Ashley Laura, Kelley Rachael, Griffiths Alys, Cowdell Fiona, Henry Ann, Inman Hayley, Hennell June, Ogden Margaret, Walsh Maria, Jones Liz, Mason Ellen, Collinson Michelle, Farrin Amanda, Surr Claire
Leeds School of Social Sciences, Leeds Beckett University, Leeds, UK.
Centre for Dementia Research, School of Health and Community Studies, Leeds Beckett University, Leeds, UK.
Age Ageing. 2021 Jan 8;50(1):233-241. doi: 10.1093/ageing/afaa210.
Providing cancer care and treatment for ageing populations with complicating comorbidities like dementia is a growing global challenge. This study aimed to examine the hospital-based cancer care and treatment challenges and support needs of people with dementia, and identify potential ways to address these.
A two-site ethnographic study in England involving semi-structured interviews, observations and accompanying conversations, and medical record review. Participants (N = 58) were people with dementia and comorbid cancer (n = 17), informal caregivers (n = 22) and hospital staff (n = 19). Ethnographically informed thematic analysis was conducted.
There was an accumulated complexity of living with both illnesses simultaneously. People with dementia and families could feel confused and uninformed due to difficulties understanding, retaining and using cancer information, which impacted their informed treatment decision-making. Dementia increased the complexity and burden of travelling to and navigating unfamiliar hospital environments, frequent lengthy periods of waiting in hospital, and self-managing symptoms and side-effects at home. Oncology staff were often working without the full picture, due to variable documenting of dementia in medical records, dementia training was limited, and time and resource pressures impeded the highly individualised, flexible cancer care required by people with dementia. Supportive family carers were crucial in enabling people with dementia to access, navigate and undergo cancer treatment and care.
Dementia complicates cancer care in a range of ways accumulating across the cancer pathway. Our findings suggest there are several strategies and interventions, which we list here, with potential to improve cancer care and treatment for people with dementia and their families.
为患有痴呆症等复杂合并症的老年人群提供癌症护理和治疗是一项日益严峻的全球挑战。本研究旨在探讨以医院为基础的痴呆症患者的癌症护理和治疗挑战以及支持需求，并确定应对这些挑战的潜在方法。
在英国进行的一项双地点人种学研究，包括半结构化访谈、观察及伴随的对话，以及病历审查。参与者（N = 58）包括患有痴呆症和合并癌症的患者（n = 17）、非正式护理人员（n = 22）和医院工作人员（n = 19）。进行了基于人种学的主题分析。
同时患有这两种疾病会带来累积的复杂性。患有痴呆症的患者及其家人可能会因理解、保留和使用癌症信息困难而感到困惑和信息不足，这影响了他们做出明智的治疗决策。痴呆症增加了前往陌生医院环境及在其中导航的复杂性和负担、在医院频繁长时间等待，以及在家中自我管理症状和副作用的难度。由于病历中对痴呆症的记录不一致、痴呆症培训有限，以及时间和资源压力阻碍了为痴呆症患者提供高度个性化、灵活的癌症护理，肿瘤学工作人员往往无法全面了解情况。支持性的家庭护理人员对于使痴呆症患者能够获得、接受并完成癌症治疗和护理至关重要。
痴呆症在癌症治疗过程的各个方面以多种方式使癌症护理变得复杂。我们的研究结果表明，有几种策略和干预措施（我们在此列出）有可能改善痴呆症患者及其家人的癌症护理和治疗。
