Abstract：
OBJECTIVE: The behavioral variant of frontotemporal dementia is characterized by profound changes in personality and behavior that often start before the age of 65 years. These symptoms impact family life, particularly if (adult) children live at home. In research on young-onset dementia or frontotemporal dementia, the family itself is hardly ever a unit of analysis. Insight in the perspectives of different family members from the same household helps to obtain a deeper understanding of the complex impact of the symptoms on family dynamics.
METHODS: This case study explored the perspectives of one family having a relative with the behavioral variant of frontotemporal dementia living at home. Over the course of 4 months, different family members were individually interviewed twice. Two authors independently performed a directed content analysis.
RESULTS: The family consisted of a father, mother, and three adult children. Around 3 years before the interviews the father was diagnosed with frontotemporal dementia.The main category identified was the change in family dynamics over the disease trajectory. Three subcategories characterized the changing family dynamics, namely (a) the change in existing roles, relationships and interaction patterns in the family due to early symptoms, (b) a redefinition of roles and responsibility in the family once the diagnosis was established, and (c) the formation of new roles, relationships and interaction patterns in the family by organizing post-diagnostic support at home.
CONCLUSIONS: Symptoms of the behavioral variant of frontotemporal dementia have a complex and profound impact on family dynamics and change existing roles, relationships, and interaction patterns. Psychosocial support may help families by accounting for individual differences in involvement, coping, and bereavement. This may help to create a sense of mutual understanding between family members that could potentially strengthen their relationship. This may help families to deal with the difficult challenge of organizing care for a relative with frontotemporal dementia who lives at home.
METHODS: This case study explored the perspectives of one family having a relative with the behavioral variant of frontotemporal dementia living at home. Over the course of 4 months, different family members were individually interviewed twice. Two authors independently performed a directed content analysis.
RESULTS: The family consisted of a father, mother, and three adult children. Around 3 years before the interviews the father was diagnosed with frontotemporal dementia.The main category identified was the change in family dynamics over the disease trajectory. Three subcategories characterized the changing family dynamics, namely (a) the change in existing roles, relationships and interaction patterns in the family due to early symptoms, (b) a redefinition of roles and responsibility in the family once the diagnosis was established, and (c) the formation of new roles, relationships and interaction patterns in the family by organizing post-diagnostic support at home.
CONCLUSIONS: Symptoms of the behavioral variant of frontotemporal dementia have a complex and profound impact on family dynamics and change existing roles, relationships, and interaction patterns. Psychosocial support may help families by accounting for individual differences in involvement, coping, and bereavement. This may help to create a sense of mutual understanding between family members that could potentially strengthen their relationship. This may help families to deal with the difficult challenge of organizing care for a relative with frontotemporal dementia who lives at home.
摘要：
目的：额颞叶痴呆的行为变异特征是人格和行为的深刻变化，通常在65岁之前开始。这些症状影响家庭生活，特别是如果（成人）孩子住在家里。在对青年型痴呆或额颞叶痴呆的研究中，家庭本身几乎不是一个分析单位。从同一家庭的不同家庭成员的角度进行洞察有助于更深入地了解症状对家庭动态的复杂影响。
方法：本案例研究探讨了一个家庭的观点，该家庭有一个亲戚与额颞叶痴呆的行为变异生活在家中。在4个月的时间里,不同的家庭成员分别接受了两次采访。两位作者独立进行了定向内容分析。
结果：家庭由父亲组成，母亲,和三个成年子女。在采访前大约3年，父亲被诊断出患有额颞叶痴呆。确定的主要类别是疾病轨迹上家庭动态的变化。三个子类别描述了不断变化的家庭动态，即(A)现有角色的变化，由于早期症状，家庭中的关系和相互作用模式，（b）一旦诊断确定，重新定义家庭中的角色和责任，(c)新角色的形成，通过在家中组织诊断后支持，家庭中的关系和互动模式。
结论：额颞叶痴呆行为变异的症状对家庭动态和现有角色的改变具有复杂而深远的影响，关系,和互动模式。心理社会支持可以通过考虑参与的个体差异来帮助家庭，应对,和丧亲。这可能有助于在家庭成员之间建立一种相互理解的感觉，这可能会加强他们的关系。这可能有助于家庭应对为居住在家中的额颞叶痴呆症亲戚组织护理的艰巨挑战。
方法：本案例研究探讨了一个家庭的观点，该家庭有一个亲戚与额颞叶痴呆的行为变异生活在家中。在4个月的时间里,不同的家庭成员分别接受了两次采访。两位作者独立进行了定向内容分析。
结果：家庭由父亲组成，母亲,和三个成年子女。在采访前大约3年，父亲被诊断出患有额颞叶痴呆。确定的主要类别是疾病轨迹上家庭动态的变化。三个子类别描述了不断变化的家庭动态，即(A)现有角色的变化，由于早期症状，家庭中的关系和相互作用模式，（b）一旦诊断确定，重新定义家庭中的角色和责任，(c)新角色的形成，通过在家中组织诊断后支持，家庭中的关系和互动模式。
结论：额颞叶痴呆行为变异的症状对家庭动态和现有角色的改变具有复杂而深远的影响，关系,和互动模式。心理社会支持可以通过考虑参与的个体差异来帮助家庭，应对,和丧亲。这可能有助于在家庭成员之间建立一种相互理解的感觉，这可能会加强他们的关系。这可能有助于家庭应对为居住在家中的额颞叶痴呆症亲戚组织护理的艰巨挑战。
