Category: dementia

We eat to live.

But food is more than fuel. Food has strong ties to family rituals, celebrations, and emotions.

Food is love. I’m thinking of a time, over 15 years ago, when my long-term boyfriend dumped me like a bad habit. Food started arriving in the mail. My mom send Red Vines licorice. My dad sent Mint Milano cookies. My friend Erin sent Mint Milano cookies. I really like Mint Milano cookies.

I don’t know if any of them actually said, “I’m so sorry, and I love you.”

They didn’t have to.

Food ain’t just food.

When a loved one living with dementia experiences a change in their preferred food, eating habits, and meal routines, we often struggle to adjust–sometimes because our family routines have to be modified.

I get asked a lot of questions related to appetite and food. First of all, yes, dementia can cause someone to eat more. And dementia can cause someone to eat less.

A person living with dementia might lose or gain a significant amount of weight. They often become more finicky about what they eat, but some individuals become less discriminatory and start eating foods they’ve disliked their whole lives–or even things that aren’t food at all.

Someone I know had to make the decision to help her husband with frontotemporal dementia move into memory care when she caught him eating a marble. Individuals living with dementia have been known to drink cleaning solution and eat Tide Pods. Obviously, people who are prone to eating non-food items need intense supervision and a carefully controlled environment for their safety.

Because the impacts in this area of life can be so diverse, I made a list of some of things to consider when thinking about dementia and food:

• People living with dementia might forget to eat. As individuals are less able to keep track of time, they might not recognize it’s time for a meal.
• People might be unable to purchase food or forget to do so. There might be little at their home to eat.
• Someone living with dementia might forget that they have eaten. If Mom doesn’t remember having breakfast, she might have a second breakfast. And then a third.
• Dementia impact visual perception. A person might struggle to recognize the food in front of them. This is especially true if the food is the same color as the plate.
• Dementia affects the senses, including taste. Food may be tasteless to individuals with dementia. Or perhaps the taste is just…off. If you have a loved one with dementia who insists you messed up a recipe that you’ve made for years, it may be that their tastebuds are not interpreting flavors like they used to.
• As dementia progresses, people living with dementia tend to prefer food that is sweeter and sweeter. This is a tendency and isn’t true for everyone, but it’s common that a person with dementia will start putting honey, jelly, or sugar on food (even if that food is not typically a sweet food). A former nutrition professor at the university where I work had Alzheimer’s. Her family found it ironic that she started putting copious amounts of honey on green beans, hamburgers, and spaghetti.
• Those with dementia are prone to food poisoning because they may not remember how long something has been in the fridge. In addition, their sense of smell might have changed, so an offensive smell that would typically signal something rotten doesn’t stop them.
• Medications can change a person’s appetite. It’s also common that a medication can leave a persistent metallic taste in one’s mouth. If you notice a change in eating habits, consider any alterations to a person’s prescriptions.
• Mouth pain or dentures that don’t fit well might cause a person to eat less or stop eating. A person with dementia might not be able to express this to care partners.
• As a person’s level of activity decreases, their appetite often decreases. If it’s possible to encourage exercise, you might see that a person is willing to eat larger portions.
• As with all of us, we eat more when we sleep less. And we eat less when we sleep more. If Grandma can’t sleep because of restlessness induced by dementia, she might snack throughout the night, leading to weight gain. If someone with dementia sleeps 18 hours a day, they are probably eating limited calories.
• Sometimes a person with dementia might struggle to use a spoon or fork. While we often transition to assisting them in the process of eating, finger foods can be a great way to allow them to maintain a bit more autonomy.
• As end stage dementia approaches, people may struggle with swallowing. This causes some people to be reluctant to eat. A speech-language pathologist can assist and help to prevent aspiration.
• At the end of life (due to a dementia-causing disease or another cause), people lose their appetite as their body becomes less able to process food. This is a natural part of the dying process, and dementia experts do not suggest a feeding tube in the vast majority of cases.

From a young age, culture dictates to us that food means love. We show our affection for people by feeding them. We get together with people we care about for meals and celebrations. When we express our care during an illness or after a family member’s death, we send a casserole–at least here in Iowa. In Minnesota, you’d call it a hot plate.

We show love by pushing food at people. When we don’t know what to say, we bake a cake. In my case, that’s a cheesecake. It’s the only type of cake I know how to make from scratch.

Unfortunately,  we often have to let go of that definition of love with dementia. We have to accept changes in food preferences…and, in the end, we have to accept (reluctantly) that person no longer needs food in the way that they once did.

Hospices will discourage families from forcing a loved one at the end of life to eat. In my experience, this can be challenging for families. How can you not feed someone you love?

In summary, dementia impacts appetite. It can impact food preferences. It can impact swallowing and the fine motor skills required to feed one’s self.

Yet…

Many of us still think of dementia as just memory loss.

 

 

 

LOUDER. FOR THE PEOPLE IN THE BACK.

There’s more to dementia than memory loss.

As part of a series of posts focusing on symptoms not related to memory, I’ll be talking about gait changes today.

So what is gait? Gait is manner by which someone walks.

And dementia can absolutely change how a person walks (and moves in general). It almost always does….sometimes even before a diagnosis. In fact, if you have a loved one with cognitive issues, you should also mention any changes in walking and movement at a doctor’s appointment.

Maybe you’ve noticed that they shuffle.

I often hear the word shuffle in reference to dementia. The dementia shuffle. Maybe the Alzheimer’s shuffle or the Parkinson’s shuffle. A slow walk characterized by short steps. Frequently the gaze goes to the ground rather than the horizon.

However, not everyone’s gait changes in such a predictable way.

A man recently told me about his father, Ron, with Alzheimer’s who started limping as if he had an injured foot or sprained ankle. When asked, Ron said there was nothing wrong with his foot. He was fine. And he was walking fine. The limp was dramatic enough that his son took him to the family doctor.

The doctor sent him for X-rays, which turned into a stressful experience for Ron. In the end, they didn’t find anything wrong with his foot.

Ron’s son told me that his dad continued to walk this way for the next year or so when he moved toward end stage Alzheimer’s and couldn’t walk at all.

It always bothered Ron’s son that he couldn’t figure out what was wrong with his dad’s foot.

I asked if it seemed like he was in pain when he walked. He didn’t. And he continued to insist his foot was fine and there was nothing wrong with the way he walked. He didn’t know that he was limping at all.

Perhaps there was something wrong with the foot. Maybe there was an injury that Ron couldn’t express and didn’t show on the X-ray or physical exam. I appreciate that they checked it out.

But after hearing about the situation, I don’t think there was an injury. I think the limp was caused by dementia.

Your brain is the control center for your body. When your brain falters, it struggles to give your body adequate cues to move in the way that it’s moved in the past. The missing connections differ from individual to individual, so gait changes occur differently in each person.

If you know one person with dementia, you know one person with dementia, right?

Our brains are unique when they are healthy. And when they falter, they falter in unique ways–even for people who share a diagnosis.

Sometimes people with dementia lean to one side or lean forward when they walk. Sometimes they no longer swing one or both arms. Perhaps they consistently take a big step with the left leg followed by a tiny step with the right leg. One person I know told me that their mom walked like she was “out of alignment” and shifted in one direction.

It’s likely that people with dementia walk more slowly and require more focus and concentration in moving. They may struggle to talk while they walk because walking is a task that requires all of their cognitive focus. They may lose track of where they are intending to walk because walking itself takes so much mental (and perhaps physical) energy.

Recently I almost lost my cool (and I would’ve except I’m working on being more thoughtful before I react in the New Year) when I saw a nurse aide scold a resident with dementia for “dawdling” on her way to the dining room. I wanted to cheer for the resident when she yelled back, “This is as fast as I go, mean lady!”

To my disappointment, the aide then grabbed a wheelchair and practically shoved the resident into it because “we don’t have time for you to drag your feet.”

It was ironic because in this case the dragging of feet was a symptom of dementia. The aide was saying…we don’t have time for you to have dementia.

Although I know nursing homes are understaffed and aides have a lot to do, I wanted to explain to the nurse aide that a nursing home is not the right place to work if you get frustrated by slow-moving folks, and these slow-moving folks are hustling–even if it’s not always apparent to an outsider.

If your gait has changed due to dementia, berating you like you’re a middle schooler slacking in gym class isn’t helpful. You’re not going to move faster because I scold you.

Sometimes we think there is something wrong besides an existing dementia diagnosis when changes are related to movement and body. We are told that dementia is about the mind. It’s about forgetfulness. It’s a cognition thing.

We aren’t told about the connection between connection and movement. When the brain doesn’t work efficiently, it loses the ability to control the body.

My husband’s grandfather passed away of Alzheimer’s. I once asked my mother-in-law if she knew what Alzheimer’s was when he was diagnosed. She said no–that she just thought he’d get really forgetful and maybe have to live in a nursing home someday. She didn’t know he would die from it, and she certainly didn’t know about the symptoms other than memory loss.

The lack of education and resources given to those diagnosed with a form of dementia and their families is frustrating. We are working to make support available, but connecting with the individuals that need us is challenging. We can’t cure dementia at this point, but we can help people adapt to changes and support them.

To do this, we have to educate people about what dementia really is…it’s not just memory loss.

Until we understand this, we will continue to shortchange people living with dementia and their care partners.

Hi friends!

Today I’m sharing a local news show, the Steele Report, that features our Dementia Friendly Action team. It originally aired on January 12, 2020. You can watch it here:

Steele Report Waterloo Dementia Friendly Action Team

You’ll see me talking about dementia, along with my friend Kevin, who lives with Lewy-Body Dementia in our community. Kevin discusses how he contemplated suicide after diagnosis, his goal of continuing to live as independently as possible in our community, and how he depends on the kindness of both friends and strangers.

In addition to focusing on dementia more generally, the show discusses resources available to those living in my area (northeast Iowa) but I’d encourage you to explore what services might be available in your own area.

In the United States, you can see if there any chapters of the Alzheimer’s Association nearby: https://www.alz.org/

Keep in mind that the Alzheimer’s Association provides support not just for those with Alzheimer’s but for those who live with other types of dementia as well.

If you live in the United States, you can also locate your area agency on aging. If you aren’t aware of one nearby, you can search here: https://eldercare.acl.gov/Public/About/Aging_Network/AAA.aspx

In addition, I would encourage you to check out what you could do to make your community dementia friendly: https://www.dfamerica.org/

On this show, you’ll see a couple of my current and former students, as well as me, talking about dementia, its challenges, and how to seek out support. However, the most powerful words come from Kevin, who is living with Lewy Body Dementia.

Not everyone with dementia wants or is able to speak about their experiences, but Kevin has stepped up to the plate to do so. To Kevin and everyone else who lives with dementia and continues to teach me what that experience is like, thank you. I try to be a good student.

I’ve read and written research articles on dementia. Books on dementia take up space on my bookshelves at both works and home. I go to conferences, seminars, and workshops. I probably do 40 or so presentations on dementia each year, and I teach a college class called Families, Alzheimer’s, and Related Dementias.

But when I spend time with someone who lives with dementia, I always learn something new. Always. In this field, you need a combination of professional and personal experiences. Book knowledge and street smarts, or something like that. I continue to rack up more smarts the more I communicate with people who live with various types of dementia and their families. I’m sure some of my friends with dementia sometimes want to call me out because I don’t understand their experiences, but they are too patient and too kind when I just don’t get it.

And, since it’s the New Year and everyone is talking goals and resolutions, I’d like to say this…I want to keep continuing to learn about dementia. When I started studying dementia about 10 years, I thought I knew a lot. Looking back, I knew virtually nothing. In 10 years, I might look back at 2020 and think I knew nothing now.

And that’d be fine.

Because it would mean I continued to learn.

 

I won’t be putting out any new content until after the New Year, but I will be reposting some past blogs related to the holidays in the upcoming weeks.

Have a great day!

–Elaine

Hi friends!

It’s the week of Thanksgiving, and I almost didn’t write a post for today. After all, the university where I work is on break.

But I did some thinking…and I realized that I need to say something today.

THANK YOU.

Yeah, that’s about it. Thank you. This Thanksgiving I am thankful for you.

I’ve written this blog for almost five years now. Some of you have been with me since the beginning. Some of you have joined me recently.

Thanks to all of you.

I have gotten some negative feedback on my blog. If I’m being honest, I get much more positive feedback than negative feedback.

And yet the negative feedback affects me more negatively than the positive feedback impacts me positively. I wish I weren’t that way, but I am. Maybe you can relate.

The one negative comment on your work evaluation is what you think about…not the dozen positive comments.

The one person who mentions they don’t like your new haircut (just rude) is your focus…rather than the several people who compliment you.

You know how some stuff just eats at you, right?

If you are a person who left me one negative comment about my blog in 2016, I probably remember you. I may or may not remember your positive comment from 2017.

I’ll give you a list of terms that have been used in association with me and my blog: unkind, rude, bitchy, overly politically-correct, offensive, patronizing, uncaring, unprofessional, mean, obnoxious, self-promoting, judgmental, uneducated.

I didn’t realize typing that would make me feel better, but it was somehow cathartic.

Ahhhhhh…

When you put yourself and your work out there on the internet, I’m sure this is par for the course. And guess what? The more people who read my blog, the more people who criticize it. When my mom, my husband, and three friends were my only followers, I only got glowing reviews.

But I really do get over (most of) those negative comments. Much of the time I delete them so that I can’t re-read and overanalyze them. I also worry that I will respond in a way that I wouldn’t be proud of if I read a comment too many times.

I’m not talking about constructive criticism. I won’t tell you I always respond well to constructive criticism, but I do appreciate people who make me think. And I know I’m not perfect, and my blog isn’t perfect.

But here I’m talking about comments that aren’t constructive. Sometimes they are just mean. (I feel very Taylor Swift here.)

I’m not trying to play the victim. Anytime you put something online and encourage people to read it, you’re going to get responses that run the gamut. I know I’m not unique here.

I’m tempted to go on about the criticisms–because once you get me started…but this blog is about Thanksgiving. Gratitude. Feeling blessed.

Every single damn time there is a comment that hurts me (even though I know it shouldn’t), y’all pick me up.

I was having a bad day recently. I had gotten some bad news about a friend with cancer. I spent some of my day helping a student in a mental health crisis. And my cat had a stroke. (She’s doing quite well now.)

I got home from work and happened to notice a comment on my blog that wasn’t exactly positive. Looking back, I overreacted to it. In the context of my day, it was a very small thing. I let my crazy brain take hold and make it a big thing.

Then I saw another comment that picked me up. A person had shared my blog with the comment “This is the lady I’ve been telling everyone about.”

I’m not sure why this particular comment was so impactful to me. Maybe I was just flattered that someone had been talking about me…in a positive way.

It picked me up.

In the last few years, there have been a couple of times I’ve seriously considered giving up writing. Most days I enjoy sitting down to write, but I also have a full-time job and it’s hard to find the time some weeks. I don’t make any money off my blog. I’m not selling a book. I’m not pushing an agenda.

So why do I keep doing this?

As a kid, I wanted to be a writer. I’m sure it never occurred to me that I’d write things that people didn’t like. It also never occurred to me that I’d make these connections from people across the world. I could’ve never predicted the power of the internet.

I thought I’d write book and people would buy it. I didn’t know I’d have the opportunity to write 2000 words a week that would be distributed instantaneous by the literal click of a button.

And that people could give me instantaneous feedback also by the literal click of a button.

It’s a crazy world. The internet makes a pretty easy to tell someone you think they suck. You don’t have to look them in the eye. They probably aren’t going to show up at your doorstep with a baseball bat. So insult away.

I keep writing because of the many of you who I consider “my people.” Sometimes I know your names, and sometimes I don’t. Maybe you have some internet nickname that I try to interpret (What does joygirl88 mean? Was she born in 1988? Is she 88 years old? Were joygirl1 through joygirl 87 taken?).

Perhaps, from your comments, I know you have a parent with dementia. Or a spouse with dementia. Or that you work in a memory care community.

Many of my readers are living with dementia. When I started this blog, I didn’t expect to have readers with dementia. Looking back, I’m not sure why I didn’t anticipate this, and I’m embarrassed I never considered it. Your feedback is especially important to me, even when you’re telling me that I missed the boat…which I sometimes do.

Yeah, you’re “my people.”

I appreciate you. It means a lot to me that you invite me onto your screen once a week. I try to write stuff you can read in less than 5 minutes. You are kind enough to keep inviting me back, but I don’t want to monopolize your time.

You are the reason I keep writing.

If you celebrate Thanksgiving, enjoy it. I’m giving you permission to opt out of events that don’t work for you now that dementia is becoming a bigger part of your life. I’m giving you permission to have an exit plan and leave without saying goodbye to every single person at your holiday gathering. I’m giving you permission to say no to obligations and to say yes when people offer help.

Happy Thanksgiving, friends.

Thanks for reading what I write.

 

When I say dementia, many people equate the term with memory loss and only memory loss. In reality, dementia is about so much more than memory.

If you read my blog every week, I apologize for sounding like a broken record. (Is that an analogy that young people even understand anymore?)

Today we’re going to talk dementia and sleep.

I don’t care who you are; you function better when you sleep better. I could reference hundreds of research articles, but you know it’s true. Not getting good rest makes everything harder. When we don’t sleep well, our brains fail us.

Example: I woke up at 3:30 am last Wednesday. During the day I put a paper plate in the sink to be washed instead of throwing it away. Then I sent an email to a student and signed it “Elaane.” Yes, I misspelled my own name.

And, in an embarrassing professor moment, I entered a 2000 in my gradebook when it should have been a 20. I’m sure my student was disappointed I caught this after I noticed they were sitting at 1052% in the course.

At work, someone asked me how I was. I responded that I was hungry.

After a pause, I said, “Oh, not hungry. I mean, tired. I’m tired.”

I was so tired that I got the words hungry and tired mixed up.

Our brains work better when we get adequate and restful sleep. This is even more true for a brain that is already compromised by dementia. Also, the dementia brain tires more quickly than a brain not affected by dementia. This is why people with dementia may sleep more than they used to.

But getting restful sleep can be challenging for some people living with dementia. This can be due to dementia itself, but sleep issues can also be caused and exacerbated by other factors such as medications and co-existing medical conditions.

If sleep habits change suddenly for someone with dementia, this could be a result of pain that the person has difficult expressing. In addition, changes in sleep may be a result of anxiety and depression that accompany dementia.

I find that sleep issues are particularly challenging for a couple of reasons: 1) When sleep goes downhill, other dementia symptoms tend to rear their ugly heads, and 2) It is rarely only the sleep of the person living with dementia that is affected (you know what I’m talking about, caregivers).

A couple years ago, I was invited to visit a dementia caregiver support group. A man whose wife had Alzheimer’s was talking about how much she slept. He estimated she probably slept about 16 hours a day. She slept through the grandkids’ visits and through her favorite TV shows. She was often difficult to rouse, and he often checked to see if she was still breathing.

Another man in the group was also an Alzheimer’s caregiver to this wife. Upon hearing the other guy’s description of how much his wife slept, he chimed in about his own wife’s sleep changes–which were the exact opposite.

“I don’t think your wife has Alzheimer’s,” he said. “People with Alzheimer’s have trouble sleeping. My wife is up all night wandering around the house. Alzheimer’s makes it so you can’t sleep.”

Other group members started sharing their own experiences. Their loved ones slept a lot…or a little. They slept so soundly that they couldn’t be woken up, or they slept so lightly that they woke up every hour during the night. Some had night terrors. Some were sleep walkers. Some slept odd hours–wanting to be in a bed all day but roaming around the house at night.

Every single person in the group had noticed that their loved one’s sleep had changed in some way.

As I often say, dementia is about change.

This applies to sleep. Someone with dementia may experience changes in sleep pattern and quality. And I can’t predict how dementia will impact a person’s sleep.

So, as crazy as it sounds, sleeping more is a symptom of dementia, as is sleeping less. Restless sleeping is a symptom of dementia, as is a sleep so deep that one can’t be roused.

There are some generic tips to try to keep sleep patterns “normal.” Bright light or outdoor exposure during the day. Keeping the environment dark and quiet at night. Making sure days include activities so individuals living with dementia are tired at night. Establishing a routine before bed and upon waking in the morning.

To be fair, these are the same sleep tips given to anyone with sleep issues–not just those with dementia. In fact, I go through this list when I’m struggling with insomnia.

Sometimes these strategies just don’t work. This is a tough one for caregivers who live with their loved one. There is nothing inherently awful about someone with dementia having an adjusted sleep schedule where they are up most of the night and sleep during the day, but if you’re a caregiver and have to get up in the morning for your job after being up all night making sure your loved one doesn’t wander out the front door, you are probably not thriving at your job. Or your life.

Someone I know had to reluctantly choose a nursing home for their mother not because of her memory issues but because her sleep schedule was so erratic that the rest of the family was exhausted. In fact, sleep issues are a common reason for a family to have to consider a memory care community or nursing home as an option.

Another person I know started paying $300 a week for a night “companion” for her father. She said she was buying herself a good night’s sleep, and it was the best money she ever spent. (Understandably, this isn’t an option for everyone. Money makes life with dementia just a little bit easier.)

A man who came to an educational seminar I was speaking at this summer told me that his wife had been diagnosed with frontotemporal dementia and experienced significant changes in her sleep pattern. She started staying up later and later. He tried to convince her to come to bed when he did, but she refused. Her “new normal” included a bedtime of about 4 am with a wake-up time of about noon. I asked how he was doing with this.

He explained that he was retired, and he wasn’t on much of a schedule, so he adjusted their lives to meet the sleep schedule that she preferred. They ate breakfast at 1 pm and dinner at midnight. He’d even subscribed to Netflix so he could watch his favorite shows during the night when nothing was on TV. If people wanted to visit before noon, he said no. He shifted his schedule to meet hers.

I commended him. If you can accommodate the sleep schedule that the person with dementia prefers, go for it.

However, I understand that this isn’t a possibility for most people. Dementia exists in the context of our lives, and many caregivers have jobs or children in the home. It is not surprising that caregivers are frequently sleep deprived. And you can only live with sleep deprivation for so long until your health becomes compromised.

Dementia is responsible not only for changes in sleep pattern but also an increase in disordered sleep.

There’s a type of dementia, Lewy Body Dementia (LBD), that makes people especially prone to sleep issues. Many people with LBD have something called REM sleep behavior disorder.

Typically, while people are in REM sleep, their body experiences temporary paralysis. It sounds scary, but it’s actually a good thing. Your body stays still, in your bed and tucked safety under your covers, as you dream.

If you have REM sleep disorder (which many people with LBD and other types of dementia do), your brain doesn’t effectively paralyze your body. You act out your dreams, and many of these dreams are dramatic and violent.

Someone might talk, scream, and thrash around in their sleep, not only disrupting their own sleep but the sleep of others in the house. In some cases, the person might become violent or even leave the house on foot or in a vehicle.

I know someone with dementia who got up in the middle of the night and laid out all the kitchen knives on the counter. She then called 911 and told the dispatcher that there was intruder in her bathroom. She didn’t remember any of this in the morning. I also know of a man with dementia who was getting a gun out of his safe at 2 a.m. when his son intervened.

These experiences can be terrifying for those who live with someone who has dementia, but they are also terrifying for the person living with dementia.

It’s important we get past memory loss when we talk about dementia.

We aren’t supporting individuals living with dementia and their support teams until we acknowledge the various types of challenges they must face everyday.

And every night.

 

 

 

 

 

 

 

 

 

Once again, I repeat my complaint…we are still presenting dementia as if the only symptom is memory loss. If you’ve ever heard me speak, you might have been surprised at how little I focused on memory loss.

Memory loss is to dementia as vomiting is to an upset stomach. Hang with me here…

There are lots of potential symptoms involved when you say you have an upset stomach: vomiting, diarrhea, cramps, acid reflux, constipation. To only talk about vomiting when you talk about an upset stomach is to mislead people about what is challenging about having an upset stomach.

There are lots of potential symptoms involved when you have dementia: memory loss, balance, emotion regulation, communication difficulties, personality changes, issues with sensation and perception. To only talk about memory loss when you talk about dementia is to mislead people about what is challenging about having dementia.

I’m doing a bit of a series here on symptoms of dementia that may get less attention.

Today we are talking about apathy.

If you care to continue reading, that is. Or if you don’t feel like it, I understand. Doesn’t matter to me. Whatever.

Aren’t I funny?

Apathy is a lack of interest or concern. When you should care about something and you just don’t, that’s apathy. Lack of enthusiasm. Lack of engagement.

As you might expect, it often shows up with its good friend, depression. Depressed people are often apathic. They don’t care about their relationships, their jobs, their health. They can’t get excited about things that used to be fun. They can’t make themselves care enough about their hygiene to take a shower. It’s not that they’ve given up. It’s that apathy is a symptom of depression just like blurred vision is a symptom of a migraine.

I hear often times that it just seems like Grandma doesn’t care anymore. She used to be excited to go to the grandkid’s games and recital. Now she’d rather sit on the couch. Her niece got engaged. She shrugged. Her brother died. She didn’t cry.

Her family isn’t sure if she really seems sad. She certainly doesn’t seem happy. She just seems nothing.

Recently someone was in tears as they told me that their husband, who had been diagnosed with frontotemporal dementia, had wet himself while out to dinner. It was not that he had wet himself that upset her the most. It was that he didn’t care. While she worried that people around them could smell the urine, he kept eating from the bread basket. She encouraged him to go to the restroom to clean up and try to possibly dry his pants using the hand dryer. He refused.

Another person I know with frontotemporal dementia was confronted for stealing several kinds of expensive cheese from the grocery store. (I should note that impulse control issues are another symptom of dementia.) When confronted, he wasn’t ashamed. He didn’t seem embarrassed or humiliated. He told his wife to pay for the item. When she got upset with him, he didn’t understand why this was a big deal.

You can categorize apathy into three (overlapping) types:

Affective/emotional apathy–Someone experiencing this type of apathy often lacks empathy and loses the ability to show caring for others. They may not greet family members with the enthusiasm they had in the past. They’re unaffected emotionally by events that would have had a big impact them on the past. They’re unexcited by good news and unbothered by bad news.

Cognitive apathy–This means that your brain can’t be bothered to be engaged with what’s going on around you. People with cognitive apathy may not be able to initiate a conversion. Their brain just decides it’s too much work to listen, to talk, to process information. You might become frustrated that they aren’t paying attention. Again, keep in mind this is a symptom. Getting frustrated with the individual does no more good than getting frustrated by someone with lung cancer who has a cough.

Behavioral apathy–This means that people are physically able to move about and accomplish tasks…but they can’t. We all experience this sometimes, but this isn’t just a matter of overcoming a lack of motivation. For some people with dementia, this is a very real symptom that impacts quality of life. It may mean that someone who previously kept a clean house now lives with trash on their floor for months at a time. It may mean that the tasks involved in personal hygiene are just too much. Again, this isn’t a person who has given up. This is a person who is experiencing a symptom.

And that’s what’s particularly hard about dementia and apathy.

It seems like the person living with dementia just doesn’t care. And we get frustrated become they seem to have given up.

But keep this in mind. Motivation is a brain function. Their brain is failing them.

It’s a symptom of a disease. It’s not them. It’s not you. It’s part of dementia.

This isn’t just about memory.

 

 

I am continually amazed at how we still think dementia is only about memory loss.

When I see Alzheimer’s and other dementias represented on TV, in movies, and on social media, I am frustrated at how these portrayals are often focused entirely on memory. Unfortunately, I sometimes see people in the medical profession present it the same way. Dementia = Memory loss.

But we’re only talking about a small piece of dementia when we talk about memory loss.

If you have dementia or know someone who does, you have probably become all too familiar with symptoms other than memory loss.

Today we will talk about one symptom that many individuals not affected by dementia are unaware of….hallucinations. Yes, people living with dementia may have hallucinations.

Let me add that the experience of dementia varies both by the disease causing the dementia (e.g., Lewy Body dementia, frontotemporal degeneration, vascular dementia, Alzheimer’s) and by the individual. Certain types of dementia are more likely than others to cause hallucinations. In particular, those diagnosed with Lewy Body dementia often experience hallucinations early in the disease process.

I tried to do a bit of research to see what percentage of people living with dementia have hallucinations, but I couldn’t find any statistics that I would trust. Do people with dementia always tell us when they have hallucinations? Obviously they don’t.

I will add that once a guy with Lewy Body dementia looked down at his shoes and said to me, “There are snakes crawling over my feet. I know they are not real but I can’t make them go away.”

Sometimes we identify a hallucination by behavior. We can’t experience another person’s hallucination, of course, but we can hear them talking to someone we can’t see. In other words, we experience a person’s response to a hallucination and have to connect the dots.

Here is what you need to know about hallucinations and dementia.

Hallucinations are sensations that appear to be real to the person experiencing them. When I use the term sensations, I’m referring to the five senses. A hallucination might mean you can see someone who isn’t there. It could also mean you hear voices. And those hallucinations are often as real to the person experiencing them as your reality is to you.

Hallucinations are not limited to sight and hearing. They can involve other senses as well. Someone experiencing a hallucination may insist they smell apple pie and be argumentative when are told there’s no apple pie in the kitchen. They may taste something metallic as they eat their mashed potatoes and start digging through them with their hands to find the problem. A person can also experience body sensations like spiders crawling all over their body. They may pick at their skin until it bleeds.

Hallucinations can cause people living with dementia to have significant anxiety. Their actions might not make sense to us unless we are aware of the hallucination, and often times our reaction to the hallucinations increase rather than decrease that anxiety.

Think about it.

What would you do if there was a large man standing in the bathroom watching you when you showered? What would you do if smelled rotten fish and no one would help you look for the source of the odor? What would you do if there were bugs crawling around in your underwear and people refused to help you change clothes? What would you do if your food tasted so terrible that it was inedible and no one would bring you anything else to eat because they insisted you were being “difficult?”

You’d probably be argumentative. Maybe you’d be aggressive. Or perhaps you’d just go to bed and cry because no one was listening to you. But when people with dementia do these things we say they are a behavioral problem.

If you are interested in watching a video clip on interacting with people living with dementia through hallucinations, I just happen to have one for you: Teepa Snow on Redirecting Hallucinations

There are medications that doctors often try to use in minimizing hallucinations. However, I would suggest doing an inventory to see if there are potential changes that can be made to minimize hallucinations without (or perhaps in addition to) prescriptions.

Here are some ideas:

• Make sure that a person who is prone to hallucinations gets adequate sleep. Lack of restful sleep can trigger hallucinations in those living with dementia. (I also know of a mother of newborn twins who had hallucinations because she had literally not slept in 3-4 days. Our brains don’t work well when we don’t sleep. Surprise.)
• Change the environment. If a person has a recurring and bothersome hallucination in a certain place, either avoid that place or change it in some way. If someone looks out a certain window and sees a threatening figure, put curtains over the window. If a person tends to hear a scary voice when they sit in the lounge, find an alternative place for them to sit.
• Dehydration and starvation can make hallucinations more likely among those who experience dementia. Someone I know took her panicked grandma to the emergency room because her hallucinations had become more frequent and anxiety-provoking. Fortunately, the hospital figured out that she was severely dehydrated and got some fluids in her ASAP. Her hallucinations didn’t go away, but they became less frequent.
• Use headphones and music. I know of a man with Alzheimer’s who experienced auditory hallucinations. He heard voices, and he paced around the nursing home all day—trying to literally walk away from those voices. His family got him an iPod and put some headphones on him. His quality of life improved dramatically. The voices had been drowned out by Johnny Cash and Peter, Paul, & Mary.
• An infection can make someone more likely to hallucinate. When there is a sudden onset or steep increase in frequency, my first words of advice are to run a urinalysis. I am always surprised how often the change is due to a urinary tract infection.
• Listen. Just listen. If you experienced something that scared you or made you sad, you’d want to tell someone about it. Imagine if that person dismissed you or told you that you were making up the story. What if they just changed the subject? Wouldn’t it feel like they didn’t care? You’d feel unimportant and not valued. Why would people with dementia feel any differently in that situation?

Did I mention dementia isn’t just about memory loss? Where can I get one of those sandwich signs? I’ll print this message on it and stand out on the street with those people promoting the sale at the furniture store and the used car dealership.

In order to support people living with dementia and their caregivers, we need to start understanding that dementia leads to deficits in all cognitive function…not just memory. In order to promote our dementia-friendly community movement, we have to understand the experiences of people living with dementia. We need to identify areas in which we can improve services, resources, and environments for this population.

We can’t do this if all we acknowledge is memory loss.

The world would be a lot different if we told people how we are when they asked.

You get to work in the morning. Your co-worker says, “Hi. How are you?”

My co-workers are good people. I think they care about me. But in that moment does he really want to know how I am?

Nope. He wants to greet me. He wants to acknowledge me. As he’s rushing to get ready for some meetings or trying to get his inbox down to a manageable level, he doesn’t want to know how I am.

I say, “Fine.” I ask him the same question. He says “Fine.” We get on with our day.

Another example…I’m currently writing at my favorite coffee shop.

As I walked in, I was greeted by a barista with an enthusiastic “Good morning! How are you?”

I said, “I’m good!”

But what if I didn’t?

What if I said, “I’m awful” or “I’m terrible?” Or even, “Absolutely shitty?”

He’d likely feel obligated to ask why or make a consoling comment. He’d have bitten off more than anticipated by asking how I was.

When people ask how you are, how often are you honest? How often do you say you’re fine when you’re not?

What if you said to the bank teller, “Oh, I’m not good at all. Today I have to visit nursing homes with my dad and I’m so stressed out I have diarrhea?”

What if you said to the person behind you in line at Target, “I am horrible. My mom was just put into hospice care and I want to tell her that I love her but she has dementia and I don’t know if she even hears me?”

What if you told the woman doing your pedicure, “I’m terrible. I was diagnosed with Alzheimer’s earlier this week and don’t know how much longer I can work or how we can pay for my future care?”

To be fair, there are times I’ve been a bit more forthcoming with strangers and acquaintances. Many times, they seem ill equipped to deal with my response. Sometimes they are beautifully supportive. But sometimes it just feels good to say something other than “fine” when I’m not “fine.”

When I think about this, my mind does a rewind to when my grandma was dying. She has been diagnosed with cancer a few days before, and I planned to stay at the hospital with her that night. We knew she had a few days (at most) left.

I was hungry and decided to venture out to get some dinner. It was later than I had realized, and I couldn’t find anything promising. I pulled into a Starbuck’s figuring I’d grab something frosted and baked and count it as dinner. Calories don’t count when your grandma is dying.

“Hi. How are you?” the teenage barista asked.

I wasn’t quite sure what to say, so I went with “fine.”

“What are you up to tonight?” he pushed. He wasn’t going to make this easy.

I didn’t have the mental energy to come up with a lie. I told him I was staying with my grandma at the hospital.

“Oh,” he said sympathetically. “Tell you what, I’ll sneak in a free cookie for grandma.”

Ugh. Where do I go with this?

My answer surprised me. I said, “She’s done eating.”

Looking back, I don’t know why I didn’t just accept the cookie.

“For the day?” he asked.

“No, forever,” I said. “She’s finished with eating for her life.”

Yeah, this conversation had just gotten weird.

He gave me a funny look and said something like, “How can she not eat? Everyone has to eat.”

I’m a gerontologist, so I remember my answer going something like this, “People don’t need food when they’re at the end of life. Actually, food can make the process more uncomfortable, so you shouldn’t force it.”

We just looked at each other. I wasn’t sure where he was at, so I went on.

“She’s dying. Like, really soon. Maybe tonight or the next few days.”

The kid looks at me in the most kind way, and says, “How ARE you?”

It was a totally different “how are you” than the one I received when I entered. The intention seemed different. When I walked in, he asked as a friendly but surface gesture. This time it was different. I felt cared for.

At a rough time, this Starbucks barista who probably wasn’t old enough to vote made me feel cared for.

My grandma died in the middle of the night.

I’ve thought a lot about how we ask people how they are and don’t really want the answer. We want them to say they’re good so we can get on with our day. It’s a greeting, really, not a question. What bothers me is that it puts us in a position where we are obligated to pretend things are okay when they aren’t okay at all.

I try not to ask “How are you?” when I’m moving. If I really want to know the answer (which I should if I’m asking the question), I should be still to listen rather than walking away. I try to not ask “How are you?” unless it’s really a question and I’m prepared to hear the response.

If you are a care partner or a person living with dementia, you sometimes say you’re good, okay, and fine when that’s not the truth. Sure, you’re functioning in public. You can make appropriate eye contact and smile. You got yourself out of bed and showered. But sometimes you’re really struggling.

I know this because many of you lie to me. I talk to you and you say you’re good. We talk more and I realize you’re not good.

This is a reminder to all of you as well as to myself….many of the people who say they’re fine are not fine. How many of the people you come across in a day are struggling?

They’re struggling with care responsibilities. They’re struggling with a recent diagnosis. They’re battling depression or anxiety. They haven’t slept in two days. A recent financial crisis has left them close to being homeless. They’re recovering from a stroke.

There are enough crises to go around, aren’t there?

People who are struggling don’t always tell you they’re struggling. In fact, they often tell you they’re doing just fine.

I guess that’s why we should be kind to everyone.

 

 

 

 

Do or do not. There is no try.  –Yoda

I don’t know if you take your life advice from a Star Wars character, but in case you do, I’d like to point out that I think this is a bad advice, especially for those living with dementia and their care partners.

I think I get what Yoda is saying.

My interpretation is that you should commit to what you are doing 100% and not pull back when obstacles are put in your way. Go forward full force with no hesitation. If you say you are trying to do rather than doing, you allow doubt to creep in. And you probably won’t succeed.

There are times in my life that this mindset has been helpful. Last summer I worked as hard as I’ve ever worked at anything to run a half marathon under two hours. During training, I didn’t think “I’m trying to run a half marathon under two hours.” I committed to the goal and thought, “I will run a half marathon under two hours.” And I hit the goal…with 12 seconds to spare. (Side note: An elite runner recently set a goal of running a FULL marathon under two hours and squeaked under. I can run 13.1 miles in the same amount of time it takes the fastest marathoner ever to run 26.2.)

I set another goal this summer for running. I had the same mentality. However, in July I found myself literally sitting on the side of a trail with a hip flexor injury. I couldn’t find a ride home even after I downloaded both Lyft and Uber on my phone (there were no vehicles out in my town). After limping home, I put some ice on it.

And I went running the next day. Once again I limped home. I did this for the next week or so. I had to get some miles in if I was going to reach my goal, so I kept pushing it. Do or do not. There is no try.

Finally, I realized I had to quit. I hadn’t succeeded. I tried. I really tried. I didn’t achieve my goal, but it was an attempt. And I think I deserve credit for my “try.” But I didn’t make it to the start line.

There are plenty of times in life that the “do or do not” mentality just doesn’t work. And there are times I give people credit for trying…even when they end up not doing.

Someone I know who is living with early stage dementia said she’d go on a shopping excursion with friends. She woke up that morning feeling anxious and disoriented. She thought she’d feel better if she showered. She showered. She didn’t feel better. Then she put on some makeup and had some coffee. As she sat drinking her coffee, she realized she wasn’t up to going. She called to cancel. She tried.

Doug, a man whose wife has Alzheimer’s, set out to give her a bath one evening. She was agitated and reacted as if she were in pain. He gave her a few minutes to regroup and tried again. This time she didn’t seem to recognize him at all. He decided he would do the bath tomorrow. He tried.

My friend and her husband who has early stage frontotemporal degeneration go for a walk every night. Yet, once in a while, her husband struggles with his balance. They get a few steps from the house and turn around dejectedly. They tried.

To say “there is no try” negates what people living with dementia and their families do everyday. You are trying, and I see you trying. It’s not easy and sometimes it’s a giant dumpster fire. Sometimes you have to accept it’s a trying day and not a doing day. You have to shrug and keep going. You tried.

Life with dementia disrupts our plans. It gets in our way. What we wanted to do might not be doable…or perhaps it’s not doable in the way we expected or it’s not doable at this time. Sometimes we don’t succeed.

When someone says they’ll try to take their mother who is living with dementia to a family social event, it’s not that they’re wishy-washy about committing. It’s that they understand that they and their mother do not have complete control of the situation. They don’t know if Mom will be having a good day or bad day.

In the “do or do not” mentally, you take Mom even if she’s having a bad day. If you understand dementia, you realize that’s not a good plan. You tried to take her, and it just didn’t happen. Perhaps a few family members can visit her at the nursing home later in the week.

It’s okay to try and to not succeed. If you succeed every time you try in life, you’re not trying enough things, and you’re setting your goals too low. There is no shame in trying and failing. In fact, I think failure is one of those things that binds us as human beings.

You failed? Hey, I’ve failed as well. It sucks but we’re both still moving on. Let’s keep trying.

Unlike Yoda, I think there is a try. I think there’s value in the try. 

If you’re a person living with dementia or a dementia care partner, I know you are trying. It matters that you are trying–even when you fail, bail, or go back to bed. You’re trying.

And I’m rooting for you.