Everything I Never Wanted to Know About Memory Loss
A Daughter's Guide to Understanding Cognitive Decline
In the year before he died, my dad began to have hallucinations. Wild stories from his hospital bed where lay with a broken leg, recalling a trek he took underneath the Fremont bridge the night before. The wildest cases were when he was hospitalized for his increasingly common physical ailments. On one occasion, my normally jovial and chill dad became convinced that the nurses were conspiring against him, and that someone was attempting to kidnap my children. Later he would be back to (mostly) normal, and would apologize for the outburst - though bits of the fabricated story would remain woven into his reality. Even then, it was too tempting to blame the medications and anesthesia.
A few years before, when my step dad (my dad’s husband) had initially started talking to us about his concerns with my dad’s memory and cognitive function, my husband and I admittedly thought it was exaggerated. “My dad can be a little… aloof, right?” I reasoned. “He seems ok… maybe a little more forgetful.”
“He’s stopped reading. He watches YouTube videos all day. And he gets confused and quiet in conversations. He used to be the household tech guy, and now he can’t seem to figure out his computer or manage any of our finances.”
Sure there were signs, but we remained skeptical, perhaps blinded by optimism. Still, my mind began to replay the increasingly offhand remarks, disengagement in conversations, and his rapidly building (yet unexplained) physical limitations.
A few years before the conversation with my stepdad, my mother had been driving, traveling, hosting book club and generally living an independent retired life - but there had also been red flags. In one moment of vulnerability, she shared a story about driving and suddenly forgetting where she was, and where she was going, in the town she had lived in for over forty years. She had to pull over and wait until she figured out how to get home.
Later, one of my mom’s closest friends called to tell me that she was concerned - my mom was acting strange. Inviting people over for dinner, and then not being able to prepare the meal (she was an excellent cook) or saying she would be somewhere and forgetting completely. By the time I fully discovered what was going on, she had a lien on her condo and was living in dissaray - but boy had she hidden it well. She is the kind of woman you don’t dare try to control or critique, who kept everyone at arm’s length, which is how she resisted help as long as she did.
Many people slipping into cognitive decline are able to successfully mask symptoms for a period of time when things are changing, and even beyond, if you don’t know what to look for. They are often in and out of normalcy and confusion, and can get by pretty well when they are within a familiar context and routine. Some days are better than others, and while change can make it worse, those around who don’t have context may not recognize the impairment at all. For those close to them, there is a constant second-guessing, doubting the severity of memory loss and declining executive function. Especially because those experiencing dementia can be defensive and in denial. This can be crazy-making for those of us trying to care for them.
While trying to make sense of these changes in others, we often fall into fear for our own futures. We are constantly hearing that dementia is on the rise globally.1 Maybe it’s a new awareness given the recent experience with my parents, but it seems there’s a headline every day about Alzheimers, reminding us of this cruel and indiscriminate disease. But here’s the reality that we don’t usually hear in the headlines: our dementia risk isn’t really increasing aside from the “risk” of living longer. Actual prevalence and incidence are decreasing when you control for age.
While there are certain genetic components of dementia, particularly Alzheimers, the largest risk factor remains simply aging. The global population is increasingly skewing older, which largely explains the higher number of cases.
The Lancet conducted a systematic review on changes in incidence of dementia and estimated that “40% of dementia cases were associated with 12 potentially modifiable risk factors—namely, less education, hypertension, hearing impairment, smoking, obesity, depression, physical inactivity, diabetes, low social contact, excessive alcohol consumption, traumatic brain injury, and air pollution.”
The review also found that in high income countries, where these modifiable risk factors have been curbed, there has in fact been an overall decrease in age adjusted dementia incidence and prevalence.
Most of us want to live to a ripe old age, but to me the idea of losing my mind before my body seemed a terrifying prospect that I became someone obsessed with avoiding after my mother’s, and then my father’s diagnosis. But with time and greater understanding, I’ve grown somewhat less fearful. While the initial tendency is to ignore all of these uncomfortable, messy topics related to aging and health, ultimately knowledge is empowering.
I have found it both interesting and helpful to learn about the different types of dementia. I know that my mom had some strokes and has vascular dementia. I have a theory that, given his hallucinations, physical tremors and other symptoms, my dad suffered Lewy Body dementia - even though it was never diagnosed. I wish I had known more about what to look for, and had better understood how to identify, manage, mitigate this cruel disease. I’ll share a bit about the types of dementia and what they might look like in case you, too are curious.
Types of dementia
Alzheimer's is the most prevalent and well-know form, and begins by gently erasing recent memories while leaving long term ones intact. Over time, it restructures daily life, creating challenges with spatial orientation and planning and organizing even basic daily tasks.
Vascular dementia emerges in the aftermath of restricted blood flow to the brain, often following strokes or small vessel disease. Unlike Alzheimer's gradual progression, it tends to advance in noticeable steps. This is what my mother suffers from after having several small strokes.
Lewy body dementia brings a unique blend of symptoms, including cognitive changes but also vivid visual hallucinations and fluctuating alertness. Those affected might experience moments of striking clarity followed by periods of confusion, while their movement becomes increasingly deliberate and they often exhibit Parkinsons-like physical symptoms like tremors.
Frontotemporal dementia often begins earlier in life (45-65), and primarily affects personality and behavior, transforming social interactions and emotional responses, while leaving memory largely intact until later stages. This form particularly challenges our understanding of identity and relationship dynamics.
Mixed dementia weaves together multiple types, most commonly Alzheimer's and vascular dementia.
It can feel so confusing and isolating when you’re in the throws of new and accelerating dementia symptoms. Things I’ve found especially challenging and uncomfortable to do are:
Explain what’s going on with grandpa to your kids and even other adults who don’t have the full context.
Know that the stories you’re listing to someone tell with absolute confidence are in fact, fabricated. And knowing when to offer corrections and when to let it go (hint: almost always let it go).
Repeat the same information - or listen to the same stories - over and over, as if it’s the first time.
Plan for scenarios without letting your mind go down the “what if” doom spiral that imagines your children or family in the same position one day.
But with time, you figure it out, it becomes a more natural part of your evolving relationship with this person.
And I find some peace of mind knowing that I’m controlling what I can for my own cognitive health: taking care of my physical health, exercising, eating relatively healthy, and spending time with other humans.
Have you cared for someone with dementia? Do you have questions or advice for others? Please share below!
I lost my father to Lewy body and I watched the progression. It is horrible to see the person you love trying to peek from behind a cloud that only grows thicker.
It is also so very important that we talk about it openly because, as Dr Ellen Langer would tell us, casting aside the fear that we may end up in that same place someday only tells our brains that we expect it as the likely outcome.
Changes in cognition are common but we really do need to stop with the everyday excuse of “aging” meaning we should expect, welcome, and even resign ourselves to the forward march of time?
Neat article, Anna. THIS 'But here’s the reality that we don’t usually hear in the headlines: our dementia risk isn’t really increasing aside from the “risk” of living longer. Actual prevalence and incidence are decreasing when you control for age.' interesting, I haven't looked at the most recent stats.