Alzheimer’s brings both a ‘spring of hope’ and ‘winter of despair’
How dementia leads to a dichotomy of seasons and experiences
“It was the best of times, it was the worst of times, it was the age of wisdom, it was the age of foolishness, it was the epoch of belief, it was the epoch of incredulity, it was the season of Light, it was the season of Darkness, it was the spring of hope, it was the winter of despair … .”
Years ago, my parents were enjoying life in retirement. For them, this phase meant volunteering with nonprofit organizations, busying themselves with their home and garden, and traveling to visit their children and grandchildren. Life was good — not that it wasn’t before, but they’d looked forward to this season of life and were enjoying it to the fullest.
‘Epoch of incredulity’
An Alzheimer’s diagnosis is often met with incredulity, a big word for “disbelief” — or, for some, “denial.” Such a reaction isn’t surprising, as denial is also the first stage of grief.
When my late mother was diagnosed, she responded with denial. After all, she felt good, was able to do her daily tasks, and functioned well around friends and family. The rest of our family felt sadness because we couldn’t help but notice slight changes, so the diagnosis made sense to us.
Initially, my father noticed that my mother was exhibiting signs of forgetfulness. At that point, however, Mom didn’t receive an accurate or reliable cognitive assessment. Her primary care provider asked a handful of questions that Mom, like many people in the early stages of Alzheimer’s, was able to answer. This success may have contributed to her denial and given my father false hope.
Our family’s experience isn’t unique.
‘Age of wisdom’
Despite increasing knowledge and research about the disease, too many people with Alzheimer’s and other forms of dementia remain undiagnosed.
The subject was covered in a 2022 article, “Barriers and Best Practices in Disclosing a Dementia Diagnosis: A Clinician Interview Study,” published in the journal Health Services Insights. As the article’s abstract notes, “Research suggests … that only a fraction of individuals with dementia receive a diagnosis and patients and families often feel the information is poorly explained.”
According to the clinicians involved in the study, some barriers they face in disclosing a dementia diagnosis include:
- Difficulty delivering bad news
- Difficulty communicating uncertainty
- Lack of time
- Concern about how the patient and the patient’s family will respond.
Patients and caregivers may be comforted by comments such as “memory loss is a natural part of aging” and “everyone forgets things now and again.” While that’s true and the risks do increase with age, Alzheimer’s isn’t a natural result of aging. Failing to diagnose it doesn’t soften the blow for the patients or their families. Eventually, they must face the disease.
My mother’s doctor was kind and competent, but he dropped the ball when it was time to diagnose her dementia. Perhaps he struggled with some of the barriers listed above, or maybe he lacked the training to recognize the signs of the disease.
Seasons of light and darkness
Alzheimer’s disease is a devastating season. It’s dim, sometimes dark, and can deliver you to the brink of despair. But even in the worst of times, there’s hope.
While I was caring for my mother, some days grew dim, and my family struggled with sadness as her disease progressed. But we also clung to hope, and in a season of semidarkness, there was light.
Every day with Alzheimer’s is a challenge, but not every day is full of despair. It’s easy to focus on what we’re losing; the key is to recognize and rejoice in whatever light remains.
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.