School of Health Sciences, University of Southampton, Southampton SO16 6YD, UK.
Age Ageing. 2021 May 5;50(3):944-954. doi: 10.1093/ageing/afaa262.
many people living at home with dementia (PLWD) also have poorly managed toilet-use or incontinence problems with damaging consequences for both people with dementia, unpaid carers and healthcare professionals (HCPs). Currently, there are no theoretically or empirically based interventions to help. The underlying causes and subsequent consequences of these problems need to be fully understood in order to support the development of interventions that have the potential to decrease the impact of these problems on people's lives.
to establish the range of causes, consequences and potential solutions of toilet-use and incontinence problems for PLWD and their carers.
a qualitative design was used. Semi-structured interviews were undertaken with PLWD, carers and HCPs (continence or dementia nurses). PLWD and carers were recruited via www.joindementiaresearch.nihr.ac.uk and via dementia/carer groups. Nurses were recruited via their employers. Interviews were digitally recorded and transcribed verbatim. Framework analysis was used to interpret the data to address the goal of the research.
in total, 45 people (26 unpaid carers, 2 people with dementia, 9 continence and 8 dementia HCPs) took part. The causes of toilet-use and incontinence problems were reported to be multi-faceted and complex including those related to dementia (e.g. lack of insight into toileting needs or how to use the toilet), those which are physical (e.g. existing bladder or bowel issues or poor mobility), psychosocial (e.g. inability to ask for help for incontinence) or societal (e.g. fear of stigma), or related to care systems (e.g. lack of expert knowledge) or products (e.g. poor fit or confusing for users). Consequences included harms to physical and mental health, social isolation, increased carer workload and care system resource implications.
this study provides the first detailed characterisation of the causes and consequences of and potential solutions for incontinence problems for PLWD at home and their carers. Multifaceted and complex problems were identified, layering dementia, physical, psychosocial, societal and care system factors and highlighting contextual variation. This new knowledge provides the essential basis for the (now underway) development of urgently needed practical and implementable interventions for this underserved population.
许多居家患有痴呆症的人（PLWD）也存在如厕管理不善或失禁问题，这对痴呆症患者、无薪照顾者和医疗保健专业人员（HCP）都有破坏性影响。目前，尚无基于理论或经验的干预措施来帮助他们。为了支持开发有可能减轻这些问题对人们生活影响的干预措施，需要充分了解这些问题的根本原因和后续后果。
确定 PLWD 及其照顾者的如厕和失禁问题的原因、后果和潜在解决方案的范围。
采用定性设计。通过 www.joindementiaresearch.nihr.ac.uk 和痴呆症/照顾者团体招募 PLWD 和照顾者，通过雇主招募护士。对 PLWD 和照顾者进行半结构化访谈，对护士进行访谈。采访内容以数字形式记录并逐字转录。使用框架分析来解释数据，以实现研究目标。
共有 45 人（26 名无薪照顾者、2 名痴呆症患者、9 名尿失禁和 8 名痴呆症 HCP）参加了研究。如厕和失禁问题的原因被报告为多方面且复杂的，包括与痴呆症相关的原因（例如，缺乏对如厕需求或如何使用厕所的洞察力）、与身体相关的原因（例如，现有的膀胱或肠道问题或行动不便）、心理社会方面的原因（例如，无法因失禁而寻求帮助）、社会方面的原因（例如，害怕污名化）、与护理系统相关的原因（例如，缺乏专业知识）或产品相关的原因（例如，不合适或用户感到困惑）。后果包括对身心健康的伤害、社会孤立、照顾者工作量增加以及护理系统资源的影响。
本研究首次详细描述了居家患有痴呆症的人及其照顾者的失禁问题的原因、后果和潜在解决方案。确定了多方面且复杂的问题，这些问题涉及痴呆症、身体、心理社会、社会和护理系统因素，并突出了背景差异。这些新知识为（现已进行中）为这一未得到满足的人群开发急需的实用且可实施的干预措施提供了必要的基础。
