阿尔茨海默症 · 记忆陪伴公益项目 Alzheimer's · Memory-Companion Project

还记得吗Do You Remember

Do You Remember

姥姥确诊了阿尔茨海默症,早期。趁她还记得——
把她一生的照片做成记忆卡片,把她亲口的讲述存进记忆银行。

My grandmother was diagnosed with Alzheimer's — early stage.
While she still remembers: we turn the photos of her life into memory cards,
and bank her stories in her own voice.

了解这个项目About This Project

这个项目从哪里来Why This Project Exists

从自己的家开始It Started at Home

姥姥确诊了阿尔茨海默症,早期。她的认知能力和常人一样——还能包饺子、斗嘴、赢牌。但也正因为她还在,全家都知道一件事:现在是把她的记忆"存下来"最好的时候。所以这个网站不是为她做的,是和她一起做的。

My grandmother was diagnosed with Alzheimer's — early stage. Her cognition is the same as anyone's: she still makes dumplings, banters, and wins at cards. And precisely because she is still here, our whole family knows one thing: now is the best time to bank her memories. So this website is not built for her — it is built with her.

工具分两层。「记忆卡片」把她一生的照片配上引导语,每周陪她边看边聊——她讲,我们听;「记忆银行」把她的亲口讲述录下来,只存在这台设备里。这些录音是给五年后、十年后的全家人的,也是给她自己的:在更难的日子里,能听见自己清清楚楚讲过的故事。每一次陪伴都被写下来,成为这个项目真实存在的证据。

The tool has two layers. "Memory Cards" pair the photos of her life with prompts — every week we look at them together and talk; she tells, we listen. The "Memory Bank" records her stories in her own voice, kept only on this device. These recordings are for the whole family five or ten years from now, and for herself: on harder days, she can hear the stories she once told clearly, in her own voice. Every visit is written down as evidence that this project truly exists.

科学依据:怀旧疗法The Science: Reminiscence Therapy

怀旧疗法(Reminiscence Therapy)通过照片、音乐、旧物等媒介,引导患者回忆过往生活,是被研究最多的非药物干预之一。多项研究显示,它可能有助于改善情绪、减少焦虑与激越行为、增进患者与家属之间的交流。阿尔茨海默症会首先侵蚀近期记忆,而远期记忆通常保留更久——这正是从"很久以前"切入的原因。

Reminiscence therapy uses photos, music, and familiar objects to guide patients in recalling their past lives. It is among the most-studied non-drug interventions for dementia: research suggests it may help improve mood, reduce anxiety and agitation, and strengthen communication between patients and family. Alzheimer's erodes recent memory first, while long-term memory often lasts much longer — which is exactly why we start from "long ago."

它不是治愈,而是陪伴质量的改善——让患者在被理解而不是被纠正的环境里,多停留一会儿。
It is not a cure, but an improvement in the quality of companionship — letting the patient stay a while longer in an environment of being understood, not corrected.

为什么这件事值得做Why It Matters

阿尔茨海默症及其他类型的痴呆,影响着全球数千万个家庭。多数患者的日常照护由家属承担,而家属往往在最需要帮助的时候,找不到一件"今天就能用"的工具。

Alzheimer's and other dementias affect tens of millions of families worldwide. Most patients are cared for at home by family members — who, at the moment they need help the most, often cannot find a tool they can actually use today.

5500万
全球痴呆症患者(WHO)
People with dementia worldwide (WHO)
60–70%
其中阿尔茨海默症占比
Of which are Alzheimer's
~1000万
中国 estimated 患者数
Estimated patients in China

隐私说明Privacy

本网站不收集、不上传任何数据。所有照片、对话记录和陪伴日志仅保存在这台设备的浏览器本地存储中(localStorage),关闭页面也不会丢失;清除浏览器数据前请先用"导出记录"备份。是否将网站公开、公开到什么程度(真实姓名、正脸照片),由家庭自行决定——工具的价值不依赖公开。

This website collects and uploads nothing. All photos, conversation records, and visit logs live only in this device's browser local storage; closing the page loses nothing. Whether and how much of the site to make public (real names, faces) is entirely the family's choice — the tool's value does not depend on publicity.

姥姥的人生时间线A Life, in Timeline

示例内容,等待替换成真实故事 Demo entries — to be replaced with real stories

一生很长,记忆会迷路。把时间线摆在眼前,是为了让我们记得:她走过很远的路,才来到我们身边。以下年份与故事为占位示例

A life is long, and memory loses its way. Laying the timeline before our eyes is a reminder: she walked a long road to reach us. Demo entries below

记忆卡片Memory Cards

点击任意一张,开始一段对话 Click any card to begin a conversation

每张卡片 = 一张照片 + 一段说明 + 几句引导语。下面的示例卡片展示它长什么样;你们的卡片,从下面「创作一张新卡片」开始——传照片、写说明、写引导语,全部保存在本机。点击任意卡片进入陪伴模式:卡片会把引导语读出来(语音由浏览器生成),你只需坐在她身边,看着照片,听她说。她不回答也没关系——重点不是答案,是坐在一起。

Each card = one photo + a caption + a few prompts. The sample cards below show what they look like; your cards start from "Create a New Card" — upload a photo, write a caption and prompts, all stored locally. Click any card to enter companion mode: the card reads the prompt aloud (voice generated by your browser). You simply sit beside her, look at the photo, and listen. It's fine if she doesn't answer — the point is not the answer, but sitting together.

创作一张新卡片(保存在本机) Create a New Memory Card (stored locally)

跟着向导走五步:照片 → 年份与标题 → 一句话故事 → 选几句引导语 → 预览保存。上面的示例卡片展示成品长什么样——看懂玩法之后,可以全部删掉。 The guide walks you through five steps: photo → year & title → a one-line story → pick a few prompts → preview & save. The sample cards above show what the finished card looks like — once they have shown you how it works, you can delete them all.

快速模式:直接填写所有字段Quick mode: fill in all fields directly

十问The Ten Questions

不用等照片,今晚就能开始的十个问题 No photos needed — ten questions to start with tonight

从最好吃的一顿饭开始,到给年轻时的自己一句话结束,由浅入深。点「开始这一题」进入讲述模式:答完一题,网站把她讲过的话整理成历史回顾,并根据她刚才说的,提议下一个问题。可以朗读、可以录音、会记进陪伴记录。一题一题来,不着急。

From the best meal of her life to a line for her younger self — light to deep. Tap "Start This Question" to enter Story Mode: after each answer, the site gathers everything she has told into a running review, and proposes the next question based on what she just said. Read aloud, record, and it all goes into the Visit Log. One question at a time — no rush.

记忆银行Memory Bank

趁她还记得,把她的声音存下来 Banking her voice while she can still tell

记忆银行存的是姥姥亲口讲述的录音和视频。进入任意一张记忆卡片的陪伴模式,点「录下她的讲述」——她对着照片讲故事,讲完一键存进这台设备(不联网、不上传);也可以把已有的录音、视频直接上传到这里。这些声音是给五年后、十年后的全家人的;也是给她自己的:在更难的日子里,能听见自己清清楚楚讲过的故事。

The Memory Bank stores recordings and videos of her own voice. Enter companion mode on any memory card and tap "Record Her Story" — she tells the story behind the photo, and one tap saves it on this device, no network, no upload. You can also upload audio and video you already have. These voices are for the whole family five or ten years from now; and for herself: on harder days, she can hear the stories she once told clearly, in her own voice.

没有数量目标,真话才算数。先从她最愿意讲的那些年开始。第一次录音前浏览器会请求麦克风权限,选「允许」即可。

No quota — only true stories count. Start with the years she most loves to talk about. The browser will ask for microphone permission the first time; choose "Allow."

0
已保存的讲述
Stories banked
常见格式均可,只存本机、不上传Common formats, stored locally only

陪伴记录Visit Log

每一次陪伴,都算数 Every visit counts

在陪伴模式里点"结束并记录",会在这里留下一条日志:日期、看了哪张卡片、她的反应。日志同样只存在本机,可以随时导出备份。这些记录既是给全家看的交接信息,也是这个项目"真实发生"的痕迹。

Click "End & Record" in companion mode to leave an entry here: date, which card, how she responded. Logs live only on this device and can be exported anytime. They serve as handover notes for the family — and as traces that this project is really happening.

0
累计陪伴次数
Total visits
—
最近一次
Last visit
0
坚持天数
Days of persistence

给看护者的一页纸A One-Page Guide for Caregivers

姥姥处于早期,认知能力和常人一样——前四条写给"现在":怎么和她一起把日子过得饱满;后两条写给"无论走到哪一步"。整理自公开的循证照护资料(Alzheimer's Association、NIH 等),中英文对照,方便全家使用。

My grandmother is in the early stage — her cognition is the same as anyone's. The first four tips are for "now": how to live fully alongside her; the last two are for "whatever comes next." Distilled from publicly available evidence-based resources (Alzheimer's Association, NIH), bilingual for the whole family.

进一步了解Learn More

免责声明:本站内容为公益性质的科普与陪伴工具,不构成医疗建议。患者的诊疗与用药请遵医嘱。

Disclaimer: this site is a non-commercial educational and companionship tool. It is not medical advice. Please follow your physician's guidance for diagnosis, treatment, and medication.

试着这样问她 · 一次只问一句,问完就等
Try asking like this · one question at a time, then wait
讲述模式Story Mode