Ask an Expert about Alzheimer's Disease

Many Alzheimer's patients have additional diseases that are found among older adults. The diagnoses of osteoporosis, arthritis, coronary artery disease, hyperlipidemia, hypertension, cancers, and other disorders often raise the question of how aggressively to investigate and treat. Taking into account the stage of your mother's dementia and the severity of her skin cancers, you may be able to decide the best way to proceed based on two important considerations:

• What choices do you think she would make if she did comprehend the situation?
• How does the discomfort of treatment compare to the discomfort that might be caused during your mother's remaining years by untreated skin cancers?

For some, the decision to withhold treatment of slowly-progressive and minimally painful conditions is appropriate given the progressive nature of Alzheimer's disease.

Although some observers have noted shared behavioral characteristics between Alzheimer's disease and autism and postulated that there might be a connection, the evidence for this does not appear to have been forthcoming.

Alzheimer's disease (AD) does indeed affect sleep patterns, but your brother may have separate or additional problems with his sleep that could be addressed. Medications, too, can sometimes account for excessive difficulty awakening. Please consider seeking the advice of a sleep specialist. And, unfortunately, the presence in your family of two brothers could double or triple your risk of developing AD, though your risk is increased less if the onset of their illness came later in life.

• Read about Alzheimer's disease risk factors and prevention

It is not uncommon for Alzheimer's disease (AD) patients to completely forget that they have eaten (or forget to eat entirely). Patients sometimes can no longer interpret signals from their stomachs, and therefore do not know whether they are hungry or full. A visual reminder such as a large schedule posted next to a clock might be helpful. On it you can list the entire day's agenda: meals, activities, bathing or toileting times, rest times, appointments, bed time, etc. A regular schedule clearly visible to the patient can help to decrease anxiety and frustration, because the patient knows exactly what to expect at any given time throughout the day. And when your uncle says he hasn't eaten, you can then refer to the schedule and remind him that he has already had his meal. Finally, because a patient's overall appetite might be altered as a result of the disease, it is also sometimes helpful to serve several smaller meals and/or snacks throughout the day rather than the standard three meals.

You already stated the root cause of the problem you face with your father: he doesn't want anything to change. It sounds as though your father has not fully come to terms with your mother's diagnosis, and is still in denial over her condition. This is a completely normal reaction to learning that a loved one has the disease. Hence the resistance you encounter in working with your father and his unwillingness to accept that your mother is no longer willing or able to do the things she once did. Your father may also be grieving for the loss of the person your mother once was. This grief can prompt frustration and anger, and you are an easy target to take out his frustrations upon.

Your attempts to accommodate your father's role as a caregiver, as well as being a good caregiver yourself, are quite commendable. However, it is also possible that your caregiving efforts are angering your father. Again, as you noted, your father doesn't want anyone to change their lives. This resistance to "outside" help is not an uncommon reaction for the patient, or in this case the patient's spouse, because it requires that the patient (or her spouse) admit that they need help and that their lives will forever be different. Therefore, unless your father is physically incapable of caring for your mother, then it may actually help to let him take a more active role in your mother's care. Your father may feel sidelined by your good intentions. Perhaps he feels that you have usurped his rightful role as primary caregiver. Encouraging him to participate more in your mother's day-to-day care could aide in making him more accepting of her condition. This might mean that you visit them less, or else busy yourself with "household" chores (laundry, cleaning, cooking, etc.) instead of directly caring for your mother while you are there. Allow him to make some mistakes on his own. He needs to learn. Yes, this may cause your mother to become more agitated at times, and you will have to use your best judgment as to when to step in to assist. But in the long run it might help to reduce the friction in your current relationship with your father.

Since your father is resistant to reading books, try encouraging him to join a caregiver support group in your area. Usually I would recommend that you attend with him, but in this instance he might be better served to go by himself. He may, for example, want to talk about his frustrations with his wife's disease, and there are things that he may not want his daughter to hear (in some instances, he may find it easier to talk to complete strangers than to his own family). Alternatively, perhaps your father would be more amenable to watching a video, instead of reading a book, on caregiving tips and/or about how Alzheimer's disease can affect peoples' lives. Videos such as these can be found on our website, on the internet, or at your local library.

And although it may seem counterintuitive, you might want to consider hiring a professional caregiver to assist with your mother's care. Even with all the help you provide it is possible that your father may still feel overwhelmed. It is conceivable that your father may respond better to a hired caregiver's advice than to your advice when it comes to dealing with your mother's care. Along these lines, you can also try talking to your mother's physician about the issue. Hearing the same suggestions that you have made, but instead coming from a medical professional such as a doctor or nurse, might be more helpful in getting information through to your father than anything else.

It is also possible that your father may be suffering from mild depression. Encourage him to schedule a check-up with his regular physician "just to make sure everything is okay. "After all," you can say, "you need to be in good health yourself if you want to be able to take good care of mom."

Finally, if all else fails it may be necessary to set up an intervention for your father with all of your family members. The point of the intervention would be to emphasize to your father that although his wife's disease is indeed real and debilitating, there is still a person in there and she needs his care and understanding more now than she ever has before. Your entire family may be better able than you alone to impress upon your father the importance of how his behavior needs to accommodate his wife's condition. Good luck and stay positive.

The only way your siblings will ever truly get a clear picture of what your father is going through is if they spend a whole weekend with him (or at the very least an entire day). Many Alzheimer's disease (AD) patients are quite adept, particularly in the early stages of the disease, of acting "normal" around friends and family such that no one realizes there is a problem. This is one of the reasons AD can go undiagnosed for long periods of time in some people. So it is not surprising that your siblings might not think anything is wrong with your father, because the limited interaction they have with him in phone conversations can make it seem as if your dad is completely fine. Your brothers are likely still experiencing denial over your father's diagnosis, which can lead to resistance to escalate his care management. If they had read the literature you had sent, they would likely recognize their folly. This is why your brothers really need to witness first-hand what is going on with your father in order to get a full appreciation of the disease, how it currently affects him, and how it will affect him in the future.

It sounds as if you are doing very well in managing your father's current care and planning for his future care. With Alzheimer's disease, it is never too soon to make decisions for events down the road. Plans can always be rethought and changed as situations change, and it is often easier to modify an existing plan than to come up with an entirely new plan each time something crops up. If your siblings cannot reconcile their differences about your father's care, you can always remind them that you all just want the same thing: the best possible care for your father. Remind them also, as you stated above, that everyone should have your father's well-being as his or her primary focus.

Not every home environment is suitable or safe for providing care to persons with dementia, and many long-term care facilities provide attentive service; nonetheless, one often hears of Alzheimer's disease patients who have survived for years in a home environment and one might wonder how much the loving care at home contributed to the extended survival. One study that looks empirically at this question was reported by McClendon and colleagues in the Journal of Gerontology, Behavior, Psychology, and Social Sciences in 2006. This study followed 258 persons with Alzheimer's disease and their family caregivers, and found evidence supporting the idea that delayed institutionalization was associated with prolonged survival. The decision for any specific family to seek institutional care, of course, depends on many factors associated with their personal circumstances.

The "pacemaker" your dad saw is a treatment that has already helped patients with Parkinson's disease and is hoped to prove beneficial in other conditions as well. It is called Deep Brain Stimulation (DBS) and involves the delivery of pulses of electrical stimulation to deep areas of the brain. The pulses originate in a surgically implanted pacemaker and travel through thin wires implanted within the brain tissue. In a preliminary study reported in 2010 by Dr. Laxton and his colleagues, data on a small group of Alzheimer's disease patients treated with DBS suggested that electrodes implanted in the brain's memory circuit could improve both metabolic measures (glucose utilization as shown on PET scan) and clinical measures (MMSE and ADAScog). The authors encouraged further exploration of this approach.