The Tangled Neuron

What the caregiver hears

“The good news is that Alzheimer’s is now a treatable disease.  That’s why it’s so important that you bring your loved one in for a diagnosis – we can help.”

This was the main message at a seminar for caregivers from a doctor who directs a university-based Alzheimer’s center.  I went to the seminar last year looking for information to help Dad, and to hear this expert’s opinion on the latest research.

In his presentation, he used graphics I’d seen on the Aricept web site.  They showed the results of a study where patients who took Aricept for longer periods stayed at home nearly two years more than those who took it for less time.   The Aricept web site notes that “…results may be caused by other factors.”

Neither the doctor nor the web site said where this data came from, but I think it is from an article published in 2003 in the Journal of the American Geriatrics Society. 

The seminar speaker didn’t mention another recent study, called AD2000 in which researchers said “No significant benefits were seen with donepezil compared with placebo in institutionalization.” 

Three of the five sponsors for this seminar were pharmaceutical companies that manufacture or market the medications discussed.  I’m sure that would have made it awkward for the speaker to mention that the results of recent studies have been mixed, and that the benefits of these drugs are hotly debated in the medical community.  But patients and their caregivers deserve to know.

Did Aricept help Dad?

At seven o’clock in the evening, Dad was already thinking about going to bed.  He took a yellow pill out of the basket near the fridge, and got a glass of water to wash it down.

“I don’t like taking pills, but they help my brain,” he told me.

Maybe because I was visiting, Dad stayed up a little longer to play the piano, and I wandered into the living room to sit with him.  I don’t know if he remembered the four hand arrangement of “Tea for Two” we used to play.  We would laugh when we got out of sync, and pretend to push each other off the piano bench. 

He picked out the melody of an Irving Berlin tune and added a few chords, all with his right hand.  He didn’t use his left hand much anymore. 

“How deep is the ocean, how high is the sky…” I sang along.   I still loved it when he played. 

“Do you think your son could read this?”   Dad gestured to the music.  I could tell he was confusing me with my sister, whose son is learning to play the piano.  I don’t have a son. 

“I think he could read the melody, Dad,” I told him, not knowing what else to say.  He headed off to bed.  I went back into the kitchen and looked at the medicines in the basket. 

“The neurologist gave your father something for his memory,” Mom had told me two years before.  That something was Aricept, the yellow pill Dad took every night.  At first, Mom had thought he might be improving.

“He seems a little happier,” she’d told me on the phone after he’d been taking the medicine a few weeks.  Maybe she was right, but I never heard any improvement when I talked with him.  Instead, I heard his increasing frustration as he groped for words. I don’t think Aricept helped Dad at all.

A smorgasbord of dementias

I called Claes in Stockholm to tell him Dad had died.  Claes lived with my family in Connecticut as an exchange student thirty years ago.   We talked about all our good times with Dad, but also about how many in our parents' generation have dementia and how little we know about it.

When Claes first arrived in the U.S., smörgåsbord was the only Swedish word we knew, and we teased him by using the word as a kind of shorthand for many unrelated things.  A few years later, our entire family went to Sweden for his wedding , and Dad got to experience actual smörgåsbords.  He was horrified by these tables spread with 15-30 dishes.  They seemed to be dazzling arrays of food until you realized most of the dishes were made with herring, a food Dad disliked:  pickled herring:  herring with dill, herring with mustard sauce, and the famous "Jansson's temptation" (a brown and grey mix of baked herring, potatoes and onions).  While the number of choices was overwhelming, none were really appealing.  Somehow, smörgåsbord became a theme in our family life.

 

Two decades after Claes's wedding, it became clear that Dad's memory was declining.   I set up an appointment for my parents at an Alzheimer’s Disease Research Center at a major university.  Two years, four doctors and numerous tests later, we ended up with a smörgåsbord of diagnoses:  stroke, possible Alzheimer’s, iron overload, vitamin deficiency or vascular dementia.  The array of choices was overwhelming, but none were appealing.

Requesting an autopsy

My family and I sat around the table in a cold conference room down the hall from where Dad had died about an hour before.  It was three o’clock in the morning and we’d said our goodbyes to him.  Mom had to sign some paperwork before we could leave.

“We’d like to request an autopsy,” she told the doctor who had come to sign my father’s death certificate.  We had decided that an autopsy could help researchers, and might show if Dad’s dementia was caused by something my siblings and I could inherit.

“I’ll see if I can find the form,” the doctor said and left the room. 

Ten minutes later, he came back with a piece of paper and handed it to Mom. 

“Can we be specific about what we want them to look for?” she asked him, pointing to the line that said Reason for Autopsy.  He hesitated.  “I don’t have much experience with this – I’m actually a psychiatry resident.”  

We decided to draft a few words ourselves based on some of Dad’s diagnoses.  The words went something like:

Determine the cause of dementia, to include possible Alzheimer’s Disease, iron overload or cerebral amyloid angiopathy.

“What do you think about this?” I asked the doctor.  “I’ll just call the pathologist and check,” he said, dialing zero on the conference room phone.  “Do you have the number for autopsy service? Thanks.”  He dialed again.  “This is Dr. X.  We’re preparing a request for an autopsy report, and the family has some specific requests.  I’d just like to read it to you to make sure…oh,sorry.”  I wondered if he’d woken the guy up.  He read our wording, then hung up the phone and said “that will be fine.”

Maybe if Dad’s death hadn’t been so sudden, we could have made these arrangements earlier.  Either way, I hope we can somehow use the autopsy results to help others dealing with dementia.

Dad's last gift

     "Let go of my hand, please," Dad said as the emergency room technicians worked to insert a needle in his vein.  He had had a massive hemorrhagic stroke, and those were his last words.  Typical Dad - kind and polite even in the worst of circumstances.

    
     He died quietly two nights later.  "It's Dad's last gift to us," my sister Ginger said.  We all knew it was better than years of struggling with dementia.

    
     Thinking back to the people who came to Dad's memorial service or sent letters of sympathy, I'm struck by how many of them mentioned their relatives' dementia or Alzheimer's.  Some of my parent's neighbors talked about their spouses, and the clerk at the local pharmacy said her aunt had Alzheimer's.  Two of my best friends from junior high have parents with dementia.

    
Here's some scary facts:

• In the U.S., 10% of people over 65 and almost half of those over 85 have Alzheimer's.
• An estimated 24 million people worldwide have dementia - that's about the number of people who live in the state of Texas, or the entire country of Saudi Arabia.

     Alzheimer's Disease is only one type of dementia, so the number of people affected is probably much larger. 
Thinking of all the families involved, I guess we're lucky Dad died while he still enjoyed life and was relatively independent.