​Until people understand that Alzheimer's and related forms of dementia are not just about grandma forgetting things more often than she used to...

Until people understand that early-onset Alzheimer's affects millions of people under age 60 (often in their 40s and 50s)...

Until people understand that dementia causes death of successive parts of the brain, affecting the ability to walk, speak, swallow, and eventually causing physical death....

Until people understand that Alzheimer's is the only leading cause of death with no cure, no scientifically proven method of prevention, and no treatment that is universally effective...

Until people understand that millions of their friends and family members are forced to quit working to care for a loved one, putting their own future at great financial risk...

Until people understand that a lack of societal and governmental support means that many who have dementia are forced to fight tooth and nail to be able to live well despite the disease and that far too many people lose that fight...

Until these things change, Alzheimer's and other related forms of dementia will remain misunderstood and underfunded. It's up to us to raise dementia awareness.

Whenever I post something on Facebook that references the existence of beauty or joy or any kind of gift in dementia or dementia care, there’s always pushback. “There’s no beauty in dementia! Dementia is ugly and brutal and there’s no good anywhere in it. Dementia tortures the person affected and the caregiver.” One person recently even stated that a family member who died with dementia was “crucified.”

There’s no denying that dementia is ugly. No one has ever said, wouldn’t it be great to experience the beauty that is dementia.... no one.

But I would argue that there is beauty and joy and laughter and other forms of goodness that exist despite dementia.

Early on, before dementia has taken a significant toll, I would suggest that to a large degree, we the care-partners and caregivers along with the person who’s living with dementia have a dramatic ability to affect the degree of goodness we experience. A recent and controversial article in The New York Times suggested “changing the tragedy narrative” of dementia by focusing on the good that exists for as long as possible. There’s an opportunity for gentle humor and much of the goodness of ordinary life because although the person living with dementia experiences some deficits, their impact on overall quality of life is not devastating. In fact, this is an important aspect of advocacy since the common understanding of an uninformed public is that a person who is living with dementia goes from healthy to entirely impaired almost immediately — something those of us who interact with people living with dementia know.

But what about later in dementia’s progression? Unpleasant symptoms of brain death caused by dementia abound. Inability to communicate as clearly (or perhaps not at all), incontinence, hallucinations, paranoia, personality changes, and more are frequent. Where’s the beauty in that list? The joy?

it would be naive, even offensive, to downplay the difficult, uncomfortable, frightening aspects of dementia. And it’s true that as dementia progresses, the good days get to be shorter and fewer. Every person experiences dementia somewhat differently, and some people undoubtedly experience the worst dementia has to offer on an ongoing basis. For most people, though, moments of beauty and joy and connection are possible. Here’s what those moments look like...

• ​A smile or laugh
  
• A look or words of recognition when the person living with dementia has forgotten a name or relationship
• A cogent comment out of the blue
  
• Expressions of love, verbal or non-verbal
• Interest in an activity when none previously existed

​As dementia progresses, the key is to watch for and/or to create moments of joy and beauty. In fact, one book The Purple Sherpa recommends is titled Creating Moments of Joy for the Person With Alzherimer’s Or Dementia. As dementia progresses, these moment may become less and less common and they may last for shorter periods of time... But if we watch carefully, we will most likely see these moments, at least occasionally. And if we do not believe that such moments are possible, we surely won’t see them.

What moments of joy or beauty have you seen?

Over the weekend, I found myself feeling disconnected from my Self. Like most of us, I wear a lot of hats: I’m daughter, primary caregiver for my dad (who has late-stage Alzheimer’s and vascular dementia and has been in hospice since December 2014), responsible for family finances and running the household, business owner, active church volunteer, and the person behind the Alzheimer’s Caregiver Minute website, Facebook page, and Facebook group. On top of all of that, I took an emergency trip to support a dear friend and help with her kids as she moved her husband (who is also a dear friend) into hospice, and I ended up sick for the better part of a week. A lot has been going on… Topped off with the ordinary-for-an-Alzheimer’s-caregiver stress and grief, even stronger because of my friends’ situation.

I noticed that I was feeling exhausted, weepy, and short-tempered. Pressing on through everything on my to-do list didn’t help. As I was driving to church for the third meeting of the week (late, as usual), with a burning in my gut, I realized that I felt like a robot, not like myself. My Self. The person I was before the moment when I realized that something was wrong with my dad, before I realized that my plans were about the go on the shelf because I needed to care for him.


And I fantasized for a few couple of minutes during the drive about things I’d love to do.Escape to the mountains or the beach for a vacation. Just keep driving—nobody would know I was gone for a couple of hours, at least. Curl up in the sun and read a good book and nap. Go for a long day trip, driving somewhere new and fun. Go out to lunch, or dinner, or lunch AND dinner. Things that aren’t impossible in themselves, but they are not possible right now… Not without a lot of advanced planning, budgeting of time and/or money, and either a much bigger chunk of clear time or irresponsibility than I can muster.

I looked at my hands gripping the steering wheel, and they didn’t even look like my hands. That’s when I decided what to do for myself: a manicure. Of course, I didn’t have time to go to a nail salon and get a real manicure, but when I got home, I took a shower, pushed my soft cuticles back with the towel, and slapped on some red fast-dry nail polish.
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Red nails remind me that I am still my Self. When I looked at my fingers (a long shot from being perfectly polished, but still pretty) I could remember that caring for my dad is who I am, is my choice and privilege, and that many of my other activities are a commitment to having a life outside caregiving and a life to return to when my caregiving duties are complete. Even today, with my polish chipped and battered, I feel a connection with methat keeps the endless task list from feeling quite so smothering.
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Isn’t that what self-care while being a caregiver is all about, finding the things that remind us of who we are other than Caregiver? It’s easy to let our plans, our needs, our wishes, even our selves subsume into those of our loved ones. And because of the nature of Alzheimer’s and other forms of dementia, loved ones quickly lose the ability to remind us. The disease becomes all-consuming for those who are diagnosed and those who care for them.

​Long-term self-care is critical for caregivers. Not only does us make us better at caring for our loved ones, but I also see it as a flag in the ground, a declaration to the disease: You are claiming my loved one, but you won’t get me too. I won’t let you take me. I will fight for me just like I fight for my loved one. If you need ideas on how to build self-care into your day-to-day life, click this button:

​It is, hands down, the most popular image I’ve shared, with (as of today) over 1100 likes on the Alzheimer’s Caregiver Minute page, 33 comments, and 2435 shares. I’m not surprised, because Teepa Snow‘s quote is a direct challenge to the often-expressed belief that dementia robs a person of who they are, makes them say and do things that they’d find humiliating, and leaves them essentially as an empty shell. A secondary belief is that the way we as caregivers and bystanders react to someone with dementia can give them as much dignity as possible despite the disease.
Honestly? Even typing those sentences makes me sick to my stomach. That’s how much I disbelieve those perspective.
Here’s what I do believe:

• I believe that people who have dementia are still themselves, though they may not be able to express who they are in the way they once did.
• I believe that people who have dementia retain intrinsic dignity, meaning that they are just as worthy of respect and self-respect as they ever have been.
• I believe that people who have dementia say and do things that are out of character because the disease alters and damages the brain.
• I believe that the “out of character” behaviors are no more humiliating than any other unpleasant by-product of disease. Falling to the floor and thrashing around for no reason might be humiliating; falling to the floor and thrashing around because of a tumor-induced seizure is not humiliating. A style of walking that would be embarrassing for someone with full physical capability loses any negative tinge for someone who is walking as best he can due to a disability.
• I believe that the way we respond to a person who has dementia can affirm who they are or strip them of their identity.
• I believe that the way we respond to a person who has dementia reveals the degree to which we feel they are worthy of respect.

I am sad to admit that there have been times when I was embarrassed by my father’s Alzheimer’s-induced behavior. I was embarrassed when he yelled at someone working at the local Social Security Office when we were trying to get him properly enrolled in Medicare. I was embarrassed when he spoke with a friend and I saw their confusion because his words didn’t make any sense at all. I was embarrassed when his disinhibition allowed him to say things to people that he never would but for the disease. In each of those instances, I was embarrassed because I didn’t think my father was behaving appropriately and I apologized for his behavior. And my embarrassment and apology meant that in those moments, I did not see him as worthy of respect--my reaction robbed him of his dignity. Typing that sentence makes me sick to my stomach, too.
As I came to realize that those and other behaviors (eating with his hands, for example) were driven by the disease, I realized that he was doing the very best that he could with his eroding brain. When he says or does things that aren’t appropriate according to our ordinary social mores, I might explain so that others can understand that we are seeing a disease in action, but I no longer apologize. My father is disabled, and his disability is not inconsistent with dignity.
So, what does it mean to treat a
person who has dementia with dignity?

• Speak to a person who has dementia like an adult, not like a child. It may be necessary to use simple language or even to use gestures or images instead of words, but there’s an underlying respect for the life experience and perspective of an adult, even if that’s compromised by the effects of dementia.
• Include the person who has dementia in the conversation. Tell stories about your loved one that you can enjoy together, but don’t talk around the person. One of the most embarrassing exchanges I was party to was when a friend visited very early in my dad’s disease progression and asked me how my dad was. I turned to my dad, asked how he was feeling, and he answered. Not catching the hint, the friend continued to ask me questions that should have been directed to my dad. I was embarrassed for the friend, not for my father.
• Whenever possible, get to eye-level with a person who has dementia. Standing over someone can make him or her feel intimidated, but sitting or kneeling so you’re eye-to-eye creates inclusion.
• Listen to a person who has dementia, and don’t interrupt. Especially if language has been affected, it may be difficult for a person who has dementia to communicate. Take a deep breath, slow down your own reactions, and listen actively for the meaning behind the words.
• Offer options to a person who has dementia. As the disease progresses, ask yes-or-no questions (“Would you like some lemonade?”) instead of asking an open-ended question (“What would you like to drink?”), but give choices when you can.
• Help a person who has dementia with tasks, but don’t take over tasks she can accomplish. Break down the task into small steps, such as setting out the forks, then setting out the knives, then setting out the spoons instead of setting the table. Letting your loved one do as much as possible will help to maintain those abilities as long as possible and will allow your loved one to feel useful. That sense of being useful may be a component of one’s dignity.
• Give positive feedback whenever possible. A person who has dementia may lose confidence in himself because of losses as the disease progresses. Encourage actions that will help to improve self-confidence and comment. My father can’t do a lot these days, but he loves to pet my dog, and my dog loves it, so I remind him how great he is at caring for Gracie.
• Distinguish between words and behavior consistent with who your loved one is and words or behaviors that are the result of the disease. It’s hard, so hard, to remember that the outrageously nasty thing a loved one just said came from the disease and not from the person who loves you. And it’s painful when a loved one no longer cares about family photos or traditions. Remind yourself that it’s the disease, not the person you love.
• Interact with your loved one as he or she is now, not as he or she used to be. The very best tip for dealing with dementia is staying relentlessly present to life today, letting go of what life used to be, and not anticipating what it will be. That’s a gift for your loved one and for yourself. I have cried more tears than I can count wishing to go back or fearing what may happen, and those times are absolutely wasted. When I can be with my dad as he is today without comparison to another time, we have the opportunity to connect and share some special moments.

There may be specialized instances of treating a person who has dementia with dignity (in bathing, helping with incontinence, and so on) but these general principles are a good start. What would you add? How do you respect your loved one’s dignity? And if you believe that dementia has robbed your loved one of his or her dignity (and you’ve waded through my arguments to the contrary  ) how do you work to restore that dignity?

 I recently read an article titled How Americans’ refusal to talk about death hurts the elderly. It’s a difficult article to read, in part because it points of that although lifespan has increased significantly over the last 100 years, end of life looks very different than it used to. Before the recent medical advances, at a certain age, illness or injury brought on a fairly quick death. Now, we live longer but we also linger longer, in ways that often reduce autonomy and the send of self.

It’s important to ask our parents (and our peers) what healthcare and lifestyle they would want at an advanced age, in the face of a terminal illness that might be or include dementia, to address a potentially curable disease if the treatment would cause greatdiscomfort. Different people have different standards about quality of life, and the only way we’ll know is by asking.

But those discussion are difficult — maybe even terrifying to initiate — and so decision points often arise without the benefit of those conversations. Then what? Quality of life suffers, depending on your definition of quality of life.

“Living too long is also a loss,” he writes. “It renders many of us, if not disabled, then faltering and declining, a state that may not be worse than death but is nonetheless deprived.”

Most of us look at nursing homes — with their scheduled meals, constant supervision, adult diapers, wheelchair-bound residents, and depressing bingo nights and we think: I do not want that. I do not want to give up control over my own life, my ability to see the people I want to see and do the things I want to do. I do not want to live a life where I can’t dress myself, where I’m not allowed to feed myself, where I’m barred from living any semblance of the life that I live right now.

And yet, nursing homes are full. Adult children work hard to keep their parents safe, and society at large acknowledges that as right and proper. And so it is — few people, if any, would argue that we don’t have a duty ensure that our aging parents receive the care they need.
The article includes a game-changing thought:

[Author Atul] Gawande speaks with Keren Wilson, the woman who opened the country’s first assisted-living facility. And she gave him one of those quotes that every reporter dreams of — a single sentence where, after hearing it, you can’t ever look at the issue in the same way again. “We want autonomy for ourselves and safety for those we love,” she says.

It’s just that grown children and their elderly parents often have conflicting views of what matters at the end of life. Children often want every precaution taken to prevent injuries and falls. The elderly often want to live as autonomous a life as they can, even if it entails more risk.

I know this to be true. My father loved to walk in our neighborhood, and the neighborhood is well-traveled and safe. A couple of years after his diagnosis, I started to worry that he might get lost, and so I insisted that he walk with me or someone else. He balked, no doubt wanting his privacy and independence. And so I found a tracking device that I could slip into his pocket and watch his progress on my phone in real-time. I’d tested the product and found it to be very good: I could see on the map exactly where it was, so I’d know if my dad wandered and I’d know where to find him. Ah, safety.

On June 14, 2014, my dad wanted to take a walk alone. I was worried, but I knew that he hated being stuck in the house, and on that day he wouldn’t even consider letting me walk with him. We’d argued about it for a few days, and on June 14, I gave him a hug and slipped the tracker in his pocket, then held my breath as he went for a walk. I had told my friends that the benefit of letting him be outside where he could grab a cup of coffee or a sandwich and be along with his thoughts was worth the risk, that I knew the dangers and knew that the benefit to him far outweighed them. On June 14, my dad fell while he was out walking, and that fall precipitated a 17-day hospital stay. I didn’t think he would survive, but he did. He required 24-hour care after that and has not been able to leave the house alone again, something that angered him greatly. He suffered a literal fall from independence. And as I sat by his bed day after day in ICU, I wondered if I had made the right decision.

Reading the article and finding the quote weighing autonomy against safety has helped me to answer that question. My dad has always been fiercely independent, and being trapped at home when he could have gone out would have been a metaphorical death to him. As awful as the result was, I’m glad that he had so many of the walks he loved. My gut led me to the right decision. And as often as I’ve come back to it and second-guessed myself, I know his autonomy mattered more than the risk of a fall. Would I feel the same if he’d died? I’m glad I don’t know. This, of course, isn’t to suggest that there’s no guilt (I suppose I’ll always feel regret and guilt about how June 14 went down), but I know I made the decisions that my dad would have made if he could have understood the risks and rewards.
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But that’s my dad, and that’s me. That might or might not be you and your parent. Do you know what you parent wants? Can you weigh autonomy vs. safety and feel confident in the decisions you make as a result? Have you had the conversations that will guide those decisions? If not and if your parent is still cognitively able, have the conversations now. Today. Don’t wait. If you missed the opportunity, think about how your parent lived when all of the choices were open to him or her, and use that knowledge to guide your decisions.

It isn’t easy, but that (in my view) is our real duty to our parents: to help them live as much of the life they want, the way they want, as long as they can.

My dad used to get stuck in negative stories. He would hear bad news — anything from a car crash that injured a local family to global tragedy — and he would take the story in, make it personal event if it didn’t actually affect him, and be unable to move on to another topic. I dreaded his finding out anything bad, because I knew he would be anywhere from sad to distraught. After trial and error, I figured out three steps to take that would help him either move past the news or at least deal with it in a way that would cause less distress.

1. Stop the inflow of negative news.
2. Reassure. Tell your parent that everyone is safe. Even if that isn’t true, you may want to “fibulate,” or tell the lie in service to the person you’re caring for. To my mind, it’s better for them to believe that all is well than to be frightened and unable to move through the fear. (And it should go without saying that you’re responsible for your parent’s safety, so you’ll be in the best position to take whatever precautions are necessary, if any.)
3. Distract. Point out less alarming things and try to grab your parent’s attention elsewhere.

These steps are fluid, and you may need to move back and forth among them or be prepared to stay on one step for some time. Being prepared with these steps will help you to help your parent.
What works for you? Please comment below with any tips, ideas, or questions you have.
And please visit the Alzheimer’s Caregiver Minute Facebook page for inspiration and tips, then join the closed ACM Exchange Facebook group to find specific answers and guidance to your caregiving questions.

-by Julie Fleming

I recently found an interesting article about using sensory cues to figure out what’s going on with someone who has dementia. Although this “clinical pearl” from Teepa Snow is intended for professional caregivers, the information is equally valid for family caregivers. Here’s why it matters that we learn to observe and interpret these cues:

If we truly understand [that everything changes for someone who has dementia in terms of their abilities for visual and auditory processing and comprehension, as well as the sense of touch, smell and taste] and are willing to observe their abilities and stretch ourselves by looking at what’s happening through the lens of curiosity, we can further understand and choose to support and care for others in ways that make more sense.

For instance, knowing that brain changes due to dementia can change the scope of someone’s visual perception allows you to make some inferences about what’s going on based on where they’re looking. It also allows you to understand that they may not be able to see you if you sit next to them, so you can instead sit directly in front of them to create a better opportunity to engagement. That makes you a much better caregiver.

Read this short article to get a good grounding of how you can interpret and work with changed sensory cues.

-by Julie Fleming

We all have stories about Alzheimer’s, some funny, some tragic, some painful… And we need to laugh together as often as possible. For today’s Real Alzheimer’s Talk, I’m sharing one of my favorite funny stories.

Please share yours as well, either in the comments below, by joining our Facebook group ACM Exchange, or by creating your own video and tagging it with #RealALZTalk. We need to share our stories, so no one affected by Alzheimer’s feels alone and so we break the silence around dementia.

You’ll probably remember the difficult moments you experience as an Alzheimer’s caregiver with no challenge. The happy moments, though, tend to fade more easily. And yet, it’s the good memories that will sustain you when you’re overwhelmed or exhausted.
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Keep a record of the happy moments in a journal (hardcopy or electronic) so you can remember the positive times you and your parent share.

​Your parent with Alzheimer’s will likely have a hospital stay at some point, and there are three critical steps you need to take:

1. Let hospital staff know your parents has Alzheimer’s
2. Get your parents’ advance directive on file and be sure everyone is clear about its meaning
3. Make the hospital room as familiar as you can

Watch this video for more on advance directives and understanding your parent’s wishes.

by - Julie Fleming

​Surviving Alzheimer’s: Practical  Tips and Soul-Saving Wisdom for Caregivers  appealed to me largely because I found it at a time when I wasn’t sure I would survive my father’s illness. It offers bite-sized tips and stories with support and instruction, making it easy to read in short bits of time. I also appreciated the emphasis on addressing stress and increasing quality of life for both the person with Alzheimer’s and those caring for him. The book teaches a problem-solving framework that will support you throughout your caregiving.
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by - Julie Fleming
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I highlighted A Caregiver’s Guide to Alzheimer’s Disease and read back through my highlights periodically to refresh my own memory. Logically organized, you’ll find it worthwhile to read through the book and then make your own lists of practices to adopt. It’s easy to dip in and out, which makes reading it feasible even if you only have a couple of minutes at a time.

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by - Julie Fleming

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When I found Early Stages, my father had progressed through the stages it addresses. But the lessons are useful even later in the disease because it’s important to understand the progression. It won’t carry you into the depths of caring for your loved one who has the disease, but it will give you a necessary foundation, and if your parent is in the early stages of the disease, this is a must-read book.

​The take-away:

1. Talk with an attorney to be sure you have the proper legal documents in place.
2. Talk with your parent’s doctor to be sure you understand his or her health conditions and their likely progression.
3. Talk with your parent (or reflect on what you know based on your parent’s comments over time) and find out what they do and don’t want when it comes to medical care. Specifically, how much treatment do they want, and will there come a time when they’d prefer not to be treated even if that decision likely means shortening their lifespan?

by Julie Fleming

Teepa Snow is one of the best Alzheimer’s educators I’ve ever met. She combines a deep understanding of the science behind the disease with an equally deep understanding of people, and the result is a caring and effective approach to caring for those who have Alzheimer’s Disease and other dementias.
The video Challenging Behaviors will walk you through how to think about troubling behaviors and how to solve the needs that underlie them.
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I highly recommend all of Teepa Snow’s training DVDs, which you can find here.