Dooley Jemima, Webb Joe, James Roy, Davis Harry, Read Sandy
Centre for Academic Primary Care, Bristol Medical School, University of Bristol, UK.
Norah Fry Centre for Disability Studies, School for Policy Studies, University of Bristol, UK.
Dementia (London). 2025 Jan 28:14713012241312845. doi: 10.1177/14713012241312845.
It takes time to adjust to a diagnosis of dementia. Post-diagnosis support has an important part to play in navigating this transition. However, it is often scarce and variable according to location. This co-produced study explored experiences of support across the UK. The project was co-designed and implemented with people living with dementia. Five focus groups were attended by 18 people with dementia and 10 spouses from across the UK. The aim was to find out what support people currently received, what aspects they valued, and what they would like to see done differently. Most participants reported feeling abandoned after diagnosis, with little continuity of care. Many felt the burden of navigating post-diagnosis life was on them and their loved ones, with a perceived scarcity of support, and difficulties navigating the benefits system. Peer/voluntary support was seen as vital in promoting confidence, a source of relational support, and finding out crucial information relating to benefits, healthcare, and management of symptoms. Participants felt dementia was stigmatised, receiving less support than other medical conditions. Participants identified aspects of post-diagnosis support they valued, and collaborated on ideas for support structures and services they would like to see introduced. In concluding this study, we argue that post-diagnosis support services could be improved with the input of people living with dementia. This could reduce the burden on those receiving the diagnosis to find advice and support outside of health and social care systems. For future research, the financial implications of a dementia diagnosis have rarely been discussed and warrants further exploration.
适应痴呆症的诊断需要时间。诊断后的支持在应对这一转变过程中起着重要作用。然而，这种支持往往稀缺，且因地点而异。这项共同开展的研究探讨了英国各地的支持体验。该项目是与痴呆症患者共同设计和实施的。来自英国各地的18名痴呆症患者和10名配偶参加了五个焦点小组。目的是了解人们目前得到了哪些支持、他们重视哪些方面，以及他们希望看到哪些方面有所不同。大多数参与者表示在诊断后感到被抛弃，护理缺乏连续性。许多人觉得应对诊断后的生活的重担落在了他们自己和他们所爱的人身上，他们感觉到支持匮乏，而且在福利系统中遇到困难。同伴/志愿支持在增强信心、提供关系支持以及获取与福利、医疗保健和症状管理相关的关键信息方面被视为至关重要。参与者感到痴呆症受到了污名化，得到的支持比其他疾病少。参与者确定了他们重视的诊断后支持的方面，并就他们希望引入的支持结构和服务的想法进行了合作。在总结这项研究时，我们认为，有痴呆症患者的参与，诊断后的支持服务可以得到改善。这可以减轻那些被诊断者在健康和社会护理系统之外寻找建议和支持的负担。对于未来的研究而言，痴呆症诊断的经济影响很少被讨论，值得进一步探索。
