Questions by Gabrielle Strobel
Richard Bozanich, 50, has early onset dementia, Probable Alzheimer's Type. During his career, Bozanich was a journalist who wrote and/or edited for the Harvard Business School, the Los Angeles Times, the Dallas Morning News, and served as managing editor of Daily Variety, the entertainment industry trade publication. After receiving his diagnosis in June of 2006, Bozanich became an advocate for early stage, early onset dementia. He has traveled to Washington, DC, and Sacramento to lobby for more federal and state funding of Alzheimer's programs, and was selected to serve on the national Alzheimer Association's Early Stage Advisory Group.
Bozanich speaks to groups around the country on what it's like to live with a cognitive impairment. He is an articulate representative of a growing community of people with AD who are starting to be recognized. As awareness and diagnostic accuracy improve, they learn that they have AD at much earlier stages than was typical previously. They are younger; some can still work and drive. They still carry on activities of daily living but are profoundly disabled in specific ways. They are vocal, they are active, and they intend to change the national conversation about Alzheimer disease. Like people with more advanced AD, they have good days and bad days. On their good days they can seem almost indistinguishable from their healthy peers, yet on their bad days they are painfully aware of their dementia and disabled by it.
Bozanich co-chairs Living Our Lives, Planning Our Futures, an unprecedented symposium created by people with early stage memory loss for people with early stage memory loss, to be held 27 October 2007 in Los Angeles. Alzforum editor Gabrielle Strobel sought out Bozanich and asked him if he were willing to describe for a larger audience what it's like to live with dementia. The series below is the result of more than 6 months of e-mail correspondence. Bozanich still writes in a distinctive voice. Read his account of the effort it takes to "pass for normal" in the face of a slowly advancing disease, about the need he sees for people with early stage dementia to come together, and for society and research to address their needs. See Bozanich's review of A Film About Dementia.
ARF: When we speak on the phone, you are so fluent and well spoken that your impairment is imperceptible. It's hard to believe anything is wrong with you. Do you hear that a lot? Other people doubting you even have a problem?
RB: To repeat the adage, "If I had a dollar for every time someone said that…," well, you know the rest. Yes, initially people will say that. If they take the time to ask about my impairments and hear examples of my deficits, then they almost go to the extreme of saying, "You need to be institutionalized immediately." It is as if there is no middle ground. One is either 100 percent fine or 100 percent incompetent. In many ways, we don't allow for anything other than black and white. Dementia is a continuum. Alzheimer's has been called "The Long Goodbye," which makes sense because it is so insidious and people can appear relatively okay for quite some time. Some might withdraw and seem a little quieter, others might have some uncharacteristic behavioral changes, and others might seem more forgetful. Sadly, that often is just chalked up to, "Oh, well, he or she is just getting old," and it gets written off. I think it needs to be taken seriously and that the medical community needs to stop being afraid of giving an early diagnosis and put people on the medications that could give them much more meaningful time with their loved ones. But to go back to your question, yes, it happens. Yes, it is frustrating. And then I feel I almost have to prove myself to be incompetent, which I am not!
ARF: Hundreds of thousands of people live among us with impairments and deficits like yours. What kinds of changes would help create that middle ground?
RB: It comes down to people with dementia being willing to come out of the closet and trying to remove the stigma by showing this is not something to be ashamed of. I remember being invited to speak before a group, and afterwards I commented to a friend with dementia that I noticed some people in the crowd wiping away tears. I didn't think I was saying anything particularly sad or depressing, but she said to me, "They were doing that because there you are talking to them and they are imagining you lying in a bed unable to speak." This explanation for their reaction had not occurred to me.
When I was in Washington, DC, for the Alzheimer's Association's Public Policy Forum in March, an early onset advocate arranged for early stage people to gather in a circle one night. It was a very powerful experience. I realize that not everyone wants to or is able to be an advocate. Being sent to DC, being allowed to advocate and be among other advocates was the highlight of my trip. My gut tells me that these people were the type to become involved in issues and in their communities prior to their diagnosis. We share a passion for doing what we can for as long as we can, to get the word out that people with this disease don't need to hide. We want to get rid of the stigma that comes with this diagnosis. And it is important that we work with the Association to develop programs not only for persons with the disease, but also to offer input to care partners and professionals, because they will go back into their communities to work with our fellow travelers. We can provide insight as to what it's like to live with this disease and can give a perspective from the inside.
On March 29, 2007, I read this in the article "Living With Alzheimer's Before a Window Closes" in The New York Times:
Five million people in the United States have Alzheimer's disease, according to a study last week by the Alzheimer's Association. About half, 2.5 million, are at the early stages of the disease, other studies have found, struggling to pass for normal.
They are impaired but not helpless or demented, and now a growing number are speaking out about how it feels to be them: Silenced prematurely, or excluded from decision-making. Bristling at well-meaning loved ones who boss them around. Seeking meaningful activities to fill their days.
Out of their individual frustrations, these patients are creating a grass-roots movement to improve services and change public perceptions. And they are making a mark.
The article continues:
Last year the national office of the Alzheimer's Association declared early stage services a priority. The association now has an advisory board made up of patients, most whom have a rare, early onset form of the disease, which sometimes runs in families. People struck with dementia of various sorts in the prime of life—200,000 to 500,000, according to last week's study—have been the most aggressive advocates, experts say. They have not settled into retirement or been slowed by other infirmities, and they also came of age in an era of activism.
If it is true that 2.5 million people are at the early stages of the disease, struggling to pass for normal, that would mean roughly one-half of the estimated 5.1 million diagnosed. It is important to reach out and find these people. When my relatives were diagnosed with Alzheimer's, they were hidden away. We never saw them again. I feel an obligation to be visible and fight the stigma so that both people with Alzheimer's and their families don't see it as an embarrassment and they are truly allowed to live with Alzheimer's before that window closes.
ARF: The New York Times uses the phrase "struggling to pass for normal." Tell us about that.
RB: I wrestle with this a lot. For example, recently I was in a large parking garage in downtown L.A. I had to get an important piece of paper out of the passenger side of my car, and as I was reaching into my car a woman drove up, honked her car horn, and yelled, "Where do I park? How much does it cost to park here?" I had no idea, but because of the interruption, I forgot what I was looking for, left without my piece of paper, and that caused me lost time and frustration. It makes me sometimes wish I had a sign on my head that says, "I have Alzheimer's—please don't interrupt me." Or my Mom will send me to the store for a particular thing (mind you, I also have a list with me) and as I am about to reach for the item, a well-meaning grocery store employee will ask, "How are you today?" And in that split second it takes me to switch gears to be social and answer his question and ask him how he is, I have forgotten why I was standing there. I'll move on, go home and my Mom asks, "Where is the fat-free cottage cheese?" And I have to go back to the store. I don't think people without dementia go through this. I don't think that people without dementia are holding a list in their hand—and I literally am holding onto it for dear life—and still go home without the items on their list because someone asks, "How are you?" That is one example of having dementia and struggling to pass for normal.
ARF: Can you tell us more about the difference between "normal" and you?
RB: I realize that people without Alzheimer's or dementia forget things, too. When I am in one room and need something in another room, I literally repeat in my mind whatever that object is, say, "Blank envelope." I will sometimes even go from one room to the next room saying, "Blank envelope" over and over. When I get there and then the phone rings or a dog barks or a car horn blares or nothing happens at all—it's gone. Do this 10 times in a row and it gets beyond frustrating. When someone interrupts my train of thought after I've walked the same path nine times and their seemingly innocuous question causes me to lose my thought for the tenth time, then I lose my cool and my reaction probably seems very out of context. But they haven't been inside my head trying to hold on to something as simple as, "Blank envelope." Then I am labeled "ill-tempered" because I have lost my cool.
No matter how many times I ask nicely, "Please don't interrupt me when I am in the middle of something," people either don't remember that or think, "Well, this time I can get away with it." In this way, "passing for normal" almost works against us. We work so hard to overcompensate to fit in and to not bother other people with our forgetfulness that others don't realize the effort this takes, and that we truly need the courtesy of not being interrupted. I'm not arguing for throwing up my hands and giving in to the disease; that is not my nature. In my volunteer work, I encounter well-intentioned people who see me as highly functioning, but they don't know how hard I try to do that. They don't see the downside of it. They don't see me the two days afterward, where I am able to do nothing because my brain is fried/scrambled. And I wonder, "How much longer am I going to be able to keep this up?"
ARF: Do you really get that exhausted?
RB: Oh, yes. For example, this September I attended an Alzheimer's symposium at UC Irvine and sat with a professional whom I met doing community outreach for our conference. On the first day, he kept saying, "I would never know something is wrong with you." But at the end of the day, I went up to my hotel room at 5 p.m. and did not emerge until noon the next day. I ordered room service for dinner and breakfast. I slept for almost 12 hours. And when I tried to get up, couldn't stand up. Mind you, I had fully intended to attend the remaining sessions of the conference!
One of the doctors who presented on the first day talked about the concept of Brain Reserve and about people who seem to function as if they don't have dementia. During his lecture, Dr. Carl Cotman said: "There is enormous capacity in the brains of some individuals to compensate even with plaques and tangles." I don't mean to say that I have enormous capacity, but I do think people get fooled by what they perceive that I do. They don't see the flip side of it. Conferences are tiring for everyone, but I don't think most people wake up and are literally unable to stand. It feels as if I am using a huge amount of my brain—compensating to be able to function like a normal person for one day, and then there comes a steep price because my brain can't do it a second day. The same thing happened when I was in Chicago for the Dementia Care conference.
ARF: I am trying to imagine what it's like living with very early stage dementia.
RB: First off, in the book The Forgetting, David Shenk wrote about Dr. Alzheimer's first patient, Auguste D., who was 51 at diagnosis. She told the doctor, "I have lost myself." Those words run chills up and down my spine because that is what it feels like.
I think that is why so many people have a fear about Alzheimer's and a fear of people with the disease. They so don't want to know what it feels like that they shun the people experiencing the process of losing themselves.
I'm not saying that I was the most confident person in the world in my younger life, but there were certain things I knew that I knew. For example, I was good at math. And I always had an excellent memory. So much so that it drove some people to distraction how I remembered really minor details. That served me very well in my career as a journalist, being able to capture things from an interview and remember them to write about later. Not having that same facility and being aware of it slipping away is disturbing.
There are days when I think, "Wow, I'm doing really well today." And then it's almost as if the universe says, "Not so fast," and something out of the blue will happen that never happened before. Or a different version of an earlier symptom that I am not on guard for rears its head. (Writing this makes me laugh at myself for even thinking it would be possible to keep on guard all the time.) I miss taking my intellect and my mind for granted. I thought it would always be there for me in the same way. There are people in their nineties who are sharp as a tack. My mother is 86 and cognitively fit.
I also notice a change in how other people perceive me—as if they don't quite trust me to be on my own. I have been very independent all my life, and the thought of not being able to "do it all myself" is hard. It's not about pride so much as not wanting to complicate my life or someone else's life in them having to care for me. That weighs on me…a lot.
ARF: Can you describe the symptoms you are struggling with these days?
RB: They illustrate the distinction between "normal forgetting" and the kind of forgetting that is part of dementia. For example, how many times have you been introduced to someone new and the name doesn't stick? Normal forgetting. Forget to pick up milk on the way home from work? Normal forgetting.
But get this: I've been sending out Christmas cards since I was six. I walk into my post office to send a letter and I have no idea where the address goes, the simple task of how to mail a letter, etc. I do realize that I should know how to do this but for the life of me I have no recall. I've learned that I don't need to go into a long story stating, "In June 2006, I had a PET scan and it showed…." So I say, "Could you please tell me how one sends a letter?" And the woman behind the counter starts to laugh. Instead of being insulted or getting angry, I figure now that the best thing to do is to laugh along with her. When we're done, I say, "No, really, how do you mail a letter?" And then she told me what went where, and explained the whole process.
When I relate this story (or anecdotes like it) to friends, they always try to give me an "out," as if to say, "See, there's nothing wrong with you." They'll say, "Oh, that post office must have been so crowded and noisy. Who wouldn't be confused?" They do this because they care about me and want to make me feel better (and, also, I think to make themselves feel better). But I tell the truth: "No, you see, I go to a little volunteer post office and there was no one else in it except me and the clerk. No noise. No congestion. No music. No rush." Then they get quiet. And I think, "Okay, this time you are not going to try to make yourself feel better by trying to make me feel better and saying that there is nothing wrong with me." I have gone through the denial phase and come out the other side. Please don't make me go through your denial of my disease.
In May, the Colorado chapter of the Alzheimer's Association invited me to speak at its Early Stage Conference. I'd been planning this trip for some time. I mentioned earlier that just when I think, "Hey, I'm doing pretty darn good," something crops up. And it did this time. I had everything arranged. The van was to pick me up at 6 a.m. My bags were packed. I had my boarding pass in my laptop bag. The van pulls up to the United Airlines curbside and I ask the driver if I can pay by credit card. There is no wallet in my back pocket. Sinking feeling. Of course, I left it at home. Without money, credit cards, I.D., no one is going to let me board a plane, so I miss my flight. This has never happened before. Again, I tell this story and people try to make me feel better by telling me they left their passport at home once. This is not the same thing. Unless you have serious memory problems and are in denial, this is not a normal occurrence.
ARF: Are there other symptoms also?
RB: Yes. One of the more disturbing things is not recognizing people I know. One was a woman from the Alzheimer's Association who has been nothing but kind to me. We are in regular contact. I saw a friend speaking with this woman and thought, "Who is he talking to?" I didn't want to interrupt them, thinking it would be rude to intrude without an introduction. Except, of course, I know her. Or I have gone to see my doctor, whom I know well and like very much, and have not recognized him.
A few weeks ago, I was in my support group and the facilitator and one of my friends was saying that a woman all three of us know well would be arriving soon and I had no idea who they were talking about. When my friend saw her, he went up to her and hugged her but still I had no idea who she was. The woman came up to hug me, and I did so because I had this feeling that it was expected because she clearly knew me. Whatever that part of my brain is that recognizes people I know was not working at that time. Last week I went to a networking group and one of my favorite people, Sally, was there. Later that afternoon, I had a meeting with a woman named Bridget. In my memory of the afternoon meeting, Sally is the one in the meeting, except she wasn't there. It's hard to explain but I have no recall of the person who was actually in the meeting being in the room and only of the woman I had seen earlier in the day. This is definitely not what life used to be like. So "struggling to be normal" is all of the competent things that people see me do, and then me allowing a "stranger" that I really do know to hug me when I have no idea who she is—because that is what I feel is considered "normal."
ARF: Sometimes people with early stage AD talk about not seeing things properly. Do you know what I mean?
RB: Yes. One of my early onset friends has what he calls, "The Case of the Missing Tools." He will set down a screwdriver and then when he goes to pick it back up, it isn't there. (It is there, he just isn't seeing it.) He gets up and looks around. Goes from room to room. Does this 10 times. And it isn't where he left it. (Only it is!)
This happens to me all the time. Take "The Case of the Missing Glass." I'll be watching TV and have a glass of water next to me. Then the glass isn't there, so I get up to look for it. (It's never been moved but I don't see it.) So I get up and start looking in the kitchen. Not there. Go into the den. Not there. Sit back down to watch TV. Still no glass there. Wait a while. Get up again. And I repeat this. Finally, it is there again. It has been there the entire time, but my brain was not perceiving it.
A recurring incident is what I'll call, "The Case of the Missing Building." I went to get a haircut and my barbershop was not there. The building next to it was there but I wasn't seeing the barbershop. Of course, I'm surprised that it's not there. After standing there for quite a few minutes, I finally give up. Then as I walk down the street, and turn around one last time, the barbershop is where it has always been. Someone didn't pick up the building and move it. This has happened several times with this same building. My friend and I talk about how it is as if there is a file in our brains of the screwdriver, the glass, the building, but our brain cannot access that file.
Another example. Recently I started to volunteer to give my feedback to a company that is developing computer software to help people stimulate and improve cognitive functioning. One of the exercises involved translating symbols into our alphabet. One symbol represented the letter "G," but my brain kept translating "G" as "5." The five-letter word translated into "Glass," but my brain was seeing "5-L-A-S-S," which made no sense. It was like my brain was stuck in a groove that it could not get out of. I realize that time is ticking away and I am about to time out and get the question wrong, but I can't see any way to make sense of it. When the programmer tells me what the word is, I believe her, but it really bothers me that my brain can't recognize something as simple as the letter "G," which has been part of my working memory for close to a half-century. This happens often when I try to read the morning paper.
ARF: What was one of the first symptoms you noticed?
RB: Hearing things that are not there. This isn't a voice telling me things like, "Go rob a bank"; it's more like the TV being on when it isn't. The natural thing to do when the TV is on when you don't want it on is to click the off button on the TV set. Except in this case, the TV isn't actually on; therefore, doing so turns the TV on, so now the TV is really on and the sound is coming out of it on top of the sounds that aren't really there that I was hearing before the real TV was actually turned on. It's so strange.
Or I'll be listening to a Linda Ronstadt CD, and then harpsichord music will start competing with Linda Ronstadt. So, I'll turn off Linda Ronstadt, and the harpsichord music is still playing, but the CD player is off. When I first told this to my doctor, he referred me to a psychiatrist, whose first words were, "You are too old to become schizophrenic." I was never so relieved to be too old in my life. But then I was told that it was just stress. Then other symptoms began to occur. I would be walking in my house, which by this time I had owned for 11 years, and would literally walk into walls. Or go to Starbucks, and one sees where the path is that one is to walk and where the wall is, and I'd walk straight into the wall (and, in the process, spill hot coffee all over myself and the floor). Then my legs began to just give out underneath me.
Then very routine tasks began to get noticeably difficult. I started to really routinize things, such as what I made for meals. And even when I made breakfast be the same thing every morning, I was getting extremely confused. Sometimes the phone would ring, and any little disturbance like that would throw me off completely. However, other times, there would be no interruption, and I'd still be totally at sea.
ARF: What are the big frustrations, the most difficult moments at this stage?
RB: Not knowing myself as I know myself to have been. Not being able to rely on myself to be clear and focused. Not being able to rely on my memory and recall. I never know when it isn't going to be there. That is disturbing and troubling.
It becomes frustrating to have to persuade people that there is something wrong with me. Recently one of the neighbor's teenage sons was outside with his friends, and I went outside and I heard him tell his friends, "That man is crazy." The 20-something boyfriend of another neighbor's daughter made a similar comment one day as I was walking outside: "There goes that freak." That's frustrating. Going out to the mailbox and having a woman who has known me for 25 or more years walk up and say, very slowly, "H-e-l-l-o, my-y-y-y name is Peg (not her real name). Do you remember me?" I realize this is a perfect opportunity where one can try to have a one-on-one conversation to change someone's perception about Alzheimer's and dementia and the whole continuum. Having these kinds of experiences makes me understand why people hide it, why families hide it. I know very bright people—personal friends who are Ph.D. psychologists who will talk about someone with Alzheimer's or dementia and make screwed-up faces or talk funny or, yes, think of people with Alzheimer's as "crazy."
ARF: In this day and age, is that just ignorance?
RB: It's keeping it at arm's length. I think the root of it is the fear of getting it themselves, the fear of imagining that they, too, could become demented. And so people's way of dealing with the fear is to make fun of what they don't know, don't want to know. In the documentary The Celluloid Closet, which is about the depiction of homosexuality in movies, someone says that people who disapprove of gay people do so because they imagine themselves in same-sex situations, which makes them uncomfortable because that is repellent to them. Likewise, I think the idea of having dementia is unfathomable to them. I think there is a similarity here to people who make Alzheimer's jokes or don't want to deal with people with dementia. I have even heard these same psychologist friends say, "Can't they just try harder?" As if people with dementia were not trying hard enough! I am not forgetting what my doctor looks like on purpose. I made the appointment. I kept it. I just didn't recognize him when he walked into the room. Do you think I did that on purpose? Or that I wasn't trying? One takes recognition for granted. It's supposed to be a given.
A friend who has early onset forgot to take his Aricept with him when he went on a trip. Now, a person I care about who works with persons with Alzheimer's said to me, "How does a person with Alzheimer's forget their Alzheimer's medication?" In a word: Easy. It's almost humorous when you think about it. He has a memory disorder! There is no distinction between forgetting the trivial and forgetting the important. As if, "Well, yeah, I can understand being forgetful about where you set down your keys, but if you have Alzheimer's, it's too important to forget your medicine." Again, it's not about importance. It's about forgetting. I often hear of people with dementia losing weight because they forget to eat. That may sound absurd, but it shows how basic this forgetting is. People do not comprehend the breadth and depth of the forgetting.
When the disease progresses, people forget their loved ones and children, and that is heartbreaking. But at this early stage, other people judge us harshly at times. If I am still well spoken, then I must not be trying hard enough when I do show certain deficits. It can happen even in my own support group. One day I'd been late because I couldn't find my wallet, so one of my fellow early onset friends said, "You should always put your wallet in the same place." This misses the point, too. For a system like that to work, one has to remember that one has a place that one always puts the wallet. Sure, in a perfect world, every time I walk in the door, I would set my wallet down in the same spot. But things happen, the phone rings, the dog barks, or even if there is no distraction, and, as I've written before, in that split second the thought disappears. Ten minutes later I notice my wallet in my pocket and by that time I am rooms away from the spot where the wallet belongs. This sounds so basic, but if you literally count everything you do during the day, and you do these things pretty much unconsciously, you see how ludicrous it is to expect someone with dementia to follow a system like this. To the best of my ability I follow systems and keep lists. Sometimes with all of the lists, reminders, and notes to myself, I think I am bordering on becoming obsessive-compulsive. But it's really about trying to get through the day—struggling to "pass for normal." It's a lot of work!
ARF: Are all symptoms equally upsetting?
RB: No. I'll give you two examples. Last month I was in Chicago for an Alzheimer's Association conference. I took part in the reading of Maureen Matthews' play entitled, To Whom I May Concern, in which she has taken the stories and words of people with Alzheimer's and other forms of memory loss and personalized the disease. Maureen is a nurse and a therapist. She does not have dementia.
One of the many things I love about Maureen is that she realizes the need to "normalize" relationships between those of us with dementia and those without it. When we were in Chicago, I told her the following story:
One night I came back to my hotel room and I took off my pants and put them on the bed and then went into the bathroom. After coming out of the bathroom, all of a sudden, I saw these "strange" pants on the bed and thought, "Oh, my God, whose pants are on the bed?" I started to get freaked out and thought the maid had left some stranger's pants there. My support group leader tells us when these things happen to "self-talk" to calm ourselves down. I did that and eventually realized they were my jeans, and I started laughing about it. Then a good friend with early onset called and I told him the story, and thank God for him, he laughed with me. (He also asked, "Were they new pants?" I think he thought maybe if they were brand new it might be possible that I didn't recognize them. But these were a pair of jeans I'd owned for years. Good try on his part to try to make me feel better.)
The next day when I told Maureen, she laughed with me, too, instead of getting that stone-faced look of concern on her face, which I read as, "poor guy." Maureen remembers me saying, "Thank you for laughing." So, Maureen gets it.
Other symptoms I can't laugh about. The other night I went out to dinner with one of my best friends. She was driving and I started to ask her about her plans for her twenty-fifth wedding anniversary. The thought was in my head but my brain was unable to communicate to my mouth or voice box or any part of me to make any sounds of speech. She looked at me and I started to point to my mouth. It took her a moment to realize that I was trying to pantomime to her, "I can't speak." When I was in Chicago recently it happened a couple times where I'd start to speak and then…nothing.
ARF: Will you allow me a Barbara Walters question? How does it feel?
RB: Well, "Barbara," it depends on the day. To lose what gave me identity and joy is sad. Sure, I get down. Frustrated. Angry. However, I don't think of myself as depressed. I don't mean to sound like some sort of Pollyanna, but I think about all of the wonderful moments in my life, the people I've met, the places I've been. I hear on the news about young people being killed in Iraq at age 19 or 20 and here I am at 50 and have had a nice life, so it puts things in perspective. Many things still give me joy.
ARF: For example?
RB: My dog Avery. He doesn't ask me to explain, doesn't doubt this is happening to me, he just wants to love me. When I am in a bad spot or need to calm down, I close my eyes and visualize him in my head. He is pure love. I love my friends and the time that I spend with them. One of the things I did for myself after diagnosis was to get a daily subscription to The New York Times. I have trouble reading now. There are times when I can't even read a headline correctly. I have had to re-read an article 10 times before it made sense to me. However, while that might sound frustrating, it makes me feel connected to the world and my attitude is that even if I read 20 percent or 10 percent of it, it's important that I try. I also have trouble following the plots of films so I rarely go to a movie theater anymore, but I get DVDs via Netflix. The selections I make are often not plot-driven. For example, I love art and art museums, so renting DVDs of Sister Wendy touring the great art museums of the world was a treat. I could stop and start the DVD whenever I wanted. There was no complicated plot line to try to follow and it was beautiful.
I've read that music seems to have deep roots even in people with advanced Alzheimer's who can't remember loved ones anymore. I remember Barbra Streisand saying in an interview that her mother had Alzheimer's, and her mother didn't remember a lot but she did remember music. They would sing together and her mother would remember the words to songs from her youth. My iPod is loaded with a lot of the music that I love, ranging from Broadway to Motown, Big Band to folk, standards to disco. It takes me back years and years to when I first fell in love with these songs, what I might have been doing when I first heard them or saw that performer or that musical live. It gives me incredible pleasure. I'm not always sure I remember exactly what was happening when I first heard the song, but it is familiar and helps me remember who I am.
ARF: Have you met more people like you?
RB: Do you mean persons in the early stages of dementia of any age, or early onset? After receiving my diagnosis in June 2006, I was in a daze for about 2 months. Then I met with a wonderful woman named Michelle Barclay at the Alzheimer's Association in Los Angeles. She spent more than 2 hours with me and gave me a lot of encouragement and information. She referred me to a support group. It has been a lifesaver for me. Immediately, that first day, I went to lunch with two men in my group, W. and B. W. started having problems before age 65 and B. is in his fifties. Both were taken out of their careers as an architect and an attorney, respectively. I then got involved online with groups like DASNI and Dementia USA and met others across the U.S. and around the world.
As I said before, the Alzheimer's Association sent me to Washington, DC, for its Public Policy Forum in March. I had an incredible experience there meeting other early stage people. Hearing how others felt, what their experiences were, and what they were doing about it in terms of advocacy on their local, state, and national level was like a huge shot of adrenalin.
My closest friend with early onset is C., who lives in Oregon. I recently was able to spend time with another early onset friend, B., who is 51. Another friend, S., is younger than I and lives in Minnesota. Of course, none of us wants to be in this boat, but had this not happened I would not have met so many wonderful people—and they truly are wonderful people. That is not confined only to persons with Alzheimer's. The people I have met who are care partners of my friends, and also the professionals I've met throughout this journey are proof of how much good exists in the world.
ARF: Tell us about the conference.
RB: My friend and co-organizer Jay both had read about the New York chapter of the Alzheimer's Association hosting a conference for people in the early stages of memory loss and other dementias, and took the idea of doing one in L.A. to the Association. We've been planning it now for 14 months and it is almost upon us. The planning for the conference has given my life direction after I was floundering in the first few months after the diagnosis. It's taught me that while my cognitive abilities are not what they used to be, there is life after diagnosis and I am still a capable and productive human being. This may be the last chapter, but I want to write as much of it as I can.
ARF: What's unique about this event?
RB: Conferences on dementia have historically been targeted at either health care professionals who work with the patients or the lay care partner. We wanted a conference for the person with the diagnosis. One difference will be that the person with the diagnosis and the care partner will be together in the same room, listening to the same information. So, when a panelist with early memory loss talks about a symptom, his or her care partner will say, "Oh, that's why Sally does X" or "Now, when Joe does Y it makes more sense to me." We want professionals to attend, too, because we hope they will gain insight and be able to take their experience from the conference back into their work. They are on the front lines. Our primary goal is to try to both enrich the lives of persons with a diagnosis of dementia and also to show the world that we are still here and matter.
The key word is participation, and to encourage that we will be using an interactive format. I hope that people will come armed with ideas about what they would like to see in their communities in terms of services and programs. This conference will hopefully bring attention to this early stage of the disease, but the attention needs to turn into action on a year-round basis. Also, we hope that people will make friends. This disease can be isolating because often the people one spends time with don't have the disease and, as well intentioned as they are, haven't walked in our shoes. At this conference, we hope people will get a chance to connect and stay in touch so this day is just the beginning of an ongoing conversation.
ARF: When we think of a person with AD, we typically have a different image in our mind. We picture someone whose world has shrunk, who needs help dressing etc., whose suffering is obvious. Must we change our concept of Alzheimer disease?
RB: Yes. I think the biggest reason we must change the concept is that there are many people who could be helped if physicians recognized their problem and diagnosed it earlier than they do now. As you said, it becomes obvious even to the non-expert. But I hear of doctors not diagnosing the disease even once it's obvious, much less trying to diagnose the very earliest stages. Someone at a reputable center for the treatment of Alzheimer's told me that doctors don't like to tell people they have Alzheimer's too early because they fear the patient will commit suicide. To be fair, they told me that they recently had a case where someone had been given the diagnosis and committed suicide.
ARF: Jack Kevorkian's first patient was a woman with early onset AD in her fifties. Her psychiatrist told me recently she felt the decision was made hastily and without the doctor's input.
RB: Now, that is absolutely horrible. On the other hand, I have also met many people who told me that it was the biggest relief when a doctor finally told them that what was wrong with them was Alzheimer's. They finally had an explanation for what was causing their symptoms—the confusion, the changes. It can be very disconcerting to notice that you are not the same person you always were and have no idea what is causing it. Also, would a doctor not give someone a cancer diagnosis because he or she feared the person might commit suicide? I don't think so.
I have talked with people who were having symptoms, went to one doctor, and were told, "I don't see what the problem is." Then they went to another doctor, and were told the same thing. But they were having problems. Finally, the third doctor does take them seriously, gives them the AD diagnosis, and, most important of all, starts them on Namenda, Aricept, or one of the other drugs like it. Some of these people have been taking these meds several years and not seen significant decline. Do you want to hear the damnedest Catch-22 of all? Sometimes people who've been doing well because they are taking the meds then are told, "Oh, well, you can't possibly have Alzheimer's if you are still functioning," and the doctor wants to take them off of the AD drugs! People live in fear of deteriorating when they hear these words. I've been to conferences where people with dementia were speaking, and they said that if they were not on these meds they wouldn't be there speaking to the audience that day. I know from my own experience that I function much better now than before going on these medications. That's the number one reason, in my opinion, why we need to change our perception. Because if we don't, doctors are depriving multitudes of people of the opportunity to live meaningful, productive, and capable lives for much longer than they are now.
A brilliant researcher named Leon Thal of UC San Diego passed away last February. On January 8, 2007, a Business Week article quoted him:
The massive funding pumped into HIV research led to predictable results: AIDS was transformed from a death sentence into a manageable disease in just 10 years. Scientists say the same could happen with Alzheimer's if there were a similar national will. "Look, if we doubled our research output it would halve the amount of time it will take to find a cure," asserts Dr. Leon J. Thal, director of the Alzheimer's Disease Research Center at the University of California, San Diego.
While right now there is no "cure" for AIDS, the advent of the protease inhibitors changed this disease from being the death sentence it was back in the 1980s. Why is there not a similar "national will" about Alzheimer's? A leader in the AD field said to me: "It is ageism." Many people think of Alzheimer's as a natural part of aging, and, in doing so, they are basically writing people off, saying, "Well, too bad, you got old, that's what happens." Of course, people don't realize that Dr. Alzheimer's "patient Zero," Auguste D., was 51 years old. I have friends with early onset who are in their forties and fifties. I think that is one of the reasons why it is important for those of us who are in the early stage and with early onset to speak up because that might be what it takes to get people to realize that something can be done and needs to be done.
ARF: When did you notice changes for the first time?
RB: In June 2004, the auditory hallucinations began. I was later told that at least one-third of persons with Alzheimer's have them. My psychiatrist put me on Risperdal, a drug that's often used in people with AD.
ARF: At first, what did you think might be wrong?
RB: Honestly, I had no idea.
ARF: What was getting your diagnosis like?
RB: I saw the psychiatrist right away and the symptom disappeared with the Risperdal. But then strange things began to crop up. I was getting confused. For example, we have received bottled water all of my life. When a five-gallon bottle is empty, I lift it off and replace it with a full one. Been doing that for a long time—it's so simple. One day, I took off the empty bottle, lifted up the new full water bottle, and instead of emptying it into the carafe on the stand, I dumped it down the sink. The next time, I took off the empty bottle, picked up the new bottle, and dumped it in the wastebasket. The next time, I took off the empty bottle, picked up the new bottle, and poured it on the floor. Anyplace but where it was supposed to go. A connection was missing.
Other things happened, too, like losing my place doing routine tasks and probably about 100 things that I'm forgetting to write about right now. When I told these things to my doctor, he said to stop taking the Risperdal. But I did not want to go back to hearing things that weren't there and my psychiatrist advocated for keeping me on it. This went on.
In spring of 2006, my insurance was changing and I had to look for a new doctor. I told my new physician about my symptoms and he listened to me. During that first visit, he said he wanted to order an MRI, a PET scan, and neuropsychological testing. He said he wanted to rule out some things.
The MRI ruled out a brain tumor. But the PET scan showed global dysfunction and atrophy and hypoperfusion in both frontal lobes and temporal lobes and parietal lobe. And what they called "watershed areas." The frontal and parietal lobes were particularly affected, as is typical for AD. My doctor explained that there were areas where there was activity and then right next to it, it was "just dark, nothing going on." I then had 2 days of extensive neuropsych testing. These were more than 8 hours a day for 2 days, not some casually tossed-off Mini-Mental Status Exam. By the way, when I went for my neuropsych testing, I did not yet know the results of my PET scan. I was actually into the second day of my testing and thought that it was going really well, i.e., meaning I thought I was acing these tests. It's not funny but I remember in one part of the test I was asked to explain sayings. She asked me to tell her what the following expression meant: "One swallow does not a summer make." And I said, "Don't eat summer in one gulp." After the test was over and she explained what the real meaning was, it mortified me. I couldn't draw the face of a clock to the time she specified. My scores were frighteningly low. Mind you, I was tested twice when I was young and both times my I.Q. scored about 150.
ARF: People with high IQ tend to be more difficult to diagnose because they compensate so well.
RB: Yes, the "cognitive reserve" again. I take that to mean that people who had a high degree of intelligence, or high degree of functioning, have to lose more for it to either bother them, or become noticeable to the point where someone thinks, "Okay, something is clearly wrong with Joe." I remember when I got my diagnosis, a good friend said, "Well, you were always too smart anyway. Now you'll be just like the rest of us."
That was meant as a compliment, but it's not very comforting. My friend W. and I often talk about how people will say to us, "Oh, you don't have it." He also had a very high-functioning career. So although he notices his deficits and that he is not functioning the way he once did, others don't see it much, because he is not what people have in their mind as the stereotype of a person with dementia.
To get back to my diagnosis, seeing the results of my neuropsych exam was heartbreaking. My reading comprehension was grade-school level. She had to keep giving me simpler and simpler passages to read. I think I read a seventh-grade passage and got every question wrong. And what did I do for a living? I was an editor. Do you think someone would ever allow me to work in publishing again if I couldn't read a simple passage and retain its meaning? Thankfully, no one is testing me after it takes me 10 times to read an article in the newspaper before some small part of it sinks in.
I mentioned working with a company on testing its cognitive training computer program. One of the clear results is that my short-term memory is very impaired. For example, the computer will show me objects or words and then ask me to recall them in some way. When they appear on the screen, I am just guessing because they don't look familiar to me at all.
ARF: You mentioned others in your family having had AD, too? Can you write about that?
RB: The occurrence of it in my family is among relatives in the Midwest, so it has been mostly from afar. We learned upon the death of a cousin of my Mom's that she'd had Alzheimer's. She and my mother had been fairly close. At first we heard, "Jodie [name changed] can't come to the phone." Then when my Mom would visit for family reunions, Jodie wouldn't be there and they'd say she wasn't feeling well. A great-uncle also had it. Basically, he, Jodie, and other relatives weren't seen again. They were kept at home, hidden away from view. I understand there is a stigma with this disease, but having seen how this was handled in my family, I feel it is important to be someone who is not afraid to speak out. There is nothing to be ashamed about. I didn't ask for this. Neither did my great-uncle nor aunt Jodie.
ARF: Is your treatment any different than if yours were a more "classical" case, i.e., diagnosed at a later stage and later age, say, in your seventies.
RB: I don't think so. The greatest hurdle to receiving this treatment is getting the diagnosis at a younger age. I hear over and over again from people with early onset that they are told it's stress, it's depression, and it gets dismissed (for another example, see ARF interview Diagnostic Odyssey). And if one doesn't advocate strongly or have a family member or friend willing to advocate, then the diagnosis gets deferred until the person is so clearly demented that the meds will likely have little to no benefit. To me, this is criminal.
ARF: The cholinesterase inhibitors (donepezil, galantamine, rivastigmine) are approved for mild to moderate AD, and memantine for moderate to severe AD, not for the early cognitive symptoms you have. They are standard of care, but at the same time there is debate about whether they are worth the cost. In England, the National Institute for Health and Clinical Excellence (NICE) has touched off controversy with its critical stance on these medicines. What's your experience with these drugs?
RB: Interestingly, Namenda (memantine) was the first drug my doctor prescribed for me. As I understand it, Namenda is designed to slow down the progression of the disease, and my personal experience is certainly that it is helping me. I don't remember noticing any side effects with the Namenda. After I was on it for 6 weeks or so, he added the Aricept. Once I started on that, I got gastrointestinal distress and insomnia as side effects. Originally, I was taking the Aricept in the morning and at bedtime. My doctor suggested that I take the second dose at about 2 p.m. so it would be less likely to keep me awake at night, and he was right. I put up with the gastrointestinal distress because it's important to me to keep my brain functioning as long as I can.
I have noticed improvements since being on the medications. As you can see from the symptoms that I describe, yes, I have problems. But, for example, whereas before it seemed like every morning when I tried to make breakfast I was getting lost going about this simple task, that happens less frequently now. Or if it does, maybe one event gets confusing but I am able to get back on track again fairly quickly. Life isn't perfect, but it is much, much better. I do know that they say that Namenda is not for "early stage," but I can't think of one early stage person who isn't on it. I understand this is considered "off label," but in my opinion doctors who put their patients on Namenda and help us stave off the progression of this disease are heroes.
ARF: There also is debate about how long the meds help, how long to stay on them. Any thoughts?
RB: I have been to dementia conferences where persons with early stage said, "I was diagnosed in 1999 and immediately put on Aricept. And now that I have not progressed significantly in 8 years, my doctor has taken away my Alzheimer's diagnosis." What's worse is when they not only take away the diagnosis, but also want to take away the person's AD drugs. So people have kept the wolf from the door because they took the medications, and now the doctor wants to take them off their medications. What happens if they then deteriorate to the point where the meds won't do them much good once or if they are prescribed again later? To me, this doesn't make sense.
ARF: Everyone agrees we need a new generation of drugs that halt the underlying disease. Have you tried to participate in drug studies of mild cognitive impairment or AD?
RB: Not to date.
ARF: Would you be interested in doing so?
RB: I would need to know more about what is involved. It also would depend on whether I had to go off of other medications.
ARF: Most AD drug studies exclude people younger than 50 or 55 (see ARF essay on clinical trials). Part of the reason why companies are not testing their experimental drugs in people with EOAD is that they think they can't find enough people in that situation. Do you agree? What could be done?
RB: My understanding is that it is estimated that some 5 to 10 percent of the 5.1 million diagnosed with Alzheimer's in the United States have EOAD. It isn't that we don't exist. JoAnn Webster, who is a leading authority in the field of outreach to the EOAD community, just gave a presentation in Chicago where she said that persons with EOAD are often the most vocal advocates.
I am now on the national Alzheimer's Association's Early Stage Advisory Group. There are 14 of us, 12 with EOAD. We're here and we're vocal. I don't agree that it is because they can't find these people. Personally, I think it is a bias that again goes to the issue that Alzheimer's is perceived as a disease of the elderly. Therefore, we who have EOAD are seen as a rarity, an anomaly.
But given that we have been taken out of the work force in the prime of life, we are often diagnosed earlier on in the illness and are more able to talk about what it is like to live with this disease, we would be much better able to articulate what a drug is doing to our bodies. What are its side effects? Do we think our memory is better? Is our cognition better? Who better to ask than the person taking the medication as opposed to a care partner who is giving second-hand information?
As far as what could be done, they need to start doing trials that a) include persons with EOAD, and b) perhaps consider doing trials solely on persons with EOAD because some of the drugs might be more robust if tested on us because we are often diagnosed earlier.
ARF: Many leading scientists agree that drug studies should move toward earlier treatment and eventually prevention, when the brain has not already been ill for years. Do you get the sense from others you know that they want to participate, i.e., be "guinea pigs" for such trials?
RB: The people I know with the disease fall into two camps. The first are people who would like to be part of clinical trials but haven't qualified because they are too young. The second are people who hear positive word-of-mouth about a drug in a certain phase—anecdotal evidence that Drug X is working—and they then want to get into a now-closed study.
ARF: Besides awareness, understanding, and tolerance on the part of your fellow citizens, what do you want to see happen most urgently?
RB: When I was a kid, people said someone had "the Big C"—they didn't say cancer. Or they whispered it: "She has cancer." Unless you talk about something openly, then you pretend it isn't there as if it's going to go away. Well, Alzheimer's isn't going away. I wish there were the leadership in this country to spread the word that this is not an old person's disease or a natural part of aging. Then, "Oh, well, what can you do? It's inevitable," would not be an acceptable stance anymore. Alzheimer's disease doesn't need to happen. We are learning more all the time. When I attend conferences and listen to researchers, they often talk about how they think we will have a cure in 10 years, maybe 15 years. And then I hear that because the government doesn't spend the money on Alzheimer's research, the most brilliant minds are moving on to study other diseases. When I speak, I like to be a message of hope. Frankly, I think if we had the will, this national will, we could conquer this disease. It takes money, will, and commitment, and I don't see that forthcoming. But I want to continue to remain hopeful.