需支持的证据却很匮乏。本研究旨在探讨痴呆症患者及其护理人员对于所获支持的看法、获取此类支持的障碍和促进因素,以及他们认为理想或期望的支持。这是一项横断面定性探索性研究。数据收集自对澳大利亚九家记忆诊所的13名近期被诊断为痴呆症的患者以及17名护理人员的个人访谈。访谈于2021年9月至2022年10月期间进行。采用反思性主题分析法,在四个主题下审视参与者的评论:当前护理与支持、障碍、促进因素以及理想的护理与支持。当前护理与支持:出现了四个主题:共情沟通;书面信息有价值但可能过多;提供了转诊但不一定被遵循;专注于处方抗痴呆药物。在障碍主题下,得出了三个主题:痴呆症污名限制诊断后的生活;对卫生和老年护理系统感到失望;对自身需求的洞察有限和/或难以表达自身需求。在促进因素主题下,评论集中在家人和朋友的支持至关重要。在理想的护理与支持主题下,出现了三个主题:有一人指导持续的诊断后支持;解决驾驶方面的担忧;提供引人入胜且量身定制的信息。近期被诊断为痴呆症的患者及其护理人员的观点表明,需要确保诊断后支持满足他们的个人需求,清晰、持续且有家人和朋友的支持,以减少障碍并便于获取。由值得信赖的专业支持人员提供指导被认为是促进更有效的诊断后痴呆症护理的关键。