LeadingAge Magazine · September/October 2015 • Volume 05 • Number 05

The Experience of Dementia, Firsthand

September 13, 2015 | by Cathy Richards

A pair of seniors living with dementia, who participate in their CCRC’s brain health program, explain their experiences and what strategies are working for them.

News articles on how to improve brain function and memory have become inescapable. Brain health is also a priority for Asbury Communities, which has been implementing programs across its system of continuing care retirement communities for years to educate residents and associates on the many aspects of the subject. Last year, we launched an eight-week course called Brain Waves at Asbury Methodist Village, Gaithersburg, MD. The program offers a comprehensive look at how the brain functions and how to maximize its health as we get older.

We recently held a panel discussion open to all residents and the public. Afterwards, we interviewed the participants one-on-one, including residents Bob Sessions, 88, who has been living with Alzheimer’s disease for the past 11 years; his wife, Julia Sessions; and Catherine Brown, 71, who was diagnosed with neurology pressure hydrocephalus, a rare form of dementia.

Here’s a video related to the panel discussion with comments from Sessions and Brown:

Read on for their perspectives, and what strategies are enabling them to maintain a good quality of life.

Cathy Richards: Describe the time leading up to your diagnosis of living with dementia.

Bob Sessions: My mother and my aunt had been diagnosed with Alzheimer’s, and we watched the progression with my mother for about 10 years. When I began to realize I was experiencing some memory problems I began to get concerned. I went to my internist, but he tested me and did not think anything was wrong. My family began to speak of times I seemed unaware of following normal procedures, such as failure to signal when I drove [or] forgetting to follow through on tasks such as timely paying of bills. My next-door neighbor began suffering through dementia and we watched the struggles of his wife. We decided we needed to apply for long-term care insurance and began the process. I was turned down by three different companies because I failed the memory test. My wife suggested we [try] some memory techniques and try with one more company. We attempted several different methods and finally found one that worked for me.

Meanwhile, I went back to my internist and asked for a referral to a neurologist. My wife wanted to go with me, but I resisted her efforts. When the neurologist gave me the same type of memory test the insurance companies had given, I used the memory techniques and the neurologist said I did not have Alzheimer’s. We did succeed in getting long-term care insurance with another insurance company. However, my family still expressed concerns, and finally one daughter called and said they wanted me to go to the Georgetown University Memory Disorders Program. This time my wife and daughter went with me. The doctor who examined me said he was about 95% sure that I was in the beginning stages of Alzheimer’s. This physician, Dr. Aisen, now heads the University of Southern California's Alzheimer's Therapeutic Research Institute, located in San Diego. I asked him about participation in clinical studies. He said they first required patients to get on Alzheimer’s medicine that helps manage symptoms and make sure the medicine was stabilized before beginning a clinical study.

Julia Sessions: I am 12 years younger than my husband, and while he was retired and working on a manuscript, I was continuing to teach school. On weekends I began noticing that he became sad because I was going back to work.

While we all forget things, what I tried to remember often came back to me after a while, but it did not seem to come back with Bob. I would share stories with him from my teaching, and I began to notice that when he repeated the story to our daughters, the detail from two or more stories began to merge into one. I began to worry that I might need to quit work before I reached retirement age. I also noticed we kept getting overdue notices on bills. If I said anything about it, Bob acted as if it did not matter, so I would assume the responsibility and go ahead and pay the bill, although he had always handled finances. I decided I needed to know where our money was going and began keeping track of every bill that came in on an Excel spreadsheet. He did not know I was doing that, but later when he began having trouble doing income tax, everything I had done paid off. I was able to help him fill out the income tax report although I had never done that before. I also began to reexamine the roles we had both assumed in our marriage, and realized that my dependent tendencies needed to be reversed.

Cathy Richards: How did the diagnosis affect you?

Bob Sessions: I have always been a survivor and confident in my own abilities and my ability to think through problems. I was determined to make the best of what I knew from personal experience, which was my mother’s bad situation.

I told my family I wanted this to be an “open process,” and did not want my diagnosis to be swept under the rug. I eagerly waited until I could participate in clinical research. At Georgetown, the doctor and his assistants kept asking me if I still was driving. I knew I was a good driver and told them so. They kept saying they advised against my continuing to drive. I asked for any other advice they had that might help me. Dr. Aisen’s advice was to stay physically, mentally and socially active, get plenty of sleep, and eat a healthy diet. This made sense to me, and I was determined to follow the doctor’s advice.

Julia Sessions: I was relieved to have a reason for the changes I had been experiencing with Bob. I also realized that I would have to begin paying attention to the duties that Bob had been responsible for and actually learn how to do them.

I was grateful that Bob wanted it to be an open process, because I tend to be open with people and secrecy is hard for me. I was sad knowing what lay ahead in the future for both of us and was determined to make the present as joyful as possible. Dr. Aisen said the average span between diagnosis and death was about 10 years. So, I wanted to make the most of the time we had together.

Cathy Richards: What did you do when you learned the diagnosis?

Bob Sessions: We first told our families about the diagnosis, then we announced it in the two social groups we were close to, a Sunday school class and a choir we sang in. I began doing what I had done when I faced cancer: I read everything I could find about Alzheimer’s. As soon as I was allowed, I began with clinical studies at Georgetown’s Memory Disorder Clinic. I was grateful for the advice and attention to what I was facing. I am now in my fourth clinical study. The research center has become another “home” for me.

After that I began to work every moment I had on a religious manuscript I had been writing for several years. I was determined to get it published before the Alzheimer’s became severe. I continued to get daily walks in with my wife and dog. I left the healthy eating part up to my wife, and continued socially with our class and choir, but mostly I worked on my manuscript.

Julia Sessions: I began to think through our separate roles and take a more active part in the decision-making. I don’t think Bob was too happy with some of my efforts because he frequently said, “I don’t like being treated like one of your students!” There were no guidelines on the progression of Bob’s disease so it was constant guesswork. The lack of consistency was very unnerving. Many times I wondered if the diagnosis was correct, and other times it was clear. I tried to focus on what Bob still could do and pick up the slack where he had trouble. I tried to get him to give up driving but this brought many battles. Fortunately he listened to Georgetown’s advice and gave it up on his own, although he kept saying, “I could drive to the store and get that for you.” I offered to read his manuscript and discovered a lot of repeated passages. I marked them and he corrected the repetitions.

I also continued doing organic gardening and focused on serving a diet rich in vegetables and fruits and low in fats. Keeping active socially was harder because I was still teaching and he was focusing on his writing. After my retirement, our children began to think ahead and wanted us to move closer to them, but I resisted. As the years went on I began to realize I needed closer support than I was getting. So eventually we moved to Asbury Methodist Village in an independent living building. This was a good move and freed up a lot of the time I had put into maintaining our lifestyle. Our social life improved greatly, and we participated in exercise classes in the swimming pool. We were much closer to our children and much closer to the clinical studies program in D.C.

Susan Grotenhuis is a wellness professional and certified brain fitness facilitator at Asbury Methodist Village. She moderated the roundtable discussion, Brain Health – A Patient’s Path, at the community. Here is more information about the Brain Waves program:

Cathy Richards: Describe the Brain Waves program you teach at Asbury Methodist Village.

Susan Grotenhuis: Brain Waves is an 8-week program created for the purpose of educating residents of our community on how the brain works, what happens as we age, and the best steps for optimizing brain health. The course covers topics such as diet, exercise, sleep and stress, as well as dementia. Most of the class is discussion, but it also includes a practical aspect where we apply what we’re learning. We’ve offered it 6 times and it has received national recognition in the form of awards. It’s also a lot of fun.

Cathy Richards: Tell us about some of the benefits participants gain from programs like Brain Waves or other mental fitness activities.

Susan Grotenhuis: The more you know, the better equipped you are for a brighter future. For instance, an interesting recent study by researchers at Rush University Medical Center suggests that people who consistently eat one to two servings a day of green leafy vegetables may be able to slow down the progress of dementia. I’ve had former participants get hearing aids because we’ve talked in class about the difference that can make. Students tell me they’re eating more fruits and vegetables or walking more. Information can be a great motivator. We just have to do it!

Cathy Richards: What do you consider the most effective treatment or approach to care?

Bob Sessions: I am convinced that staying active has helped me. Following the advice of the doctors at Georgetown and participating in the clinical studies has allowed me to be functional, even as I am going into my eleventh year since diagnosis. It has not been easy to face blood work every month and frequent MRI’s (especially being claustrophobic). But participation has given me something meaningful to do that potentially will help many people. Since my mother and aunt also suffered with Alzheimer’s and I have it, there are stronger risks that some of my daughters may also have the tendency to get it. Anything I can do for them is worth any difficulties I have to endure.

Julia Sessions: Making Bob’s Alzheimer’s an open process was invaluable. Instead of friends wondering if something was wrong with him, I heard only, “I was amazed at his comments today.” Another effective strategy was focusing on what Bob could still do and not on what was wrong. No one can actually say what has helped him the most: physical activity, diet, intellectual activity, social life, clinical study drugs, his own DNA, or even attitude and approach to life. But one thing is for sure, he has survived well for 10 years in spite of the disease and the problems he has encountered.

Cathy Richards: Describe the time leading up to your diagnosis of living with dementia.

Cathy Brown: My husband and I were concerned about my having had several falls in the approximately 8 years preceding my diagnosis. We decided to move to a continuing care retirement community although we hadn't thought to make this move quite that soon. My parents had been diagnosed with and died from Alzheimer's some 25 years before this, and I had long been concerned that I might be vulnerable to Alzheimer's and should look out for possible symptoms.

Cathy Richards: How did the diagnosis affect you?

Cathy Brown: After we moved to Asbury Methodist Village, I had several urinary tract infections, several instances of severe weakness including some times of inability to stand, and periods of mental confusion. We decided to find a neurologist to consult. This doctor ran several tests including an MRI, psychological testing and physical tests of gait and balance. After careful consideration, he said he felt I probably had normal pressure hydrocephalus (NPH). I was not familiar with that diagnosis although I had worked as a medical social worker, so I went online and read about NPH. The available articles mentioned that this condition was being studied at Johns Hopkins in Baltimore, which was within reach of our new home.

Cathy Richards: What course of action did you take when you learned the diagnosis?

Cathy Brown: I contacted the Neurology Department at Johns Hopkins, asked that my neurologist share all his findings of the tests, and finally was accepted by Hopkins for consideration as an NPH patient. JHU went through their tests that included several which I had already had. They also came to the conclusion that I had NPH.

Cathy Richards: What do you consider the most effective treatment or approach to care?

Cathy Brown: Johns Hopkins has found benefits for NPH patients by implanting a brain shunt to carry cerebrospinal fluid on an uninterrupted route from the brain. In my case, since I had several abdominal surgeries in my life, they worked out a route that avoided existing scar tissue, which lies between the brain source of the cerebrospinal fluid and a safe internal area in my abdomen. The surgery and recovery were uneventful, and I have had improvement in my balance and urinary tract symptoms. I do feel I have benefited from the shunt but do recognize that this will not "cure" me. I appreciate the improvements I noticed and continue to focus on mental and physical activities that are recommended for people with dementia.

This year’s LeadingAge Annual Meeting and Expo, scheduled for Nov. 1-4 in Boston, MA, will feature more than 190 educational sessions on a wide variety of topics that challenge our field.

Click on “Education Program” at the meeting website to learn about the many forms of education available, investigate specific sessions or download the whole meeting brochure. Here are some of the sessions related to topics in this article:

Sunday, Nov. 1

  • 19-A. The Dialogue Project: Living Well With Dementia

Monday, Nov. 2

  • 21-B. Enhancing Well-Being for People Living With Dementia
  • 159-C. Addressing the Spiritual Needs of Elders Living With Dementia

Tuesday, Nov. 3

  • 161-D. Opening Minds through Art: Visual Arts for People With Dementia
  • 31-E. Using Skill-Based Dementia Coaching to Transform Culture

Wednesday, Nov. 4

  • 172-H. Boosting Brain Health in Senior Living
  • 168-F. Groundbreaking Programs for Persons Living with Dementia
  • 16-H. Technology as an Intervention for Dementia