How comfortable are you speaking to a person with dementia? It’s a bit disconcerting, isn’t it, when on a bright and sunny day you ask, “How are you?” and you hear, “I hate rainy days.”
Communicating with a person with dementia requires open-mindedness, compassion and the quick thinking of an improv actor. It offers caregivers a bonus benefit, too.
Fear and uncertainty hamper people without dementia (I call them PWoDs) from connecting to people with dementia (often referred to as PWDs). As a result, they miss out on what it means to live with urgency ( the diagnosis has no cure), passion and even a bit of comedy.
Two years ago, I launched the Voices of People with Dementia column at The Caregiver’s Voice to raise greater awareness. Twenty years ago, a diagnosis of dementia meant a hasty retreat into a silent and lonely world. Today, earlier diagnosis means people are still able to express their experiences, feelings and needs. As a result, we PWoDs are learning more about what it means to live with dementia and how we can support PWDs to live independent, productive and fulfilling lives.
While each individual is unique, there are areas of commonality. For example: People with dementia would often like to ask the following of PWoDs:
— Do not be afraid of me.
— Look at me and feel free to speak directly with me — not only with my caregiver.
— I may not understand you and my replies may not make sense, but I am still human.
— Dementia does not define me.
We are fortunate that the voices with dementia are being heard so we can learn from those who live with the disease. Years ago, we PWoDs figured it out as we went along and we rarely sought input from PWDs.
To reflect on the advice back then makes me feel squeamish. Our ignorance had us asking a loved one with dementia to fold the laundry. We were then to take the basket to another room, dump it out and then have our loved one repeat the process. I also feel uncomfortable reflecting on the humor of yesteryear. Thanks to greater awareness and PWD spokespeople, we hear fewer jokes about giving the same birthday card to a person with dementia, because they won’t remember.
4 Keys to Becoming a Dementia Whisperer
These four keys lay a solid foundation from which to understand, communicate with and value a person with dementia — without losing yourself in the process. The last two appear paradoxical; yet, following both will insure success.
1. When You Realize That Something May Be Wrong, Practice Kindness
If there’s one thing I’ve learned from interviewing people with dementia, it’s that they have a vivid recollection of their diagnosis. They relive it constantly — the date, the setting, the people involved, what was said and how they felt.
An urgent warning to neurologists and other members of the medical team: No matter how many times you’ve seen the symptoms and given the same diagnosis, each family is hearing your words for the first time. Some of your colleagues have shown less compassion than a judge giving a life sentence to a criminal. Be mindful of your approach when you hand out a terminal sentence. Know that your words will be permanently etched in their minds and alter the course of their lives, rippling out to their families, friends, co-workers and communities.
A similar caution for family members. While complex family relationships and history will influence your behavior, an observer might question why you are intolerant of a spouse or parent with dementia. Meanwhile, the PWD will recall your impatience and even anger with their disorientation or forgetfulness.
Bottom line: Try to be kind.
2. Understand How the Disease Affects a Person
If we don’t know about a loved one’s disease or illness, we won’t know what to expect. That means we’re driving blind. Until technology advances further, we’re sure to have accidents.
3. Unconditional Communication: It’s Not About You
With knowledge, we realize a loved one’s behavior is about the disease, not about us. The disease affects how they cope with their world. While dementia destroys brain cells, it’s hard to know which life functions will be affected and how. Just as the PWD tries to adapt in an ever-changing world, we PWoDs must be flexible. Like an improvisational artist, we’ll foster stronger relationships by focusing entirely on the care recipient with a “Yes and …” response.
This takes getting used to, because our ego and need for self-preservation often result in our reacting from a “No” or a “Yes, but …” frame of mind. “Yes, you may hate rainy days, but the sun is shining.” Such a seemingly innocent reality orienting response creates a feeling of exclusion. The use of “but” pushes one away. Instead, an inclusive response like the following embraces and builds relationships: “Yes, I also hate rainy days. I welcome days when the sun shines and we can walk outside, together.”
4. Self-Care: If I Don’t Care for Myself, I Won’t Be Able to Care for You
Paradoxically, in order to have strength enough to communicate inclusively, we need reserves. I recall reading somewhere: If you cared for your loved one the way you care for yourself, would you be arrested for neglect? I paused and considered how little I cared for myself while caring for my father with dementia. Yes, I would have been arrested for self-neglect much of the time. However, my husband and I made sure to have fun with my father, making it easier to care for him. This is not often feasible for a spouse-caregiver. Moments of fun afforded us a welcome change of routine.
Bonus benefit, especially for caregivers. When you apply the skills you’ve honed while communicating with people with dementia to other areas of your life, you’ll find your relationships will improve at home, work and in your community. Your agile communications that create feelings of inclusiveness will strengthen and raise your satisfaction when relating with others. When viewed this way, we can reasonably wonder if dementia is a role filled by some to teach the rest of us how to get on in the world.
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Lost in Translation? The Caregiver’s Guide to Being a Dementia Whisperer originally appeared on usnews.com