Dementia and Prescribed Disengagement™
Dementia and Prescribed Disengagement™
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痴呆症和规定脱离接触™
DOI：
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发表时间：
2015
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影响因子：
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通讯作者：
Kate Swaffer
中科院分区：
文献类型：
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作者：
Kate Swaffer
在诊断出痴呆症后，大多数医疗保健专业人员，包括神经学家，老年病学家，医生，全科医生和痴呆症服务提供者，都规定放弃诊断前的生活，并为新诊断出痴呆症的人的死亡制定所有计划，如遗嘱，监护权和其他生命终结问题。我被告知“放弃工作，放弃学习，回家过我剩下的日子”。到了2009年，我把这称为“规定的脱离接触”，我最终选择忽略它。人们不得不问这样一个问题：为什么有一天我还在读大学，全职工作，做志愿者，养家糊口，和我的丈夫一起操持家务，第二天，我被告知要放弃这一切，放弃我所知道的生活，开始为我剩下的时间“生活”？这种规定的脱离接触会引起失败和恐惧的连锁反应，这会对一个人积极、有弹性和积极主动的能力产生负面影响。痴呆症是我所知道的唯一一种疾病或病症，也是唯一一种绝症，病人被告知要回家，放弃诊断前的生活，而不是“为自己的生命而战”。这些家庭和伴侣还被告知，他们将不得不很快放弃工作，成为全职的“照顾者”。让自己熟悉住宅护理建议。所有这些建议都是善意的，但基于缺乏教育和误解以及人们如何与痴呆症一起生活的神话。这使我们过着没有希望或对未来没有任何感觉的生活，并破坏了我们对未来幸福的感觉;这可能意味着痴呆症患者的行为像一个“受害者”或“受苦者”，而且很多时候他们的护理伙伴是烈士。我的驾照被吊销后，我被迫放弃了有薪工作，但继续在大学学习。如果痴呆症的症状被视为残疾，我的雇主在法律上有义务找到一个替代职位，并提供适当的残疾支持。学习意味着我需要使用很多策略来提高效率，帮助我专注于有意义的活动，重要的是，远离痴呆症的焦点。它增强了我的神经可塑性和恢复力，让我可以用痴呆症以外的东西来定义自己。值得庆幸的是，在大学里，
Following a diagnosis of dementia, most health care professionals, including neurologists, geriatricians, physicians, general practitioners, and dementia service providers prescribe giving up a pre-diagnosis life and put all the planning in place for the demise of the person newly diagnosed with dementia such as wills, powers of guardianship and other end of life issues. I was told ‘to give up work, give up study, and to go home and live for the time I had left’. By 2009, I had termed this Prescribed Dis-engagement, and I ultimately chose to ignore it. One has to ask the question: Why is it that one day I was studying a tertiary degree, working full time, volunteering, raising a family and running a household with my husband, and the next day, told to give it all up, to give up life as I knew it, and start ‘living’ for the time I had left? This Prescribed Dis-engagement sets up a chain reaction of defeat and fear, which negatively impacts a person’s ability to be positive, resilient and proactive. Dementia is the only disease or condition and the only terminal illness that I know of where patients are told to go home and give up their pre-diagnosis lives, rather than to ‘fight for their lives’. The families and partners are also told they will have to give up work soon to become full time ‘carers’. Getting yourself acquainted with residential care is recommended. All of this advice is well-meaning, but based on a lack of education and misperceptions and myths about how people can live with dementia. This sets us up to live a life without hope or any sense of a future and destroys our sense of future well-being; it can mean the person with dementia behaves like a ‘victim’ or ‘sufferer’, and many times their care partner as a martyr. I was forced to give up paid employment after having my driver’s license revoked, but continued to study at university. If the symptoms of dementia had been seen as disabilities, my employer would have been legally obliged to find an alternative position, with the appropriate disability support. Studying meant I needed to use a lot of strategies to be productive, helped me remained focused on meaningful activities, and importantly, away from the focus of dementia. It increased my neuroplasticity and resilience and allowed me to define myself by something other than dementia. Thankfully, at university, people with