It’s a normal stage to deny an Alzheimer’s disease diagnosis
Sometimes the caregiver needs to accept their loved one's struggle with acceptance
At least 6.7 million people in the United States are living with Alzheimer’s disease, and that number is projected to climb to 13 million by 2050. On the other hand, the Alzheimer’s Association believes that the first person to be cured of Alzheimer’s is alive today. Oh, how I hope that’s true.
Perhaps you’ve been diagnosed with mild cognitive impairment and are taking steps to slow its progression, or maybe you care for a spouse, parent, or another loved one and help them fight the good fight daily. My heart and prayers extend to you.
I don’t pretend to know what it’s like to face an Alzheimer’s diagnosis personally. I don’t think it’s possible to grasp the emotions surrounding such a diagnosis unless it’s yours. Even then, is it possible to get your mind around it? I doubt it. There must be a measure of shock, followed by denial. Or perhaps denial comes first.
My dear mother was diagnosed with the early-onset form; looking back, it was a shock to me, but a tremendous shock to her. She felt fine, looked fine, and couldn’t accept her diagnosis. She denied it.
It took a lot of convincing, but my mother came around to face her Alzheimer’s early enough to make a difference by creating a plan of action and adopting a treatment regimen. Before then, I’d been impatient, wanting my mother to get on with it, to accept her diagnosis so that she could move to the next phase and get treatment. That was unfair — understandable, but still unfair. She needed time to come to grips with the disease.
Alzheimer’s doesn’t allow much time for grappling with the diagnosis. Clinical trials, for instance, are often offered to patients in the early stages of the disease, as some medications are only effective during that time. My mother entered a clinical trial that we believe assisted in slowing the disease’s progression. Please, if you or a loved one has been diagnosed with dementia, by all means, follow through with the next steps ordered by your healthcare provider.
However, if you’re a loved one of someone diagnosed, gently encourage them to move forward. Place your feet in their proverbial shoes, and try to understand what they’re going through. Gently persuade them without badgering.
It’s not you, it’s me
Stigma may be one of the greatest fears associated with an Alzheimer’s diagnosis. If you have dementia, you may fear people treating you differently once it’s revealed. Sometimes they do. I’m ashamed to admit that I did at first, and I made assumptions based on a misinterpretation.
I don’t remember what my mother was explaining to me, but I wasn’t getting it. I noted her frustration just as the light came on in my head. We were on two different wavelengths. It was a miscommunication on my part, but I’d assumed her memory loss was the issue. I think I learned from it.
As my mother’s disease progressed, more interventions on her behalf became necessary, but I held on to the fact that she was the same person. Sometimes I was wrong, and she was right. She wasn’t defined by dementia. She had real emotions, and though her thinking wasn’t always clear, she still had thoughts and opinions that deserved respect.
Society often stigmatizes Alzheimer’s disease, but family caregivers should stamp it out, especially at home with the ones we love.
Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.
I have been told that I have early onset of Alzheimer's and my doctor has giving me precisions for at least holding back the disease for now. If I were given a request for a trial of a cure or at least a medication being held, I would be very ready to try the test. I don't think this going to happen, but it's worth a try.
James, you sound a like a fighter! Keep at it with your positive look.
There are a number of studies and medical trials that are out now to hopefully slow down Alzheimer's. Please look online or try asking your medical team. I have found a number of them for my loved one and researched before choosing to see if we qualified for it.
Hang in there! And thanks so much for sharing.