Professionals' Views on Social Care Planning and Provision for People With Young-Onset Dementia and Their Families in England: Findings From the DYNAMIC Study

IF 2.8 3区医学 Q2 GERIATRICS & GERONTOLOGY

International Journal of Geriatric Psychiatry Pub Date : 2025-09-20 DOI:10.1002/gps.70155

Catherine Quinn, Helen Young, Vasileios Stamou, Kate Gridley, Clare Mason, Jan Oyebode

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引用次数: 0

Abstract

Objectives

Access to appropriate social care post-diagnosis is crucial for people with young onset dementia (YOD) and their families. Yet care is hugely variable, frequently lacking, and poorly coordinated. We aimed to establish levels of awareness, knowledge, and practice among professionals regarding social care provision for people with YOD.

Methods

A short survey (24 items) was developed based on previous research and through consultation with experts by experience and the project steering group. The aim was to establish awareness, knowledge, and practice among professionals regarding social care needs, care planning, and provision for people YOD. The survey was available online.

Results

There were 139 responses from health and social care professionals. A wide range of situations triggered referrals to social care, illustrating the holistic impact of YOD. However, most referrals were triggered by crises rather than a proactive approach and were in response to carers' needs rather than those of the person with YOD. Referrals for advice and guidance around financial impacts were common. Most respondents reported there was no agreed care pathway and no YOD-specific guidelines in their service. Areas of good practice in social care provision included: person-centred and reablement based approaches; multi-disciplinary and multi-agency working; support from peers and the third sector; seamless care pathways and dedicated YOD services; support for carers; and personal budgets.

Conclusions

Staff need accurate knowledge and awareness of specific YOD-related issues to provide effective social care for those with YOD and their families. The current system tends to be reactive at point of crisis, whereas proactive planning and provision could pre-empt crises and provide more effective support. YOD-specific care pathways and guidance are needed to improve social care for this population.

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专业人士对英国早发性痴呆患者及其家庭的社会关怀规划和提供的看法：来自DYNAMIC研究的结果。

目的：诊断后获得适当的社会护理对年轻发性痴呆（YOD）患者及其家庭至关重要。然而，护理的变化很大，经常缺乏，而且协调不力。我们的目标是在专业人士中建立对YOD患者社会护理的认识、知识和实践水平。方法：在前人研究的基础上，通过与经验专家和项目指导小组的协商，制定了一个简短的问卷调查（24项）。目的是在专业人员中建立关于社会护理需求、护理计划和为老年患者提供服务的意识、知识和实践。该调查可在网上获得。结果：共收到139份来自卫生和社会保健专业人员的回复。各种各样的情况引发了社会关怀的转介，说明了YOD的整体影响。然而，大多数转介是由危机触发的，而不是主动的方法，是对护理人员的需求的回应，而不是对YOD患者的需求的回应。关于财务影响的建议和指导的转介是常见的。大多数受访者报告说，在他们的服务中没有商定的护理途径，也没有针对yod的指导方针。提供社会护理的良好做法领域包括：以人为本和以治疗为基础的方法；多学科、多机构工作；业界及第三界别的支持；无缝的护理途径和专门的YOD服务；对护理人员的支持；还有个人预算。结论：工作人员需要对YOD相关的具体问题有准确的认识和意识，才能为YOD患者及其家属提供有效的社会关怀。目前的制度往往是在危机发生时作出反应，而积极的规划和提供可以预防危机并提供更有效的支助。需要针对青少年的护理途径和指导来改善对这一人群的社会护理。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

International Journal of Geriatric Psychiatry 医学-精神病学

CiteScore

6.10

自引率

2.50%

发文量

168

审稿时长

4-8 weeks

期刊介绍： The rapidly increasing world population of aged people has led to a growing need to focus attention on the problems of mental disorder in late life. The aim of the Journal is to communicate the results of original research in the causes, treatment and care of all forms of mental disorder which affect the elderly. The Journal is of interest to psychiatrists, psychologists, social scientists, nurses and others engaged in therapeutic professions, together with general neurobiological researchers. The Journal provides an international perspective on the important issue of geriatric psychiatry, and contributions are published from countries throughout the world. Topics covered include epidemiology of mental disorders in old age, clinical aetiological research, post-mortem pathological and neurochemical studies, treatment trials and evaluation of geriatric psychiatry services.