Dignity for a person who’s living with dementia?

​It is, hands down, the most popular image I’ve shared, with thousands of like, comments, and 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 dementia-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 is living with 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. (And I experienced plenty of medical providers who spoke to me even when my dad was capable of responding — in which case my response was more anger than embarrassment.)
  • 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?

Safety versus autonomy: How can you, as a caregiver, make the decisions your loved one would make?

I recently read an article titled How Americans’ refusal to talk about death hurts the elderlyIt’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.

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.

How to help your parent deal with bad news. What to do to avoid getting stuck in the story.

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.

Interpreting sensory cues: How Alzheimer’s caregivers can figure out what’s going on with a loved one

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.