The California Book Club’s December selection, Goodbye, Vitamin, by author Rachel Khong, centers on a family living in Southern California and grappling with the progression of their father’s Alzheimer’s disease. Khong constructs the book as a series of journal entries written by the daughter, Ruth, that capture the emotional strains that families and caregivers often experience when their loved one seems to be slipping away and memories are no longer shared. Despite the difficult circumstances that unfold, the novel is marked by comic, touching, and philosophically intriguing set pieces.
Susan Howland, senior program director at the Alzheimer’s Association’s California Southland chapter, provides insights into the nature of Alzheimer’s, current research developments, common misconceptions about the disease’s causes, and what loved ones can anticipate and prepare for.
This Zoom interview has been edited for brevity and clarity.
How does Alzheimer’s differ from other forms of dementia?
Dementia is a word that describes a collection of changes and symptoms related to cognitive decline. It’s almost like saying somebody sneezes. You’re not 100 percent sure why somebody sneezes—there could be a lot of different reasons. Alzheimer’s disease is the most common reason why individuals over age 65 have changes in their cognition. And those changes could also be communication, navigation, reasoning, visual-spatial. A lot of different areas of the brain.
Are there any known lifestyle or genetic factors that significantly increase the risk of developing Alzheimer’s?
The risk of developing Alzheimer’s can be due to nonmodifiable risk factors. As we all grow older, our risk increases. Also, we can’t do too much about genetics. There are some genes that if you have that gene, you will develop Alzheimer’s. However, that’s a pretty small percentage of those with the disease. There are a whole host of other modifiable risk factors that can influence cognition in later life. Those can include diet, exercise, substance use, traumatic brain injury, social engagement, levels of formal education, and even environmental lifestyle factors.
What do early signs of Alzheimer’s look like?
I think the biggest challenge with Alzheimer’s disease is its pathology. The plaques, tangles, neurodegeneration are, oftentimes, occurring in the brain upwards of 20 to 25 years before someone starts to show symptoms. When someone does start to show symptoms, they’re random. It’s not like a stroke, where one day I was fine and the next day I had slurred speech, I had partial paralysis, etc. It’s changes from the baseline. Individuals who have always been able to whip up a chicken casserole suddenly take two hours longer to make that casserole, and it’s raw. Individuals who used to be able to fire off an email in 20 seconds, and it made perfect sense, now start taking 20 minutes to write that email. And then the recipient doesn’t understand it.
What are some practical ways loved ones can help an individual with Alzheimer’s on a daily basis?
Establishing a routine. Individuals who have a routine every day seem to do a little bit better—we don’t have to think, if we [have a plan to go] from point A to point B to point C to point D. Families also need to change how they communicate, and that’s difficult. If somebody forgets something, the most common thing we say is “Well, remember I already told you that.” That’s not really beneficial for either party. Changing how we interact with the individual can benefit that person as well. Preparing for potential emergencies—wandering, agitation, sundowning—putting those on the family’s radar, and being able to be a step ahead of when they might occur.
How would you recommend that caregivers balance providing support while still maintaining their own mental and physical and emotional health?
It’s a struggle for most people, but it really is about prioritizing their own health and their own needs. I always say, if you make a to-do list every day, make sure three of those things on the to-do list are for you.
What resources or support systems are available for relatives and friends of someone with Alzheimer’s?
The most important resource that we have is the 24-7 helpline. This can be called by absolutely anybody. It’s great for when you need a support group, need the 10 warning signs, and need to know about new medication. Calls where it’s two in the morning and somebody is at their wits’ end and doesn’t think they can take one more day. And we have subject-matter experts who can work with individuals. It’s at no charge, and it is in over 200 languages, to really support that family member.
What advice do you have for families trying to maintain a sense of normalcy and connection as the disease progresses?
Connections can occur in a variety of ways. As communication begins to not be as well received or not as well understood, start substituting in gentle-touch motions. Instead of saying “Please sit down,” maybe tap the seat of the chair. It doesn’t always have to be active. It just has to be something enjoyable. Instead of going for a walk or going to do something, it could be sitting in the backyard watching birds at a bird feeder. It could be applying lotion to the individual’s hand. It could be enjoying the smell of baking cookies in the kitchen. There are a lot of ways to connect that are very natural and also very person-centered and important to both the family member as well as the person living with Alzheimer’s.
How close are researchers to finding more-effective treatments or a cure?
There has been a lot of movement within the past three years around monoclonal antibodies. With Alzheimer’s disease—not the other dementias—there are plaques, tangles, which create or lead to neurodegeneration of the brain. The brain is smaller, lighter; those fluid-filled ventricle areas are larger. There’s this new class of medication that addresses the plaque in the brain. By addressing the plaque and removing it, breaking it up, or not allowing it to form, individuals almost plateau with their cognition over a period of time.
What do you wish people knew about Alzheimer’s?
There’s still a lot of love and joy and happiness that occurs when somebody has Alzheimer’s disease.•
Join us on December 12 at 5 p.m. Pacific time, when Khong will sit down with CBC host John Freeman and special guest Mimi Lok to discuss Goodbye, Vitamin. Please note that this event is on the second Thursday of the month. Register for the Zoom conversation here.
