Caregiving Questions

Most of the symptoms you mention do occur in Alzheimer's disease (AD). However, it is certainly possible that there could be another disease or condition, in addition to AD, causing your mother's behaviors. It is not uncommon, for example, for patients to have overlapping symptoms resulting from one or more different neurodegenerative conditions, often blurring the lines of diagnosis. You mentioned that you suspected that your mother's behaviors go back a long time, since you were a child even. It is therefore possible that your mother could, in addition to AD, have another pre-existing condition that continues to influence her behavior. Chronic severe depression or manic-depression (also called bipolar disorder) can each cause paranoia, irritability and mood swings, insomnia, and even memory lapses among other things. Your mother may have knowingly or unknowingly had one of these conditions before developing dementia.

Unfortunately, because the common repertoire of symptoms that accompany a diagnosis of AD include many of the behaviors you list (tantrums, aggression, memory impairments, speech impairments, mood swings, etc.), without a thorough examination by a doctor who specializes in dementia, it is difficult to say if another related condition or disease is causing these symptoms. Your mother's doctor should be able provide you with more information about the different aspects of AD. Out of concern, you may also consider discussing your mother's behaviors with her doctor—perhaps some of these are symptoms which the doctor is unaware of and should be informed of.

Bathing and personal hygiene are always difficult issues to deal with. It sounds as though you are really understanding and patient, which is commendable considering how frustrated I'm sure you must feel sometimes!

In general, motivating a patient with Alzheimer's disease to do something is more about gaining his cooperation rather than forcing him to do a task. Some techniques you may find helpful (if you haven't already tried them) include:

• Ask him to try to do something rather than tell him to do it.
• You can also make him feel like he has some control of the bathing situation by saying “The bath is ready for you whenever you are.”
• Keep instructions simple and clear. Avoid lengthy explanations.
• Bribe him with a favorite food or drink as a reward for changing his undergarment.
• Call the diaper an undergarment or underwear instead—he might be embarrassed by the word “diaper.”
• Offer simple choices. For example, ask him “Do you want to get changed by yourself or do you want me to help you?”
• You can also ask him to help you with the task. Everyone likes to feel needed, so if he thinks that he can be of assistance to you, you may find he is more willing to cooperate. Don't forget to praise him for his efforts.
• Maintain a pleasant and calm tone of voice. Sometimes how you say things is just as important as what you say. And don't forget to try to smile.
• Stick to a routine. For example, always try to get him to change his undergarment at least in the morning before he gets dressed.
• If all else fails, leave him alone and try again later using a different approach. It will give you an opportunity to calm down and reassess the situation if you are feeling frustrated. Also, his mood may change in the meantime, and he may be more amenable later. Don't continue to push him if the technique you are using is not working.

In response to your first question, your hunch is correct. The area that is responsible for being able to read is distinct from the areas required for carrying out a conversation and formulating questions and answers. A conversation requires much more complex thought than simply reading out loud. For example, just because your mother reads out loud does not necessarily mean that she actually comprehends the text. In this sense, reading out loud is like being on “auto-pilot”—the recognition of words and how they are pronounced may still be intact, but their individual meaning, as well as the meaning of the text as a whole, may be lost.

Transient ischemic attacks, or TIAs, are an important risk factor in predicting if a stroke will occur. Most studies indicate that in a third to a half of all stroke cases, the stroke was preceded by a TIA. Because your mother has had a number of recent TIAs, there is high probability that she will suffer a stroke, most likely within the next year, if not sooner. Please talk to your mother's doctor, who will be able to provide you with more information that is specific to your mother's condition and answer any additional questions you may have.

The laws pertaining to adult guardianship vary from state to state, and when the battle over the custody of an elderly parent crosses state boundaries, the case can become quite complicated. If the daughter in your state has not already done so, it would be best that she contacts an attorney who specializes in elder issues. Such attorneys can be found, for example, through the ElderLawAnswers organization and the Administration on Aging.

In my professional opinion, a living arrangement in which the residence of an Alzheimer's patient is changed every 6 months seems unnecessarily disruptive and could potentially increase the occurrence of anxiety, agitation, or other negative behavioral issues. If it is possible for your friend to present any evidence to the judge, then a signed statement by her mother's doctor indicating that such a living arrangement would not be in the mother's best medical interest could be influential in court.

Dementia is a term that describes a condition of decline from previous cognitive functioning, not explainable by adverse medication effects or other simple reversible medical causes. In addition, it is characterized by memory problems and problems in one or more other areas such as recognition, ability to do learned tasks, use language, or to problem-solve. Alzheimer's disease is the most common dementia, and accounts for two thirds of the dementia cases among older adults in the United States.

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 generally ignoring her comments. 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 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. 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 fairly 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, and 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.

Hallucinations, paranoia and depression seem to be your mother's chief symptoms, and can be caused by a number of different illnesses in the elderly, not just by Alzheimer's disease. In some instances these types of symptoms can be treated quite effectively. For example, sometimes certain vitamin deficiencies, drug interactions, or thyroid hormone imbalances can cause dementia-like symptoms in older patients, and are largely correctable. Therefore, it is important that your mother get evaluated by her physician to determine the cause of these symptoms so that any necessary treatment appropriate for her condition can be started. Alzheimer's disease is typically associated with memory impairments and cognitive problems, and because your mother's memory and cognition seem fairly intact, if your mother is indeed determined to have dementia, it is unlikely that it would be of the Alzheimer's type.

Of course it is terribly difficult to witness a loved one succumb to this disease, but you can take some comfort in knowing that you are providing her with very good care. Regarding your mother's loss of balance and sideways leaning, it is possible that she is suffering from vertigo, which can affect elderly individuals regardless of whether or not they have Alzheimer's disease. Your mother's physician can test for vertigo and possibly even correct it depending on its cause.

It is fairly common for AD patients to have decreased appetites and lose weight as a result. A decreased appetite may be due to a loss of interest in food, decreased or altered sense of taste, decreased energy expenditure (therefore requiring a lower caloric intake), or a loss of the feeling of pleasure or satisfaction normally derived from eating (referred to as anhedonia). Because she is eating less, what she does eat therefore matters more. Your job is thus to make sure her food is nutrient rich so that every bite counts. If nothing else, you can try using liquid meal supplements to provide her with additional calories and essential nutrients. Some additional caregiver tips for encouraging AD patients to eat are provided by the Alzheimer's Disease Education and Referral Center (ADEAR) through the National Institute on Aging (NIA).

Finally, the long and often sunless winter months experienced in more northerly climates can sometimes lead to a condition called Seasonal Affective Disorder (SAD). Although no study has formally tested this, since Alzheimer's patients are more prone to develop apathy or depression than non-AD persons, dreary winters might affect the mood of these patients and increase the risk for depression. Regular exposure to sunlight can help to improve an Alzheimer's patient's overall mood and—when combined with calming, dim lighting in the evening—can help to keep a patient's circadian clock on track. This internal clock frequently becomes disrupted in Alzheimer's patients, such that they end up being awake at night and sleeping during the day.

Alzheimer's disease affects a person's mood as much as it affects his or her memory. Blunted and/or exaggerated emotional responses are characteristic of the disease, and emotional changes can occur suddenly and without warning. Excessive tearfulness, sadness, anger, fear, or anxiety can all rear their horrible heads at times, and families of AD patients are often just as surprised and confused about these unexpected emotions as are the patients. The important thing to keep in mind is that these negative emotions and behaviors are symptoms of the disease and are not conscious decisions on the part of your mother.

And as for finding answers to any questions you may have, the EMI unit should have staff trained in dementia care who can provide you with answers to your questions, or at the very least direct you to suitable resources in your area. If you haven't already considered it, it may also be helpful for you to join an Alzheimer's disease support group. The people in these support groups often are a wealth of knowledge and, more importantly, have experienced much of the same emotional roller coaster as you have undoubtedly experienced yourself.