The Dark Side of Alzheimer's Research

The “dark side” of the Alzheimer’s disease research machine

The Devastating Legacy of Lies in Alzheimer’s Science (NYT Opinion) [PDF version): as you may have guessed from the title, this article is not all sweetness and light. Any time when we have high stakes, the prospects of glory, and promises of big money, we will also see corruption at even the highest levels. As author Charles Piller recounts in this article, with apologies to Shakespeare, something may well be rotten in the state of Alzheimer’s research. I hope that as he brings more of these scandals to light, we will see better review processes from scholarly publications and government programs that have accepted too much on faith for too long. This is important information for anyone interested in the state of Alzheimer’s research today.

Listening to your feedback!

Thanks to everyone who took the survey about what newsletter features are most useful. If you missed it, the survey remains open for the moment and you can still offer feedback here. In terms of the subjects you want to see most, here are the results:

1. Best practices for care

2. Meaningful stories from the lives of caregivers and people with dementia

3. Tied for 3rd were Research and Videos

4. Tied for 4th were the latest news stories and financial pieces

There weren’t any blow-outs: all of the responses were within a few points of each other. However, I’ll make sure to offer more pieces on caregiver best practices in the coming weeks. To that end, keep reading below to learn about methods for improving communication with our loved ones to create better care.

This week in Care: Communicating with our loved ones — passing messages through the veil of dementia

Language is difficult, really difficult. It can also be sublime. Would we even be human without it — could we be if we didn’t have the word “human”? It suffuses everything we are, every action we take, every grocery list and street sign and set of instructions from Ikea (ok, not sure on the last one).

Language binds us together and allows us to share ourselves and our relationships with others. So what can we do when a terrible disease starts stealing words, ripping pages out of our loved ones’ dictionaries and history books? How do we continue to communicate?

I won’t tell you it can be the same or that we can fix it. You know better. Our loved ones walk away from us one word at a time. But we can walk with them a lot longer and reach them more deeply with communication strategies that take dementia into account and make allowances for the challenges we face in understanding and being understood by a loved one with dementia.

Changing our minds: using the concept of a second language as a new framework for understanding

A story and a thought experiment — Come along with me on some vacation planning I’m doing. I’ll get back to the point soon, but I think this digression will put an important new spin on communicating with a person who lives with dementia.

True story: I’m hoping to go to Greece this year. It’s always been a dream vacation for me, so I have subscribed to Duolingo and started learning Greek. It’s incredibly difficult. So far, in my 76-day unbroken streak of Greek lessons, I haven’t learned the word for bathroom — I do, however, know the words for “architect” and “throne.” Those should come in handy, right? The letters are largely foreign to me, and the ones that look similar usually make different sounds. I’d be embarrassed to try to use my language “skills” with a native speaker. If I’m being honest with myself, it’s a fun effort but I’ll be counting on Google Translate and kind Grecians who speak English for help. Given the language deficit, I wonder:

• How will I find a bathroom?

• How will I find my accommodations?

• What if I get separated from my partner? How would we be reunited?

• Can I cross the street, or will I be run over? The signs make no sense!

• Most importantly, how can I order Greek food that doesn’t have olives in it: YUCK! (That’s right: The Dementia Newsletter doesn’t shy away from polarizing issues like “the olive controversy.”)

I know how I hope to be treated in this case: I hope that people will be kind to a lost foreigner. I hope my winning smile and self-effacing humor will show through and that I will be met by people who can put themselves in my shoes and help graciously. When I say “throne” in distress and point at my groin with a bright red embarrassed face, I hope they will point me toward the bathroom.

Can you see where I’m going with this and the similarities with helping someone who has dementia? When someone is struggling with words and concepts in another language, we put all of our focus and attention into divining their meaning. We focus on body language, the things they’re pointing to, the tone of their voice, and all of the other little markers of non-verbal communication. We do it because we see a vulnerable person who we can help if we can only make out what they mean. Can you take the mindset of helping that poor, struggling tourist who is doing their very best and apply it to working with your loved one? I’m not going to be fluent in Greek this year, but I hope people appreciate that I’m making an effort. Your loved one is making an effort too, so how can you find their meaning and help them?

Now that we’ve got the concept, here are some concrete strategies

• Slow down, and use easy words: if you’re learning a foreign language, you can’t keep up with native speakers right away. But you can start to pick out basic words if they go slowly enough. Use the same principles here.

• Be willing to be patient: sometimes it just takes a bit for the person to find the meaning they’re looking for. Start by listening and allowing the quiet space.

• Avoid “no.” Find ways to flip to “yes.” Instead of “don’t do that” or “you can’t go there,” find positive expressions instead. “You can’t go outside” becomes “Let’s have dinner in the dining room.” “Don’t put that there” becomes “would you please put it here?”

• If you can’t communicate through language, can you learn how to respond to their non-verbal cues? What does their expression tell you? Are they pointing at something, or perhaps staring in a certain direction? Are they shifting in a particular way that could indicate pain or discomfort? If they can’t understand your words, are you able to cue them in a similar way with your gestures?

• Get on their level instead of standing over them. Can you be eye to eye by sitting down or taking a knee? When you can make good eye contact, it’s easier to understand the other person. Moreover, it’s easier for them to feel understood because of your extra effort.

• Be present. Remember that what they’re saying is the most important thing in the world to them in that moment. They may be in pain, or they may be experiencing joy. Can you imagine your attention as a tangible thing, holding them in a hug, listening completely?

• If you have more complex tasks or conversations to tackle, do them in the morning when everyone is fresh.

• Use validation techniques to help them feel heard. Validation is what happens when you accept another person’s thoughts, emotions, and actions and allow them to feel heard and understood. I like to use the “6 levels of validation” used in Dialectical Behavior Theory (DBT). Personally, I call them the 6 methods of validation, because “levels” implies that they build on each other, or that some are better than others. To me, they’re different and separate techniques, and you use what is appropriate to the moment. Regardless of my linguistic nitpicking, here they are:

  • Paying attention: just be there. Give the gift of your full attention.

  • Reflecting back: using the person’s words and phrasing as you respond to show that you’re listening.

  • “Reading minds”: making educated guesses about what the person is thinking or feeling based on how they’re talking and their body language

  • Express understanding: let people know that their emotions, feelings, and actions are something you understand, that they make sense

  • Acknowledge the valid: telling others that you feel most people would respond the same way in a similar situation

  • Radical genuineness: responding from a place of total equality and acceptance. How often do people with dementia face condescension? How often are they talked down to? Radical genuineness is especially effective with people who are vulnerable.

Using techniques like those listed above, along with having a better understanding of your loved one’s situation, can radically improve your communication with your loved one.

Dementia Communication in the News

In keeping with the communication theme this week, I’ve selected some links to share that are related to different aspects of communication that we run into as caregivers.

• Bridging the gap: Dementia communication strategies (Harvard Health): “Communicating with someone who has dementia is a fraught and tricky process, especially because a patient's ability to understand others and express themselves can fluctuate from day to day or even hour to hour, Harvard experts say.”

• The Uses and Abuses of Silence During Family Caregiving (AARP): “Many family caregivers don’t want to put into words the enormity of the sadness they are feeling for fear of upsetting others. Talking less may also seem to them a way of containing and coping with the crisis at hand. Conversely, expressing grief and fear may somehow seem a risk for making bad outcomes manifest.”

• Inside the making of ‘Who Cares: The Caregiving Interview Project’ (DC Theater Arts): “Voices Festival Productions’ moving new work Who Cares: The Caregiver Interview Project shares the impact of caregiving on the care providers themselves… The stories are taken from transcripts of interviews with people from varied walks of life dealing with the challenges of showing up to care for loved ones dealing with memory loss.”

• Imagine having dementia. ‘Virtual’ tour simulates clumsy hands, painful feet, filmy vision (SCMP): “After many decades of serving those with dementia and the staff providing care, I realized that some of the poor care I observed was due to a lack of understanding about what a person with dementia is going through…The caregivers have no reference point; none of them have dementia.”