Caregiving Questions

Aggression, both physical and verbal, is one of the more difficult behaviors to deal with in a patient who is suffering from dementia. Although it may seem inadequate, what you are doing is appropriate. When your wife becomes agitated or aggressive, the best approach is to provide reassurances of her safety and security and to try to calmly redirect her attention to another topic or activity. You should not argue with, shout at, or otherwise antagonize an Alzheimer's patient as this will only serve to make them more agitated, which could lead to unintentional injuries.

Because of the nature of Alzheimer's disease, your wife can become easily confused and think you are a stranger. Also, if you are asking her to do something, she may simply not understand what you are trying to do or why. She may become anxious in these situations, which could lead to aggression. Therefore, any time you do something with her, you should explain what you are about to do before you perform the act and/or explain what you want her to do with simple, straightforward instructions.

Anything you can do to help reduce your wife's anxiety and uncertainty may also help to reduce aggressive behavior. For example, try to maintain a calm environment and discuss non-threatening subject matter. A patient's environment—such as constant background TV or radio sound, outside traffic noise, household noise, etc.—can have a significant impact on a patient's mindset. Eliminating or reducing environmental disturbances can sometimes help to reduce agitation as well as aggressive behavior in the patient. Additionally, trying to maintain a regular schedule with respect to meals, activities, and bedtime can sometimes help to reduce anxiety.

Having a caregiver come to assist you and your wife is a great idea, and one that you will have to work with your wife to accept. Your wife probably feels threatened that this other person is marginalizing her responsibilities such that your wife thinks she is no longer useful. Both you and her son will have to provide continual reassurance that she is still valuable to your household and your lives, and that she could never be "replaced." Encourage your wife to continue to perform as many activities as she is safely still capable of doing—do not try to revoke all of her responsibilities at once. You can also try telling her that the assistant is really for the both of you, which she may accept more than if she thinks the assistant is meant for her alone. With the help of a skilled caregiver, unless your wife develops a medical condition that requires hospitalization, it may be possible that to avoid having to place your wife in a care facility. However, you should discuss the situation with your family now so that if or when a time comes that the demands of caring for your wife become too great, you will have options to turn to.

As a caregiver yourself, you may also want to consider joining a caregiver support group in your community. You can search for Alzheimer's caregiver and patient support groups in your area by visiting our "Resources" section, such as under the Caregiving and Caregiver Support heading in "Helpful Organizations."

While the patient is still capable of eating on his own, keep the food choices and meals simple, but nutritious. Serve foods that are easy to chew and swallow, or foods that are bite-size but do not pose a choking hazard, and serve them with healthy sauces or gravies so that they are well "lubricated." Encourage the patient to drink water or juice with his or her meal if dry mouth or trouble swallowing are issues. Try serving several small meals a day instead of three main meals. Additionally, the patient may benefit from an environment with reduced distractions while he is eating (turn off the TV, radio, etc.), so that he/she can concentrate on the food better. Most important, be patient and flexible; see which foods seem to work well in terms of taste and simplicity and don't force the patient to rush through a meal.

There really is no common course that Alzheimer's disease takes—its symptoms and progression is unique for each patient. Some patients can go on for years with only mild symptoms, and then seemingly without warning deteriorate rapidly and require hospitalization. Your friends’ rapid decline may have simply coincided with the other events you listed. Whether or not infections can cause a worsening of Alzheimer's symptoms is under scrutiny by researchers. Scientists have been trying to determine whether there is a causal link between infectious agents, such as the bacterium that causes pneumonia among others, and the development of neurodegenerative disorders such as Alzheimer's disease. For example, the C. pneumoniae bacteria has been found in the brains of Alzheimer patients upon autopsy, but researchers still cannot say whether its presence is an underlying cause of the disease or whether it is merely circumstantial, and the bacteria's presence is that of an opportunistic pathogen that gained entry into the brain due to a leaky blood-brain-barrier. Further studies are underway to determine the influence of infectious pathogens on the risk of developing Alzheimer's disease.

Therefore, it is more likely the case that your friends' rapid decline would have happened regardless of any actions you did or did not take. You could not have helped the fact that your friend got pneumonia or a kidney infection, and you certainly did your best to make sure he was in a good care facility. Again, the progression of Alzheimer's disease never follows a set pattern. It is not uncommon for caregivers to report a sudden or tremendous decline in cognitive and/or functional capabilities in their patients wherein the days or weeks before no such problems existed. So visit your friend regularly and continue to brighten his day, and do not burden yourself with guilt over things you have no control over. Be his good friend, just like you have been.

Alzheimer's disease patients often confuse the past and the present, and may think that someone from their distant past is still among the living. Your patient's continued questioning about her husband and mother might stem from an underlying fear of being alone, or being left behind by those that she loves. The next time she asks about her husband or mother, take it as an opportunity to talk to her about these underlying emotions. Say to her "You miss your loved ones, don’t you? Why don’t you tell me about your husband John and how you first met? Or tell me about your mother and her favorite song/recipe/holiday/etc." Sometimes when you engage Alzheimer's patients in such topics, they may become interested in telling you a story rather than repeatedly asking about their loved ones whereabouts. So if you keep her distracted by asking open-ended questions about her husband or mother, then it may become unnecessary for you to directly answer about where her loved ones are, which may prevent her from becoming upset when she is told that they are gone.

For your mother-in-law's sake, please do try to find her some help as soon as possible, regardless of what your father-in-law may have to say. You can start by contacting the Alzheimer's Disease Education Referral Center (ADEAR) at 1-800-272-3900, which has professionals who can help with your immediate questions, refer you to help in your area, and are available 24 hours a day, 7 days a week. Other useful agencies can be found in the Helpful Organizations portion of our site.

It is unfortunate that your father-in-law does not treat his wife better, but he may be in denial about her condition or he feels angry or frustrated that his wife is no longer the same person she once was. If your mother-in-law really does have Alzheimer's disease or dementia, then the situation will only get worse as her condition deteriorates. Alzheimer's disease is associated with deficits in short-term memory. Therefore, an Alzheimer's disease patient can become easily confused about where they are or what they are doing. If someone yells at and Alzheimer's disease patient and she does not understand why, it only serves to agitate her and make her upset.

Ideally, it would be good for your father-in-law to talk to a physician himself, who could explain to him why his wife is the way she is and why it does not help to yell at her or belittle her. He may listen to an authority figure, such as a doctor, more readily than he might listen to you or to his wife. At the moment she at least is aware of his actions and can react to them (even if it is negative), but sadly, as the disease progresses, she may lose the ability to feel anything for her husband, or to react to his anger other than by becoming agitated herself. Your father-in-law needs to understand that his wife has a problem and it needs to be addressed. If this means you have to take your mother-in-law for a doctor's evaluation yourself, then that is what you may just have to do. The sooner you act to get a proper diagnosis and treatment for her, the better.

First try speaking to your mother-in-law's primary care physician about having her mouth and throat examined. It is possible that she has a sore throat, has ulcers or sores in her mouth, or else has dental problems that are causing discomfort when she eats and swallows. Once these other factors have been ruled out, then a specialist such as a speech therapist can help to evaluate her swallowing ability to determine if she may need additional assistance with eating.

While taking longer to chew and swallow could be indicative of a swallowing issue, this could be "normal" for her in that she simply requires more time to do things than she used to. Additionally, sometimes Alzheimer patients temporarily forget how to eat or swallow, or they forget what they are doing right in the middle of doing it. If this is the case, it might help for her husband to bring along a small snack and beverage of his own when he goes to visit, so that he can eat along with her. These visual aids can help to remind her what it is she is supposed to be doing with her food and drink.

Sudden bouts of anxiety can be common among Alzheimer's patients and can certainly be trying for caregivers. Just remember that when your mother gets panicky and anxious, it is most likely because she is confused and cannot properly express her fears or concerns. And even though her behavior may seem irrational to you, there may be something underlying her anxiety.

Try to figure out what that something may be. It need not have been a major change—some small event or disruption in her routine, even something that is seemingly insignificant to you may be worrisome to your mother. For example, she could feel unsafe because there are uneven floor surfaces and she may feel that she could fall and hurt herself, or she may not recognize herself in mirrors or windows and mistake her own reflection for an intruder. Perhaps she feels too confined or coddled, or perhaps the home is uncomfortable in some other way—a noisy neighbor or loud street noise, fear of a household pet, allergies to something in the home, mistrust of another member of the household, an environment that is too hot/cold/dry/or humid. It is also possible that your mother's anxiety may have nothing to do with the house itself and may instead be due to her feeling vulnerable or a burden to you. You're going to have to become a detective to determine what the culprit might be. Calmly try asking her where she would most like to go and why. Ask her where she felt most comfortable when she was growing up, and where she now feels most at ease. You might be able to gain some insight into her behavior based on her answers.

In the meantime, remain calm and reassuring when you speak to her and let her know that she is safe, well cared for, and loved. If you do not already have a regular schedule in place, try keeping a similar routine each day or each week, and let her know in advance what events are coming up. Sometimes patients become anxious when they can no longer predict what will happen next in their day. A regular routine helps to curb some of this anxiety. So when you take her on outings, if possible try to do them at the same time of day for approximately the same amount of time. If she becomes anxious on the way home, try distracting her with a new conversation or activity (bring music that she likes and sing along, make up funny lyrics, or try to guess the song, etc.) If you are driving, you may even need to pull over until she has calmed down—do not try to drive if she is highly agitated.

If her behavior continues or worsens despite your best efforts, you might want to consider speaking to her primary care physician. He or she may decide to prescribe anxiolytic (anti-anxiety) medications or anti-depressants. These drugs may be effective in the short term, but might have undesirable side effects (drowsiness or lethargy) so they may not be a long-term solution. So it is best to try to reduce her anxiety through behavioral therapy, such as is discussed above. It might also be helpful for you to speak with other caregivers for moral support. You can search for Alzheimer's caregiver and patient support groups in your area by visiting our "Resources" section, such as under the Caregiving and Caregiver Support heading in "Helpful Organizations."

Oftentimes the only way to calm down an agitated Alzheimer's patient is to tell them something reassuring. In this case, your mother-in-law is reassured when she believes that she is going home soon. Although you may feel that it is inappropriate to lie to Alzheimer's patients in this way, you have to remember that Alzheimer's disease patients lose the ability to think rationally over time and begin to live in their own "reality." So long as what they are being told is not malicious, going along with the world as they see it should not harm them and even may help to reduce their anxieties. Other than continually reassuring your mother-in-law that she is safe, well-cared for and loved, you could try distracting her with a new activity when she starts asking to go home. Also, getting her involved in telling a story, such as by asking her about her home when she was growing up, or the first time she left home to start her adult life, etc., can sometimes help to distract her and get her thinking about other things.