Guide: Talking to someone with dementia: Yikes! What now?

Photo by bloomsberries

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When the conversation takes a turn…

When you’re spending time with someone living with the symptoms of dementia, there are likely to be moments in a conversation when you think “Yikes! How did we get here?”

The secret is to not panic.

Stay calm and relaxed (and be sure that your body language and tone remain calm and relaxed, too).

Take a moment and breathe.

One of my colleagues walks around with a cup of water; when she encounters a difficult situation, she takes a sip. That brief moment often enough of a break to let her figure out what to do next.

You know your loved one; for the most part, just trust your instincts on how to react. But I’m including a list of suggestions for various situations that may arise anyway. I hope that these help you and, if you’ve had this experience and have anything to add (or dispute!), please share with us in the comments section.

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Some potential obstacles and how to overcome them

• Thinks she’s in a different place or time

This one’s pretty easy: just roll with it. Don’t correct; she likely won’t suddenly realize where she is (or whatever the confusion is). Instead, she’ll be upset that you’re questioning her reality.

And there’s no reason to do so.

Communication is about so much more than dotting your “i”s and crossing your “t”s; getting caught up in the details of your loved one’s background assumptions is usually counterproductive.

Your dad thinks you’re spending time with him at his home in Michigan, circa 1974, when in actuality you’re in North Carolina in 2012? Fine. Just go from there. Oftentimes the things that people want to share aren’t tied to the time or place anyway.

To summarize: don’t correct most mistakes; in particular, you should almost always let go of the ones regarding time or place.

• Mistakes you for someone else

This is sometimes an extension of the above example, “Thinks she’s in a different place or time.”

So your maybe your mom thinks that you’re her mother. Okay. This can be uncomfortable (even more so if, say, your father thinks you’re his wife). But it’s usually not a huge problem, because it’s usually not a big impediment to communication.

By the way, this tends to happen in mid-stage dementia and later.

Sometimes it’s not important: much like when someone thinks she’s in a different time of place than she actually is, who precisely she’s talking to may not matter as much as the communication itself. And if she mistakes you for someone she loves and who loves her then you can take comfort in the knowledge that she recognizes something essential about you; she’s just not able to fully make the connection.

Other times, such as when revisiting painful memories (perhaps apologizing or asking forgiveness from a specific individual), it can seem to matter very much whether you are who she thinks you are.

This is something that is intensely personal, and people handle in different ways. I, myself, have not been faced with this and can only speculate on how I’d react, but the advice that I’ve heard most often is to allow your loved one to think you are whomever she believes you to be…then listen.

Often, towards the end of life, people have a lot of unresolved emotions that they want to work through. If you can do anything to help your loved one find comfort and peace, try to see it as an opportunity and just encourage the expression. Hopefully it will help bring her some resolution.

• Forgets who you are

There are other times when your loved one might be entirely unable to recognize you, forgetting who you are or even that she knows you at all.

If this is a recurring problem, try to begin each visit by approaching her from the front, putting yourself on her eye level and meeting her eyes, perhaps touching her shoulder, hand, or arm, and explaining, calmly and clearly, who you are. “Hi, Momma! I’m Jennie Lynn, your daughter. I came to visit you, Mom.”

The hardest part of this is usually keeping yourself from expressing hurt feelings while you’re there. If you can remain calm and relaxed, your loved one will often mirror your mood. This can enable conversations and communication even if your loved one doesn’t know who you are.

• Repeated questions

I’m familiar with 2 types of repeated questions: the ones that have to do with schedule (“When are we having dinner?” 4 minutes later: “Is it getting close to dinner time?” 12 minutes: “I’m sure hungry; is it time for dinner yet?”) and the ones to do with conversation.

Schedule

A lot of schedule-related questions stem from the desire to not miss something that your loved one’s looking forward to doing. This can manifest as preparing for an event very early (for example, putting on a coat and waiting in the hallway for a shopping trip you’ve planned in 2 hours), as general restlessness or agitation, and as repeated questions.

How to handle repeated questions

One way to handle repeated questions is to repeatedly answer them. This, however, can drive you a little crazy. So here are some alternatives:

• First, determine if the repeated question is a hint that something’s wrong. Asking about dinner may mean that your loved one is hungry or thirsty; asking about shopping could mean that she’s cold. Perhaps she needs to use the restroom. Go through a mental checklist of wellness items and make sure that her basic needs are met and that she’s comfortable.
• Write down a schedule (for the day or for the morning, depending on cognitive ability) and place it by a (preferably analog) clock. If necessary, illustrate what the clock will look like when it’s time for each activity.
• Write a schedule on a sheet of paper that your loved one can keep with him or her
• If there are certain events that seem to be triggers (example: dinner) write a post-it note somewhere that your loved one can see it that says something like “dinner time is at 6:15 PM!”
• Redirect her. This is especially effective if it’s a recurring question (example: asking about dinner every single day). When “questions time” approaches, engage her in an activity
• If you can, anticipate the question and answer/explain it in advance. “Oooh, dinner’s going to be in an hour, I can’t wait!”
• Above all, try not to lose your patience

Conversational

When I visit with my grandfather, he’ll ask me about my work. It’s something we’ve long talked about, as he’s always taken an interest in my schooling and then professional development. It’s a way that we connect, and I love that he’s interested in it.

But sometimes, now, even while I’m answering his earlier question about my job he’ll politely interject to ask me about my job. He might ask me 6 or 8 times in a single visit. Every time, I answer him.

Things I don’t do:

• say “You’ve asked me a million times already!” and get upset
• grow increasingly frustrated each time I answer
• “dumb-down” my answers

What I do instead:

• answer each time as though it’s the first time he’s asked me
• if I’m tired of talking about the same thing, I’ll take the question in a different direction each time he asks. For example, I might initially talk about projects, then colleagues, then professional goals, then a specific meeting…
• continue to engage conversationally, pausing to allow for questions and, when relevant, asking for his advice
• appreciate that this shows how deeply he cares about me, that he’s so interested in what I’m up to
• remain calm and cheerful

• Non-responsive/doesn’t attend to you

First, check to be sure that she’s comfortable (not cold, not thirsty, etc); she may be distracted by something she’s unable to express.

You can attempt to engage your loved one using different senses. For example, if talking to her isn’t working and she’s ignoring you, try: showing your mom photos she’d find interesting (from her past, perhaps, or of things that she likes); listening to music; walking together (perhaps outside to smell the flowers. “Walking” can, of course, involve wheelchairs or walkers); encouraging her to play an instrument (if that’s something that she used to do) or do something else familiar with her hands; singing; sharing a snack.

Remember that communication needn’t involve words, and that sometimes just spending time together can be beneficial to you both.

• Wandering thoughts

Sometimes your loved one will initially be engaged with you, but then begins to drift. Assuming that she’s not uncomfortable or in pain (check first), it could be for any number of reasons. Perhaps she lost track of the conversation because it was moving too fast for her to keep up. If this is the case, briefly (but not hurriedly) summarize what you’re talking about in basic terms; attempt to bring her back in.

Overall, you can try to simplify the conversation a bit. Don’t talk down to her, but present one concept at a time. Openly ask for her opinion so she doesn’t feel excluded. Alternately, maybe she’s distracted. Asking what she’s thinking about can help. Often, you can shift the conversation to the thing that interests her. Perhaps it’s birds playing outside the window: you can sit together and talk about them, enjoying one-another’s company.

• Agitation or irritability

Step one: check to be sure that your loved one is safe and comfortable. You should have a mental checklist, something like “In pain? Dehydrated? Hungry? Cold or hot? Resting in an awkward position? Tired? Needs to use the restroom? Sore? Overstimulated…?”  A lot of the time, agitation is the result of attempting to communicate that something’s wrong but being unable to enunciate the problem.

Ask what’s wrong or if she’s upset.

Assuming that everything is alright, immediately attempt to redirect your loved one. Shift your attention to another topic, move to another (perhaps quieter) location, play soothing music…do whatever you can think of to calm her down.

Take note of the time of day and what was happening (including the topic(s) you were discussing) at the time she became agitated. If it consistently happens at the same time of day, it could be “Sundowning” (also known as “late-day confusion”). This is something to discuss with her doctor. If it happens when certain subjects come up in conversation, make a point of avoiding them. In general, you want to attempt to pinpoint the cause of the agitation and then reduce or eliminate it.

• Forgets major life events

If the life event is  a painful one, it’s okay to lie (or at least to avoid the truth). For example, if your father asks about your deceased mother, it could be cruel to force him into grieving all over again by telling him the truth…just to have him forget it again tomorrow and go through the same cycle. That kind of honesty does more harm than good. If possible, redirect your loved one to a different activity or topic. An answer like “she’s out for a bit” may be much kinder than explaining the truth.

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This is part 4 of our 5-part guide, Talking to Someone with Dementia

• Intro
• Your approach
• What to say
• Yikes! What now? (current page)
• How to leave (coming soon!)

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← What to say                                                                     How to leave →
(coming soon!)

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No Medical Advice

Information and other content included in this Site is for general informational and educational purposes only and is not meant to be a substitute for the advice provided by a professional health care provider. You may not use or rely on any information contained on the Site for diagnosing a health or medical problem or disease. You should always consult a professional health care provider regarding any health or medical condition, prevention, or treatment. Do not delay or disregard seeking professional medical advice on account of something you have read on MySimpleC.com.

Do not consider content submitted by MySimpleC users as medical advice. The opinions expressed in MySimpleC user submissions are solely those of the user, who may or may not have medical or scientific training. Those opinions do not represent the opinions of SimpleC. In the event user submissions contain information about treatments or uses of drug products, be aware that such treatments and uses may not be approved by the U.S. Food and Drug Administration. SimpleC does not endorse any specific product, service, or treatment.

Guide: Talking to someone with dementia: What to say

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Photo by donireewalker

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What to say

We touched on spoken communication in Communication tips: verbal, but let’s simplify that a bit.

You know your loved one, you probably know what she likes to talk about, what she doesn’t care about, what she prefers to avoid discussing.

Some helpful things we’ve found help conversations go smoothly:

• Reminiscing can be a great way to connect

• Don’t quiz.
  • This means, don’t ask “Do you remember when…?” questions.
  • What if she doesn’t remember? It can be quite embarrassing to realize you’ve forgotten moments that were once significant. You don’t want to unintentionally shame someone.
  • Even if they’re well-intended (they’re a natural part of many conversations), “Don’t you remember…?” questions can put people on the defensive, cause them to withdraw, or encourage lying to cover up the memory lapse.

• Alternatives to “Remember when…?” questions
  • “I was just thinking about that time…”
  • “You once told me that you moved to New York when you were seventeen…”
  • “Didn’t you used to love horses when you were little?” (bringing up a broad topic can be “safer” than trying to get to a specific story)

Guide: Talking to someone with dementia: Your approach

Photo by edenpictures

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How to approach

Before you can begin a conversation, you have to approach the person. This is something we may not normally give much thought to. With people living with dementia, though, the approach is critical to the subsequent interaction.

This is when you’re going to start with using your nonverbal communication skills.

It’s also potentially going to be the most difficult part of the exchange. This is when you’ll figure out what kind of day it’s been, and for some people, this is when you discover if your loved one knows who you are today.

Communication tips: nonverbal

• Be aware of your mood (and if you’re stressed or upset, take a minute to compose yourself before you enter)

• Approach from your loved one’s front so that she can see you and know you’re addressing her

• Even if it feels weird, introduce yourself if recognition is ever an issue. “Hey, mom! It’s me, Jennie Lynn, your daughter!” with a smile, looking into her eyes, perhaps touching her arm.

• Adjust yourself so that your eyes at the same level (perhaps by sitting or kneeling).

• Once you’ve made it clear that you’re talking to her, and who you are, step a bit to the side or sit next to her. Remaining face-on can feel a little intimidating, and a shift to the side can be relaxing.

Guide: Talking to someone with dementia: Intro

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A few months ago I began a section on this website called “Communication.” In it, we’ve covered both verbal and nonverbal communication, but I’d like to approach the topic from a different direction.

Basically, I want to create a step-by-step guide for what to do when you visit with someone living with dementia. How do you address them? What do you do during awkward moments? Can you guide the conversation proactively?

I’d love to incorporate any thoughts or experiences that you, my fabulous readers, have to share. Please comment (near the bottom of the page) with your suggestions. If we create something good, I’ll make it into a downloadable PDF that you can share with friends, family, and colleagues!

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There’s a saying in the dementia community that elicits a lot of giggles:

“If you’ve met one person with dementia, you know…one person with dementia!”

(a cheeky take on the ol’ “If you’ve met one, you know ’em all!“)

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There is no one-size-fits-all solution for ANYTHING, especially as far as dementia is concerned. So this post (as well as any future guide) needs to be approached with that in mind.

Not every tip works for or is appropriate for every situation. My hope is to create a well-stocked toolbox that you can use to make the most out of your visits with people living with moderate- (or more severe) symptoms of dementia.

We’ll cover the following topics:

• Intro (this page)
• Your approach
• What to say
• Yikes! What now? 
• How to leave (coming soon!)

Reframing dementia as a terminal illness: early onset

Recently I’ve been thinking a lot about dementia and how we, as a society, view it. I detect a paradigm shift.

Observing how different groups  discuss dementia, I’ve noticed a split in perspective. It seems determined by whether or not the speaker is, herself, living with the disease.

The difference between the two sides? A shift towards viewing dementia as a progressive, terminal illness rather than as a foregone conclusion.

This is just one in a series of posts on this topic. Today we’ll discuss early-onset forms of dementia.

Dementia is progressive

Essentially, dementia is brain atrophy. It’s a degenerative disease. Why do we sometimes think of it as a normal part of aging? It is not.

Just like others who are terminally ill, those living with the symptoms of dementia deserve to be treated as individuals living with a progressive (meaning it gets worse, not better) illness. The key word is “individuals.” Too often they’re dismissed as “too stressed,” “just getting older,” or “losing it.”

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Dementia is most often thought of as a memory disorder, an illness of the aging mind. . . . But experts in the field say dementia is more accurately defined as fatal brain failure: a terminal disease, like cancer, that physically kills patients, not simply a mental ailment that accompanies older age.

-Catherine Elton
Reframing Dementia as a Terminal Illness
TIME Magazine (10/14/2009)

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In Catherine Elton’s article, Reframing Dementia as a Terminal Illness (excerpted above), Elton interviewed Dr. Greg Sachs (of Indiana University‘s Center for Aging Research). He discusses the study, The Clinical Course of Advanced Dementia,* published in the October 15, 2009 issue of The New England Journal of Medicine. Sachs wrote an accompanying editorial for the journal.

“This is the first large study to show what specialists have been arguing for years. Dementia is a terminal illness, and patients warrant palliative care,” Sachs says.

Talking to kids about dementia

 

Do you both have kids and care for someone with symptoms of dementia? Or maybe you’ve been diagnosed with dementia and want to talk to your family about it. How can you talk to children about things like Alzheimer’s Disease or other dementias?

My experience

When I was little, my grandfather began developing dementia (probably Alzheimer’s). Honestly, I was scared.  I was confused and felt completely helpless seeing this man I’d always looked up to getting…well, he was acting kind of strange.

It started out with little things: he’d trail off during a story or he’d forget where he put things. He didn’t recognize my brother when they ran into each other at church. Then he had to stop driving. Then he started forgetting common words like “fork” or “brush.” And it went on from there, for years…

Obviously something was up, but no one was really talking about it.

It scared me: as a kid and teenager I felt like my family only avoided discussing “really bad” things. We weren’t discussing this: it must be “bad.”

So I withdrew. I didn’t know it at the time, I didn’t mean to, but looking back I realize that’s what I did. Because I didn’t know what was going on, I found my grandfather’s behavior scary, unpredictable, and a little embarrassing.

I’m tearing up a bit as I write this; I still feel bad about it. I didn’t know any better, of course, but I hate to think I may have hurt his feelings. (Yes, even if he didn’t recognize who I was. Check out Emotions without memories for more on that…)

So I wanted to write about this topic, how to discuss dementia with kids, so that others may have a better understanding of what’s going on and what it means.

 

Emotions without memory

“Mom can’t even remember I visited. What’s the point in going?”

I know that this won’t directly apply to everyone in our community, but I’d like to discuss it anyway. Feeling like your visits, conversations, and actions mean nothing to your loved one is a horrible experience. Thankfully, it’s not the whole story.

If you’d like some background information about progressive dementia, keep reading. If you’re pretty knowledgeable already then you can just skip the next 3 paragraphs.

The most common form of progressive dementia is Alzheimer’s Disease. If the dementia is caused by something else (Vascular, Lewy Bodies, etc.) then these “stages” may occur in a different order or may happen in a different order than they do with AD. That said, discussing the progression of AD is a good place to start.

There are 7 clinical stages of Alzheimer’s, ranging from Stage 1 (Normal) to Stage 7 (Most Impaired). The Fisher Center for Alzheimer’s Research Foundation  does an excellent job defining the stages in “Clinical Stages of Alzheimer’s.”

Sometime around Stage 5 (Moderately Severe Alzheimer’s) or Stage 6 (Severe Alzheimer’s), cognitive deficits reach a point where close friends and family members get misidentified. Shortly before this, a lot of people stop being able to recall recent events, like if they ate lunch or took their medication. That’s where we’re jumping in.

Many caregivers have a really hard time with mid- to -later stages of dementia. Their loved one might forget who, exactly, they are. Short-term memory degrades, too. Caregiving can get tough(er) now because your mom’s no longer critical of your cooking; instead, she accuses you of not feeding her.

“Why do I bother? She doesn’t even remember I was there!”

Well…kind of.

As it turns out, even if a person forgets an event (a great visit, for example), the emotional impact lingers. No surprise to professional caregivers; many of them observed this their whole careers. But now there’s a study to support it.

Communication tips: verbal

Verbal communication

• If you need to repeat yourself, do so using the same words. It’s ok to say the same thing in a different way, but try saying it the same way, again, slower, first. 
• Pause to give her time to process the information. 
• Communicate at her pace. Keep in mind how that this changes over the course of the day.
• Speak directly and in a normal voice. So don’t baby-talk and please don’t yell.
• If you’re speaking with someone in a later stage of dementia, introduce yourself (“Hey, Mom, I’m Sally, your daughter…”)
• It’s alright to speak a little more plainly and slowly than you might with a person not experiencing symptoms of dementia. Try to keep ideas separate (“Let’s get dressed” instead of “Let’s get dressed so we can get in the car and drive to breakdfast”). Just don’t be condescending.
• Don’t let yourself become exasperated, angry, upset. Your goal is to communicate, not to have a perfect conversation.

About us

Hi, welcome to MySimpleC.com.

My name’s Virginia Lynn Rudder (“Jennie Lynn” for short) and I work for a company, SimpleC, that’s using new technology to connect people living with dementia with their communities and to deliver personalized information, entertainment, and therapies set to an individual’s schedule. And largely succeeding, I might add.

But I’m not here to talk about that.

You can pop over to www.SimpleC.com if you’re interested in learning more, but we won’t be offended if you’re not. In fact, I’ll rarely even mention SimpleC. And if I ever do bring up a SimpleC product or service in the future I pledge to disclose our connection in the article, just as I’d disclose any other connection with a product or service I mention.

Because it’s not the goal of MySimpleC.com to sell you anything.

Seriously.

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Over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

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The point of MySimpleC.com is to establish an online community that will connect professional caregivers with family caregivers, uniting people living with symptoms of dementia with high-level researchers with people just now learning that not all dementia is Alzheimer’s…and everyone in-between.

Why?

Because over the years we’ve seen the same hard-won knowledge uncovered time and again in different environments, communities, homes. And, for the most part, that’s where it stops. There’s no effective way to share it.

See, there are TONS of dementia resources out there but it’s hard to know which ones are worth reading. In fact, I just googled it: “dementia” brought up 10,200,000 results. “Alzheimer’s” netted 57,100,000. Sometimes there’s too much information and not enough guidance; this definitely seems like one of those times.

Just to be clear: I’m certainly not claiming to know all there is to know about progressive dementia. Sure, I’ve picked up a few helpful tips and earned some knowledge from The School of Hard Knocks…but I am acutely aware that it’s just scratching the surface.

We’ve seen a lot of dementia and how the same symptoms are approached in so many different ways, with such varying success. We hope to centralize that knowledge.

But in the process of compiling some of what we’ve learned (and wow do we have a lot to share in the upcoming weeks and months!) I realized that there’s a second component also missing in the digital dementia world: an open forum.

There needs to be a place that’s supportive yet honest, that’s neither woe-is-me nor persistently chipper, where you can ask hard questions and, even if they’re unanswerable, at least learn how others in your situation approached them. We need a place where it’s ok to be upset but not alright to be disrespectful. We need a place where caregivers whose loved ones have recently passed can connect with one-another and, if they’d like, share with those facing the battle they just fought.

I want this to be that place. We’re building this from the ground-up, together, and a lot of the initial discussions will take place in comments and through posts that you suggest.

Don’t worry, it’s not another person or entity demanding more of your time. Just…stop by when you can, and if you have a second, let me know what you think is good and what seems off or wrong.

Whether you’ve been diagnosed with a progressive dementia yourself (Alzheimer’s, Lewy Bodies, Parkinson’s, Mild Cognitive Impairment, vascular, …) or you’re the family or friend of someone who has been…it can be so overwhelming. I know it can. Not all bad, not by any stretch, but just such an unpredictable, continual challenge. And so isolating. Hopefully we’ll create a community that you can call your own.

So, we’re glad to have you; I hope you stay a while!

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MySimpleC.com does not provide medical advice, diagnosis, or treatment.

Life story

Recording your life story can be a powerful experience. So can helping someone else record theirs.

For people facing progressive dementia, discussing and sharing life lessons can mean even more. As they record their hard-earned knowledge, people living with dementia also lay a kind of roadmap of the most significant and defining moments in their lives.

This is important because dementia often eats away at memories in a predictable pattern.

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Recording your life story can be a powerful experience. So can helping someone else record theirs.

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We talk about a “narrowing window” on childhood. That’s when someone with memory loss retains older memories but not more recent ones. A lot of times the most resilient memories that all of us make are in the times we define ourselves as individuals, usually as teens and younger adults. New experiences make the strongest memories, and you have more new experiences at younger ages age, too.