Garcia-Ptacek Sara, Dahlrup Beth, Edlund Ann-Katrin, Wijk Helle, Eriksdotter Maria
Department of Neurobiology, Care Sciences and Society, Center for Alzheimer Research, Division of Clinical Geriatrics, Karolinska Institutet, Huddinge, Sweden.
Department of Internal Medicine, Section for Neurology, Södersjukhuset, Stockholm, Sweden.
Scand J Caring Sci. 2019 Jun;33(2):255-265. doi: 10.1111/scs.12627. Epub 2018 Nov 29.
Dementia presents barriers to the collaboration between individuals and the healthcare system. Caregivers perform multiple functions helping patients with basic and instrumental activities but also communicating and mediating the dyads' needs within the broader social group. Interventions focusing on caregivers show that caregiver burden can be reduced, improving patient outcomes in a cost-effective way, but the generalisation of these findings is limited by several factors such as low participation rates of caregivers in studies. There is a global push to increase patient participation in health care, but this can be difficult for patients with dementia. Caregiver participation has arisen as a substitute, but there is a lack of standardised definitions, goals and outcome measurement tools for this participation.
In 2015, the Swedish Association of Local Authorities and Regions commissioned a study on possibilities of increasing caregiver participation within the Swedish Dementia Registry (SveDem). This discussion paper updates and adapts that report, aiming to broadly summarise the caregiving phenomenon in order to provide a backdrop for clinicians seeking to understand the legal, ethical and practical considerations of caregiver participation in dementia. Relevant literature on caregiver participation is presented, and its definition, extent and practical implementation are discussed.
The Swedish legal framework compels care providers to facilitate patient and caregiver participation in dementia and provides support to caregivers through the local level of government, but further work is needed to clarify and define the extension and form that this participation must take in clinical practice. Advanced directives are one step in extending patient participation to the period of advanced dementia.
Little research exists on caregiver participation. There is a need to develop a framework for caregiver and patient participation to determine the extent, type and form that such participation should take in health care, research and quality initiatives pertaining to persons with dementia.
痴呆症给个人与医疗保健系统之间的协作带来了障碍。照顾者承担着多种功能，不仅要帮助患者进行基本和工具性活动，还要在更广泛的社会群体中沟通并协调双方的需求。针对照顾者的干预措施表明，照顾者负担可以减轻，从而以具有成本效益的方式改善患者的治疗效果，但这些研究结果的推广受到多种因素的限制，例如照顾者参与研究的比例较低。全球都在推动患者更多地参与医疗保健，但这对痴呆症患者来说可能很困难。照顾者参与已成为一种替代方式，但对于这种参与缺乏标准化的定义、目标和结果测量工具。
2015年，瑞典地方当局和地区协会委托开展了一项关于在瑞典痴呆症登记处（SveDem）增加照顾者参与可能性的研究。本讨论文件对该报告进行了更新和调整，旨在广泛总结照顾现象，以便为寻求理解照顾者参与痴呆症护理的法律、伦理和实际考量的临床医生提供背景信息。文中呈现了关于照顾者参与的相关文献，并讨论了其定义、范围和实际实施情况。
瑞典的法律框架要求医疗服务提供者促进患者和照顾者参与痴呆症护理，并通过地方政府层面为照顾者提供支持，但仍需进一步开展工作，以明确和界定这种参与在临床实践中必须采取的范围和形式。预先指示是将患者参与扩展到重度痴呆阶段的一个步骤。
关于照顾者参与的研究很少。有必要制定一个照顾者和患者参与的框架，以确定这种参与在与痴呆症患者相关的医疗保健、研究和质量倡议中应采取的范围、类型和形式。
