Life and Memory Center

I was giving a talk about assessing memory the other day and I was asked a question that I have been asked often – “When will there be a cure for Alzheimer’s disease?” It is a difficult question to answer. I don’t want to sound as if there is no hope but I also don’t want to give false hope. I would be very pleased to be wrong about my belief that there will not soon be a cure for Alzheimer’s disease, cancer, heart disease, etc.

First, consider that Alzheimer’s disease is a complex and progressive degenerative disorder of the brain. It is not the only complex progressive brain disorder. Other progressive brain disorders include but are not limited to Parkinson’s disease, multiple sclerosis, Lewy body disease, Pick’s disease, Huntington’s chorea, and primary progressive aphasia. All are subtle in onset, often initially misdiagnosed, and progressive. All may progress to disability and/or dementia and are irreversible and complex. There are no cures for any of these diseases despite years of effort and funding.

Second, we don’t know the cause of Alzheimer’s disease. Current belief is that it is caused be dense concentration of two abnormal proteins in the brain: amyloids causing plaques and tau causing tangles. Even autopsy confirmation has been clouded by the finding that as many as 30% of us will die with pathological Alzheimer’s disease but with no clear symptoms. In other words, it is possible to have Alzheimer’s disease and not be demented and it is possible to be demented and not have Alzheimer’s disease. Despite years of intense research, it is not clear whether the plaques and tangles are the cause or the effect of the pathology underlying Alzheimer’s disease.

Third, I am not aware of any true cures for diseases in my lifetime. When I mention this in my talks, the response is of something like polio has been cured. But that is not true. We immunize against polio but it is still out there. Stop immunizations and it will return. There are a number of excellent medical screenings available for early detection of diseases such as cancer and heart disease. However, the screenings neither prevent nor cure heart disease or cancer. Medicine has progressed a long way. We are healthier, live longer, and catch diseases early to be proactive about course. This is good but it is not the same as having cures.

Although we cannot cure or prevent Alzheimer’s disease, there is so much we can do if we approach the problem as loss of short-term memory – the first signs of Alzheimer’s disease. It’s time to treat memory the same as we treat blood sugars, cholesterol, and blood pressure. Assess (don’ merely screen) memory regularly starting at least as early as 60 – earlier if you are worried or you have a family history of Alzheimer’s disease or dementia. Changes in short-term memory are very treatable if caught early. In light of this need, I have started a new program in collaboration with Dr. Karen Bilter. We are offering memory coaching to help treat memory changes of aging as well as the changes that may be the early signs of future decline.

How old is too old to work? It used to be easier to answer this question. Prior to 1900, you worked until you could no longer work. The social security act changed things. In 1935, older workers could draw benefits and retire at 65. When I reached the age of 65 and much to my surprise, I was often asked when I was going to retire. I have no plan as retirement is a process that unfolds over many years. Age is not the critical factor in the decision to quit working.

The question of being too old to work is not answered based on chronological age. Rather it is answered based on financial resources, desired life style, need for engagement in challenges, and functional (physical and mental) abilities. I had several clients doing well into their 80s and beyond. One was still CEO of his company at 90. One accountant was still successfully working full time at 82. Finally, there was the bowler at over 100.

Work enhances economic security and well being. Some argue that work improves brain health but the issue is complicated in that those with better brain health may be able to successfully work longer. Work provides many with the need for engaging intellectual and social needs. Work adds a sense of accomplishment and achievement. Older workers do a good job of adapting to the normal physical and mental changes of aging. Many older workers have greater institutional knowledge and problem-solving experience than younger workers.

Rather than to assume that older clients should retire, consider helping those who desire to continue to work. Chronological age matters little. What matters is functional capacity to do and enjoy the job.

The 82 year old accountant I mentioned above, along with his wife, noted “minor” changes in memory. He was also taking inordinately long to do the books – but still very competent. We completed a memory evaluation and he was diagnosed with Mild Cognitive Impairment. We put together a plan that allowed him to retire from work on his own terms before he began making mistakes and was forced to retire. We also worked on a plan for adding activities that filled the hole left by retiring.

As we age on the job we need to attend to physical health. Most workers have annual physicals and many work places have wellness programs that may be particularly helpful to the older worker. We also need to routinely have our memory and cognitive skills (as part of corporate wellness programs?) evaluated as we continue in the workforce. This may be especially important for professionals who serve others. Don’t take your mental skills for granted. Be sure your memory is still serving you and/or your clients well as you work into your 70s, 80s, and beyond.

We all confront the major myth of brain function which is that our brains work best in our youth. Even as early as middle age (40-69?) we are confronted by changes. Our brain slows as we get older. But we can’t run as fast or hit a ball as far either. The brain becomes more distractible as it ages. We can’t multitask as well and memorization takes more effort. As the brain ages (as early as 40), it has more difficulty with names and nouns. None of these changes compromises competency or the ability to learn.

The truth is that the brain not only preserves its youthful skills but also develops new strengths well into middle age and beyond for many. The middle and old aged adult brain can rewire and elaborate itself. The catch phrase for this ability is neuroplasticity. This is simply the brain’s ability to learn and change its structure and circuitry based on experience. Plasticity occurs at all ages in the healthy brain. Verbal skills, spatial reasoning, math skills, and verbal reasoning skills improve as we age. For example, middle aged pilots’ skills were assessed using a flight simulator. The younger pilots learned to master the simulator more quickly than the older pilots. The older pilots were better at avoiding crashes!

There are also other important gains in brain function with aging. As the brain ages it become calmer and less neurotic in most. Contrary to stereotypes, the aging brain becomes generally better at focusing on positives rather than negatives. This is especially true for well functioning aging brains. Many can also attest to the fact that the brain improves at regulating emotions and social interactions. Hence, we often hear “If only I could be 20 again and know what I know now.”

We all know exceptions to these patterns as there is considerable variability in skills. Not everyone thrives or prospers with age. But the pattern of those with normal brain function is to improve mastery over the self and the world. There is paranoia about becoming demented or developing Alzheimer’s disease despite the fact that only 5% of the population will be diagnosed with Alzheimer’s disease. Even if you live to be 85-90 your chances are only 50%.

Now is the time to buffer your brain against the effects of aging. Be proactive with your brain health and memory. Brain skills are stable or improve in those who are middle aged and older. Despite clever marketing, there are no short cuts or magic potions to consume. Better brain health requires you to be physically, cognitively, and socially active.

Many who later develop significant memory disorders and dementia start with mild changes that are difficult to distinguish from the normal changes of aging. Ronald Peterson at the Mayo Clinic described such cases as Mild Cognitive Impairment in about 2000. A number of factors may cause Mild Cognitive Impairment: Alzheimer’s disease, vascular disease (i.e., small strokes), Parkinson’s disease, Lewy Body disease, Primary Progressive aphasia….

The important word is mild. Persons with Mild Cognitive Impairment are not demented. They live independent lives. Many do not become demented. However, the risk of becoming demented is much greater for those with Mild Cognitive Impairment than those who never show these changes as they age. The new diagnostic criteria for Alzheimer’s disease include Mild Cognitive Impairment. Accordingly in Mild Cognitive Impairment:

• The person or family members express concern about changes in memory or thinking. They are worried.
• The changes, as measured by standardized assessment, may affect more than one mental skill such as reasoning, planning, judgment, language, attention, visuospatial skills, and/or memory.
• Persons with prominent and early decline in short-term memory are more likely than others to later be diagnosed with Alzheimer’s disease.
• Persons with prominent and early decline in expressive language skills may later be diagnosed with Primary Progressive Aphasia.
• Persons with prominent and early decline in motor skills, inconsistent memory, and slow response initiation may later diagnosed with Parkinson’s or Lewy Body disease.
• Individuals with Mild Cognitive Impairment are independent. They may take more time, make more errors, or be less inefficient with complex tasks than they used to. For example, they may show changes in skills such as using a computer, paying bills, balancing a checkbook, or preparing a meal.
• Persons with Mild Cognitive Impairment are not demented. Furthermore, not all persons with Mild Cognitive Impairment will become demented. However, the risk is much greater.

Mild Cognitive Impairment can only be reliable determined by rigorous cognitive evaluation by a memory expert – usually a neuropsychologist. Screenings cannot reliably detect Mild Cognitive Impairment.

Why would I want to know if I fit the criteria for Mild Cognitive Impairment? Simply because a person with Mild Cognitive Impairment is in control of his or her own life. This is the time to take control of your future. A person with Mild Cognitive Impairment needs to make a proactive plan in case there will be further decline. The plan is like an insurance policy to cover bad outcome. You will be glad you had it if you need it but you hope never to use it. The plan needs to include repeated evaluations and periodic revisions in light of findings from the evaluations. The plan should include family members and an open discussion of desired outcomes should there be future decline. Create a personalized plan based on your unique interests and skills.

As infants, we need assistance to survive. As we develop and master the world about us, we need less and less assistance. We become independent. Progressive dementia follows the course of development backwards. With dementias such as Alzheimer’s disease, there is a gradual loss of independence that requires outside assistance. The principle works according to the pattern of first in, last out. Last in, first out.

Treating progressive dementias requires a forward looking plan that provides assistance where needed in a systematic fashion before dementia sets in. At first, we can provide our own assistance. Short-term memory makes new learning more and more difficult over time. We assist ourselves at first by fortifying our calendar and checking it often. We use post-it notes. There are a multitude of external memory supports.

The more complex skills weaken first. We need to spend increasing time managing mail, bills, and checkbooks. Technology becomes a struggle. As short-term memory and complex thinking decline, there is less and less initiation or increasing apathy. We need more assistance to do complex things and to stay involved with those activities we enjoy and do well.

The ways to integrate assistance are limitless. Our spouse and/or family provide one form of assistance. This is informal assistance. The problem here becomes that they can’t do everything and they can’t manage for 24/7/365. They need breaks. Friends provide another form of assistance. Friends may call us to go to a play or a ball game if we forget.

Assistance may also come from outside persons or organizations. There are organizations that provide care for those with mild memory loss. There are places like the Millennium House (992-5513), Ardent Manor (435-9526), and the Care Club (353-1994) where those with memory loss can go to participate in formal activities with others. These are places one goes for stimulation and enjoyment. They provide a break for your spouse and engagement for you.

There are also more personalized programs. I call them “day care without walls.” This kind of assistance is based on your unique interests and skills. Personalized assistance is provided by friends or family or can be found at CompanionPlus (370-7130). CompanionPlus’ mission is to get you to activities you love to do but forget to go. If you golf, you have a companion with whom to golf. If you love to go to art class, you have someone with whom to go to art class. If you love to fish, you have someone with whom to fish. If you love to go to plays, you have someone with whom to go to plays. Programming is built around your desires and interests. I once had a client who loved electronics. The “program” was to have him go to Best Buy (without a credit card), make a wish list, and do lunch with a buddy.

It’s so sad for me to see so many with mild decline become so isolated when they don’t have to. It is sad to see overwhelmed caregivers try to do it all. There are options to have a good life even if you are very forgetful.

There are many types of learning and memory. There is associative learning such as that involved in knowing that a red traffic light means stop and a green traffic light means go. There is nonassociative learning where learning and memory interact to allow us to “learn to learn.” The more crossword puzzles we do the better we become at crossword puzzles. There is perceptual learning. I often marvel at how well artists can learn to use space and design to create beautiful images. There is motor learning which allows us to be able to learn to swim or ride a bicycle.

There are also many learning styles or types of intelligence. Some are best as visual learners. They need to see in pictures or images. They best learn and remember a new name by seeing it. Some are best as auditory learners. They learn and remember by hearing a lecture or a speech. They learn and remember a new word by hearing it spoken aloud. Some are tactile or kinesthetic learners and learn best by doing. They learn and remember a new word best by writing it down. Further, learning styles may include spatial learners (good navigators), linguistic learners (good at learning languages), musical learners (musicians), and naturalists among others. Of course, the best approach to learning and remembering is to learn by several of these methods.

The neurobiology of learning memory has advanced greatly during my career. During the first 20 years of my career as a researcher and educator, I was interested in understanding and applying principles of how the brain learns and remembers to students with normal memory. The past 20 years of my career have been dedicated to understanding and using this knowledge for those like me who are getting older and those with progressively failing memory. Clearly we owe it to those who are showing declining memory to identify which strengths and learning styles continue to work. We focus so much on assessing for deficits that we neglect retained strengths. If we are going to build a quality of life for those with declining memory, we must build it around strengths and styles. We must focus more on productivity than competency. Just as when we learn something new, we must incorporate the following into a memory plan.

• Repeat –reinforce memory by repetition. Constancy and routine are essential for those with memory loss.
• Reward – we remember best when memory is associated with reward. A smile goes a long way.
• Actively engage in the world – activities must focus on doing and participation not on remembering. Listening to music, gardening, talking about children or work, and going to lunch reinforces memories in these areas.
• Manage stress – build and model calmness into activities. Touch and soothing environments help memory work better.
• Manage fatigue – do more challenging things in the morning when rested and take breaks. Do more routine things latter in the day that require less thinking than doing.
• Reduce the need for multitasking – do one thing or one step at a time.

There are currently two classes of medications that are FDA approved for treating Alzheimer’s disease. The cholinesterase inhibitors have been in use the longest. There are three drugs in this class Aricept (generic name is donepezil and it is now available in generic equivalent form), Exelon (generic name is rivastigmine and is available as either an oral tablet or as a patch), and Razadyne (generic name is galantamine). In general, despite conflicting opinions of efficacy and mechanism of action, drugs from this class tend to increase the level of acetylcholine in neurons and slow the rate of progression in many who can tolerate them. These medications are FDA approved for all stages of Alzheimer’s disease. There is no clear clinical benefit for one over another.

The other medication is named Namenda (other brand names are Axura, Akatinol, Ebixa, or Memox and the generic name of memantine). This medication is in a class called NMDA receptor antagonists and works by blocking the neurotransmitter known as glutamine (although it also affects serotonin, dopamine, and acetylcholine). Namenda was approved by the FDA in 2003 for moderate to severe Alzheimer’s disease and is usually used in combination with one of the cholinesterase inhibitors. There is evidence that use of one of the cholinesterase inhibitors together with Namenda is more effective in moderate to severe Alzheimer’s disease than using either medication alone.

Over the years, there has been widespread “off label” use of Namenda for those with either Mild Cognitive Impairment or Mild Alzheimer’s disease. Indeed, a recent survey indicated that 63% of those with these diagnoses are on Namenda and 40% of neurologists prescribe Namenda for early stage cases. The dilemma is that there is lack of evidence for the use of Namenda for early Alzheimer’s disease let alone Mild Cognitive Impairment.

A new analysis has been recently published reviewing treatment outcomes for Namenda in about 450 patients with mild and about 700 patients with Moderate Alzheimer’s disease. There were no statistically significant differences between treatment with Namenda versus placebo for mild cases. There was a significant effect for treatment with Namenda for those with moderate Alzheimer’s disease.

The bottom line is that Namenda has no proven efficacy for those with Mild Cognitive Impairment or Mild Alzheimer’s disease. Of course, the number of studies is quite limited. However, as a consumer, one needs to decide whether or not to take this medication for early stages of cognitive decline. These decisions need to be based on outcome from clinical trials as well as cost-benefit ratios. First, Namenda is expensive. A 30 day supply costs about $130 – $200 per month. Second, Namenda has potential side effects including confusion, dizziness, drowsiness, headache, insomnia, agitation, and/or hallucinations. The decision to use Namenda for mild decline is between you and your physician but weigh the trade-offs before deciding.

Alzheimer’s disease is being redefined to include three phases. An early phase where there are no obvious symptoms but changes are occurring in the brain. A middle phase where the problems are mild and the diagnosis would be called Mild Cognitive Impairment. A third phase where the changes are severe enough to be called dementia (i.e., independence is lost).

The most sticking, and hopefully controversial, change is the addition of the early phase where there are changes in the brain but no symptoms of cognitive decline. This phase is defined by the use of biomarkers such as brain scans and tests of cerebral spinal fluid. The problems with this early phase include the fact that there are no standardized biological tests or results defining this phase. Second, 30% of people with amyloid plaques never develop clinical signs of Alzheimer’s disease. Third, the biomarkers are only to be used for persons enrolled in clinical trials.

The objective of the early phase is to encourage more research to develop possible drugs that attack the disease early. The failure of the Lily drug should cause caution in aggressive pursuit of amyloids as the cause of Alzheimer’s disease. Furthermore, although early drug interventions are a great ideal, they beg several questions. How early in life should the trials begin? 30s? 40s? 50s? 60s? How safe is early intervention? Will there be unintended and damaging side effects of altering brain chemistry so early in life? Why are we setting up formal diagnostic criteria to feed clinical trials? Are we really on the cusp of a medical breakthrough for Alzheimer’s disease?

The criteria will soon be published and I look forward to seeing the specifics. In the meantime, we have excellent cognitive and memory tests that are not invasive and allow us to assess and monitor brain function just as we use bold tests to determine the functioning of thyroid, kidney, and liver. These tests are the gold standard but the medical community ignores their utility in diagnosis and tracking. Alzheimer’s disease is diagnosed by its course over time. Not everyone who has memory decline will have Alzheimer’s disease. Not everyone who has Alzheimer’s disease will become demented. Not everyone who becomes demented has Alzheimer’s disease.

Finally, reducing Alzheimer’s disease to molecular biology only adds to the sense of fear and futility. We sit and wait for a medical cure. We worry if we cannot find our keys. There are caveats with the articles on the new criteria indicating caution as there is “nothing medically that can be done.” I feel that this misses the point. While we wait for science to find more answers, we need to be proactive about our memory. Schedule memory evaluations just as you do physicals. Be proactive and protect your future. There is so much that can be done if the focus is on memory rather than Alzheimer’s disease.

We often focus on the cognitive changes such as memory that predict risk of decline and future dementia. But those who work or live with persons that ultimately obtain a diagnosis of Alzheimer’s disease know there is more to it than just memory. Equally as damaging are changes in what researchers at Rush University Medical Center are call “life space.” Life space is getting out and about. Those with restricted life space don’t venture far from home.

One of the studies recently coming out of Rush’s longitudinal study of aging demonstrated a link between restricted life space and latter development of Mild Cognitive Impairment and Alzheimer’s disease. There were 1294 participants who had no mental decline at the beginning of the study. Participants were assessed after 4 to 8 years with detailed tests of cognitive functioning. Life space was defined as how far they went beyond home during the past week (e.g., to their porch, to their yard, outside of their neighborhood, outside of their town). Those who restricted their life space to staying close to home were about twice as likely to be diagnosed with Alzheimer’s disease than those who traveled out of town.

These findings remind me of a study from several years ago that demonstrated that those who were couch potatoes in middle age were more likely to be diagnosed with Alzheimer’s disease latter in their life than those who were active. There are at least two interpretations of these findings. First, having a limited life space may increase the chances of developing Alzheimer’s disease. This is the preferred in interpretation as it suggests that if you get active you may slow down or prevent Alzheimer’s disease.

Alternatively, Alzheimer’s disease may first make its presence known by limiting life space. It is clear that as Alzheimer’s disease (as well as many other progressive dementias) advances, afflicted persons become increasingly disengaged. This is often referred to as apathy in the professional literature. There is a lack of lack of interest, emotion, and motivation. Indeed, apathy is often misdiagnosed as depression (beware that one can be both depressed and apathetic and forgetful) early in the course of Alzheimer’s disease.

The plan of action is the same by either interpretation. Get moving. Whether depressed or apathetic the key is to become engaged in life whether or not you are motivated. It’s like the old Listerine commercials. “It may taste bad but it’s good for you.” No matter what stage of cognitive decline or lack of cognitive decline, we all do better if we have things that expand our life space beyond our own back yard. Those with adequate memory can do their own activities. Those with Alzheimer’s disease usually need someone else to get them to activities that they are either willing or interested in doing. They need an understanding friend or companion to remember for them.