Changing the Dementia Conversation: Respecting Loved Ones for Who They Were, Who They Are, Who They Still Can Be
What is “tragedy talk”? When it comes to dementia, it’s the kind of gloomy, hyper-pessimistic dialogue we all tend to use, treating those with cognitive decline, not as individuals, but as specimens. Once a person begins exhibiting signs of cognitive decline, everything becomes past tense, as though the person we know and love no longer exists.
But, say spouses and other advocates for those with dementia, that type of extreme negativity can’t be the last word. Instead, those with dementia, even if they are impaired, can often function and contribute at a rich and meaningful level. To flesh out this encouraging perspective, we turn to this recent article from NextAvenue in which writer and consultant Myrna Marofsky offers her own view, based on extremely personal experience. If someone you love is experiencing cognitive decline, Marofsky’s views just might help you adjust your own.
“Tragedy Talk” Begins at the First Diagnosis
Marofsky starts the article with her own experience of “tragedy talk.”
“I heard much of it after my husband Larry received his dementia diagnosis,” she writes. “It began at the first meeting with our memory team — a doctor, social worker and occupational therapist delivered a generic owner’s manual about dementia. It talked of continued decline and need for care and ended with a bunch of pamphlets and items creating an ominous To Do list.”
Surrounded by worried family hoping for guidance, Marofsky felt that her husband, Larry, was suddenly reduced (in her words) to a specimen, not a loving, capable human being. They were drowning in medical facts, but very little—if any—encouragement about what was still possible.
“There were no suggestions [that] there could still be good times while knowing there would be many hard ones,” Marofsky writes. “They had no idea who we were, our life, or how our heart was breaking. They didn’t know because they didn’t ask.”
Powerfully Negative Words Make the Disease Worse
Research shows that the words we use have incredible power over the way we perceive our situations, especially difficult ones. In some cases, those words can have tangible effects, too.
Marofsky explains, “Even the AMA (American Medical Association) agrees that the ‘tragedy discourse’ surrounding dementia directly harms the impact of the disease ‘above and beyond the pathology.’ Not only does this negativity stigmatize those with dementia, making them feel less than others, but it also causes care partners to feel hopeless.”
Because of the weight placed on a dementia diagnosis, it is seen as a crisis by the broader community. “Yet heartfelt words of empathy, love and hope are missing from our conversations. Words are powerful. They cannot alter the reality around dementia but transform how we accept and live through it,” Marofsky writes.
Changing Her Words Changed Her Attitude
Marofsky learned very quickly that shifting the way she spoke about Larry’s disease changed her attitude. Instead of focusing on what she was losing, she learned to embrace what she still had: Larry’s autonomy (with modifications) and a loving relationship. “When we reframe what we hear and help others do the same, we can change the conversations around and about dementia,” she writes.
One example that Marofsky raises is the negative phrase “he can’t.” This phrase would morph into “we can’t,” which would then evolve into “life is over as we knew it.”
“Let’s look at this differently,” she writes, using phrases like, “Are there conditions where he could?” “What are the chances that things can go right?” and “Let’s try it.”
“This shift in perspective allows for possibilities rather than triggering emotions of defeat,” she adds. “With this mind shift, the chances of having some good years, moments of pleasure or simply chances to see flowers bloom and watch the sunset together are within reach.”
Look For Daily Doses of Gratitude
Marofsky next turns her attention to the catastrophic but common phrase describing dementia as “the long goodbye.”
“Of course, there is loss after loss with all the associated grief, but if we constantly see through the lens of saying goodbye, no joy or memories will be made,” she writes. “What if dementia is the process of finding daily doses of gratitude?”
Negative words concerning dementia have a recognized impact far beyond the U.S. In fact, in the UK, professionals have coined a term, “dementia-ism”, to describe the explicit or implicit bias of how people with dementia are viewed.
“It’s easy to recognize,” Marofsky writes. “You hear it as ‘he will never know.’ You see it when someone with dementia becomes invisible to someone beside them. ‘Dementia-ism’ could be a doctor who ascribes any medical question to the progression of dementia, even an ingrown toenail.” It’s painfully common.
Intentional Effort Required to Overcome Tragedy Talk
But Marofsky isn’t chiefly concerned with changing our words. She’s more concerned with making us more mindful and intentional about how we speak of and think about people with dementia.
“Requesting that my husband be recognized and spoken to, asking questions of the medical professionals that forced them to dig deeper, and never allowing anyone to trick him because he wouldn’t know anyway took courage but was well worth it,” she explains. “It became, as Dr. Allen G. Power of the Research Institute for Aging says, ‘a human rights issue.’”
A New Perspective: “Caregiving” versus “Care-Living”
We all know that negativity can be contagious, even viciously so. Because of this, Marofsky had to work very hard not to let any negativity spread among friends and family after Larry’s diagnosis.
“At first, my friends heard only the heartache about our situation. Then they didn’t know what to say back,” she writes. Finally, I learned to help them help me, not by painting a rosier-than-life picture but by thanking them for their thoughtfulness and turning the subject into more enjoyable topics.”
Marofsky invites us all to change the standard term “caregiving” to “care-living”, and asks us to listen to the difference.
“Caregiving – heavy, burdensome, a job vs. ‘care-living’ – hopeful, lighter, a choice,” she writes. “This change in perspective alone would help the thousands of care partners face each day with less dread and feel a little more in control of their destiny. Maybe they would create a ‘Ta Dah’ list along with their long To Do list.”
Changing “interruptions” into “invitations” can make all the difference, Marofsky argues. “Life circumstances can’t be changed, but our words can.”
Marofsky’s closing words are very powerful, so we feel they make a fitting end to this blog post, too. “With transformative words that promote positive thinking, not audacious, but words of understanding with hints of hope, those with dementia will be respected for who they were, who they are and who they can still be,” she states. “For those on the other side of dementia, words can encourage strength and courage for the days ahead. Dementia doesn’t have to be a tragedy unless we allow it to become one.”
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(originally reported at www.nextavenue.org)