This is an article I wrote few years back for a Google Knol (Google’s attempt to take on Wikipedia, which apparently has failed). Google is discontinuing the service, but I have moved the article here to preserve it. A lot of good information here.
Alzheimer’s Disease
A practical guide to dealing with Alzheimer’s
This is a practical, what-you-need-to-know guide to Alzheimer’s Disease. It is written in non-technical terms, and is geared towards people who are dealing with family members with Alzheimer’s.
Introduction
Alzheimer’s is a degenerative disease of the central nervous system characterized primarily by premature senile mental deterioration. Factors that affect the progression of the illness appear to have a genetic basis, however, lifestyle can have an accelerative or deccelerative effect, depending on choices made. The progression of the illness can be subtle on a day to day basis, but over a period of months it can be quite noticeable. The onset of the illness in the begining is subtle, and is characterized by a decline in short-term memory. If you’re dealing with someone who is developing Alzheimer’s, the change is non-obvious, and is often attributed to personality quirks (“he’s usually absent-minded”). Over the longer term, the most recent memories are the first to fade, memories that are more deeply embedded tend to last much longer. As an example, you’ll find that the person in question can provide an unusually detailed recollection of events from decades ago, but can’t remember a conversation from five minutes back. In addition, because the illness takes out short-term (or less embedded) memories first, what tends to happen is that their strongest personality traits become more manifest (because they are more deeply ingrained) as secondary personality characteristics start to fade.
There appear to be three broadly based stages; in stage one the victim is aware of the problem, but tends to fall into a strong state of denial (the victim tends to act like a petulant teenager), in phase two, the disease is more advanced, the behavior is more characteristic of a small child, there is a lot of repetition, and very poor retention of information. In phase three the sufferer is essentially an infant; they are unable to care for themselves, have to be fed by hand, need to wear diapers, etc. Once they reach phase three, the victim is in a weakened state, and is nearing the end of the illness. Often at this stage some other illness (e.g. pneumonia) can easily develop that will actually kill the patient. There is no known cure, however, because of the broad reach of the illness, there is a significant amount of effort being put into prevention and treatment.
What to do when someone you know is diagnosed
An Alzheimer’s diagnosis is very frightening for the victim, and stressfull for the victim’s family. If you find yourself having to deal with a relative or close friend who has been diagnosed, there are steps you can take to make the process more manageable.
1. Start by getting informed. Because the illness is becoming so prevalent, there is a lot of information available on treatments, what to expect, how to cope, etc. Go on-line and do research, go to your local library or bookstore and pick up a couple of texts, you should easily find a wide range of information.
2. Build out a support network for yourself, because you will need it. The process of caring for a loved one with Alzheimers is incredibly stressful; pull your siblings together (if you have them) to help you, having a support group of people you know can make a significant difference. There is also a growing list of local support agencies and non-profits of people who are going through the same process as you, this can also be a good source.
3. Get the victim’s financial, legal, and insurance documentation in order. People with Alzheimer’s are particularly susceptible to scam artists or unscrupulous telemarketers, as the caregiver you will need to take control of their finances quickly. This includes both longer-term investments such as annuities or their stock portfolio (if applicable) as well as short term financials, such as paying monthly utility bills, etc. Find a lawyer that specializes in Elder Law that can help you sort through all legal documentation (living wills, etc.). You need to do this sooner, rather than later; if you wait too long the victim will not have the legal capacity to sign documents that are designed to facilitate their care.
4. Examine longer-term care alternatives sooner rather than later. As the disease progresses, the level of care goes up exponentially. You might be able to deal with this during the early stages, but probably not in the later stages. It’s also likely that you have your own life to deal with (your job, your children, etc.), and you don’t want this taking you to the breaking point, either emotionally or financially. In-home care can facilitate the process for the victim, but can be very expensive, and there is the possibility of the victim being taken advantage of, because it is so easy to do. Managed care is a good alternative, but again, there is a wide range of costs and services associated with whatever choice is made. Do your homework early, and get ahead of the curve.
5. Treat the victim with respect. Keep in mind that arguing with a victim, or treating them like an infant, is pointless and will increase their stress level, which is likely to accelerate the process. Do not become impatient if you have to keep repeating yourself, it is the nature of the illness, and you need to learn to change the way you communicate with the victim. They are likely to become more easily upset and irrational, and in general much more difficult to be around, and this will get worse as the illness progresses. Adjust your filters accordingly, and do your best to be caring and supportive.
6. Simplify the victim’s choices. As the illness develops, trivial things suddenly become much bigger. A simple decision such as “what outfit do I put on?” can literally take hours and cause a lot of stress. Let the victim have a choice, but limit the choices to something manageable.
7. Pay attention to your family dynamic. If your family is like most, there is a peculiar dynamic at play that has probably been in effect a long time. Most people, and therefore most group dynamics do not handle stress well. It is incredibly important for siblings who are dealing with a parent with Alzheimer’s to have clear, continuous conversations about status and care of the victim.
Preventing Alzheimer’s via lifestyle
Although the illness appears to have a genetic basis, there are steps you can take now to minimize or delay Alzheimer’s onset. There is no proven cure (although there is a lot of research being done on this), and there are clinical trials for vaccines and treatments in progress (see the next section for details). The state of the art in terms of treatment and prevention will improve–there are a lot of very capable people backed by a lot of money trying to solve this–but in the meanwhile, there are steps you can take now. These include:
1. Get in shape. There is a strong correlation between people not taking good physical care of themselves and becoming susceptible to Alzheimer’s. You want aerobic activity, anything that increases the flow of oxygen to the brain is good. This is also useful in preventing other health issues such as heart attacks, stroke, etc. Get in shape now, and stay in shape.
2. Stop smoking. Aside from the obvious effect on your lungs, cigarettes limit the flow of oxygen throughout your body and brain.
3. Limit your drinking of alchohol. If you have to drink, try to keep it to one drink, with dinner. Anytime you feel a buzz from drinking, you’re killing brain cells, and that makes it that much easier for Alzheimer’s to develop.
4. Get interested. The more you use your brain, the longer it will serve it’s purpose. Learning new skills at a later age can improve the brain’s cognitive functioning and potentially delay the onset of the illness. Example? Learn a new language, learn how to play an instrument, take painting lessons, get involved in community activities, etc.
5. Floss your teeth. This sounds odd, but a study done in the UK showed a correlation between not flossing and higher incidences of Alzheimers.
6. Drink tea. There is an article listed below that show a potential correlation between drinking tea (specifically white tea, which is extremely high in antioxidants) and protecting yourself against cognitive decline. While the study results are somewhat inconclusive, drinking tea can’t hurt, and might help.
Potential treatments currently under development
There is a lot of work being done by big pharmaceutical companies to develop drugs that can slow down or reverse Alzheimer’s. Nearly all the Information in this section relates to drugs and treatments under development and/or going through clinical trials. Additional information will be added to this section as it becomes available.
• Aricept is commercially available now, and has proven effective in improving cognition and function. The drug is normally well tolerated, but people at risk for stomach ulcers should tell their doctors because serious stomach problems, such as bleeding, may get worse. Fainting, nausea, vomiting, diarrhea, bruising, not sleeping well, muscle cramps, loss of appetite or fatigue are also possible side effects. In studies these effects were usually mild and temporary
• ARBs (angiotensin receptor blockers) are a blood pressure drug that has shown promising trial results in lowering the incidence and slowing progression of Alzheimers.
• Anavex 1-41 is a new drug under development that is focused on reducing “oxidative stress”, this is the equivalent of removing rust from your brain.
• Bapineuzumab a drug being developed by Elan and Wyeth that has shown some positive results in slowing down Alzheimers. There are unwanted side effects for victims that have a genetic mutation referred to as ApoE4 (which does not affect most victims). There was also brain swelling in about 5% of patients treated during Phase II trials. Both companies appear to be pushing forward to Phase III trials.
• Dimebon Currently in trial at UCLA, has been effective at stabilizing cognitive decline over an 18 month test period. Dimebon appears to work through a mechanism of action that is distinct from current Alzheimer’s drugs. Dimebon improves impaired mitochondrial function; mitochondria are the central energy source of all cells and impaired mitochondrial function may play a significant role in the loss of brain cell function in Alzheimer’s.
• Gammagard Developed by Baxter, currently moving from Phase II to Phase III trials, targets beta-amyloid build up, has show good results on a very small sample.
• Marijuana This sounds like a stoner fantasy, but early tests indicated that labs rats that got high showed a reversal in memory loss. Based on the average memory retention rate for stoners, this seems totally counter-intuitive, but apparently the research is continuing.
• MTC a new drug under development by TauRx Therapeutics has shown good promise in untangling tau proteins in the brain, which can lead to a significant slowdown in the progress of Alzheimer’s.
• PBT2 This drug counteracts the production and build-up of a protein called amyloid-beta that occurs in Alzheimer’s disease. This protein, which can build up into a ‘plaque’, is believed to be toxic to brain cells and to prevent them from functioning properly.The study is being done by the Division of Neurosciences and Mental Health at Imperial College London.
• Rember Scientists say this medication may work by dissolving tangles of a protein that collects in the brain cells of Alzheimer’s patients. The preliminary study of 321 Alzheimer’s patients from Singapore and Britain found that this drug, previously used for urinary tract infections and other ailments, reduced the patients’ rate of mental loss by 81 percent, based on a standard measure of cognitive performance and memory.
• Statins Lipitor and other statins like Zocor help control cholesterol and heart disease. Studies done by the University of Michigan found taking statins over a five to seven year period reduced the risk for dementia by half. It appears statins can lower high insulin levels in the brain that lead to Alzheimer’s.
On-line Resources
The Alzheimers Association A good resource for information, education, outreach, etc.
ADEAR Alzheimers Disease, Education, and Referral Center, run by the National Institute of Health.
Alzheimers Foundation of America Another good resource, with strong support networks
YouTube The University of California and YouTube are collaborating on an Alzheimers and Dementia channel
Alzheimers Weekly A good on-line resource covering a wide range of topics, it appears to be care-giver centric.
Ashby A technique focusing on “brain exercises” that has shown to produce measureable results.
Related Illnesses
Vascular Dementia Vascular dementia is the result of a lack of blood flowing to the brain. It is the second most common form of dementia after Alzheimer’s, and is often mistaken for Alzheimer’s. It has been referred to as multi-infarct dementia because it was thought to be caused by a series of small strokes. The recent name change was implemented to show the broader array of conditions that can affect the body’s ability to circulate blood in the brain. There is a good resource here, if you would like more information.
Mild Cognitive Impairment MCI is characterized by a decline in cognitive function, usually affecting people over the age of 65. MCI can often be a precursor to dementia, of which Alzheimer’s is the most common form. Having MCI does not necessarily mean Alzheimer’s will follow. Please follow this link for more information.