Marie Curie Palliative Care Research Department, Division of Psychiatry, 325312UCL, London, UK.
Division of Psychiatry, 4919UCL, London, UK.
Dementia (London). 2022 May;21(4):1270-1288. doi: 10.1177/14713012221074219. Epub 2022 Mar 2.
Dementia is a life limiting disease following a progressive trajectory. As carers often become key decision makers, their knowledge of dementia will have health implications for the person living with dementia as well as carer's psychological wellbeing.
To explore how sociodemographic factors, health literacy and dementia experience influence family carers knowledge about dementia.
In this cross-sectional, mixed methods study, we interviewed 150 family carers and assessed their dementia knowledge using the Dementia Knowledge Assessment Scale (DKAS). Linear regression analyses were used to examine whether health literacy, previous experiences of dementia, support group attendance and sociodemographic characteristics predicted knowledge. Sixteen carers also completed qualitative interviews which explored unmet information needs. Transcripts and field notes were thematically analysed.
Most participants were partners (47%) or adult children (48%) and cared for someone with severe (32%) or moderate (43%) dementia. Mean DKAS scores were 34.8/50 (SD = 7.0, range = 17-48) reflecting 8/25 incorrect answers. Backwards elimination regression found greater dementia knowledge was associated with greater health literacy for appraising information (coef 3.48, 95% CI (1.38, 5.58); = 0.001) and more years of education (coef 0.39, 95% CI (0.12, 0.65); = 0.004). Although not significant, knowledge was slightly lower in those who attended a support group, and a trend was found between ability to understand health information and knowledge. Only 39% accurately identified dementia as life shortening, indicating notable gaps in knowledge. Four qualitative themes were identified; arm yourself with information, ability to steer through information, other experience of dementia can be helpful and the importance of relationships with health care professionals.
In an information age, vast amounts of information are available, but this can bring difficulties. Carers with more years of education and higher health literacy knew more about dementia. Professionals should consider how carers with lower health literacy can be supported through provision of timely, relevant information.
痴呆症是一种呈进行性轨迹的危及生命的疾病。由于照顾者通常成为关键决策者，他们对痴呆症的了解将对患有痴呆症的人以及照顾者的心理健康产生健康影响。
探讨社会人口因素、健康素养和痴呆症经历如何影响家庭照顾者对痴呆症的认识。
在这项横断面、混合方法研究中，我们采访了 150 名家庭照顾者，并使用痴呆症知识评估量表（DKAS）评估了他们的痴呆症知识。线性回归分析用于检查健康素养、以前的痴呆症经历、参加支持小组以及社会人口特征是否预测知识。16 名照顾者还完成了定性访谈，探讨了未满足的信息需求。对转录本和现场记录进行了主题分析。
大多数参与者是伴侣（47%）或成年子女（48%），照顾患有严重（32%）或中度（43%）痴呆症的人。平均 DKAS 得分为 34.8/50（SD=7.0，范围为 17-48），反映出 17-25 个错误答案。向后消除回归发现，更高的痴呆症知识与更高的信息评估健康素养（系数 3.48，95%置信区间（1.38，5.58）；p=0.001）和更高的教育年限（系数 0.39，95%置信区间（0.12，0.65）；p=0.004）相关。尽管不显著，但参加支持小组的人知识略低，并且在理解健康信息的能力和知识之间存在趋势。只有 39%的人准确地将痴呆症识别为缩短寿命，表明知识存在明显差距。确定了四个定性主题；武装自己的信息，驾驭信息的能力，其他的痴呆症经历可能会有所帮助，以及与医疗保健专业人员的关系的重要性。
在信息时代，大量信息可用，但这可能会带来困难。受教育年限更长和健康素养更高的照顾者对痴呆症的了解更多。专业人员应考虑如何通过及时提供相关信息来支持健康素养较低的照顾者。
