Life and Memory Center

“I have Alzheimer’s disease in my family. What should I do?” The most important thing to do is to plan for good life. Keep in mind that not all memory loss is a result of Alzheimer’s disease. Not everyone with Alzheimer’s disease becomes demented and not all who become demented have Alzheimer’s disease. The genetic risk increases about 3 times that of persons without a family history – not 100% even in identical twins. Heredity is not destiny.

There are several things that I suggest for those with a family history of Alzheimer’s disease. I don’t have a family history but I am already implementing this plan for myself as I am in my mid 60s and I want to be proactive just in case.

1. Put advanced legal directives in place. Make sure you have a durable power of attorney for financial as well as medical decision making or the equivalent. Make sure you have a Living Will. These documents need to be in place before they are needed.

2. Plan on how to decide when it is time to turn over the finances if needed in the future. Be sure that your partner knows where documents are and is involved in monitoring all assets and decisions. Put the plan for transfer in writing and involve family members from the start.

3. Plan to monitor your driving and how to stop driving before you become unsafe. This plan may be either by means of a formal evaluation or by having a trusted family member periodically ride with you and give you honest feedback.

4. Exercise. This is probably the most important thing you control to help your future. Those who are better conditioned do better in all circumstances and at all stages of memory loss. Exercise most days for at least 40 minutes and don’t ignore resistance training. Consider adding dance and Tai Chi.

5. Make liberal use of external memory supports. They are not crutches, they are essential if your memory declines. The habits you develop now are invaluable for your future. Quit trying to remember. Plan on how you will remember. Short-term memory may become a problem. You need to stay ahead of the possible changes and involve your family in the plan.

6. Attend to your health. Get routine physicals and memory evaluations. Skip the memory screenings. They are too easy and insensitive to early signs of memory loss. Make memory assessment part of your routine evaluation strategy. Don’t wait for a diagnosis. Stay ahead of potential changes.

7. Make a five year plan and adjust it as changes occur. Include what you love to do in your plan. If you ever need to move into a memory facility, be sure it is one you have picked out well in advance. Also be sure they tend to your sleeping schedule, don’t make you play bingo if that is not your thing, give you a cat or dog if you like, and let you eat lots of strawberry shortcake.

I have had many clients seek my assistance in determining whether their partner, parent, etc. have Alzheimer’s disease. In fact, I had one such client this week where a wife brought in her husband to seek an answer to the question of whether his diagnosis of Alzheimer’s was correct. This is also the question that also comes up in many of my talks.

There are many myths surrounding what Alzheimer’s disease is. It is not a germ or virus that we contact. It is not a stroke. It is not a head injury. These events may all cause memory loss but they are not Alzheimer’s disease. Alzheimer’s disease is not the same as dementia. Dementia is a rating of the severity of memory loss. Dementia refers to the state of being so impaired in memory and/or other cognitive skills that you cannot live independently. It is important to understand that you can be demented and not have Alzheimer’s disease and that you can have Alzheimer’s disease and not be demented.

The statistics on developing Alzheimer’s disease are interesting. For example, if you live to be 85-90 you have a 50% chance of having a diagnosis of Alzheimer’s disease. If you live to be 100, you have a 70% of having a diagnosis of Alzheimer’s disease. Many of us can live into our 100s and not have Alzheimer’s disease. The statistics create fear but are deceptive. They don’t inform of how severe the Alzheimer’s disease is at the time of diagnosis. They don’t inform of how many of those who are diagnosed with Alzheimer’s disease are demented.

Neither science nor medicine has the answer to the question of what is Alzheimer’s disease. The most popular theory is that Alzheimer’s disease is caused by the burden of abnormal proteins that form plaques in the neurons. However, we still aren’t sure if the plaques cause Alzheimer’s disease or if Alzheimer’s disease causes the plaques. Furthermore, as many as 20% of us will develop a plaque burden as we age but have no clinical signs of Alzheimer’s disease. Finally, the recent failure of Lily’s drug that reversed the burden of plaques not only didn’t help but also made the condition worse.

My honest answer to the question of “What is Alzheimer’s disease?” is that I still don’t know. Maybe we are asking the wrong question. By waiting until we can accurately diagnose a disorder that we still don’t understand, we fail to be proactive. We fear assessment that may help us live a better life. We wait until we have to be reactive and there is so much less that can be done. The question to ask is “How is my memory?” We can put in place very good treatment plans if we focus on changes in short-term memory. We need to get ahead of the changes and be proactive just as we do for diabetes, hypertension, and many cancers. What we currently call Alzheimer’s disease unfolds over the course of decades. We can treat memory if we catch the changes early. Don’t wait for a diagnosis of Alzheimer’s disease to treat short-term memory. Actively manage short-term memory and put in place a life plan that is engaging and fulfilling even if your memory declines.

“My grandfather had Alzheimer’s disease. I am having some trouble finding the words I want but my memory is ok. What are my chances of developing Alzheimer’s disease?”

First, the greatest risk for developing Alzheimer’s disease is age. The prevalence for developing Alzheimer’s disease before age 60 is less than 2%. Prevalence increases to less than 15% by age 80 and about 70% by age 100 by some estimates. In short, we are all at risk for developing Alzheimer’s disease if we live long enough.

Early-onset Alzheimer’s disease (before age 65) is rare and develops between 30 and 60. In some cases, early onset is familial Alzheimer’s disease with genetic mutations on chromosomes 21, 14, and 1. In these rare cases, the inheritance is referred to as “autosomal dominant.” The offspring in the same generation have a 50/50 chance of developing Alzheimer’s disease if one of their parents had it — the same pattern as for Huntington’s chorea. There are strong trends in the family of early-onset Alzheimer’s disease with three or more family members diagnosed with Alzheimer’s disease before age 60.

For the rest of us we are at risk of developing late-onset Alzheimer’s disease. The answer for “what’s my risk” is genetically complicated. The risk for those with no first degree relatives (parents or siblings) with a diagnosis of Alzheimer’s disease is 7% or less. The risk for those with one first degree family member is about 15-20%. For second degree relatives (e.g., grandparents) the risk may be about 10%. Even for identical twins the risk is not 100% (it is 84%).

In short, the risk for those with first degree relatives who develop Alzheimer’s disease before age 85 may be about three to four times the risk as compared to those who have no Alzheimer’s disease in first degree relatives. Genes are clearly not destiny for those with late-onset Alzheimer’s disease in their family.

Briefly, there is a “genetic marker” for Alzheimer’s disease called the Apolipoprotein effect (APO). Each of us has a variant of the APO gene as 2, 3, or 4. The APO 4 variant is associated with greater risk of late-onset Alzheimer’s disease. However, even those with APO 4 have a better than even chance of not developing Alzheimer’s disease. Therefore, the APO genotype is of little value in clinical diagnosis or prognosis.

The risk of getting Alzheimer’s disease is very complicated. Furthermore, having mild Alzheimer’s disease is not disabling. Many who have Alzheimer’s disease are either not demented or, if they have planned well, still lead a very good life. Early detection of changes in memory is still the best protection in combination with a proactive treatment program. If you are at risk or worried, seek out a good evaluation that focuses on challenging memory evaluation.

Ron Reagan reveals (My Father at 100) that his father was thrown from his horse six months after leaving office during July 1989. He sustained a closed head injury and needed neurosurgery to relieve the pressure in his brain. The surgeons discovered that he already had the neurological changes of Alzheimer’s disease. This raises two interesting issues about memory. First, there is a great deal of debate about whether President Reagan showed signs of Alzheimer’s disease while he was in office. Second, John McCain (aged 71) would have been the oldest elected president of the United States, if elected.

First, consider age. Although we don’t have a standard of too old to be president of the United States, there are a number of prejudices about age and competence. Should there be an age for mandatory retirement? Should there be an age for mandatory surrender of the privilege of driving? On the one hand, there are clear changes in efficiency of mental processes with age. Our thinking slows. Our reaction time slows. We have a more difficult time multitasking. On the other hand, we are very good at compensating for the changes in efficiency that accompanies aging. Also, knowledge and problem-solving experience improve with age as long as our mind stays “sharp.” More importantly, the factor most clear from research on cognitive aging is that there is great variability. This means there are some who function very well into their ninth decade and beyond and others who don’t. Therefore, there can be no arbitrary decision based on age alone.

Second, consider the chance of someone developing a progressive dementia such as Alzheimer’s disease. This unfolds over a period of at least a decade and the early signs are very difficult to differentiate from normal aging. The greatest risk factor for developing Alzheimer’s disease is age. Nearly 50% of those who life to be 85-90 will receive a diagnosis of Alzheimer’s disease. Again, age does not help to determine who may be capable and who is not. The converse of the statistic is that 50% of those 85-90 are cognitively able.

So how do we decide? It comes down to understanding what will happen early in the course of Alzheimer’s disease. The first sign will be subtle short-term memory loss. This will affect new learning as well as complex decision making. And in the very early stages, subtle memory loss cannot be determined by just listening to someone or administering a Mini-Mental State Exam. The only practical way is to provide a rigorous evaluation of short-term memory and cognitive skills. Ideally, I propose that the only way to assess whether a person is cognitively able to be president is to have them undergo a thorough memory evaluation. We raise the issues of physical health and can reassure ourselves by prudent evaluation. I recommend adding memory assessment to the equation with full disclosure. But why just pick on those who are in their 70s or just presidential candidates? Is it time for all candidates for public office undergo appropriate cognitive testing? Standard cognitive evaluations are being provided for players in the NFL. Why not do the same for those in public office? Furthermore, why not for the rest of us?