The perception of family caregivers regarding the changes that occur after the diagnosis of dementia

Abstract Objectives : to identify the perceptions of family caregivers regarding the changes that occurred in the family after an elderly relative received a diagnosis of dementia, measuring the changes in the level of burden and analyzing the discourse of such caregivers. Method : the research was conducted through an interview and sociodemographic questionnaire, in addition to the application of a scale that measures caregiver burden, the Zarit Burden Interview. These procedures were applied in two stages, in the multidisciplinary reception of a geriatric clinic, and after three months of care. For the qualitative analysis, the IRaMuTeQ software was used, where, in the first stage, the results were as follows: in the Descending Hierarchical Classification (DHC) four classes were identified: Time (25.00%), Knowledge (33.00%), Consequences and Causes (19.40%); In the Word Cloud (WC), the word ‘No” prevailed. In the second stage, DHC presented six classes, Current Time (13.70%), General Causes (15.70%), Future Time (13.70%), Actions (17.60%), Consequences (23.50%) and Immediate Causes (15.70%). The WC continued to refer most frequently to the word ‘No’. For quantitative analyzes, the SPSS software was used. Results : in most cases, the profile of caregivers was women (75.00%), wives (62.00%), primary caregivers (87.50%), and the elderly (60-75 years). The assessment of burden was moderate to severe (75.00%). Conclusion : caring for a relative with a diagnosis of dementia has direct implications for family caregivers, especially family caregivers facing the aging process. The demands of caring modify the family routine and greatly increase the burden of caregivers.

摘要 研究目的：明确家庭照护者对老年亲属确诊痴呆后家庭所发生变化的认知，量化照护负担水平的变化，并分析此类照护者的话语内容。研究方法：本研究通过访谈与社会人口学问卷开展，并采用Zarit负担访谈量表（Zarit Burden Interview）测量照护者负担。上述研究流程分两阶段实施：其一为老年医学门诊多学科接诊阶段，其二为接受照护三个月后。定性分析采用IRaMuTeQ软件：第一阶段的分析结果显示，降维层次分类（Descending Hierarchical Classification, DHC）共识别出四类主题：时间（25.00%）、认知（33.00%）、后果与成因（19.40%）；词云（Word Cloud, WC）中出现频率最高的词汇为“No”。第二阶段的降维层次分类则识别出六类主题：当前时段（13.70%）、一般成因（15.70%）、未来时段（13.70%）、应对措施（17.60%）、后果（23.50%）与直接成因（15.70%）；词云仍以“No”为最高频词汇。定量分析采用SPSS软件。研究结果：多数照护者为女性（75.00%）、患者配偶（62.00%）、主要照护者（87.50%），且照护者本人年龄多处于60-75岁区间。照护负担评估结果显示75.00%的受访者负担处于中度至重度水平。研究结论：照护痴呆确诊亲属的行为会对家庭照护者产生直接影响，尤其对于正经历衰老过程的家庭照护者而言更为显著。照护需求会改变家庭日常作息，并大幅提升照护者的负担水平。