I know from personal experience that telecommunicating with a loved one who has Alzheimer’s disease can be frustrating and emotional.
我也知道，对于我的祖母患有这种神经退行性疾病的祖母来说，这对我来说很困难。
2年前，当我的祖母被诊断出患有阿尔茨海默氏病时，我在记忆护理机构工作。在那里，我亲眼目睹了祖母病的轨迹。
Through training, trial, and error, I also learned effective techniques for communicating with people in various stages of the disease.
Communicating in person with someone who has Alzheimer’s disease has its challenges, but virtual communication? That’s another story.
随着我奶奶的疾病的发展，电话上的交谈变得更加僵硬和困难。由于大流行，电话和视频通话现在是我们唯一的沟通形式。
很明显，我必须学习一些虚拟沟通的新技术，以保持我们的聊天。
I knew that the first step to easier video chatting with my grandma was to understand what was causing her difficulties in the first place.
一个lzheimer’s diseaseis much more than memory loss. It’s believed to account for60％至80％of cases ofdementia.
它也是一种神经退行性疾病，具有各种症状，包括视觉感知变化。最重要的是，它通常涉及解决问题，说话，写作，取向以及其他熟悉的任务的困难。
所有这些症状意味着对于患有阿尔茨海默氏症的人来说，通过电话或视频交谈可能会迷失方向。他们不能再依靠非语言提示来帮助他们进行交流。
They may not even understand that they can interact with the screen or that it’syou首先在屏幕上。
Kari Burch, OTD, an occupational therapist at记忆护理家庭解决方案, has been providing telehealth to people with Alzheimer’s since the beginning of the pandemic.
根据伯奇（Burch）的说法，有一些特定的症状使电信具有挑战性。这些包括：
- 降低语言处理技能
- visual-perceptual changes
- 一般而言，处理时间较慢
- 减少耐心和增加的烦躁
- 迷失方向和混乱
- difficulty navigating technology
“If it’s difficult to comprehend what you’re saying, it’s difficult to interact and answer questions appropriately,” Burch says.
她补充说，在屏幕上感知某人以及滞后时间或乱七八糟的声音等技术问题可能会使虚拟互动变得更加复杂。
祖母患有痴呆症的职业治疗师Andrea Bennett，OTD，他指出，现代技术与记忆丧失相结合可能是一场完美的风暴。
“Most individuals who currently have dementia did not grow up with the modern technology we’re used to in our daily lives, so just the computer or phone itself may be a foreign concept to them,” she says.
结合记忆丧失的挫败感和混乱，整个体验可能特别具有挑战性。
Due to the pandemic, it’s Facetime with my grandma for the foreseeable future. In the beginning, it was rough.
我们要说的话了，有尴尬的沉默。我会问她关于她的一天的问题，因为她不记得，她无法回答。她对我身后的画感到困惑。有时我会打电话，她还在睡觉。
我本人是职业治疗师，并在记忆护理机构工作。尽管我的专业经验，我还了解到虚拟沟通增加了一层全新的困难层。
在过去的7个月中，我调整了沟通技术，以便为我们俩进行更舒适，有效和愉快的对话。
1.找到合适的一天
The first step to easier telecommunication with someone who has Alzheimer’s disease is to call at the right time of day. That’s when your loved one is rested and most alert.
一个ccording to the阿尔茨海默氏症协会, Alzheimer’s disease affects the sleep-wake cycle. I’ve noticed this with my grandma, and I definitely noticed this when I worked at a memory care facility.
Changes include:
- sleeping longer
- 晚上睡觉困难
- 白天小睡
- drowsiness during the day
科学家不知道为什么会发生这种情况，但认为这是由于阿尔茨海默氏症与大脑相关的变化所致。
My grandma tends to get out of bed late in the day, around 11 a.m. or noon. She is most alert in the early afternoon, so this is when I call. Since she lives in assisted living, I also avoid calling at mealtimes or when there are group activities.
与其试图改变亲人的睡眠周期或时间表，不如认识其疾病的影响并与他们合作。
Know that finding the best time of day to call might take some trial and error, and it might change as their disease progresses. Talking to caregivers or keeping a calendar of symptoms can help you find the best time to call.
2. Avoid calling after sunset
Everyone experiences Alzheimer’s differently. While there are no hard and fast rules, you might find it helpful to avoid calling after sunset.
这是由于一种称为日落的现象，其特征是晚上行为变化。这些变化包括增加搅拌，混乱，攻击性和ir妄。
Bennett将其与漫长而繁忙的工作一天后的感觉进行了比较。
“A person with dementia might put a lot of energy into their day trying to [orient themselves], or how to complete tasks we take for granted, like eating, moving around, and getting dressed,” she says. “When your brain isn’t working at its best, all these tasks take a lot more effort and can tire one out more easily.”
Not everyone with Alzheimer’s disease experiences sundowning. If your loved one does, call in the morning or early afternoon when they might feel more oriented.
There are also strategies to减少日落.
3.简化您的语言
It’s easier said than done, but one of the best things you can do to aid communication is simplifying your language.
一个ccording to Bennett, “Usually we add a lot of fluff and storytelling to our main point, but individuals with dementia might get lost in all that fluff.”
Try using as few words as possible with simple, common phrases. Cut out modifiers and shorten your sentences. Bennett even recommends pairing visual supports like pictures or props over video chat to get your point across.
I’ve found that avoiding open-ended questions can help.
I ask yes or no questions or give two options. This can help prevent overwhelm and limit the cognitive resources required to communicate, saving energy for the rest of the conversation.
Do say…
- “Hi, Grandma. I have something to tell you. It’s important. (Pause) I got a new job!”
不要说…
- “You know how I was working at that one place, and then I started looking for a new job because I wanted to move? Well, I got a few interviews and now I’m working at a new office.”
4.缓慢的路程
Slowing down is another important change you can make to the way you speak. This is especially true over phone or video when you might face connectivity issues or lag.
I can vouch that this will feel awkward at first, but the benefits can be profound.
伯奇说：“让您的演讲缓慢而刻意。”“不要说话只是为了填补空间。”
It feels unnatural to sit in silence after saying something, but what might feel to me like an awkward silence is actually an important tool.
因为患有阿尔茨海默氏症的人的处理时间较慢，所以他们需要这种沉默来理解刚才所说的话。这也使他们有机会制定他们的回应。
经过slowing down and incorporating more conscious pauses in our conversations, I’ve noticed that my grandma speaks up more.
5. Incorporate gestures
Communication isn’t just verbal. Nonverbal communication tactics like gesture and touch are also important, especially for people with Alzheimer’s.
一个2015年研究得出结论，诸如指向对象的代表性手势有助于补偿语音缺陷。
在电话里说话的时候,我们失去了t的能力o gesture. Our conversations may suffer as a result. Try chatting over video and adding in gestures to your conversations.
Burch recommends gestures like:
- waving
- giving a thumbs-up
- 给出“确定”标志
- “talking” with your hands
- facial expressiveness
- pointing to objects you’re talking about
- using fingers to list things (like first, second, and third)
- indicating size with the distance between your fingers or hands
Burch offers an example. Instead of saying, “Thank you so much, that means so very much to me,” you could say, “Thank you,” place your hand on your heart, and offer a meaningful smile.
这不仅可以帮助您所爱的人理解您要说的话，而且您可以通过看到自己的手势来更好地理解他们。
If they seem at a loss for words, remind them that they can point to an object and you’ll be able to see them do that through the screen.
6.专注于当下
谈论过去是一种自然的对话反射，但这对患有阿尔茨海默氏病的人面临着明显的挑战。
While everyone is different, memory loss in Alzheimer’s disease does follow a pattern.
一个ccording to the阿尔茨海默氏症协会, short-term memory loss of newly learned information is a feature of early Alzheimer’s. As the disease progresses, long-term memories such as important past events, dates, and relationships may be affected too.
随着我奶奶的疾病的发展，我注意到，如果我问她那天她做了什么或午餐吃了什么，她会说“我不知道”。这通常导致她变得不舒服和困惑。
I knew that I had to change our conversation topics.
现在，我尝试着眼于当下。我将描述我的周围环境，并请她形容她的环境。我告诉她我在哪里的天气，请她看着她的窗户，告诉我那里的天气。
专注于感官体验，例如天气，穿着的衣服，即使您感到寒冷或感冒也有助于保持对话。
7. Talk about the distant past
Memory loss may be a central feature of Alzheimer’s disease, but it’s still possible to talk about the past.
与其询问最近可能会失去短期记忆的事件，不如着重于很久以前的事件。即使是阿尔茨海默氏症高级阶段的人们也可能从小就拥有完全完整的记忆。
我的奶奶可能不记得她吃了午饭的东西，但她记得自己的婚礼，她还记得我父亲的童年滑稽动作。
Burch points out that if it’s a shared memory, it doesn’t necessarily matter if your loved one remembers.
“It will be nice for them to hear about how muchyouenjoy remembering it,” she says.
Burch gives examples, like talking about the apple pie your loved one made that you enjoyed so much, or how hard she worked as a lawyer and how that inspired you.
“This may spark some memories or pride that will be enjoyable to talk about together,” she says.
8.吸引他们的感官
一个
回忆使用言语和感官提示，例如照片，气味，气味或质地来刺激记忆。可能无法通过Zoom进行完整的感官回忆会议，但是仍然有一些吸引感官的方法。
Sharing photos can spark memories and conversation.
我为祖母打印照片，然后邮寄给她。我还为她做了一本摄影书，每张照片下方都有描述。浏览这些视频聊天是混合正常对话的一种有趣方式。
Music is another great tool, especially if your loved one enjoyed a specific genre, artist, or song in the past.
研究支持这一点。一个2018 systematic review发现音乐可以改善阿尔茨海默氏症患者的记忆缺陷，还有2015 systematic reviewfound that music can reduce anxiety for people with dementia.
有趣的是，我已经看到了从事记忆护理设施工作的音乐的影响。一旦我扮演弗兰克·辛纳屈（Frank Sinatra），那些完全不受欢迎的人就会振作起来。他们经常会开始唱歌和微笑。
Burch建议您以您所爱的人非常了解的共享歌曲开始取消您的呼吸，尤其是十几岁或20多岁的音乐。
On the other hand, while sensory experiences can definitely enhance a video call, they can also create added confusion.
使用纯色缩放背景或从安静，光线充足的地方进行呼叫，并具有良好的互联网连接都可以减少干扰。
9.输入您所爱的人的现实
在记忆护理设施中工作时我提供的最好的建议是，与患有痴呆症的人交流时，您需要输入他们的现实.
我没有纠正奶奶，而是暂停了我的怀疑。如果她用错误的名称或关系打电话给我，我将其删除。如果她问同样的问题十次，我每次都冷静地回答。
It helps me to remember that if my grandma is asking a question for what seems like the millionth time to me, it is actually the “first time” to her. I put myself in her shoes and go with it.
You may also notice that your loved one doesn’t remember their spouse passed away, or other tragic events from the past. Don’t correct them.
I know this can be painful and emotional, especially if that person was your parent or grandparent. But reminding your loved one of their deceased spouse will force them to go through the grief all over again.
贝内特说：“没有人喜欢被告知他们错了。”“Remember that the goal of connecting with your loved one isn’t to get them to remember who you are… a positive interaction is much more pleasant than reminding someone over and over again that they are wrong, to the point of frustration on both ends.”
Despite the challenges, communicating with someone who has Alzheimer’s disease can still be joyful. Unlocking a memory or calling on a particularly good day can almost feel like magic.
有了这些技巧，一点点的实验和很多优雅，就有可能与拥有老年痴呆症的亲人进行有意义的虚拟互动。
Sarah Bence是职业治疗师（OTR/L）和自由作家，主要关注健康，健康和旅行主题。她的写作可以在商业内部人士，内部人士，孤独的星球，福托尔的旅行等中看到。她还写了关于无麸质的，腹腔安全的旅行EndlessDistances.com.