Manifesto for Dementia with Dignity
This is a manifesto for my book, Dementia With Dignity. It explains what it is like to experience dementia. It’s important that we keep in mind that dementia is a condition, one that is progressive and that we cannot cure with medications. Please take some time to consider each statement below and think about what your loved one is experiencing as their dementia progresses. Keep in mind that our actions and words reflect our feelings, not a diagnosis we may have been given. And when someone is losing cognitive skills they’ve relied upon their whole life, they will be distressed.
#1 “Let me off the hook.”
No, I can’t remember that. No, I don’t know who that is. No, I can’t figure out how to do this. Please stop being surprised when I cannot recall something or understand something. It is irrational to think that I will remember when I’m losing my memory skills. It’s even more nonsensical to think that I can understand your explanations when I’m losing my rational thinking skills. I will continue to remember less and continue to understand less. It hurts me when you repeatedly test me and show me that I’m failing.
And please, please stop trying to teach me things. I am losing the ability to learn new things. I won’t ever get better at remembering, or at reasoning, or at following a list of instructions. Don’t quiz me. I need you to partner with me, not correct and instruct me. I need you to accept my diminishing skills and help me cope.
#2: “See me. I’m not gone yet.”
I am me. I’m still myself. I may be losing my memory and memories, but I am still experiencing life and fully able to enjoy the present. Please understand that not being able to recall something or report it doesn’t mean the experience didn’t happen. Even if I don’t remember what we said and did this morning, it doesn’t mean I didn’t experience it with you, and that that experience will affect my mood going forward. I was just as fully there as you were—maybe more so—and I am fully here in this moment, too. But only you can make it beautiful.
#3: “Help me, don’t prevent me.”
We have two sets of thinking skills and I’m only losing the secondary set. I’m losing rational thought but I am not losing intuitive thought. Please understand the difference. Rational thought is all about manipulating facts. It helps us organize information, check off lists, see cause and effect, evaluate, compare, and come to decisions. You’re right. I’m becoming less able to do those kinds of things. I need your help with those.
But I am not losing my intuitive thought processes. I can read your expression and body language very, very well. I know how you feel and I know how I feel, even if I can’t think of the right word to express it. I can enjoy beauty in all its forms. I can see, hear, touch, feel touch, smell and taste. Please help me explore all the beauty this world has to offer. I want to experience it with you. Don’t lock me away or isolate me in hopes of keeping me safe. I need beauty and companionship more than ever.
#4: “Show me the good.”
When you bring me sorrow, I have no defenses. I cannot recall or analyze why you might be sad, nor reason you or myself out of it. I can only experience what you bring me. When you are irritated with me, I cannot use cause and effect to understand why. I can only reflect it back to you. When you are overcome with worry, I cannot form a plan to help you or lighten your load like I used to. All I can do is absorb your negativity and amplify it. I am like a sponge to your moods.
So please bring me the good things in life—your love, your laughter, your companionship. I will reflect it back to you twofold. That I can do.
#5: “Join me in the intuitive world.”
It’s wonderful over here! You wouldn’t believe how much joy there can be! I am living in the present moment. I have mastered effortlessly (because I have no option) what people spend decades using meditation to achieve. I am here, in the now, fully, with no distractions from thoughts about the past or future. Come join me. You will find beauty in every direction too, if you’ll just slow down and look, really look, and be, here beside me. I feel everything so deeply, so clearly—now that I am without rational thought or memory to distract me.
Come join me—even if only for a minute or two. I would be so happy to enjoy it with you (ourselves or with a loved one).
See our dementia roadmap for families: “Caring for Someone with Dementia at Home” for dementia care tips:
It is frustrating and scary to have dementia. Those who realize that they are losing memory and thinking skills will be afraid, embarrassed and grieving. Those who are not able to recognize that they are losing cognitive abilities will think that others are picking on them or are trying to trick them—paranoia and anger is inevitable.
People experiencing dementia are still the same people, they are just losing some abilities (not all!) and experiencing the emotional distress that any of us would if we found ourselves unable to do the things that we’ve been doing our whole lives. Most older adults have become used to being an expert in many respects and they will, naturally, take offense when others—especially people younger than themselves—correct them and boss them around.
There are many things that their companions can do to help keep them safe and restore their sense of well-being. The DAWN Method can help you to understand what is happening when dementia enters a loved one’s life, and can teach you how to stop upsetting them and inadvertently embarrassing them. The DAWN Method will help you match your expectations to your loved one’s new reality so that you both experience less stress.
5 thoughts on “What is it like to have dementia?”
Do you think that people with dementia would enjoy longer visits with silence in between conversations, or short visits?
This blog post was super helpful, and I’ll definitely be using some of these tips and keeping them in mind as I interact with family members and patients with dementia, as lately I’ve been having a lot of trouble with understanding them and what they want. Thank you for clearing up so many things for me!
The length of the visit or conversation isn’t nearly as important as whether your conversation is designed to enable someone who has only their intuitive thought processes to join in. If you talk only about what they can see, hear, feel, taste or smell they can take part. Point out beauty, be a spectator of life unfolding around you, be a partner in experiencing what is happening right there, in the present. We use our intuitive thought processes to enjoy sensory information and beauty.
We also use them to interpret our companion’s feelings. So use your body language, expressions and intonation to communicate that you are happy to be there and enjoy the present with them.
Thank you so much!
Do you think that they would get bored of conversing with you or being with you for 3 hours straight though?
The key to being a good companion for someone who has dementia is in becoming aware of what their needs and preferences are. Whether you are with a person who is a child or an adult, a healthy person or someone with dementia, it’s not too difficult to discern whether they are enjoying the conversation, would like to do something more active, or would prefer some time alone.
As caregivers and people who love someone who has dementia, it’s important to think about their needs for sensory and social stimulation. We all differ in how much and what is best for us. Whether someone would want to have another person present for three hours would depend first upon whether they were more introverted or extroverted, but everyone needs sensory stimulation, too, not just companionship.
The DAWN Method uses the habilitative approach, an experiential model, and is person-centered in its philosophy. My book isn’t out yet, but you might take a look at ‘Learning to Speak Alzheimer’s’ by Joanne Koenig Coste to learn more about providing person-centered care.
You know, I don’t think we should post it, but tell me what you think of my response, too.
the DAWN Method
I think that your responses are really helpful, so thank you for all of your advice haha. 🙂
In real life, I’m actually really bad with social cues, which is why I ask all these questions I guess haha…sorry if they’re a hassle to answer sometimes. If you have any suggestions on where I should post my questions, I’d be happy to do it on there instead of on here~
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