Let’s Change the Conversation Around Dementia
I call it “tragedy talk,” and I heard a lot of it after my husband Larry received his dementia diagnosis. 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, need for care, and ended with a bunch of pamphlets and items creating an ominous To Do list. Seated around the table was my family, hoping to receive some guidance for going forward in a world that was rocked off its course. Sitting right in the middle was Larry, who now had become a specimen.
We had medical facts; many we didn’t need to know at that time.
What we didn’t have were words of encouragement of what was still possible, even with some adjustments. There were no suggestions that there could still be good times while knowing there would be many hard ones.
They had no idea who we were, what our life was like, or how our heart was breaking. They didn’t know because they didn’t ask.
Even the AMA agrees that the “tragedy discourse” surrounding dementia directly harms the impact of the disease “above and beyond the pathology.” (2017). Not only does this negativity stigmatize those with dementia, making them feel less than, but it also causes care partners to feel hopeless. To the broader community, dementia is a crisis.
Dementia is not only a disease of the brain but one of the heart. Yet heartfelt words of empathy, love, and hope are missing from our conversations.
Words are powerful. They cannot alter the reality around dementia but can transform how we accept and live through it. Changing my words and conversations changed my attitude from watching myself lose things to embracing what I still had. It was how I maintained Larry’s autonomy, how I kept our loving relationship, and how I survived.
When we reframe what we hear and help others do the same, we can change the conversations around and about dementia.
Think about the words “He can’t.” Which leads to “We can’t.” Which leads to “life is over as we knew it.”
Let’s look at this differently. “Are there conditions where he could?” “What are the chances that things can go right?” “Let’s try it.” This shift in perspective allows for possibilities rather than triggering emotions of defeat. Larry had things he could do which made him feel valued. A simple rephrase avoids assumptions and looks at “capabilities,” a word seldom heard in a dementia conversation. 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.
Can you feel the dread implied in these catastrophic words “Dementia is 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, there is no joy to be had, no memories to be made. What if dementia is the process of finding daily doses of gratitude?
Words filter how we see the world and how others interact with us. Consider the term Dementia-ism, a phrase coined in the UK to describe explicit or implicit bias of how a person with dementia is viewed. It’s easy to recognize. You hear it as “He will never know.” You see it when a person with dementia becomes invisible to someone seated beside them. Dementia-ism could be a doctor who ascribes any medical question to the progression of dementia, even an ingrown toenail. To eliminate this from our conversations requires more than a change in vocabulary. It requires intention. 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. It became, as Dr. Allen G. Power says, “A human rights issue.”
Keeping our own internal and external conversations from going negative prevents those thoughts from being contagious. At first, my friends heard only the heartache about our situation. Then they didn’t know what to say back. 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 to more enjoyable topics.
Consider changing the standard term “caregiving” to “care-living.” Listen to the difference. Caregiving–heavy, burdensome, A JOB, vs. “care-living”–hopeful, lighter, A CHOICE. This change in perspective alone would help the thousands of care partners face each day with a little less dread and feeling a little more in control of their destiny. Maybe they would create a “Tah Dah” list along with their long To Do list. Maybe amidst what we call “interruptions,” we could find “invitations” to interact lovingly, slow down, and appreciate.
Life circumstances can’t be changed, but our words can. With transformative words that promote positive thinking, not audacious, but words of understanding with hints of hope, those with dementia will be respected for what they were, what they are, and what they can still be. 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.
