Abstract

People with dementia have typically been treated as homogenous groups with little recognition of unique aspects of identities, including age and gender. The purpose of this paper is to illuminate the experiences of women living with young onset dementia which led them to take up advocacy roles as a result of their experiences. Five women from Canada who were diagnosed with young onset dementia and had then taken on advocacy roles were interviewed. Two main themes emerged–Moving In (the challenges of a diagnosis) and Moving On (into a new life). They described the challenges of a diagnosis as stopping work, being taken seriously, fighting for support, failing to meet requirements for programs and services, and changing relationships with friends. The challenges led them to move into a new life, accepting their diagnosis, and moving into new roles of advocacy and supporting others with dementia in their journey. Further research should seek to explore diversity, rather than treating people with dementia as the same.

• Points of interest

• The experience of dementia is different for everyone. From getting a diagnosis to living a life with dementia, these experiences are unique.

• Based on interviews with five women living with dementia diagnosed before age 65, it was found that the challenges of getting a diagnosis led the women to become advocates for supporting others with dementia in their journey.

• The challenges of a diagnosis included stopping work, being taken seriously, fighting for support, not meeting requirements for programs and services, and changing relationships with friends.

• As a result of their experiences, the women moved on into a new life, accepting their diagnoses, and taking on advocacy roles to create change for others living with dementia.

• The advocacy roles undertaken by these women demonstrate the need to recognize the unique aspects of people with dementia, in particular women with young onset dementia, without making assumptions that the experience of dementia is the same for everyone.

摘要

痴呆症患者通常被视为同质群体，几乎不承认身份的独特方面，包括年龄和性别。本文的目的是阐明患有早发性痴呆症的女性的经历，这些经历使她们因经历而承担了倡导角色。采访了五名来自加拿大的女性，她们被诊断出患有早发性痴呆，然后担任了倡导角色。出现了两个主要主题——搬进来（诊断的挑战）和继续前进（进入新生活）。他们将诊断的挑战描述为停止工作、被认真对待、争取支持、未能满足计划和服务的要求以及与朋友的关系发生变化。这些挑战使他们开始了新的生活，接受了他们的诊断，并承担了新的宣传角色，并在他们的旅程中支持其他患有痴呆症的人。进一步的研究应该寻求探索多样性，而不是把痴呆症患者一视同仁。

• 兴趣点

• 痴呆症的经历对每个人来说都是不同的。从得到诊断到过着痴呆症的生活，这些经历都是独一无二的。

• 根据对五名在 65 岁之前被诊断出患有痴呆症的女性的采访，发现诊断的挑战使这些女性成为支持其他患有痴呆症的人在旅途中的倡导者。

• 诊断的挑战包括停止工作、被认真对待、争取支持、不满足计划和服务的要求以及改变与朋友的关系。

• 由于她们的经历，这些女性开始了新的生活，接受了她们的诊断，并承担了倡导角色，为其他患有痴呆症的人创造改变。

• 这些妇女所承担的宣传角色表明，需要认识到痴呆症患者的独特方面，尤其是患有年轻痴呆症的女性，而不是假设每个人的痴呆症经历都是相同的。