Ito Kae, Tsuda Shuji
Tokyo Metropolitan Institute for Geriatrics and Gerontology, Tokyo, Japan.
PLoS One. 2025 Jan 22;20(1):e0317911. doi: 10.1371/journal.pone.0317911. eCollection 2025.
Dementia presents significant challenges, including social exclusion, which can be exacerbated by public stigma. This study aimed to clarify how social distances, a common measure of public stigma, towards people living with dementia and its associated factors vary with clinical stage, presence of behavioral and psychological symptoms of dementia (BPSD), and living arrangements.
The study involved 2,589 Japanese participants aged 40 to 90 years. They were exposed to one of four vignettes depicting an 80-year-old woman progressing from normal ageing to mild, moderate, and severe dementia: Vignette A (living with husband, without BPSD); Vignette B (living with husband, with BPSD); Vignette C (living alone, without BPSD); and Vignette D (living alone, with BPSD).
Social distance showed no significant differences in the normal aging and mild stage of dementia across all vignettes. At the moderate stage, social distance was higher for individuals exhibiting BPSD, regardless of living arrangement. At the severe stage, the lowest social distance was observed towards individuals living with their family without BPSD, whereas the highest was towards those living alone, exhibiting BPSD. For Vignette A, possession of social capital (p<0.001) and having experience of social contact with people living with dementia (PLWD) (p = 0.001-0.007) were independently associated with lower social distance across all dementia stages. In addition, in the mild stage of dementia, high perceived social support (p = 0.005) and having knowledge about dementia (p = 0.036) were associated with lower social distance, but not in the moderate or severe stage of dementia. For Vignette D, possession of social capital (p≤0.001) and having experience of social contact with PLWD (p<0.001 to p = 0.006) were independently associated with lower social distance across all dementia stages. In mild dementia, female sex (p = 0.004) and knowledge about dementia (p = 0.026) were associated with lower social distance. Furthermore, in mild and moderate dementia, living in rural area (p = 0.003-0.048) was associated with lower social distance.
Social distance is higher toward PLWD who live alone and exhibit BPSD than toward those who live with family and/or do not show BPSD, indicating a higher risk of exclusion for the former. Moreover, factors affecting social distance towards PLWD vary across different clinical stages of dementia. While greater knowledge about dementia is associated with lower social distance toward PLWD, this effect appears to be most pronounced in the mild stage. In contrast, opportunities for social contact with PLWD are crucial for achieving lower social distance across all stages of dementia. The findings underscore the need for stage-specific interventions to address stigma, with a focus on education and opportunities for social contact. Targeted efforts are especially important for promoting the inclusion of PLWD who live alone and exhibit BPSD.
痴呆症带来了重大挑战，包括社会排斥，而公众的污名化会加剧这种情况。本研究旨在阐明作为公众污名化常用衡量指标的社会距离，对于痴呆症患者及其相关因素如何随临床阶段、痴呆症行为和心理症状（BPSD）的存在以及生活安排而变化。
该研究涉及2589名年龄在40至90岁之间的日本参与者。他们接触了四个场景之一，这些场景描绘了一名80岁女性从正常衰老发展到轻度、中度和重度痴呆症的过程：场景A（与丈夫同住，无BPSD）；场景B（与丈夫同住，有BPSD）；场景C（独自生活，无BPSD）；场景D（独自生活，有BPSD）。
在所有场景中，正常衰老和痴呆症轻度阶段的社会距离没有显著差异。在中度阶段，无论生活安排如何，表现出BPSD的个体的社会距离更高。在重度阶段，观察到对与家人同住且无BPSD的个体的社会距离最低，而对独自生活且有BPSD的个体的社会距离最高。对于场景A，拥有社会资本（p<0.001）以及有与痴呆症患者（PLWD）进行社会接触的经历（p = 0.001 - 0.007）在所有痴呆症阶段均与较低的社会距离独立相关。此外，在痴呆症轻度阶段，较高的感知社会支持（p = 0.005）和对痴呆症的了解（p = 0.036）与较低的社会距离相关，但在痴呆症中度或重度阶段则不然。对于场景D，拥有社会资本（p≤0.001）以及有与PLWD进行社会接触的经历（p<0.001至p = 0.006）在所有痴呆症阶段均与较低的社会距离独立相关。在轻度痴呆症中，女性（p = 0.004）和对痴呆症的了解（p = 0.026）与较低的社会距离相关。此外，在轻度和中度痴呆症中，居住在农村地区（p = 0.003 - 0.048）与较低的社会距离相关。
与与家人同住和/或未表现出BPSD的痴呆症患者相比，对独自生活且表现出BPSD的痴呆症患者的社会距离更高，这表明前者被排斥的风险更高。此外，影响对痴呆症患者社会距离的因素在痴呆症的不同临床阶段有所不同。虽然对痴呆症的更多了解与对痴呆症患者较低的社会距离相关，但这种影响在轻度阶段似乎最为明显。相比之下，与痴呆症患者进行社会接触的机会对于在痴呆症的所有阶段实现较低的社会距离至关重要。研究结果强调了针对不同阶段进行干预以消除污名化的必要性，重点是教育和社会接触机会。有针对性的努力对于促进对独自生活且表现出BPSD的痴呆症患者的包容尤为重要。
