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 … .”
Dickens begins his novel “A Tale of Two Cities” with the quote above, and when taken out of context, it reminds me of Alzheimer’s disease and some of the shocking feelings that surround a diagnosis.
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.
Enter Alzheimer’s.
‘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.
Early diagnosis is also important, as it allows patients to have access to more interventions, treatments, and support, as well as the chance to make plans for future care.
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.
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Comments
Angela Ciliberto
We need to normalise the diagnosis. Talk about it and not be ashamed of it. My belief is it’s much better to say it out loud rather than pretend it’s not happening. My husband is 73 and he told me he had Alzheimers 2 years ago. His Father had it and his Mum had vascular dementia. My parents had vascular dementia and Lewy Body dementia so my husband is the 5th person I have looked after. I tell people my husband has Alzheimers because sometimes it affects how he is perceived in social situations, at the doctors etc.
also I am appalled at the advice given to carers as it relates mainly to very old people with significant memory loss. Early stages are nothing like end stages. Everyone is different but early intervention can help. Keep them active socially and physically is very important.
For carers the exhortation to look after yourself makes me laugh. You live with this daily, nobody handles this perfectly but step one is be accepting, arguing doesn’t help, develop empathy, try to share the load. Don’t hide socially. Do get powers of attorney asap.
Ray Burow
Angela,
Couldn't agree with you more about "normalizing the diagnosis"(https://alzheimersnewstoday.com/columns/how-counter-stigma-associated-with-dementia-alzheimer-awareness-month/). In fact, everything you said is spot on. I do agree that it is difficult for carers to "look after themselves". I found it difficult too. Caregiving is a 24 hour, seven day a week job. The good news is, there are more opportunities to receive help than in the past, and an aspect of normalizing the diagnosis involves reaching out to people who may be able to come alongside you to help, even if it's for just an hour or so a week. Search Engines are great for locating help in your area, and also the Dementia Map is a global resource and a good place to find assistance. (https://alzheimersnewstoday.com/2020/12/21/dementia-map-resource-caregivers-professionals_)
Thank you so much for reading Treading Dark Waters and for your insightful comment.
Ray Burow
Sue Gordon
My mother died of Alzheimers so I decided to get tested to see if I had the gene.Her degeneration was the saddest thing I’ve ever experienced. So I was referred to a renowned neurologist who luckily was 10 miles down the highway from me in Newport Beach, CA. Dr. Wm Shankle. He order a spinal tap and the diagnosis was positive. I was in despair. The good news is that early diagnosis is important. There are so many new treatments and studies. I was lucky enough to get enrolled in a study and am taking a new drug that is inhaled, Prevagen. My latest testing after 2 years shows me at normal aging for a 73 yr old woman. I’m involved in 3 non profit organizations, take online classes, travel with hubby and have a good friend to have fun with. Life is good.
Ray Burow
Sue,
I am very sorry for your loss. As you know, my mother also passed away from Alzheimer's disease. You were so wise to get tested and I applaud you for the courage to do so. Congratulations on the good news followng testing ("normal aging for a 73 yr old woman).Your post is very encouraging and I hope readers will feel the positivity you exude and will get tested for ealy diagnosis. Life can still be good following an early diagnosis. You are living proof.
All the best!
Ray Burow