Department of Neurobiology, Care Sciences and Society, Division of Clinical Geriatrics, Karolinska Institutet, Stockholm, Sweden.
Theme Inflammation and Aging, Karolinska University Hospital, Stockholm, Sweden.
Health Expect. 2024 Oct;27(5):e70034. doi: 10.1111/hex.70034.
Persons with young-onset dementia (YOD) are confronted with specific challenges. Due to the neurodegenerative nature of the disease, people diagnosed with YOD face many changes with different consequences, for example, regarding their life perspective. These changes can give rise to transition processes and strategies for coping, hopefully stimulating well-being and acceptance. However, this might not always be the case, and support may be warranted. Our aim was to describe the experiences of those living with YOD due to Alzheimer's disease (AD) and identify signs of transitions during the first year after diagnosis.
In this qualitative interview study, we explore the experiences of younger persons living with AD. Thirteen participants under the age of 65 years (nine female and four male; mean age: 57) were included 1 year after being diagnosed with AD. The interviews were transcribed verbatim and analyzed using qualitative content analysis with a deductive approach. To gain a deeper understanding of the data, Meleis's transitions theory was used as a theoretical framework.
Two categories were identified: 'Life has changed' and 'Mastering a changed life situation'. One year after diagnosis, participants described how they experienced a changed life situation, changing symptoms, a loss of meaningful activities and an increased risk of social isolation. Furthermore, living with uncertainty about the future caused feelings of being disconnected. Awareness was described as an important aspect of coping with YOD and progressing in the transition process. Participants also highlighted the importance of support from others.
The results suggest that preventing social isolation is important in facilitating healthy transitions. Therefore, professionals need to identify signs of transitions and be aware of the complexity of coping with YOD, thereby helping to prevent unwanted responses to change and facilitate a healthy transition process.
The findings are based on interviews with 13 persons with YOD and provide insight into experiences of living with YOD.
患有早发性痴呆（YOD）的人面临着特殊的挑战。由于疾病的神经退行性本质，被诊断患有 YOD 的人会面临许多变化，这些变化可能会带来过渡过程和应对策略，希望能促进幸福感和接受度。然而，情况并非总是如此，可能需要提供支持。我们的目的是描述那些患有早发性阿尔茨海默病（AD）的人的经历，并确定诊断后第一年的过渡迹象。
在这项定性访谈研究中，我们探索了年轻的 AD 患者的经历。13 名参与者年龄在 65 岁以下（9 名女性，4 名男性；平均年龄：57 岁），在被诊断为 AD 后 1 年接受了采访。采访记录被逐字转录，并使用带有演绎方法的定性内容分析进行分析。为了更深入地理解数据，Meleis 的过渡理论被用作理论框架。
确定了两个类别：“生活发生了变化”和“掌握变化的生活状况”。诊断后 1 年，参与者描述了他们如何经历生活状况的变化，症状变化，有意义的活动丧失以及社交隔离风险增加。此外，对未来的不确定性导致了与社会脱节的感觉。应对 YOD 和过渡过程中取得进展的重要方面是意识到问题。参与者还强调了获得他人支持的重要性。
结果表明，预防社交隔离对于促进健康过渡很重要。因此，专业人员需要识别过渡迹象，并意识到应对 YOD 的复杂性，从而有助于防止对变化的不必要反应并促进健康的过渡过程。
这些发现基于对 13 名 YOD 患者的访谈，提供了对 YOD 患者生活经历的深入了解。
