Hicks Amelia J, Brewer Julie, Ahmad Nina, Cornelius Talea, Parker Robert A, Dams-O'Connor Kristen, Dickerson Bradford, Ritchie Christine, Vranceanu Ana-Maria, Bannon Sarah M
medRxiv. 2024 Dec 5:2024.12.04.24316485. doi: 10.1101/2024.12.04.24316485.
Alzheimer's disease and related dementias (ADRDs) are progressive conditions that substantially impact individuals and families. Timely diagnosis and early support are critical for long-term adjustment. However, current dementia care models do not meet needs of patients and families. Dementia care specialists treating individuals with dementia offer unique insight into care needs of diverse groups of patients, families, and healthcare systems that can be used to identify opportunities to improve care.To understand dementia care specialists' impressions of factors impacting ADRD diagnosis and post-diagnosis support. We aimed to identify factors that impact: (1) timely and accurate diagnosis, (2) diagnostic disclosure and provision of post-diagnosis support, and (3) patient and care-partner adjustment after diagnosis.
We recruited dementia care specialists treating persons living with dementia (n=19) from two academic medical centers. Participants completed 60-minute qualitative focus groups or individual interviews. Data were analyzed using a hybrid inductive-deductive approach to thematic analysis.
We identified subthemes within three overarching a-priori determined themes. Participants highlighted the presence of delays in referrals, time constraints, specialist discomfort, and lack of training as factors impacting the timeliness and accuracy of diagnosis. They also highlighted information needed in disclosure visits, ways of coordinating care, and identifying early support needs. Finally, participants highlighted factors impacting adjustment including families' insight and acceptance, distress, and available resources.
Our study highlights the challenges dementia care specialist specialists face in delivering early support for individuals and families impacted by ADRDs and suggests avenues for revising existing care models.
阿尔茨海默病及相关痴呆症（ADRDs）是渐进性疾病，对个人和家庭产生重大影响。及时诊断和早期支持对于长期适应至关重要。然而，当前的痴呆症护理模式无法满足患者和家庭的需求。治疗痴呆症患者的痴呆症护理专家对不同患者群体、家庭和医疗系统的护理需求有着独特的见解，这些见解可用于确定改善护理的机会。为了解痴呆症护理专家对影响ADRD诊断及诊断后支持因素的看法。我们旨在确定影响以下方面的因素：（1）及时准确的诊断；（2）诊断披露及诊断后支持的提供；（3）患者及护理伙伴在诊断后的适应情况。
我们从两个学术医疗中心招募了治疗痴呆症患者的痴呆症护理专家（n = 19）。参与者完成了60分钟的定性焦点小组讨论或个人访谈。采用混合归纳 - 演绎的主题分析方法对数据进行分析。
我们在三个预先确定的总体主题中确定了子主题。参与者强调转诊延迟、时间限制、专家不适和缺乏培训是影响诊断及时性和准确性的因素。他们还强调了诊断披露访视所需的信息、协调护理的方式以及确定早期支持需求。最后，参与者强调了影响适应的因素，包括家庭的洞察力和接受度、痛苦程度以及可用资源。
我们的研究突出了痴呆症护理专家在为受ADRDs影响的个人和家庭提供早期支持方面所面临的挑战，并提出了修订现有护理模式的途径。
