PDF(Pubmed)
Abstract：
Posterior Cortical Atrophy (PCA) is a rare form of young-onset dementia that causes early visuospatial and visuoperceptual deficits. The symptom profile of Posterior Cortical Atrophy leads to very specific care needs for those affected, who often rely on informal caregivers (including friends and family). Rare dementia support groups can be useful for both patients and their caregivers to assist with knowledge sharing, psychoeducation, and the provision of psychosocial support. Despite this, few such support groups exist. The purpose of this study was to examine a PCA support group for caregivers of individuals living with PCA. We held a structured psychoeducation support group comprised of four sessions with the aim being to provide education, strategies for the management of the disease, and peer support. Caregivers\' mental health and quality of life were assessed. The results of our study showed that support group participation was a positive experience and assisted with increasing the knowledge of caregivers and fostering social connections. We suggest that peer support groups may be beneficial for both people living with PCA and their caregivers. We recommend that future quantitative and qualitative research is conducted to further assess health-promotion benefits to people living with PCA and their caregivers, and to assess their development and implementation in different contexts.
摘要：
后皮质萎缩症（PCA）是一种罕见的年轻发作性痴呆，会导致早期的视觉空间和视觉感知缺陷。后皮质萎缩的症状特征导致受影响的患者需要非常特殊的护理，他们经常依赖非正式的照顾者(包括朋友和家人)。罕见的痴呆症支持小组对患者及其护理人员都很有用，可以帮助他们分享知识。心理教育,提供社会心理支持。尽管如此,这样的支持团体很少。这项研究的目的是检查PCA支持小组，以帮助患有PCA的人的护理人员。我们举办了一个结构化的心理教育支持小组，由四个会议组成，目的是提供教育，疾病管理策略，和同行支持。对护理人员的心理健康和生活质量进行了评估。我们的研究结果表明，支持小组的参与是一种积极的经历，并有助于增加护理人员的知识和促进社会联系。我们建议同伴支持小组可能对PCA患者及其照顾者都有益。我们建议进行未来的定量和定性研究，以进一步评估对PCA患者及其护理人员的健康促进益处，并评估它们在不同背景下的发展和实施。
