Questions & Answers

For Alzheimer's disease research, there are numerous organizations and research groups that would graciously accept donation of a brain or brain tissue. A list of some of these groups is noted below. In addition, you can try contacting the neurology or neuroscience departments of research institutions or medical universities near you to see if they have any such programs in place. Please note that many of these institutions require that the donated brain be from a patient already enrolled in one of their research studies. Depending on your location in relation to the institution, it may be possible to participate in the research programs. You will have to contact them directly to find out additional details. Some programs accepting brain donations include:

• Baylor College of Medicine Brain Donation Autopsy Program
• Boston University Alzheimer's Disease Center
• Northwestern University Brain Endowment program
• University of Pennsylvania Center for Neurodegenerative Disease Research

Additionally, a list of brain banks in several states that can perform postmortem diagnosis of Alzheimer's disease and may accept brain tissue for donation has been compiled by the Alzheimer Research Forum.

Two studies published earlier this year in the journal of Neurology as part of the Women’s Health Initiative (WHI) report that women taking hormone replacement therapy (HRT), such as for treatment of menopausal symptoms, had slightly reduced brain volumes in areas of the brain associated with thinking and memory, the frontal cortex and the hippocampus. Previous studies had indicated that HRT carried a higher risk for women to have issues with cognition and memory later in life, which had been thought to be due to an increased incidence of mini-strokes leading to brain lesions. These new studies, however, found not lesions in the brains of women taking HRT, but smaller brain volumes. Brain shrinkage due to HRT therefore may put these women at an increased risk to develop dementia or Alzheimer's disease.

Although there have not been many formal studies examining the effects of HRT in Alzheimer's disease (AD) patients, based upon these newer findings it would appear that HRT could potentially hasten disease progression by further shrinking the brain areas known to be affected by AD—the frontal cortex and the hippocampus. In fact, a recently published review of the clinical databases found that overall, estrogen replacement therapy (ERT) or hormone replacement therapy (which includes estrogens combined with progestagen) in women with dementia was associated with worse performance on memory, skill and cognitive tasks. Further studies clearly need to be conducted in dementia patients to confirm or refute these findings.

The best approach to dealing with an argumentative or physically aggressive Alzheimer's disease patient (AD) is to try to change the subject or get the patient engaged in a new activity. You are doing the right thing by remaining calm, and by not bothering to reason with your mother, as this clearly does not work. Arguing with an AD patient never accomplishes anything, and usually just serves to further agitate the patient.

Determine what your mother's favorite topics are to talk about and try to engage her in conversations concerning these subjects. It doesn't matter if she gets names, places or dates wrong—don't bother correcting her unless she asks—just let her talk. Ask her to reminisce about her family, friends, hobbies, job, etc. Or get her hands engaged in something that will take her mind off of her agitation, such as folding laundry, kneading dough, arranging flowers in a vase, drawing a picture, etc. These activities also can potentially serve to give her a sense of accomplishment and usefulness. Just remember to keep the tasks simple and clearly explain and/or demonstrate the steps involved.

Additionally, if you have not done so already, you may want to try keeping your mother on a more-or-less regular schedule each day. You can also try posting a large calendar or agenda on the wall that clearly lists the day's and week's activities. Post a schedule next to the clock with the times for each activity (e.g., listing mealtimes, different activities, bathroom breaks, bedtime, etc.) This can help to lessen anxiety about what's coming up next, which may aid in reducing aggressive outbursts.

Your mother may have moments of clarity in which she realizes that her cognition is deteriorating. She may not be able to remember a word or a face and this can be scary. It is also possible that she may be ashamed that she cannot remember the family member who just visited, and therefore becomes defensive when you insist otherwise. Even though this behavior is frustrating (to both you and her), it is all perfectly "normal" for Alzheimer's disease.

Most caregivers say that taking care of a loved one is one of the most difficult jobs they have ever done, but it is also one of the most rewarding. Every day can present new challenges, but you have to remember your mother's actions are no longer her own, as they are influenced – and sometimes completely governed—by the disease.

To aid your boyfriend in helping to remember appointments, try using a large wall calendar mounted in a highly visible location, wherein the calendar clearly details all appointments and occasions for the days, weeks, and months ahead. Encourage him to use the calendar and to check it regularly. You can also leave reminders for him in places that he will be sure to see, such as on the bathroom mirror or where he keeps his glasses, or call him about an hour before he's supposed to be somewhere "to see how he's coming along," etc.

As for cognitive exercises—anything you can think of that challenges your mind is fair game. Try simple crossword puzzles or other brain teasers, play games like Boggle™ or Scrabble™, attend public lectures on educational topics of interest, or learn a new language together. To help with the word loss, try playing word games every chance you get, such as by rhyming words together to make up limericks or songs, or finding the most synonyms or antonyms for a given word or phrase. Even simple games such as "I spy" and "20 Questions" can useful mental exercises. Keep it silly and fun, and you just might learn something too!

As for physical activity, try anything that your boyfriend is physically capable of doing. Walking, bicycling, swimming, golfing, yoga—whatever strikes his fancy. Since he likes to dance, try taking dance classes together to learn a new type of dance or improve upon what you already know. The social interaction with the other class members can be a boost to his morale as well. Be proactive in making introductions for him—use the name of the other person more than once and give a brief description of who the person is. For example, when you introduce someone to him, say something like "John meet Ted. Ted is learning how to salsa in the neighboring class. If we find Ted a partner for tomorrow, we can all go dancing together."

Anything you can do to keep him mentally and physically active, and to keep him socially engaged and in high spirits, can be a real help to slowing disease progression.

Some patients with advanced dementia can become quite upset by radical change and never really adapt to their new environments. However, this is not to say that it cannot be done or that it is always a negative experience for the patient. Alzheimer's patients often need to be moved from home to a facility or from one facility to another, and if the move is handled in a way to minimize stress, then it can be successful. However, it is impossible to determine if your aunt's move had any direct impact on her well-being, because such a determination would require knowledge of the mental status of your aunt at the time of the move. Even if this factor was known, it still would have been quite difficult to have predicted your aunt's reaction to the actual move, because a patient's daily behavior can vary immensely. So although it is possible that the move may have upset your aunt, it is unlikely that it affected her so severely that it directly contributed to her death.

The biggest aids in working with Alzheimer's disease or dementia patients are to develop a good rapport and to establish an effective means of communication. The AD patient may not be able to verbalize (or adequately verbalize) what they do or do not want, or what may cause them discomfort. Therefore, it is important that you speak in a clear, calm voice when explaining what it is you want the patient to do. Try to put the exercise in terms of activities they might actually perform on a daily basis (i.e., brushing their hair, pouring milk onto cereal, etc.), or divide the activity into simple and easy to follow steps. Use simple commands and be sure to engage them directly, making eye contact, when you ask them to perform an exercise. The tone of your voice may be just as important as what you are saying, so always be sure to use a calming, pleasant voice. Avoid talking down to the patient, belittling their condition, or talking to others about them as if they were not there. In other words, treat the patient with the dignity and respect that you would afford to any other non-dementia patient.

Simple stretches involving the arms, legs, torso and neck can be performed in both standing and seated positions. If the patient is still able to stand, you can use mild exercises for balance and gait, and small weights or exercise equipment to build up strength and endurance. Practicing having the patient go from a seated to a standing position and then back again is of functional importance and should also be utilized.

Finally, do not underestimate the power of massage. Touch therapy and massage have been demonstrated to greatly help dementia patients. Massage, for example, can aid in reducing stress and anxiety in the patients, and can also facilitate nonverbal communication if the patient is unable to communicate verbally or becomes frustrated when he is unsuccessful in getting the right words out.

Just remember that with Alzheimer's disease, most patients will have "good" days and "bad" days. Unfortunately, the good days tend to become less common as the disease progresses. Sometimes caregivers will notice that their loved one's condition suddenly worsens and will mistakenly attribute the symptoms to a new medication (or an existing medication's new dose). Donepezil is generally well-tolerated with an overall low incidence rate of adverse effects. Sometimes also there is a period of adjustment when taking a new medication which requires monitoring by a doctor in order to achieve an optimal dosage.

Therefore, it could be pure chance that her recent confusion has coincided with the newly prescribed drug. However, to be on the safe side, it cannot hurt to contact her primary care physician and let him or her know about this new behavior. The doctor may want to reevaluate the prescribed dose, or perhaps even try a different medication altogether.

The APOE4 (apolipoprotein-E4) and TOMM40 (translocase of outer mitochondrial membrane 40) genes have both been linked to Alzheimer’s disease through genetic studies. In particular, researches have found that specific rare mutations (called single nucleotide polymorphisms (SNPs)) in the TOMM40 gene, which is located close to and is “linked” to the APOE4 gene, can influence the level of ApoE protein that is found in the cerebrospinal fluid. The genetic studies indicate that TOMM40 (along with the two other closely linked genes, PVRL2 and APOC1) may be associated with a predisposition to developing late-onset Alzheimer’s disease.

While it is possible to be genetically tested to determine which version of the APOE gene you carry (e.g., ApoE2, ApoE3, or ApoE4), at the moment testing for TOMM40 is only performed for research purposes. If you want to be tested to see if you carry the APOE4 gene, you should contact your primary care physician about the possibility of genetic testing. Your doctor can refer you to a genetic counselor, who can take a family history and decide on the best course of action. The tests can be expensive and may not be covered by your health insurance plan.

Just remember that even if you are found to have the ApoE4 gene, it only means that you have a slightly higher risk of developing Alzheimer’s disease than the general population; it does not mean that you will definitely get Alzheimer’s disease.