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	<title>人士 Archives - DementiaHub.SG</title>
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	<title>人士 Archives - DementiaHub.SG</title>
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		<title>从看护者的角度看待失智症</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/what-caregivers-want-you-to-know/</link>
		
		<dc:creator><![CDATA[Admin]]></dc:creator>
		<pubDate>Wed, 10 Jul 2024 04:59:45 +0000</pubDate>
				<category><![CDATA[人士]]></category>
		<category><![CDATA[博客]]></category>
		<category><![CDATA[我的至亲是失智症人士]]></category>
		<category><![CDATA[与失智症共存]]></category>
		<category><![CDATA[社区或职场成员]]></category>
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					<description><![CDATA[<p>让看护者，Sally Ridon 和 Serene Toh，与我们分享她们看护失智症人士的亲身体感，并给予其它看护者一些看护失智症人士的见解。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/what-caregivers-want-you-to-know/">从看护者的角度看待失智症</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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									<p>理解失智症最佳的方式就是直接与失智症人士的看护者面谈。我们有幸从两位失智症看护者，又称看护伙伴，Sally Ridon 和 Serene Toh，深谈。身为看护伙伴，Sally 和 Serene强调护理的协作性质不仅仅是提供援助，而是在彼此的关系中共同努力。</p>								</div>
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															<img decoding="async" width="800" height="943" src="https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-8-869x1024.png" class="attachment-large size-large wp-image-53975" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-8-869x1024.png 869w, https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-8-255x300.png 255w, https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-8-768x905.png 768w, https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-8.png 917w" sizes="(max-width: 800px) 100vw, 800px" />															</div>
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									<p>Serene的丈夫，Kim Han在2021年被诊断患有年轻型失智症。Kim Han面对着两个巨大的挑战 — 他的病状和失业 — Serene也因此离职来全职照顾 Kim Han，并以决心和韧性来应对复杂的失智症。</p>								</div>
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															<img decoding="async" width="800" height="943" src="https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-9-869x1024.png" class="attachment-large size-large wp-image-53971" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-9-869x1024.png 869w, https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-9-255x300.png 255w, https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-9-768x905.png 768w, https://www.dementiahub.sg/wp-content/uploads/2024/07/Untitled-design-9.png 917w" sizes="(max-width: 800px) 100vw, 800px" />															</div>
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									<p>Sally的看护旅程从2020年开始。当年，Dan 不仅患上年轻型失智症他也有心脏衰竭的问题。Sally 用爱与关怀来开始她的看护路程，并从信仰中支取力量。与此同时，她也学习如何在繁多的事务中取得平衡，并主动的去搜寻有关失智症的资料。  </p>								</div>
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									<p>我们可以从她们的分享中意识到看护失智症人士的不同层面及失智症的复杂性。请继续阅读来了解失智症人士看护者的经验。</p>								</div>
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					<h4 class="elementor-heading-title elementor-size-default">看护者想对大众说的话</h4>				</div>
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							<strong>1. 失智症不仅是失去记忆</strong>						</div>
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					<p>其中一个普遍的误解就是失智症仅仅影响记忆。Serene 和 Sally 矫正说失智症对失智症人士有莫大及多方面的影响。</p>
<p>在看护失智症人士的初期，Serene不遗余力地为患失智症的Kim Han写下指示字条，希望能够在<span style="text-decoration: line-through;">后</span>诊断后的阶段帮助他，因为Serene 当时以为失智症只会影响他丈夫的记忆力。然而，当丈夫，Kim Han，无法了解及执行这些字条的内容时，Serene感到十分愤怒。她甚至责问 Kim Han为何不放心思去了解字条的内容。之后，当Serene对失智症有更全面的了解时（失智症对认知功能有极大的影响），她才意识到Kim Han的挣扎及苦楚。这也让她调整她的看护方式。</p>
<p>Sally 也感同身受，并强调失智症会导致失智症人士在行为上的变化，因此失智症人士的看护者必须对失智症有多方面的了解。Sally回顾当他的丈夫，Dan，在某年的家庭圣诞庆祝会中突然性情大变。在众人的欢笑中，Dan 突然大吼叫大家安静。每个人都被此一举惊呆了。Sally 马上把Dan带到一旁来安抚他。</p>
<p>透过这两位失智症人士看护者的分享，Serene和Sally 提到了失智症对患者认知功能及行为上的重大改变。她们也强调要多方面了解失智症才能够给予患者适当的关怀及支持。</p>
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							<strong>2.	接受失智症人士的人格和身份 </strong>						</div>
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					<p>保持失智症人士的尊严和身份是极为重要的。Serene确保Kim Han 在社交场合内通过交流被融入和产生归属感。这将有助于树立Kim Han 的自我形象及平缓情绪。例如，与朋友交流时，Serene 都会通过问题来让Kim Han感到参与感。类似的问题包括：“他的分享很逗人，不是吗?”。这样的提问方式能够让Kim Han感到被融入对话中，哪怕他不记得对话的细节。</p>
<p>Sally也采用了类似的方式来调整但又不让她丈夫， Dan，感到陌生的生活方式。例如，Sally调整了室内的环境但却保留Dan的日常作息来维持一个熟悉的感觉，与此同时来应对Dan不断改变的需要。Sally会把过期的信用卡及外币放进Dan的皮夹，让他觉得自己依然在负责家里的财务。Dan对自己还拥有皮夹感到自豪，他经常会算和整理皮夹里的外币。这样的着<span style="text-decoration: line-through;">手</span>方式会让Dan维持自己的身份、尊严及自我价值。</p>
<p>此外，Sally采用赋予能力的方式来协助Dan执行日常活动。与其完全把Dan无法做的事情挪走，Sally选择从中与他一同面对挑战。假设Dan在洗碗碟时忘了用洗碗液，Sally会以温柔的方式来提点：“洗碗时，我们必须用洗碗液。来，让我们一起洗。” 这样的处理方式让Dan 觉得自己还有能力做家务事而非得依赖他人帮他处理。</p>
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							<strong>3.	积极的给予实际的帮助 </strong>						</div>
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					<p>看护失智症人士的其一重点是当他们在户外迷失方向时给予适当的协助。Kim Han 经常面对迷失方向的挑战而且无法与人沟通， 尤其是陌生人。Serene 希望每当Kim Han走失时，旁人能够协助他来缓和他心中的恐慌与孤独。这样的一个关怀举动（例如协助通知家属） 可以把棘手的情况变得容易处理。这些举动也能够减低失智症人士及其看护者的压力。</p>
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							<strong>4.	宽容及谅解</strong>						</div>
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					<p>如果您没有信心来给予实际行动，Sally 和 Serene 呼吁大家以爱心、宽容及体恤来对待失智症人士。对失智症人士及其看护者而言，与大众互动有一定的挑战。Serene 回顾当Kim Han 善意的举动比如对陌生人撅起拇指时，旁人的反应都是据有判断性的或着一脸困惑的表情。Serene还得向外人解释Kim Han的状况来调解局面。Serene希望群众能够对有认知障碍的群体多施体谅而少给论断，并抱着仁慈及包容的态度来善待他们。</p>
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					<h4 class="elementor-heading-title elementor-size-default">看护者想对其它看护者说的话</h4>				</div>
				<div class="elementor-element elementor-element-64b3527 elementor-grid-1 elementor-widget-tablet__width-initial elementor-grid-tablet-2 elementor-grid-mobile-1 elementor-widget elementor-widget-pp-faq" data-id="64b3527" data-element_type="widget" data-e-type="widget" data-settings="{&quot;faq_layout&quot;:&quot;grid&quot;,&quot;columns&quot;:&quot;1&quot;,&quot;columns_tablet&quot;:&quot;2&quot;,&quot;columns_mobile&quot;:&quot;1&quot;}" data-widget_type="pp-faq.default">
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							<strong>5.	不要惧怕向外寻求助</strong>						</div>
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					<p>Sally 和 Serene都着重于打造一个坚固的支持系统或联络网。Serene从朋友与家人的理解及包容找到安慰。她的亲朋戚友都让Kim Han参与聚会并且提供情感上的支持。这对Serene来说是极大的安慰。Sally也感激朋友们的关爱，例如毫无疑问的做她的聆听者。这样的支持让Sally感到自己并不孤独，并且也印证了她的经历。</p>
<p><a href="https://dementia.org.sg/club/" target="_blank" rel="noopener"><strong>失智症社交俱乐部</strong></a>与其他类似机构所举办的节目让Sally和Serene多方面的支持。这个节目除了让看护者与失智者参与有意义的活动之外，它也成为了看护伙伴提供一个交流的平台。Sally和Serene能够透过这个平台来抒发她们的情绪、质询关于失智症援助并且互相支持其它看护者  。Sally也提出在这样一个安全的环境，她并不需要特意的向其他人解释Dan的病况，因为参与者都对失智症有深入的了解。这样的支持系统帮助Sally和Serene在这看护的路程中不再孤单。</p>
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							<strong>6.	没有完美无暇的看护者 </strong>						</div>
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				<div id="pp-accordion-tab-content-1052" class="pp-faq-answer" data-tab="2">
					<p>Sally和Serene强调看护是一段长远的学习过程，从而发现自己的不完美是自然的。从她们的角度来看，没有一位看护者是完美无暇的。</p>
<p>在看护失智者的过程中，看护者在面对挑战时应该保持温和，尤其当她们的情绪开始攀升。例如，当Kim Han把房子弄到凌乱不堪时，Serene的反应有可能是烦躁。但是，她却选择提醒自己Kim Han并不知道自己在做什么。怒气并不能够解决问题，所以她学习如何退让。重整心态让Serene专注在如何解决问题而非责骂Kim Han。</p>
<p>这个处理方式也让Serene在遇到挑战时优先考虑情绪的波动并保持冷静。例如，当她与Kim Han 在外而她上洗手间后发现Kim Han不见时，她必须保持冷静，并告诉自己她肯定会找到Kim Han。这个心态的转变带给了Serene 和 Kim Han内心的平静也改善了他们在类似情况的紧张情绪。</p>
<p>相同的，纵然得面对各种的挑战，Sally 任然保持内心的平静并且承认对未来的焦虑是正常的。她所给予其它看护者的建议是依靠您生命里给您力量的支柱，例如家人或宗教，并且一步一步往前走并把所面对的挑战习以为常。</p>
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									<p>总的来说，Sally和Serene 这两位失智症人士的看护者让我们看到失智症看护的不同层面。她们强调合作、同理心、通过实际的支持来提升失智症人士的生活素质及让失智症人士感到归属及被包容是十分重要的。我们必须营造一个失智友善的环境来让失智症人士感到被理解及融入社区。Sally和Serene也想借此机会来提醒其它看护者看护的旅程是不完美和需毅力的，不过在有必要时还是得接受帮助及群主里的支持。通过她们的分享，Sally和Serene 所给予的不仅是指导而是由衷的邀请她们一同以仁慈 来让活出有意义和素质的生命。</p>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/what-caregivers-want-you-to-know/">从看护者的角度看待失智症</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<title>通过互动技术支持看护者</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/supporting-caregivers-through-interactive-technology-play2care-app/</link>
		
		<dc:creator><![CDATA[Admin]]></dc:creator>
		<pubDate>Mon, 08 Jul 2024 01:39:23 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[与失智症共存]]></category>
		<category><![CDATA[失智症看护]]></category>
		<category><![CDATA[Behaviour]]></category>
		<guid isPermaLink="false">https://www.dementiahub.sg/supporting-caregivers-through-interactive-technology-play2care-app/</guid>

					<description><![CDATA[<p>心理卫生学院（IMH）与Taggle合作开发了一款全新的移动应用程序，通过互动游戏提升失智症看护体验。这款用户友好的应用旨在为看护者提供有效的沟通策略，从而更轻松地应对失智症护理中的挑战。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/supporting-caregivers-through-interactive-technology-play2care-app/">通过互动技术支持看护者</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
]]></description>
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									<p><strong>心理卫生学院（IMH）与Taggle合作开发了一款全新的移动应用程序，通过互动游戏提升失智症看护体验。这款用户友好的应用旨在为看护者提供有效的沟通策略，从而更轻松地应对失智症护理中的挑战。</strong></p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">了解失智症</h2>				</div>
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									<p>失智症一般上都被误解为仅会丧失记忆力。 然而，失智症人士也有可能随着病况进展而体现出行为上的改变。 这些改变会对失智症人士及其看护者带来挑战。<br /><br /></p><p>看护者在对失智症没有深入理解的情况下，可能会觉得行为上的改变让他们难以招架。不仅如此，沟通困难及认知能力下降更是难以让失智症人士有效地表达自己及传达他们的需求。正如 心理卫生学院老年精神病学系的高级主管Yao Fengyuan医生所言，这种沟通阻碍多半会为双方带来挫败感及误解。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">Player2Care 应用程序</h2>				</div>
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									<p>这个应用程序能够让看护者沉浸于真实及贴近新加坡环境的模拟场景，例如在熟悉的政府组屋里行动及透过本地美食进行互动等。透过游戏化体验及教学视频，看护者能够有效地尝试运用TANGO 处理方式。</p><p>这个应用程序也装置了迷你游戏，例如“找出差异”及“寻找隐藏的钱包”。这些迷你游戏不仅可以把看护者带入其境，它也可以激发失智症人士的认知能力。</p>								</div>
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					<h4 class="elementor-heading-title elementor-size-default">什么是TANGO？ </h4>				</div>
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									<p>心理卫生学院研究生所研发的沟通策略，TANGO融合了以下五点：</p><ol><li>T 代表温和以待： 透过耐心及积极的肢体语言来安慰及让失智症人士感到安心。</li><li>A 代表肯定：肯定失智症人士的情绪和未满足的需求。</li><li>N 代表避免争辩：避免对抗，改用温和的语气来提示及引导。</li><li>G  代表使用简易的对话：使用熟悉及的词汇及清晰的选择来促进沟通。</li><li>O  代表优化环境：调整环境来增强失智症人士的参与度与独立性。</li></ol>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">用户的反馈 </h2>				</div>
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									<p>在推出Player2Care 应用程序之前, Play2Care在一组看护者的帮助下进行了试点测试。以下是测试的结果：</p><ul><li>100%的参与者的个人Dementia Attitude Scale (DAS)指数有所提升。</li><li>80% 的参与者觉得Player2Care 让他们与失智症人士的互动更加轻松。</li><li>60% 的参与者对失智症的了解有所加深。</li></ul><p> </p><p>心理卫生学院的高级职能治疗师Ong Xin Ling女士强调，Player2Care应用程式有助于看护者对失智症的了解： “传统的心理教育方式是不足够的。Player2Care提供了一个让看护者练习及应用沟通策略的平台。”</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">促进沟通</h2>				</div>
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									<p>Player2Care结合了适合年长者的设计特点，并融入了看护者的反馈，为正在应对失智症护理的家庭提供了宝贵的资源。</p><p>“我们对Player2Care革新失智症看护的潜能是有目共睹的，” Taggle的总裁李先生说到。“把科技和看护策略融合起来，我们期盼能够舒缓看护者的压力，与此同时提升看护者及失智症人士的生活素质。”</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">拥抱创新，提供更好的护理</h2>				</div>
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									<p>Player2Care采用了科技来改善失智看护资源并赋能看护者在看护旅程中更加自信。通过提供看护者实用的工具和见解，它不仅解决了眼前的挑战，还为失智症人士营造了一个更富有同情心和支持性的护理环境。</p><p>今天就下载Player2Care应用程序来迈向更卓越的失智症看护！</p>								</div>
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									<div data-id="b44e503" data-element_type="widget" data-widget_type="text-editor.default"><p><a href="https://play.google.com/store/apps/details?id=com.Immersive.Play2Care&amp;hl=en_US"><strong>下载</strong><strong>Player2Care </strong><strong>（谷歌平台）</strong></a><strong> |</strong> <a href="https://apps.apple.com/sg/app/play2care/id6499314413"><strong>下载</strong><strong>Player2Care </strong><strong>（苹果平台）</strong></a></p></div>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/supporting-caregivers-through-interactive-technology-play2care-app/">通过互动技术支持看护者</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<title>全家同心协力看护失智症人士</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/caring-together-as-a-family-for-a-person-living-with-dementia/</link>
		
		<dc:creator><![CDATA[Peter Cher]]></dc:creator>
		<pubDate>Thu, 28 Mar 2024 10:22:22 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[与失智症共存]]></category>
		<category><![CDATA[失智症看护]]></category>
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					<description><![CDATA[<p>Sarah Low 身兼数职：她是一名训练有素的药剂师、两位十来岁女儿的母亲、妻子、同时也是她患有失智症的母亲的看护者。Sarah 是一位在各种角色之间转换、兼顾不同要务的妇女。她与家人共同合作来看护母亲的当儿也承担着其它的事务。在仅仅一个小时的线上访谈中，Sarah 与 DementiaHub.SG 团队的其一成员分享了自己丰富的看护经验。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/caring-together-as-a-family-for-a-person-living-with-dementia/">全家同心协力看护失智症人士</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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									<p>Sarah Low 身兼多职：她是一名训练有素的药剂师、两位十来岁女儿的母亲、妻子、同时也是她患有失智症母亲的女儿兼看护者。</p><p>Sarah 是一位在各种角色之间转换、兼顾不同要务的妇女。她与家人共同合作来看护母亲的当儿也承担着其它的事务。</p><p>在仅仅一个小时的线上访谈中，Sarah 与 DementiaHub.SG 团队的其一成员分享了自己丰富的看护经验。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">沟通是关键</h2>				</div>
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									<p>在采访 Sarah 时, 她带出了一个关键点：与家人之间的沟通， 例如决策上的讨论、整合个人的时间表及坦诚分享彼此的感受。Sarah 和丈夫也挑起了引导孩子们理解家庭大小事的大梁。这些综合起来就是该家庭一起迈向未来的模式。</p><p>Sarah与一家四口，在其母亲患上早期失智症时，已在海外居住多时。熟知母亲患上失智症后，Sarah与家人在一次的家庭会议中讨论了搬回国来与 Sarah的母亲同住来看护她。通过这次的家庭会议，一家人都达成了共识决定回国来一同看护 Sarah的母亲。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">共同迈向看护之旅</h2>				</div>
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									<p>Sarah的家庭通过开放式的讨论不仅达成了共识，这也让他们全家理解一同与Sarah的母亲踏上失智症旅程的前景。当他们一家四口回国与母亲同住时，他们不但需要适应新的环境所带来的挑战，更是要适应与患有失智症的母亲一起生活。 相同的，母亲也得开始适应与新家庭成员一同生活。</p><p>起初，这个家庭为了适应新生活挣扎了不少。Sarah 坦言说道，一部分的挣扎在于为了让母亲融入成为这个家庭的第五个成员来适应新而有意义和健康的日常生活。但这并非一件易事。在适应新生活安排的过程中，两个女儿对于她们祖母的异常行为感到难以释怀。然而，通过开放式的讨论、交谈、聆听及理解女儿所面对的挑战，Sarah和丈夫让孩子们试着了解祖母异常行为的原因。例如，女儿有时会将祖母的失控行为归咎于自己，并问Sarah她们哪里做错了导致祖母生气。Sarah 和丈夫对她们的疑问做出了回应，并向她们解释失智症对大脑的影响。她们祖母行为上的失调和情绪上的波动都是因失智症而起。祖母记忆的下滑（失智症的其一症状）也解释了她为什么总是把东西放在不同的位置导致自己无法找到这些物品而怀疑这些东西是否被人偷了。</p><p>Sarah 和丈夫也向女儿解释与失智症息息相关的其它病症例如日落症。这类的睡眠周期变化常常会引起失智症人士情绪上的改变。一个人的判断能力、推理能力和做决定的能力在失智症发展的过程中通常会出现恶化的迹象。Sarah和丈夫也向女儿解释Sarah 的母亲正在经历情绪和思维上的改变。这也是造成她们祖母性情大变的原因。重点是，这些变化并非女儿的错。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">每个人所扮演的角色都不同 </h2>				</div>
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									<p>Sarah 也分享了她和丈夫如何与女儿讨论她们在看护母亲时所扮演的角色。在过去几年， 女儿跟父母分享说她们觉得自己没有为祖母做太多的事。但是Sarah和丈夫并不以为然。 女儿实际上成了Sarah和丈夫的“眼睛和耳朵”来确保祖母在家里的安全。这是十分重要的角色。</p><p>Sarah的母亲是一名年长者所以有较高的跌倒风险。女儿可以在家里注意祖母的情况，确保她的安全。除此之外，女儿也能通过技能手机或其他数码仪器在 Sarah 和丈夫不在时在第一时间向他们述说祖母的最新状况。这些都是 Sarah 和丈夫所提醒女儿们所扮演的角色。这也是对她们一直在这方面对祖母的付出。与此同时，他们也向女儿强调不应该“藐视自己的贡献”。</p><p>Sarah 也分享了 丈夫在看护母亲时所挑起的重要角色。Sarah 和 丈夫不但在工作和家庭之间取得平衡，同时也在工作上做出了调整及安排。在最初的三年里，丈夫就已把全职工作转换成兼职工作。之后当 Sarah 开始兼职时，他则将自己的工作性质改回全职。这样的安排让小两口在工作以外有时间来陪伴母亲。此外，丈夫也一直非常积极地参与看护岳母的责任。他不仅直接看护和陪伴岳母，还同时照顾整个家庭。他不但为家人做饭，还确保岳母及所有的家庭成员可以按时一起进餐。他时不时也会抽出时间来与岳母交谈。最重要的是，Sarah 和丈夫在看护母亲时营造了Sarah所提的“看护伙伴关系”。这种协调一致的看护方式也是为了给孩子们树立的榜样。有了这个好榜样，“她们（女儿）也会积极的挑起看护的责任。”</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">一起享受日常生活 </h2>				</div>
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									<p>与家人共处对 Sarah与家人而言是非常重要的。这是让母亲融入家庭生活的其一个方式。就如 Sarah所说：“只要有机会，我与家人总会聚在一起用餐，并一起交谈。” Sarah 还指出，相较于在家里和家人一起按期用餐，她的母亲过去都是一个人吃饭，而且只有在感到饿的时后才吃饭。因此，Sarah与家人对一同用餐的重视不仅确保 Sarah的母亲每天都能与家人共享天伦，还确保了她能够按时用餐，从而照顾她的健康。</p><p>Sarah 的母亲还为一周里的不同日子安排节目，家人也会抽出时间和她一起安排其他的活动。在母亲去日托中心的时候，家人都会准时叫醒她，为她准备好去日托中心。当她从中心回家时，丈夫经常会向她打招呼，帮助她安顿下来，准备好零食，并与她畅谈一天的趣事。</p><p>在其他的日子里，Sarah 或 丈夫会与母亲一起参与母亲所熟悉的活动，例如 Sarah 会用弹吉他来弹奏并与母亲一起唱她最喜欢的歌曲。家人还会在每周带她去一次她最喜欢的咖啡店吃早餐。有了这些日常活动，母亲并有足够的时间与家人共度美好的时光。</p><p>熟悉固定的日程安排使母亲能够有意义地参与其中。</p><p>在一刻的反思，Sarah 坦然地分享她认为家人回到新加坡的原因是希望能够在母亲建在时珍惜与母亲共度地时光，而不是以后才后悔自己没有为她做什么。</p><p>Sarah也强调有这样的想法非比重要。我们应该抓紧机会与那些被诊断患有疾病的至亲共度仅有的时光，就像她的家人爱待她的母亲一样。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">普遍化社会关怀文化</h2>				</div>
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									<p>采访结束之前，Sarah 也分享了她对一个接纳失智症的社会的真挚想法。她修改了“养育一个孩子需要整个村庄的同心协力”的谚语，反之强调“看护年长者和失智症人士需要整个村庄的同心协力。” 这意味着，在这样一个“村庄”里，我们应该对失智症人士存有同理心和耐性。在 Sarah 对这样的一个社会的设想中，主要看护者才不会独自一人承担看护失智症人士的重任，反而会得到家人的支持。社区小组和不同年龄层的人士也可以探访失智症人士并与他们进餐或交流。如此一来，失智症人士及其家属将得到社会更好的支持。这将朝着 Sarah 对打造一个关爱失智症人士的村庄的愿景迈进一步。</p>								</div>
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									<div data-id="b44e503" data-element_type="widget" data-widget_type="text-editor.default"><p><strong>DementiaHub.SG </strong><strong>团队由衷感谢</strong><strong> Sarah </strong><strong>在采访中如此坦诚地分享她与家庭人及患有失智症的母亲的心路历程。</strong></p></div>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">投稿人简介</h2>				</div>
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															<img loading="lazy" decoding="async" width="909" height="1064" src="https://www.dementiahub.sg/wp-content/uploads/2024/03/Sarah-Low.jpg" class="attachment-full size-full wp-image-49179" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2024/03/Sarah-Low.jpg 909w, https://www.dementiahub.sg/wp-content/uploads/2024/03/Sarah-Low-256x300.jpg 256w, https://www.dementiahub.sg/wp-content/uploads/2024/03/Sarah-Low-875x1024.jpg 875w, https://www.dementiahub.sg/wp-content/uploads/2024/03/Sarah-Low-768x899.jpg 768w" sizes="auto, (max-width: 909px) 100vw, 909px" />															</div>
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					<h5 class="elementor-heading-title elementor-size-default">SARAH LOW</h5>				</div>
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									<p>Sarah Low 是一名老年护理专科的执业药剂师，她对姑息治疗有着浓厚的兴趣。她于 2018 年回返新加坡与家人共同照顾被诊断有失智症的母亲。尽管没有家庭帮佣，但他们善用了失智症日托等暂托服务来为母亲提供看护。</p><p>在工作之余，Sarah倡导看护者的自我护理，并通过博客<a href="http://thrivingcaregiversblog.wordpress.com"> thrivingcaregiversblog.wordpress.com </a>来分享心德。</p>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/caring-together-as-a-family-for-a-person-living-with-dementia/">全家同心协力看护失智症人士</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<title>一封致电影制作人的公开函：失智症的刻画</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/an-open-letter-to-filmmakers-on-portrayals-of-dementia/</link>
		
		<dc:creator><![CDATA[Peter Cher]]></dc:creator>
		<pubDate>Thu, 13 Jun 2024 03:04:25 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[失智症与青年]]></category>
		<category><![CDATA[倡导失智症]]></category>
		<category><![CDATA[失智症与电影制作]]></category>
		<category><![CDATA[Emily Ong]]></category>
		<category><![CDATA[新闻]]></category>
		<guid isPermaLink="false">https://www.dementiahub.sg/an-open-letter-to-filmmakers-on-portrayals-of-dementia/</guid>

					<description><![CDATA[<p>失智症自我倡导者 Emily Ong 呼吁在银幕上刻画失智症时应持谨慎态度，维护失智症人士的尊严和自我价值。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/an-open-letter-to-filmmakers-on-portrayals-of-dementia/">一封致电影制作人的公开函：失智症的刻画</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
]]></description>
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						<div class="elementor-element elementor-element-d351a3d elementor-widget elementor-widget-text-editor" data-id="d351a3d" data-element_type="widget" data-e-type="widget" data-widget_type="text-editor.default">
									<div class="wpb_text_column wpb_content_element "><div class="wpb_wrapper"><div class="wpb_text_column wpb_content_element "><div class="wpb_wrapper"><div class="wpb_text_column wpb_content_element "><div class="wpb_wrapper"><p><em>失智症自我倡导者</em><em> Emily Ong </em><em>呼吁在银幕上刻画失智症时应持谨慎态度，维护失智症人士的尊严和自我价值。</em></p></div></div><div class="vc_separator wpb_content_element vc_separator_align_center vc_sep_width_100 vc_sep_pos_align_center vc_separator_no_text vc_sep_color_grey"> </div></div></div></div></div>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">对失智症不正确的刻画所带来的影响</h2>				</div>
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									<p>身为一名失智症人士和自我倡导者，我经常被电影制作人征询有关失智症的内容。</p><p>我最近被征询了对一部短片剧本的意见。该剧本刻画了一名陷入困境的失智症人士：漫无目的地游荡，无法帮助受伤的至亲并且被刻画为“难以应付”。</p>								</div>
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									<p><strong>如今，对失智症的负面刻画比比皆是，这只会</strong><strong>让更多</strong><strong>被诊断为失智症的人士被绝望和恐惧环绕</strong><strong>。</strong></p>								</div>
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									<p>这些不正确的刻画不但对失智症人士不尊重，更使他们受到不适当的对待。</p><p>尽管人们对失智症的兴趣和认识日益剧增，令人失望的是这些主流影片对失智症的刻画带来的破坏比建造更为显著—强化了社会对失智症人士的歧视。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">电影制作人有责任做出知情的决定</h2>				</div>
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									<p>失智症涵盖的症状为之广泛。虽然有些人被诊断为罕见的逐渐退化性失智症，但许多患上其他失智症类型的人士仍然能够独立生活、自理和长久的保留他们的认知功能。</p><p>内容制作人几乎没有任何理由来以夸张与煽情的失智症刻画来创作内容。这种刻画往往把重点放在失智症对患者和家属的负面影响。</p>								</div>
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									<p><strong>身为内容制作人，他们应当持守重大的责任来仔细、谨慎地考虑他们所要对失智症群体表达的意图以及避免对其群体造成深远的影响。</strong></p>								</div>
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									<p>由于患有身心疾病的人士经常被边缘化，所以对他们了解的人少之又少。因此制作人有责任在制作以身心疾病为题材的影片时以精准及建设性的层面着手。</p><p>如有可能，我想带出以下的问题：您所创作的内容是否有助于教育公众或提高公众对失智症的认识？影片的内容是否能够让会众对那些可能无法思考、回应和感受现状的人士更有同理心和包容？您会否把这类负面的情节套牢在自己或您的至亲身上？</p>								</div>
				<div class="elementor-element elementor-element-f42860e elementor-widget elementor-widget-heading" data-id="f42860e" data-element_type="widget" data-e-type="widget" data-widget_type="heading.default">
					<h2 class="elementor-heading-title elementor-size-default">对未来的展望</h2>				</div>
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									<p>市面上有许多以失智症为题材的佳作—描述了失智症人士过着美好、正常的生活。有很多例子叙述了失智症人士不只是为自己而活。他们也能够成就大事并给予其它失智症人士希望及支持。</p><p>如有选择，我希望能够过充实的生活，并尽情的运用自己还仅留着的能力与家人和挚友一起做我喜欢的事情。</p><p>我依然希望不断倡导失智症来让更多的内容制作人和导演创作出维护失智症人士尊严<br />和自我价值的角色及故事情节。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">投稿者简介</h2>				</div>
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															<img loading="lazy" decoding="async" width="320" height="320" src="https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320.png" class="attachment-full size-full wp-image-34726" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320.png 320w, https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320-300x300.png 300w, https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320-150x150.png 150w" sizes="auto, (max-width: 320px) 100vw, 320px" />															</div>
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					<h5 class="elementor-heading-title elementor-size-default">EMILY ONG</h5>				</div>
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									<p>Emily Ong 是一名通过探讨生活经验、学术和积极参与基层活动的培训师、讲员、研讨会主持人和项目开发者。自 2019 年，她一直是新加坡失智症机构承办的 “希望心声” 项目的副导师。Emily 在近期还当选为国际阿尔茨海默症协会 (简称ADI) 的董事会成员，拿下失智症人士的职位。此外，她也担任 国际阿尔茨海默症协会认证团队的全球审查小组和世界卫生组织全球失智症观察站交流平台的小组成员。</p>								</div>
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									<p><strong><span style="text-decoration: underline;"><a href="https://www.facebook.com/people/Living-with-Mild-Cognitive-Impairment-YOD/100063138464018/" target="_blank" rel="nofollow noopener">Facebook</a></span> | <span style="text-decoration: underline;"><a href="https://twitter.com/emilyong67" target="_blank" rel="nofollow noopener">Twitter</a></span></strong></p>								</div>
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									<p>&gt;&gt; 点击来参阅更多<span style="text-decoration: underline;"><strong><a href="https://www.dementiahub.sg/tag/emily-ong/">Emily </a></strong>的博客</span></p>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/an-open-letter-to-filmmakers-on-portrayals-of-dementia/">一封致电影制作人的公开函：失智症的刻画</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<title>爱的力量：在失智症中活出爱</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/the-power-of-love/</link>
		
		<dc:creator><![CDATA[Admin]]></dc:creator>
		<pubDate>Thu, 09 Mar 2023 03:46:59 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[#DESPITEDEMENTIA]]></category>
		<category><![CDATA[我的至亲是失智症人士]]></category>
		<category><![CDATA[我的失智症生活]]></category>
		<guid isPermaLink="false">https://www.dementiahub.sg/the-power-of-love/</guid>

					<description><![CDATA[<p>一位失智症人士与家人学习如何与失智症共存的心路历程。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/the-power-of-love/">爱的力量：在失智症中活出爱</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
]]></description>
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											<a href="https://www.dementiahub.sg/wp-content/uploads/2023/03/Blog-The-Power-of-Love.png" data-elementor-open-lightbox="yes" data-elementor-lightbox-title="Blog The Power of Love" data-e-action-hash="#elementor-action%3Aaction%3Dlightbox%26settings%3DeyJpZCI6MzQ3MjksInVybCI6Imh0dHBzOlwvXC93d3cuZGVtZW50aWFodWIuc2dcL3dwLWNvbnRlbnRcL3VwbG9hZHNcLzIwMjNcLzAzXC9CbG9nLVRoZS1Qb3dlci1vZi1Mb3ZlLnBuZyJ9">
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                    <audio aria-label="音频 爱的力量：在失智症中活出爱"class="wp-audio-shortcode" id="audio-52258-3" preload="metadata" style="width: 100%;" controls="controls"><source type="audio/mpeg" src="https://www.dementiahub.sg/wp-content/uploads/speaker/post-52258.mp3?cb=1731653643.mp3&#038;_=3" /><a href="https://www.dementiahub.sg/wp-content/uploads/speaker/post-52258.mp3?cb=1731653643.mp3">https://www.dementiahub.sg/wp-content/uploads/speaker/post-52258.mp3?cb=1731653643.mp3</a></audio>
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									<p>通过晚餐，我们熟知Katherine Lim 女士和她的女儿 Belinda 和 Babara Seet 的经历。她们是新加坡失智症机构（之前简称ADA）所拍摄的第三部<a href="https://youtu.be/mfwUYynpk8A">《尽管患有失智症》系列宣传视频</a> “爱的力量”的女主角。90 高龄的Katherine 患上失智症已约有 10 年之久，她也是我们自我倡导项目《<a href="https://dementia.org.sg/voices/">希望心声》</a>的毕业生。</p>								</div>
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									<p>在一个凉爽多云的下午，视频摄制小组聚集在 Seet 家的餐桌旁。大家都迫不及待地等着享用那锅在炉子上炖了好几个小时香喷喷的金黄鸡肉咖喱。Katherine 一如既往是个完美的东道主，招待大家坐下来一起享用美食。</p><p>烹调咖喱的准备工作在前一天就开始了。看着 Katherine 负责准备这道美味佳肴并为咖喱混合香料，谁也不会想到她已经与失智症共处了10 年。</p>								</div>
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															<img loading="lazy" decoding="async" width="768" height="1024" src="https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-headshot-768x1024.jpg" class="attachment-large size-large wp-image-52263" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-headshot-768x1024.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-headshot-225x300.jpg 225w, https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-headshot-1152x1536.jpg 1152w, https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-headshot.jpg 1200w" sizes="auto, (max-width: 768px) 100vw, 768px" />															</div>
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									<h2><strong>早期生活</strong></h2><p>Katherine 在一个大家庭中成长，父亲是中国人，母亲是土生华人。由于家庭富裕，家中有仆人、厨师和司机来打理家庭每日所需，因此她在舒适的环境中成长。她的家庭背景使Katherine 精通多种语言：英语、马来语、福建话、广东话、普通话和潮州话。这使她能够与社区居民及各行各业的人交流。</p><p>Katherine 年轻时就嫁给了 Richard Seet。Richard是一位谦逊的教师。结婚后，Katherine 必须适应一个以孩子和日常家务为中心的生活。她充分的利用自己多方面的背景和才华，例如成为家里的指定司机来接送孩子上、下学和参加课外活动等。她也因此被称为“公路女王”。</p>								</div>
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									<h2><strong>面对失智症的爱与牺牲</strong></h2><p>于2011 年，Katherine 被诊断有阿尔茨海默病。这对她与家人是一个极大的打击。同时，他们的父亲被诊断有癌症。他们一家努力的面对这些突如其来的挑战。起初，Katherine 的诊断使她无法继续做一些自己喜欢并熟悉的事情，例如开车出门兜风和做饭。她变得沮丧、消瘦。</p><p>这些挑战让 Katherine 的四位已成年的子女——三女一男——开始商讨如何分担看护父母的责任。他们怀着生命短暂的信念，趁父母还在世时尽量让他们过的开心、充实。Katherine 坚信像她这样的失智症人士需要在自己的能力范围之内继续保持思维活跃并且踊跃参与活动。</p>								</div>
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										<img loading="lazy" decoding="async" width="800" height="522" src="https://www.dementiahub.sg/wp-content/uploads/2023/03/FUNN-Taipei-trip-celebrating-katherine-bday-1024x668.jpg" class="attachment-large size-large wp-image-52261" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2023/03/FUNN-Taipei-trip-celebrating-katherine-bday-1024x668.jpg 1024w, https://www.dementiahub.sg/wp-content/uploads/2023/03/FUNN-Taipei-trip-celebrating-katherine-bday-300x196.jpg 300w, https://www.dementiahub.sg/wp-content/uploads/2023/03/FUNN-Taipei-trip-celebrating-katherine-bday-768x501.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2023/03/FUNN-Taipei-trip-celebrating-katherine-bday-1536x1002.jpg 1536w, https://www.dementiahub.sg/wp-content/uploads/2023/03/FUNN-Taipei-trip-celebrating-katherine-bday.jpg 1584w" sizes="auto, (max-width: 800px) 100vw, 800px" />											<figcaption class="widget-image-caption wp-caption-text">在台北为 Katherine 庆生。</figcaption>
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									<p><em>Katherine</em><em>，</em><em>Belinda </em><em>和</em><em> Babara </em><em>与其他</em> <a href="https://dementia.org.sg/voices/"><em>“希望心声“</em></a><em>的毕业生一起前往台北度过了一段难忘的时间，并到访台湾阿尔兹海默病协会。</em></p>								</div>
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									<p>Katherine 的两位女儿 Belinda 和 Babara 下定决心要让母亲过得充实。Katherine 亲切地称 Belinda 和 Babara 为她的“两位天使”。为了让母亲的日常生活尽可能地维持正常和愉悦，两姐妹一心要决定做出一些牺牲。Belinda 放弃了高薪的讲师工作，转为一名兼职讲师和顾问，并搬到 Katherine 的家里。Babara 则在周末代替 Belinda 来看护母亲，让Belinda有喘息的时间。她们也都接受过心理辅导训练。</p>								</div>
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										<img loading="lazy" decoding="async" width="768" height="576" src="https://www.dementiahub.sg/wp-content/uploads/2023/03/belinda-katherine-VFH-cohort-1-compressed-768x576.jpg" class="attachment-medium_large size-medium_large wp-image-52264" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2023/03/belinda-katherine-VFH-cohort-1-compressed-768x576.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2023/03/belinda-katherine-VFH-cohort-1-compressed-300x225.jpg 300w, https://www.dementiahub.sg/wp-content/uploads/2023/03/belinda-katherine-VFH-cohort-1-compressed-1024x768.jpg 1024w, https://www.dementiahub.sg/wp-content/uploads/2023/03/belinda-katherine-VFH-cohort-1-compressed-1536x1152.jpg 1536w, https://www.dementiahub.sg/wp-content/uploads/2023/03/belinda-katherine-VFH-cohort-1-compressed-2048x1536.jpg 2048w" sizes="auto, (max-width: 768px) 100vw, 768px" />											<figcaption class="widget-image-caption wp-caption-text">Belinda 和 Katherine 是第 1 批 ”希望心声“的毕业生。</figcaption>
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									<p>为了让母亲继续参与各项活动，Belinda 和 Babara 根据她的兴趣制定了一份日常活动时间表。另一个能够提升Katherine的认知的活动是通过学习小学水平的英文、数学和华文的书籍来让 Katherine 维持敏锐的思维。他们也采用了科技，特别在是 Zoom 平台上与《希望心声》同龄的失智症人士交流，并在 iPad 上玩 Katherine 最喜欢的电动游戏。</p><p>尽管 Katherine 患有失智症， Belinda 和 Babara 不畏困难，仍然持守着随遇而安的精神和对生活积极的态度继续往前行。她们在必要时仍然可以依靠 Katherine 获得生活中的慰藉，例如她亲手做的娘惹菜肴以及充满母爱的建议。</p>								</div>
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									<p>回到餐桌上，他们热情洋溢的泰国帮手正在忙碌地来回走动、预备餐具等。Katherine，Belinda 和 Babara 则急切地想与我们和工作人员分享她们所预备的佳肴，并邀请大家放下手中的设备来共享美食。我们被芳香的香料和浓郁的椰汁咖喱香味所环绕。一家人温馨宽带和爱意也同样弥漫开来。</p>								</div>
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												<figure class="wp-caption">
										<img loading="lazy" decoding="async" width="800" height="555" src="https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-setting-table-copy-1024x711.jpg" class="attachment-large size-large wp-image-52262" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-setting-table-copy-1024x711.jpg 1024w, https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-setting-table-copy-300x208.jpg 300w, https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-setting-table-copy-768x533.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-setting-table-copy-1536x1067.jpg 1536w, https://www.dementiahub.sg/wp-content/uploads/2023/03/katherine-setting-table-copy-2048x1422.jpg 2048w" sizes="auto, (max-width: 800px) 100vw, 800px" />											<figcaption class="widget-image-caption wp-caption-text">Katherine 摆放餐具的情景。</figcaption>
										</figure>
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									<p>请观看关于 Katherine、Belinda 和 Babara 的《尽管患有失智症》的视频。</p>								</div>
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		</section>
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									<p><strong><em>本文首发于新加坡失智症电子报 </em></strong><a href="https://dementia.org.sg/wp-content/uploads/2021/03/ADA-VOD-2021-1.pdf"><strong><em>Voice of Dementia</em></strong><strong><em>（第</em></strong><strong><em> 5 </em></strong><strong><em>卷，第</em></strong><strong><em> 1 </em></strong><strong><em>期）</em></strong></a><strong>。</strong></p><p><strong>请点击</strong><a href="https://www.dementiahub.sg/resource-tagsdespitedementia/"><strong>此处</strong></a><strong>来了解有关新加坡失智症机构的更多信息。</strong></p>								</div>
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		</div>
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		</section>
				</div>
		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/the-power-of-love/">爱的力量：在失智症中活出爱</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<title>Rinkoo Ghosh博士: 活出有同理心的弹性人生</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/dr-rinkoo-ghosh-living-an-empathic-resilient-life/</link>
		
		<dc:creator><![CDATA[Admin]]></dc:creator>
		<pubDate>Fri, 01 Apr 2022 01:56:19 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[看护人士]]></category>
		<guid isPermaLink="false">https://www.dementiahub.sg/dr-rinkoo-ghosh-living-an-empathic-resilient-life/</guid>

					<description><![CDATA[<p>Rinkoo Ghosh 博士是她患有失智症的母亲和已故父亲的看护者，为了他们Rinkoo踏上了一段艰辛但宝贵的旅程。在这个博客，她分享自己是如何从挣扎求生转变为茁壮成长的心路历程。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/dr-rinkoo-ghosh-living-an-empathic-resilient-life/">Rinkoo Ghosh博士: 活出有同理心的弹性人生</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
]]></description>
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									<p><strong>Rinkoo Ghosh </strong><strong>博士是她患有失智症的母亲和已故的父亲的看护者，为了他们</strong><strong>Rinkoo</strong><strong>踏上了一段艰辛但宝贵的旅程。在这个博客，她分享自己是如何从挣扎求生转变为茁壮成长的心路历程。</strong></p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default"><b>从谷底到峰顶</b></h2>				</div>
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									<p>我最后一次喂我父亲进食，也是他最后一次住院。误吸性肺炎是新加坡年长者常见的其一病因。一旦食物进入肺部就会产生这种疾病。我父亲的病因是我喂他太多的汤。</p><p>我一直在为这个“巨大且愚蠢的错误”后悔。我花了好几年的时间才与自己和解。医生在父亲入院后的 12 小时后告诉我，父亲能够康复的机会很渺茫。</p><p>一个对看护感到心烦、厌恶、疲惫的我瞬间转变为一位接受一个大手术并在自己骨折的手臂上植入三根金属杆后还坚持为父亲换尿布的女儿。我对医生的回应是：“不，他必须好起来。您必须帮助他度过难关。”</p><p>我知道父亲并不想离世。我对他充满信心，并开始拼命地为他祈祷。感谢上帝的带领，父亲终于康复了。就在那天，我们一同回顾往事，谈论着我是否会给他买他最喜欢的Chiltern 苹果汁。</p><p>但六个小时后，父亲陷入了昏迷状态。我的哥哥从英国赶回来，身为医生的他知道时间已到，决定了提高吗啡剂量，让父亲体面地离世来减轻他的痛苦。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default"><b>应对失智症</b></h2>				</div>
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									<p>我的父亲在世时是名教授。自 2011 年从南洋理工大学退休后，除了肺炎外还患上了其它健康问题。与此同时，他患上了轻微失智症，并经常以污言秽语来攻击人。</p><p>在我看护父亲的期间，却没有人注意到母亲已慢慢陷入抑郁之中。随着父亲一次又一次的大发脾气又一次又一次的去就诊，母亲的情绪变得低落，内心也变得麻木。</p><p>父亲第一次心脏病发时，母亲正在印度参加为期七天的祷告会。这是她每年能够喘息的机会。她并不想留在自己丈夫的身边。她回来时显得沮丧和愤怒交加，并声称父亲夺走了她一生中最重要的祈祷。</p><p>当时我对她的反应感到困惑，同时也很生气。如果我早点参与 C2C 失智症计划，我就能注意到这些先兆体征，为母亲获取她所需要的帮助。同时也能为自己争取的协助和看护。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default"><b>看护者的多重角色</b></h2>				</div>
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									<p>所有看护过至亲的人都知道，看护并不是一种选择，而是一种责任。由于母亲无法振作起来，因此我便承担了看护父亲的重责。我成为了家庭护士、“妻子”、厨师及清洁工。不仅如此，由于我哥哥定居在英国，所以我还必须挑上儿子的角色。我昼夜不停地监测父亲的血氧水平，彻夜不眠，不停地担心他是否能撑过每一个夜晚。在我看护他的七年里，我的人生一直处于斗争、麻木、逃避的状态。</p>								</div>
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									<p>所有看护过至亲的人都知道，看护并不是一种选择，而是一种责任。由于母亲无法振作起来，因此我便承担了看护父亲的重责。我成为了家庭护士、“妻子”、厨师及清洁工。不仅如此，由于我哥哥定居在英国，所以我还必须挑上儿子的角色。我昼夜不停地监测父亲的血氧水平，彻夜不眠，不停地担心他是否能撑过每一个夜晚。在我看护他的七年里，我的人生一直处于斗争、麻木、逃避的状态。</p><p>图片说明：新加坡 Dementia Hub 活出有同理心的弹性人生</p><p>当我的父亲于 2016 年 6 月离世时，母亲完全没有流露出任何情绪。她不知道如何应对父亲的离去，并且拒绝离开家门。她整天坐在电视机前，并开始出现视觉和皮肤问题。</p><p>我知道母亲是下一个我得关注的对象。但在某个程度上我已对此让步。我知道自己再也不能像看护父亲那样看护她。我只活在当下，疲惫不堪，完全迷失了自己并且失去了宝贵的人际关系。</p><p>母亲的抑郁逐渐进展为血管性失智症和阿尔茨海默症。她经常把东西放错地方，一到晚上就发脾气，用她姐姐的名字来称呼我，仿佛忘了一切。</p>								</div>
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									<p>如今我更清楚地意识到为了能够看护母亲，我必须先照顾好自己，关注自己的健康。我需要为自己投入时间，继续我的人生，同时与母亲的人生并行。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default"><b>自我护理的重要性</b></h2>				</div>
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															<img loading="lazy" decoding="async" width="768" height="1024" src="https://www.dementiahub.sg/wp-content/uploads/2022/04/dementia-hub-sg-living-empathic-resilient-life-3.jpeg" class="attachment-full size-full wp-image-52518" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2022/04/dementia-hub-sg-living-empathic-resilient-life-3.jpeg 768w, https://www.dementiahub.sg/wp-content/uploads/2022/04/dementia-hub-sg-living-empathic-resilient-life-3-225x300.jpeg 225w" sizes="auto, (max-width: 768px) 100vw, 768px" />															</div>
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									<p>我聘请了更多的治疗师，为母亲安排了日托，并雇佣了一名出色的帮佣。我开始每天至少休息四次，停下来松口气，摆脱紧迫的日程安排。这是一件很简单的事情，例如走到冰箱拿点零食、打个小盹或者出去散步 30 分钟来呼吸新鲜空气。</p><p>去年我参与了 CAL 所开展的 C2C 失智症计划。本以为自己已经掌握得滴水不漏，但参与这个计划让我意识到自己从未真正的晓得如何应对父母的失智症，以及从未了解失智症的本质。</p><p>C2C计划完全改变了我与母亲的互动——我学会了如何与她建立关系，而不是一直去纠正她的错误。我学会了接受她的现实，与她一同踏上失智症旅程，并珍惜当下。更重要的是，我意识到失智症人士其实并不是小孩子。他们依旧是有自己个性的成年人，尽管身患疾病，他们仍然知道并记得自己是谁。</p><p>在这段看护旅程中，我学到的最重要的功课就是要做好准备，确信事情不一定要完美。我每天对自己说：“<strong>事情就是</strong><strong>如此</strong><strong>。</strong><strong>”</strong></p><p>我开始不在意“别人会怎么想？”而相信“我做的已经做的足够了”，就因为我已跨出勇敢的一步。</p><p>我在人生中找到了平安、成就和成功。我从 CAL 的看护者社区和自己身边的人的肯定中找到了认可。他们告诉我在看护父母方面我做得很好。对我而言这就已经足够了。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default"><b>看护者活出弹性人生至关重要</b></h2>				</div>
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									<p>我想教育其他看护者“弹性”是我们<em>必须</em>具备的一个核心技能——您在看护旅程中的每一个阶段都必须有自我同理心，不要陷入同情疲劳或所谓的“同理心困扰”。不要像我一样试图过上殉道者的生活。这种痛苦是不值得的。</p><p>认识您的弱点，并学会大声说：“嘿，我自己一个人无法应对，我需要帮助。” 来寻求支持。与此同时，为了促进自己的成长和保持生存，您务必照顾身体、智力、情感和精神等方面的能力。</p><p>当您过上有自我同理心的生活时，您才会健康。只有这样，您的至亲和其他人才会开始尊重您。</p><p><em>故事由 </em><em><span style="text-decoration: underline;"><a href="https://www.cal.org.sg/" target="_blank" rel="noopener">Caregivers Alliance Limited</a> </span></em>提供。 </p>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/dr-rinkoo-ghosh-living-an-empathic-resilient-life/">Rinkoo Ghosh博士: 活出有同理心的弹性人生</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<title>我的看护旅程</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/my-caregiving-journey/</link>
		
		<dc:creator><![CDATA[Admin]]></dc:creator>
		<pubDate>Wed, 06 Apr 2022 01:54:51 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[希望之声]]></category>
		<category><![CDATA[看护人士]]></category>
		<category><![CDATA[年轻型失智症]]></category>
		<guid isPermaLink="false">https://www.dementiahub.sg/my-caregiving-journey/</guid>

					<description><![CDATA[<p>身为丈夫Rodney Paglar的看护者，Jacinta与丈夫共同应对失智症的看护旅程中经历了起起伏伏。即便如此，Jacinta还是尽心尽力地看护及支持Rodney确保他过着有意义的生命。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/my-caregiving-journey/">我的看护旅程</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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									<p>身为丈夫Rodney Paglar的看护者，Jacinta与丈夫共同应对失智症的看护旅程中经历了起起伏伏。即便如此，Jacinta还是尽心尽力地看护及支持Rodney确保他过着有意义的生命。他们的故事充满了爱、勇气和毅力。</p><p>Jacinta叙述了Rodney的诊断过程、共同经历的挑战以及他们如何一同跨过这些挑战。</p>								</div>
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									<p>我和我的丈夫Rodney 已经结婚30年了。他是我的挚友、知己及失智症旅途上的伙伴。我们有两个孩子Luke和Timothy 。<br /><br />Timothy自小就患有四肢痉挛性瘫痪与癫痫。 因此，当他出世后，我就决定卸下工作来照顾他，成为一名全职母亲及看护者。Timothy 活到16岁，在2021 年11月去世，当时我和Rodney才50来岁。 <br /><br />我认识的Rodney是幽默、风趣和内向的独特结合体。然而，在Timothy生命的最后一年，我看到Rodney更加封闭，变得更不愿意表达情感。他也把关于Timothy接受姑息治疗时的众多决定交给我处理。我感到自己得独自应对失落和哀伤。尽管当时我无法理解Rodney 突如其来的改变，但我万万也没想到Rodney的转变是因病而起。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">诊断的经历  </h2>				</div>
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									<p>在2019年8 月，Rodney被诊断患有失智症。当时的他仅仅59岁。在此之前，Rodney还在一间私人建筑公司就职。<br /><br />在那段时间，Rodney越来越健忘，并且在阅读、写作甚至言语上开始面对困难。每当他得在上司及同事面前做简报时，他总是会拿病假。不仅如此，他还会把同事的工时记录表带回家，要求我帮他完成，因为他忘了如何写数字或单词。他变得越来越沮丧，并选择不向任何人谈论他的问题，包括身为妻子的我。 <br /><br />直到一次定期体检时，Rodney被转介到国立大学医院神经科学部门进行正式的诊断。在这之前，我与家人都以为Rodney的行为变化是基于轻微中风。我还记得当天的情景。Rodney做了脑部扫描后，我心理焦急地等待报告结果，但却要在他面前表现出勇敢的一面。当报告显示Rodney被诊断有阿兹海默症时，我们都非常震惊。<br /><br />随之而来的是一系列的情绪波动。我们刚搬进新家，而我得再次背负起看护的责任。这次的看护对象换成了我的精神支柱 – 我的丈夫。</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default"><b>加入新加坡失智症机构的大家庭</b> </h2>				</div>
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									<p>2020年初，Rodney进行了腰椎穿刺后，第二次被诊断有阿兹海默症。我们是通过国立脑神经医学院(简称NNI) 才得知新加坡失智症机构及他们的服务。对我来说， 新加坡失智症机构是我们生命里的曙光，带领我们走过这段新的旅程。</p><p>我们加入了新加坡失智症机构的“<a href="https://dementia.org.sg/voices/" target="_blank" rel="noopener">希望心声</a>” （简称 VFH）。在这个项目里，我们遇到了与我们有类似经历的家属。VFH让我们新结识了一群终生好友。这个平台也让我获取更多资讯以更好地照顾Rodney。</p><p>我也是通过这个平台看到Rodney的转变；从极度静默到开怀大笑及与他人交流。看到他变得开朗，这让我放下了心中大石，也让我对这失智症看护之旅的未来满怀希望。　</p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">新冠疫情所带来的挑战 </h2>				</div>
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																<a href="https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-2.jpg" data-elementor-open-lightbox="yes" data-elementor-lightbox-title="dementia-hub-sg-caregiving-journey-2" data-e-action-hash="#elementor-action%3Aaction%3Dlightbox%26settings%3DeyJpZCI6NDg0MjUsInVybCI6Imh0dHBzOlwvXC93d3cuZGVtZW50aWFodWIuc2dcL3dwLWNvbnRlbnRcL3VwbG9hZHNcLzIwMjJcLzA3XC9kZW1lbnRpYS1odWItc2ctY2FyZWdpdmluZy1qb3VybmV5LTIuanBnIn0%3D">
							<img loading="lazy" decoding="async" width="1200" height="1600" src="https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-2.jpg" class="attachment-full size-full wp-image-48425" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-2.jpg 1200w, https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-2-225x300.jpg 225w, https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-2-768x1024.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-2-1152x1536.jpg 1152w" sizes="auto, (max-width: 1200px) 100vw, 1200px" />								</a>
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									<p>2020年新冠疫情的封锁与隔离措施打乱了Rodney的日常作息。他不再能够到户外运动或与家人同享家庭聚会的乐趣。</p><p>让Rodney了解安全距离的规则及时常洗手的必要性变成了一个挑战。Rodney似乎因对水流触碰到手的感觉感到排斥，而尽量避免洗手。</p><p>大多数的时间，他都在帮我做家务、打理我们的园艺空间及学习如何在散步时用手机来拍照。然而，由于失智症的进展，我发现我们需要按照他的需求，不时地改变为他所策划的日常作息。</p><p>如今，Rodney也会因产生幻觉而焦虑。每当他有幻觉及感到焦虑的时候，要让他平静下来并不容易，因为他会把我和儿子当成陌生人。这让他感到害怕。在这种状况下，我们必须告诉自己保持冷静及耐心地来尽量帮助Rodney跨过他的恐惧。</p>								</div>
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				<div class="elementor-element elementor-element-feb8aeb elementor-widget elementor-widget-heading" data-id="feb8aeb" data-element_type="widget" data-e-type="widget" data-widget_type="heading.default">
					<h2 class="elementor-heading-title elementor-size-default">我们一同迈步前行　 </h2>				</div>
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									<p>Rodney不再记得我的名字和许多我们曾经共处的时光。尽管如此，我还是对我们能够一起再次回顾过去和创造更多新的美好回忆而感恩。</p>								</div>
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									<p>有时候，我会用旧照片来唤起他的记忆，并开始制作剪贴簿。目前的焦点是让Rodney能够保持活跃、健康的生活，并尽量让他在我们一起外出时与家人互动。</p>
<p>的确，对我们而言，每一天就像新的一天，有时候我会看到我在1985年初见的那个Rodney！与此同时，我为他不断尝试跨过各种挑战而深感欣慰，尤其是当他克服困难，对自己感到满意及有成就感而面带笑容的时候。</p>
<p>当我感到疲惫时，我会花一些时间来自我照顾和充电。我也发现宣导失智症及分享我的经历对我有疗愈的作用。对我而言，重点是能够与Rodney共度每一天。　</p>								</div>
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																<a href="https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-3.jpg" data-elementor-open-lightbox="yes" data-elementor-lightbox-title="dementia-hub-sg-caregiving-journey-3" data-e-action-hash="#elementor-action%3Aaction%3Dlightbox%26settings%3DeyJpZCI6NDg0MjIsInVybCI6Imh0dHBzOlwvXC93d3cuZGVtZW50aWFodWIuc2dcL3dwLWNvbnRlbnRcL3VwbG9hZHNcLzIwMjJcLzA3XC9kZW1lbnRpYS1odWItc2ctY2FyZWdpdmluZy1qb3VybmV5LTMuanBnIn0%3D">
							<img loading="lazy" decoding="async" width="1300" height="1600" src="https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-3.jpg" class="attachment-full size-full wp-image-48422" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-3.jpg 1300w, https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-3-244x300.jpg 244w, https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-3-832x1024.jpg 832w, https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-3-768x945.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2022/07/dementia-hub-sg-caregiving-journey-3-1248x1536.jpg 1248w" sizes="auto, (max-width: 1300px) 100vw, 1300px" />								</a>
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				<div class="elementor-element elementor-element-d7567d9 elementor-widget elementor-widget-heading" data-id="d7567d9" data-element_type="widget" data-e-type="widget" data-widget_type="heading.default">
					<h2 class="elementor-heading-title elementor-size-default">我的角色　 </h2>				</div>
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									<p>身为一名看护者，我会尽我所能帮助Rodney与失智症共处，继续过着有意义的生活。在他需要我的时候，我都会陪伴着他。　</p>								</div>
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									<p><em>本篇文章最初发表在<a href="https://dementia.org.sg/" target="_blank" rel="noopener">新加坡失智症机构</a>网站上。</em></p>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/my-caregiving-journey/">我的看护旅程</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<item>
		<title>Janet Koh: 看护对我的意义</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/janet-koh-what-care-means-to-me/</link>
		
		<dc:creator><![CDATA[Admin]]></dc:creator>
		<pubDate>Fri, 01 Apr 2022 01:53:18 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[看护人士]]></category>
		<guid isPermaLink="false">https://www.dementiahub.sg/janet-koh-what-care-means-to-me/</guid>

					<description><![CDATA[<p>看护就是永远与至亲同在。2010 年，我在 54 岁时辞去了全职秘书一职来看护我的母亲 Ng Sook Cheng。当年的她已经 76 岁了。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/janet-koh-what-care-means-to-me/">Janet Koh: 看护对我的意义</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
]]></description>
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									<p><strong>看护就是永远与至亲同在。</strong></p><p>2010 年，我在 54 岁时辞去了全职秘书一职来看护我的母亲 Ng Sook Cheng。当年的她已经 76 岁了。在那年早些时候曾经中风。中风使她的活动能力受到了影响，她不得不使用助行器或轮椅来行动。母亲还患有良性阵发性位置性眩晕，这使她容易头晕、昏倒和摔倒。</p><p><strong>看护者就是担起看护的责任。</strong></p><p>2014 年，母亲被确诊患有失智症。我为了应对这个情况，尽我所能迅速学习了关于失智症的知识，尽量为突如其来的挑战做足了预备的工作。我也参与讲座和支持小组，并通过看护服务津贴来上培训课程来装备自己。我选择承担起看护母亲的责任，并且告诉自己，除了我之外，还会有谁愿意挑起这大梁？</p><p><strong>看护就是珍视我的至亲而不是藐视她。</strong></p><p>我开始意识到，无论母亲的行为看起来多么不合理，都归因于失智症对她大脑所产生的影响。久而久之，我学会了关注母亲当下的思想和情绪，而不是将目前的母亲与过去的她相比。失智症隐藏着一个人，我渴望理解并与那个人建立关系。我深信以这种心度来对待母亲能够让她在身患疾病的情况下过上有尊严的生活。在我眼里，她依旧是一位特别的人。</p><p><strong>看护就是不辞辛劳地照顾至亲，纵然这是一项充满压力或对体力有极大要求的任务。</strong></p><p>于2017 年 5 月，母亲经历了严重的中风复发，导致她右侧身体瘫痪。这同时也导致她的失智症严重恶化，需要更加密集的护理。不幸的是，在四个月后我遭遇了一场意外，不得不接受髋部手术。这对我的体力造成了极大的限制，继续看护母亲可能会面临更大的挑战。就在这黑暗的时刻，我通过创新的方式从新得力，例如利用升降机将母亲从床上转移到淋浴马桶椅上洗澡、将母亲转移到老年椅或轮椅上来预防卧床所造成的褥疮。除此之外，我还得帮她更衣、喂她吃饭和帮她换尿布。每当母亲无法入眠时，我都会整夜守在她身边。2017 年 11 月，母亲出现了吞咽食物的困难，并被确诊为吞咽障碍。我一丝不苟地确保她的食物粘稠度维持在正确的范围内，并耐心地给她喂食，直到漫长的一餐结束。</p><p><strong>看护需要关注自我护理的需求，这样一来我就可以反过来照顾好至亲。</strong></p><p>我开始明白关注自己身心健康的重要性。因此，我一直在寻找实用的信息、咨询社区资源、加入支持小组以及定期休息来维持自己的身心健康。这才让我能够继续看护母亲。由于看护者的旅程有时可能是孤独、漫长的，所以我并不忽视照顾自己的必要。</p><p><strong>看护就是享受与至亲共度美好的时光。</strong></p><p>我和母亲的关系仿佛变得成重新认识一般，需要与她建立一段全新的关系。由于失智症人士仍然可以做很多事情，因此我意识到与她共度时光是一件很愉快的事情。我秉持着尊重的态度来看护母亲，就如同我对待任何人一样——将她视为一位拥有丰富生活经历的独特人士。我花了很多时间陪伴母亲，为她提供一个安全、充满爱和稳定的环境来帮助她度过与失智症的搏斗。</p><p>看护并非一件易事，但这对母亲产生了重大的影响。尽管面临着艰巨的困难，我相信作为至亲的看护者很少会后悔共度这段旅程。</p><p><em>故事和照片由</em><em> Janet Koh Hui Kheng </em><em>提供（故事编辑）。</em></p>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/janet-koh-what-care-means-to-me/">Janet Koh: 看护对我的意义</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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		<title>倘若没有我们, 就毫无关乎我们: 一位失智症倡导者的旅程</title>
		<link>https://www.dementiahub.sg/zh-hans/blog/nothing-about-us-without-us-my-journey-as-a-dementia-advocate/</link>
		
		<dc:creator><![CDATA[Admin]]></dc:creator>
		<pubDate>Thu, 24 Jun 2021 01:52:21 +0000</pubDate>
				<category><![CDATA[博客]]></category>
		<category><![CDATA[人士]]></category>
		<category><![CDATA[倡导失智症]]></category>
		<category><![CDATA[Emily Ong]]></category>
		<category><![CDATA[#DESPITEDEMENTIA]]></category>
		<guid isPermaLink="false">https://www.dementiahub.sg/nothing-about-us-without-us-my-journey-as-a-dementia-advocate/</guid>

					<description><![CDATA[<p>Emily Ong 分享了身为一名失智症倡导者的旅程及她如和提升致力在区域性及全国性的阶层来倡导失智症。</p>
<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/nothing-about-us-without-us-my-journey-as-a-dementia-advocate/">倘若没有我们, 就毫无关乎我们: 一位失智症倡导者的旅程</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
]]></description>
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									<p><strong>Emily Ong </strong><strong>分享了身为一名失智症倡导者的旅程及她如和提升致力在区域性及全国性的阶层来倡导失智症。</strong></p><p>我是在与阿尔茨海默病协会 (简称ADA) 的“希望心声”的项目经理 Ruth Wong 的一次讨论中熟知 Kate Swaffer的案例，从而在 2019 年 8 月加入了国际失智症联盟 (简称DAI)，一个为失智症人士所设并由失智症人士管理的全球性组织。该组织的成立是多么令人鼓舞和振奋的一件事。这是对失智症人士的能力和潜能最佳的见证。</p><p>我的第一篇文章是在世界阿尔茨海默病月 #WAM2019内为 国际失智症联盟所撰写的。我在失智症意识月/世界阿尔茨海默病月的第 9 天了上载了“#您好，我是 Emily Ong”的一篇博客。这勇敢的一步，开启了我成为一名失智症倡导者的篇章。</p>								</div>
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				您好，我是 Emily Ong
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于2017 年 6 月（实际日期我已经忘了），我经历了一生中最可怕的事情——我问了自己：“我需要什么材料来做法式吐司呢？”——这是我最擅长做的早餐。我只记得需要面包，以及一柄煎锅。我努力地回想，却什么都记不起来。			</p>
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											<cite class="elementor-blockquote__author">– 摘自&nbsp;<a href="https://dementiaallianceinternational.org/blog/hello-my-name-is-emily-ong"><u>‘#Hello, My Name is Emily Ong’</u></a></cite>
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									<p>从那时开始，我的失智症倡导旅程在 Kate Swaffer 的支持下扬帆远航。Kate Swaffer是国际失智症联盟的联合创始人、前任主席和现任首席执行官。她全程指引着我。对我而言，倡导是通过当事人（失智症人士）的见证及经历来把一个被高度歧视、敷衍的‘透明’病症来带动改变，并为失智症人士争取更好的生活素质。</p><p>我给了自己两年的时间来装备自己成为一名称职的失智症倡导者。我在脸书的页面刊登了我的第一则分享：<a href="https://www.facebook.com/profile.php?id=100063138464018" target="_blank" rel="noopener"> 《<strong>与</strong><strong>轻微认知功能障碍和年轻型失智症</strong><strong> (YOD)</strong><strong>共存》。</strong> </a>内容涵盖了与智症共存是怎样的生活和应对失智症的策略。同时我也分享有关失智症的信息。我接受了与阿尔茨海默病协会共同主持“希望心声” 项目的邀请。紧接着，我与阿尔茨海默病协会共同设计内容并且一起举办了四个学期。我认为让失智症倡导者参与策划和实施，对于实现该计划的目标并鼓励失智症人士和受到失智症影响的人士采取行动至关重要。这也是在 阿尔茨海默病协会内部营造一种具备包容性的工作文化的关键，以“言行一致”的方式来通过实际行动将失智症人士纳入职场。</p><p>在 Kate Swaffer 和 阿尔茨海默病协会亚太区区域主任 DY Surhaya 的支持下，我开始在区域和全球范围内增强了我的倡导行动。我在世界卫生组织的全球失智症观察站知识交流平台焦点小组和 A.D.I. 认证全球审查小组内任职。我也被邀加入 2022 年 A.D.I. 会议的科学计划委员会。此外，我在 2020 A.D.I. 会议上作为主旨演讲为HOPE掀开序幕。这大大的为我的倡导旅途塑造成型。我也因而对《联合国残疾人权利公约》 (简称U.N.C.R.P.D.)及以环境设计来提高生活素质等方面有了更深入的了解。</p>								</div>
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									<p>于 2020 年 9 月 21 日 2020，在世界阿尔茨海默病报告的发布会上，我被Kate Swaffer 对失智友善设计的言辞转化为实施环境设计的实际行动的呼吁深受启发。就在新加坡国立大学客座教授 Habib Chaudhury 参与了 “希望心声” 的活动后表示他对通过环境设计来打造一个失智友善环境深感兴趣。</p><p>透过他的支持，我在5 月份成立了一个小型的全球区域小组——环境与失智症：特殊兴趣小组 (简称DE-SiG)。该小组聚集了来不同学术领域的专业人士和失智症人士来一同商讨如何在社区内实践失智友善设计，并为此提供专业建议和意见来改善生活素质。该小组也探讨如何设计宁静的自然环境、建筑环境和社区环境等课题。并以最大幅度降低有害影响，减少活动和参与限制等方面来反映社区的共识。</p>								</div>
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										<img loading="lazy" decoding="async" width="1448" height="2048" src="https://www.dementiahub.sg/wp-content/uploads/2022/07/World-Alzheimer-Report-2020-Cover-1448x2048-1.jpg" class="attachment-full size-full wp-image-52403" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2022/07/World-Alzheimer-Report-2020-Cover-1448x2048-1.jpg 1448w, https://www.dementiahub.sg/wp-content/uploads/2022/07/World-Alzheimer-Report-2020-Cover-1448x2048-1-212x300.jpg 212w, https://www.dementiahub.sg/wp-content/uploads/2022/07/World-Alzheimer-Report-2020-Cover-1448x2048-1-724x1024.jpg 724w, https://www.dementiahub.sg/wp-content/uploads/2022/07/World-Alzheimer-Report-2020-Cover-1448x2048-1-768x1086.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2022/07/World-Alzheimer-Report-2020-Cover-1448x2048-1-1086x1536.jpg 1086w" sizes="auto, (max-width: 1448px) 100vw, 1448px" />											<figcaption class="widget-image-caption wp-caption-text">2020 年世界阿尔茨海默病报告。</figcaption>
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									<p>通过这些活动和与其他国际范围的内部合作，我对担任 国际失智症联盟董事会成员充满信心并做好了准备。国际失智症联盟是由失智症人士组成来为失智症人士提供服务的国际小组，并为失智症人士的权利和自主权做出表决。它的八名创始人来自美国、加拿大和澳洲。身为董事会的成员之一，我的愿景是双重的：</p><ol><li>通过国际失智症联盟成为亚太区域失智症人士的代言人并更全面的带出亚太区域多文化的独特性——非英化的失智症社区一直以来都被忽视。DE-SiG 的愿景相同与国际失智症联盟的愿景。我们希望引入来自亚太地区的专家一同讨论并探寻如何打造一个文化合宜及需求敏感的环境。</li><li>通过推广本地文化的方式来拓展国际失智症联盟在亚太地区的影响力，使得 国际失智症联盟的支持和资源能够惠及更广范和更多元化的全球社区。本地化的项目如La Kopi和Lim Teh不会影响国际失智症联盟所提供的支持的素质。</li></ol><p> </p><p>我们（国际失智症联盟）相信只要共同努力，我们必能发掘实质计划来与国际社群执行该计划并从其过程中确保达到涉及人权的需求。我们要让众人知道“倘若没有我们， 就毫无关乎我们”的项目是专为失智症人士所设定的。</p>								</div>
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				“永远不要怀疑一个由深思熟虑且忠诚的公民所组成的小组对世界带来的改变。这确实是它唯一所能够成就的。” 			</p>
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											<cite class="elementor-blockquote__author">– Margaret Meade</cite>
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									<p><em>本文首发于</em><a href="https://dementia.org.sg/" target="_blank" rel="noopener"><em>新加坡失智症机构网站</em></a><em>。</em></p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default">投稿者简介</h2>				</div>
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															<img loading="lazy" decoding="async" width="320" height="320" src="https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320.png" class="attachment-full size-full wp-image-34726" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320.png 320w, https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320-300x300.png 300w, https://www.dementiahub.sg/wp-content/uploads/2022/10/Emily-Ong_320x320-150x150.png 150w" sizes="auto, (max-width: 320px) 100vw, 320px" />															</div>
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					<h5 class="elementor-heading-title elementor-size-default">EMILY ONG</h5>				</div>
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									<p>Emily Ong 是一名导师、讲员、工作坊助教和项目开发者。自 2019 年以来她一直是新加坡失智症机构所承办的“希望心声”的同工。Emily 也是国际阿尔茨海默病协会 董事会成员之一，担任了失智症人士的职位。此外，她也担任了国际阿尔茨海默病协会认证团队的全球审查小组和世界卫生组织全球失智症观察站交流平台的小组成员。</p>								</div>
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									<p><strong><span style="text-decoration: underline;"><a href="https://www.facebook.com/people/Living-with-Mild-Cognitive-Impairment-YOD/100063138464018/" target="_blank" rel="nofollow noopener">Facebook</a></span> | <span style="text-decoration: underline;"><a href="https://twitter.com/emilyong67" target="_blank" rel="nofollow noopener">Twitter</a></span></strong></p>								</div>
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									<p>&gt;&gt; 阅读更多<span style="text-decoration: underline;"><strong><a href="https://www.dementiahub.sg/tag/emily-ong/">Emily Ong</a></strong></span>的博客 </p>								</div>
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					<h2 class="elementor-heading-title elementor-size-default"><span style="font-weight: normal">额外资源</span></h2>				</div>
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															<img loading="lazy" decoding="async" width="242" height="300" src="https://www.dementiahub.sg/wp-content/uploads/2023/09/Living-with-Dementia-Voices-of-Asia-242x300.png" class="attachment-medium size-medium wp-image-39790" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2023/09/Living-with-Dementia-Voices-of-Asia-242x300.png 242w, https://www.dementiahub.sg/wp-content/uploads/2023/09/Living-with-Dementia-Voices-of-Asia.png 550w" sizes="auto, (max-width: 242px) 100vw, 242px" />															</div>
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									<p><strong><u>与失智症共处</u></strong><strong><u>——</u></strong><strong><u>亚洲之声</u></strong></p><p>《与失智症共处——亚洲之声》是一个由 13 个亚洲国家的失智症人士及其看护者所撰写的真实故事选集。电子版是由失智症倡导者 Emily Ong 主编。</p><ul><li><a href="https://online.fliphtml5.com/ndtu/calg/#p=1" target="_blank" rel="noopener">电子版</a></li><li><a href="https://www.dementiahub.sg/wp-content/uploads/2023/09/Voices-of-Asia.pdf" target="_blank" rel="noopener">PDF 版</a></li></ul>								</div>
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															<img loading="lazy" decoding="async" width="800" height="434" src="https://www.dementiahub.sg/wp-content/uploads/2021/06/STRiDE-1024x556.jpg" class="attachment-large size-large wp-image-52406" alt="" srcset="https://www.dementiahub.sg/wp-content/uploads/2021/06/STRiDE-1024x556.jpg 1024w, https://www.dementiahub.sg/wp-content/uploads/2021/06/STRiDE-300x163.jpg 300w, https://www.dementiahub.sg/wp-content/uploads/2021/06/STRiDE-768x417.jpg 768w, https://www.dementiahub.sg/wp-content/uploads/2021/06/STRiDE-1536x835.jpg 1536w, https://www.dementiahub.sg/wp-content/uploads/2021/06/STRiDE.jpg 1958w" sizes="auto, (max-width: 800px) 100vw, 800px" />															</div>
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									<p><strong><u>加强对失智症的应对</u></strong></p><p>STRiDE 是一个旨在加强发展中国家失智症研究能力的项目，支持国家失智症计划的制定、融资、规划、实施和评估。</p><ul><li><a href="https://youtu.be/XUHunDbCXP8" target="_blank" rel="noopener">观看 Emily 的视频</a></li><li><a href="https://stridedementia.turtl.co/story/anti-stigma-toolkit/page/1" target="_blank" rel="noopener">阅读更多关于 STRiDE 的信息</a></li></ul>								</div>
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		<p>The post <a href="https://www.dementiahub.sg/zh-hans/blog/nothing-about-us-without-us-my-journey-as-a-dementia-advocate/">倘若没有我们, 就毫无关乎我们: 一位失智症倡导者的旅程</a> appeared first on <a href="https://www.dementiahub.sg/zh-hans/">DementiaHub.SG</a>.</p>
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