Abstract：
BACKGROUND: Supporting ageing in place, quality of life and activity engagement are public health priorities for people living with dementia, but little is known about the needs and experiences of community-dwelling people with rarer forms of dementia with lesser known symptoms. Posterior cortical atrophy (PCA) is a rare form of dementia usually caused by Alzheimer\'s disease but which is characterised by diminished visual processing (rather than a dominant memory problem), which poses challenges for maintaining independence and accessing appropriate support.
METHODS: This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer\'s disease and 10 people with posterior cortical atrophy within their everyday home environments.
RESULTS: While the data collection revealed much rich variation in individual and contextual factors, some tentative high-level differences in the experiences of everyday activities could be drawn out, seemingly attributable to the different diagnoses\' differing dominant symptoms. These included people with posterior cortical atrophy being less likely to use environmental cues to initiate activities, and more likely to withhold from asking for support because of preserved insight into the impact of this on carers. This lack of initiation of activities could be misinterpreted as apathy. People with posterior cortical atrophy also were discouraged from engaging in activities by disorientation within the home, and difficulties localising, identifying and manipulating objects. People with the more common, memory-led presentation of Alzheimer\'s disease exhibited more memory-based difficulties with engaging with activities such as forgetting planned activities, where to locate the items required for an activity and the steps involved. Despite these distinct symptom-led challenges, all participants and their family members demonstrated resourcefulness and resilience in making creative adaptations to support continued engagement in everyday activities, supporting the widely reported management strategies of people with dementia of the Alzheimer\'s type more generally.
CONCLUSIONS: These findings offer helpful insights into some the differing impacts dementia related visual and memory impairments can have on everyday activity engagement, which will be helpful for others navigating these challenges and the health and social care practitioners working with people affected by these conditions. The findings also highlight the vast individual variation in the multitude of individual and contextual factors involved in everyday activity engagement, and suggest important areas for future work utilising methods which are similarly high in ecological validity and accessibility as the home-based focussed ethnographic methods utilised here.
METHODS: This study used a comparative qualitative design and focussed ethnographic methods to explore experiential differences in activity engagement for 10 people with the most common, memory-led presentation of Alzheimer\'s disease and 10 people with posterior cortical atrophy within their everyday home environments.
RESULTS: While the data collection revealed much rich variation in individual and contextual factors, some tentative high-level differences in the experiences of everyday activities could be drawn out, seemingly attributable to the different diagnoses\' differing dominant symptoms. These included people with posterior cortical atrophy being less likely to use environmental cues to initiate activities, and more likely to withhold from asking for support because of preserved insight into the impact of this on carers. This lack of initiation of activities could be misinterpreted as apathy. People with posterior cortical atrophy also were discouraged from engaging in activities by disorientation within the home, and difficulties localising, identifying and manipulating objects. People with the more common, memory-led presentation of Alzheimer\'s disease exhibited more memory-based difficulties with engaging with activities such as forgetting planned activities, where to locate the items required for an activity and the steps involved. Despite these distinct symptom-led challenges, all participants and their family members demonstrated resourcefulness and resilience in making creative adaptations to support continued engagement in everyday activities, supporting the widely reported management strategies of people with dementia of the Alzheimer\'s type more generally.
CONCLUSIONS: These findings offer helpful insights into some the differing impacts dementia related visual and memory impairments can have on everyday activity engagement, which will be helpful for others navigating these challenges and the health and social care practitioners working with people affected by these conditions. The findings also highlight the vast individual variation in the multitude of individual and contextual factors involved in everyday activity engagement, and suggest important areas for future work utilising methods which are similarly high in ecological validity and accessibility as the home-based focussed ethnographic methods utilised here.
摘要：
背景：支持就地老化，生活质量和活动参与是痴呆症患者的公共卫生优先事项，但是对社区居民的需求和经验知之甚少，这些人患有罕见的痴呆症，症状较少。后皮质萎缩（PCA）是一种罕见的痴呆形式，通常由阿尔茨海默病引起，但其特征是视觉处理减少（而不是主要的记忆问题）。这对保持独立性和获得适当支持构成了挑战。
方法：本研究采用了比较定性设计和集中的人种学方法，以探索10位最常见，以记忆为主导的阿尔茨海默病和10名患者在日常家庭环境中患有后皮质萎缩。
结果：虽然数据收集显示了个体和背景因素的丰富差异，可以消除日常活动经验中的一些初步高层差异，似乎归因于不同的诊断\'不同的主要症状。这些包括后皮质萎缩的人不太可能使用环境线索来启动活动，并且更有可能拒绝寻求支持，因为保留了对护理者影响的洞察力。这种缺乏活动的启动可能会被误解为冷漠。患有后皮质萎缩的人也被劝阻在家中因定向障碍而从事活动，和本地化的困难，识别和操纵对象。人们与更常见的，以记忆为主导的阿尔茨海默病表现出更多基于记忆的困难，参与活动，如忘记计划的活动，在哪里找到活动所需的项目和所涉及的步骤。尽管这些明显的症状导致的挑战，所有参与者及其家庭成员在进行创造性适应以支持持续参与日常活动方面表现出机智和韧性，更广泛地支持广泛报道的阿尔茨海默型痴呆症患者的管理策略。
结论：这些发现为痴呆相关的视觉和记忆障碍对日常活动参与的一些不同影响提供了有益的见解。这将有助于其他人应对这些挑战，以及与受这些条件影响的人一起工作的健康和社会护理从业者。研究结果还强调了日常活动参与中涉及的众多个人和环境因素的巨大个体差异，并建议未来工作的重要领域，这些方法在生态有效性和可及性方面与此处使用的以家庭为重点的人种学方法相似。
方法：本研究采用了比较定性设计和集中的人种学方法，以探索10位最常见，以记忆为主导的阿尔茨海默病和10名患者在日常家庭环境中患有后皮质萎缩。
结果：虽然数据收集显示了个体和背景因素的丰富差异，可以消除日常活动经验中的一些初步高层差异，似乎归因于不同的诊断\'不同的主要症状。这些包括后皮质萎缩的人不太可能使用环境线索来启动活动，并且更有可能拒绝寻求支持，因为保留了对护理者影响的洞察力。这种缺乏活动的启动可能会被误解为冷漠。患有后皮质萎缩的人也被劝阻在家中因定向障碍而从事活动，和本地化的困难，识别和操纵对象。人们与更常见的，以记忆为主导的阿尔茨海默病表现出更多基于记忆的困难，参与活动，如忘记计划的活动，在哪里找到活动所需的项目和所涉及的步骤。尽管这些明显的症状导致的挑战，所有参与者及其家庭成员在进行创造性适应以支持持续参与日常活动方面表现出机智和韧性，更广泛地支持广泛报道的阿尔茨海默型痴呆症患者的管理策略。
结论：这些发现为痴呆相关的视觉和记忆障碍对日常活动参与的一些不同影响提供了有益的见解。这将有助于其他人应对这些挑战，以及与受这些条件影响的人一起工作的健康和社会护理从业者。研究结果还强调了日常活动参与中涉及的众多个人和环境因素的巨大个体差异，并建议未来工作的重要领域，这些方法在生态有效性和可及性方面与此处使用的以家庭为重点的人种学方法相似。
