Transitions: Living With Young-Onset Alzheimer's Disease: A Qualitative Interview Study

IF 3 3区医学 Q2 HEALTH CARE SCIENCES & SERVICES Health Expectations Pub Date : 2024-09-16 DOI:10.1111/hex.70034

Malin Aspö, Leonie N. C. Visser, Miia Kivipelto, Anne-Marie Boström, Berit Seiger Cronfalk

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Abstract

Introduction

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.

Method

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.

Results

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.

Conclusion

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.

Patient or Public Contribution

The findings are based on interviews with 13 persons with YOD and provide insight into experiences of living with YOD.

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过渡：与年轻的阿尔茨海默氏症患者共同生活：定性访谈研究

导言青年痴呆症（YOD）患者面临着特殊的挑战。由于这种疾病的神经退行性，被诊断患有青年痴呆症的人面临着许多变化，这些变化会带来不同的后果，例如，他们的人生观会发生变化。这些变化可能会引起过渡过程和应对策略，希望能激发他们的幸福感和接受能力。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因阿尔茨海默病（AD）而患有 YOD 的人的生活经历，并找出确诊后第一年内的过渡迹象。方法在这项定性访谈研究中，我们探讨了患有阿尔茨海默病的年轻人的经历。13 名 65 岁以下的参与者（9 名女性和 4 名男性；平均年龄：57 岁）在被诊断出患有老年痴呆症一年后接受了访谈。我们对访谈内容进行了逐字记录，并采用演绎法进行了定性内容分析。为了加深对数据的理解，采用了 Meleis 的过渡理论作为理论框架。结果确定了两个类别：生活已经改变 "和 "驾驭已经改变的生活状况"。确诊一年后，参与者描述了他们如何经历生活状况的改变、症状的改变、有意义活动的丧失以及社会孤立风险的增加。此外，生活在对未来的不确定性中使他们感到与外界脱节。提高认识被视为应对 YOD 和在过渡过程中取得进展的一个重要方面。参与者还强调了他人支持的重要性。结论研究结果表明，防止社会隔离对于促进健康过渡非常重要。因此，专业人员需要识别过渡的迹象，并意识到应对 YOD 的复杂性，从而帮助防止对变化产生不必要的反应，促进健康的过渡过程。对患者或公众的贡献研究结果基于对 13 名 YOD 患者的访谈，深入探讨了 YOD 患者的生活经历。

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来源期刊

Health Expectations 医学-公共卫生、环境卫生与职业卫生

CiteScore

5.20

自引率

9.40%

发文量

251

审稿时长

>12 weeks

期刊介绍： Health Expectations promotes critical thinking and informed debate about all aspects of patient and public involvement and engagement (PPIE) in health and social care, health policy and health services research including: • Person-centred care and quality improvement • Patients'' participation in decisions about disease prevention and management • Public perceptions of health services • Citizen involvement in health care policy making and priority-setting • Methods for monitoring and evaluating participation • Empowerment and consumerism • Patients'' role in safety and quality • Patient and public role in health services research • Co-production (researchers working with patients and the public) of research, health care and policy Health Expectations is a quarterly, peer-reviewed journal publishing original research, review articles and critical commentaries. It includes papers which clarify concepts, develop theories, and critically analyse and evaluate specific policies and practices. The Journal provides an inter-disciplinary and international forum in which researchers (including PPIE researchers) from a range of backgrounds and expertise can present their work to other researchers, policy-makers, health care professionals, managers, patients and consumer advocates.