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痴呆症患者的康复权:障碍与解决方案的共同设计方法。

The Right to Rehabilitation for People With Dementia: A Codesign Approach to Barriers and Solutions.

机构信息

Rehabilitation Ageing and Independent Living (RAIL) Research Centre, Monash University, Melbourne, Victoria, Australia.

National Centre for Healthy Ageing, Melbourne, Victoria, Australia.

出版信息

Health Expect. 2024 Oct;27(5):e70036. doi: 10.1111/hex.70036.


DOI:10.1111/hex.70036
PMID:39318228
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11422665/
Abstract

INTRODUCTION: People with dementia of all ages have a human right to equal access to quality health care. Despite evidence regarding its effectiveness, many people living with dementia are unable to access rehabilitation for promoting function and quality of life. Conducted in Australia, this study was designed to (1) explore barriers to access to dementia rehabilitation and (2) identify solutions that improve access to rehabilitation. METHODS: People living with dementia (n = 5) and care partners (n = 8) and health professionals (n = 13) were recruited nationally. Experience-based codesign across three virtual workshops was used to understand barriers and design solutions to improve access to rehabilitation treatments. Socio-ecological analyses, using the Levesque Access to Health care framework, were applied to findings regarding barriers and to aid selection of solutions. RESULTS: There was high attendance (92.3%) across the three workshops. Barriers were identified at a user level (including lack of knowledge, transport, cost and difficulty navigating the health, aged care and disability sectors) and health service level (including health professional low dementia knowledge and negative attitudes, inequitable funding models and non-existent or fragmented services). Solutions focused on widespread dementia education and training, including ensuring that people with dementia and their care partners know about rehabilitation therapies and that health professionals, aged care and disability co-ordinators know how to refer to and deliver rehabilitation interventions. Dementia care navigators, changes to Australia's public funding models and specific dementia rehabilitation programmes were also recommended. CONCLUSIONS: Barriers to accessing rehabilitation for people with dementia exist at multiple levels and will require a whole-community and systems approach to ensure change. PATIENT OR PUBLIC CONTRIBUTION: People with living experience (preferred term by those involved) were involved at two levels within this research. A Chief Investigator living with dementia was involved in the design of the study and writing of the manuscript. People with living experience, care partners and service providers were participants in the codesign process to identify barriers and design potential solutions.

摘要

简介:各个年龄段的痴呆症患者都享有平等获得优质医疗保健的人权。尽管有证据表明其有效性,但许多痴呆症患者无法获得促进功能和生活质量的康复治疗。本研究在澳大利亚进行,旨在:(1) 探讨获得痴呆症康复治疗的障碍;(2) 确定改善康复治疗途径的解决方案。

方法:在全国范围内招募了 5 名痴呆症患者(患者组)、8 名照顾者(照顾者组)和 13 名卫生专业人员(卫生专业人员组)。采用基于经验的跨三个虚拟研讨会的共同设计方法,了解障碍并设计解决方案以改善康复治疗途径。使用 Lévesque 卫生保健获取框架对获取障碍的调查结果进行社会生态分析,并帮助选择解决方案。

结果:三个研讨会的参与率均很高(92.3%)。在用户层面(包括知识缺乏、交通、费用以及难以在卫生、老年护理和残疾部门之间进行协调)和卫生服务层面(包括卫生专业人员对痴呆症的了解程度低、态度消极、资金分配不均衡、服务缺失或碎片化)发现了障碍。解决方案侧重于广泛开展痴呆症教育和培训,包括确保痴呆症患者及其照顾者了解康复疗法,以及确保卫生专业人员、老年护理和残疾协调员了解如何转介和提供康复干预措施。还建议设立痴呆症护理协调员、改变澳大利亚的公共资金模式以及制定具体的痴呆症康复方案。

结论:痴呆症患者获取康复治疗的障碍存在于多个层面,需要采取全社区和系统的方法来确保变革。

患者或公众贡献:在这项研究中,有生活经历的人(参与者更愿意使用这个术语)在两个层面上参与。一位患有痴呆症的首席研究员参与了研究的设计和手稿的撰写。有生活经历的人、照顾者和服务提供者是共同设计过程的参与者,以确定障碍并设计潜在的解决方案。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4f36/11422665/dcc4a0483fb9/HEX-27-e70036-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4f36/11422665/dbba14e7cf62/HEX-27-e70036-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4f36/11422665/dcc4a0483fb9/HEX-27-e70036-g001.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4f36/11422665/dbba14e7cf62/HEX-27-e70036-g002.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/4f36/11422665/dcc4a0483fb9/HEX-27-e70036-g001.jpg

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[3]
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J Med Internet Res. 2025-3-25

[4]
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本文引用的文献

[1]
Risk assessment for people living with dementia: a systematic review.

Int Psychogeriatr. 2024-4

[2]
Exercise for prevention of falls and fall-related injuries in neurodegenerative diseases and aging-related risk conditions: a meta-analysis.

Front Endocrinol (Lausanne). 2023

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Dementia care navigation: A systematic review on different service types and their prevalence.

Int J Geriatr Psychiatry. 2023-8

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Cochrane Database Syst Rev. 2023-6-29

[5]
Further development needed: models of post-diagnostic support for people with dementia.

Curr Opin Psychiatry. 2023-3-1

[6]
Co-design: Moving towards authenticity.

Australas J Ageing. 2022-12

[7]
Physical Therapist and Physical Therapist Student Knowledge, Confidence, Attitudes, and Beliefs About Providing Care for People With Dementia: A Mixed-Methods Systematic Review.

Phys Ther. 2022-5-5

[8]
We need a model of health and aged care services that adequately supports Australians with dementia.

Med J Aust. 2021-9-20

[9]
Rehabilitation for people with dementia: a multi-method study examining knowledge and attitudes.

BMC Geriatr. 2020-12-9

[10]
Tailored Exercise and Home Hazard Reduction Program for Fall Prevention in Older People With Cognitive Impairment: The i-FOCIS Randomized Controlled Trial.

J Gerontol A Biol Sci Med Sci. 2021-3-31

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