Caregiving Questions

Based upon your description, it is possible that your husband may be suffering from alcohol dementia, which is similar to Alzheimer's disease but has a slightly different disease progression. Alcohol dementia is caused by excessive drinking over a long period of time. Your husband's behavior could also be the result of a number of other medical or psychiatric conditions, such as depression, vitamin B12 deficiency, hormonal imbalances, stroke, or stress, most of which are treatable. A doctor's diagnosis would therefore be very valuable in helping you know what you are dealing with. Call your husband's primary care physician and inform him or her of your husband's behavior. His doctor may have some suggestions for getting him in for an appointment. If your husband refuses to go, you may have to enlist the help of other family members or friends to get him to see the doctor.

Until you can get a medical assessment for your husband (and even afterward), try to avoid confrontational situations with him. Try not to argue with him or contradict him as this will only serve to agitate him more. Whenever possible, if you sense your husband becoming upset, change the subject or redirect his attention to a new activity. And even though it may be difficult, try to remain calm and do not shout at him—if he really does have dementia shouting will only make him more agitated.

You can also contact 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.

Dementia patients are often reported to have disturbances in their circadian rhythms leading to sleep-wake cycle disturbances. Several studies seem to indicate that the use of bright lighting in the care facility setting improves sleep quality in dementia patients, presumably by normalizing the day-night cycle. Thus, bright lighting improved the residents' sleep patterns (longer nighttime sleep with fewer nocturnal sleep interruptions), reduced residents' agitation, and lessened the incidence of depression. There do not appear to be any studies examining the effects of bright light therapy or full-spectrum lighting on visual hallucinations. So long as the lighting does not create a strong glare upon the floor (shiny floors are particularly susceptible to this and their use should be avoided in resident facilities), then it is possible it could benefit residents by improving their ability to see obstacles on the ground and thus avoid falls.

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.

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 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.

The unfamiliar surroundings of new home environment such as an assisted living facility, for example, can confuse and frustrate an Alzheimer's patient who has not come to fully accept their new circumstances. Patients can feel trapped and restricted by this type of environment, and can become anxious as a result. They may also feel as though they have been "set aside" and forgotten about in a facility or that they are being punished for something they have done, regardless of the level of caregiver skill or amount of care provided.

Because of the nature of the disease, patients will often have their oldest memories still intact—such as of their old homes. Perhaps their memory of "home" is a place where they felt safe and useful. Also, it is not uncommon for patients to want to assume the role of caregiver for other (usually long-deceased) loved ones. Whether or not they are overtly aware, the patient may feel alone, sad, and anxious over their impending fate. The patient may feel a sense of duty or responsibility toward these loved ones (or an old job, etc.) and therefore wants to go to them to fulfill this responsibility and perhaps feel useful again. Their desire to "go home" then most likely stems from their unease of their current surroundings. They need to be made to feel more at-home in their current environment.

Caregivers can help to make patients feel more at-home by getting patients involved in daily activities, by providing continual reassurance of the patients' general safety and value to society as a whole, and if there are other patients, helping them all to feel a sense of togetherness with their new "family". Additionally, the more freedom and responsibility (within reason, of course) a patient has in his daily routine, the more it may help him to feel at-home. For example, a patient should be encouraged to dress and groom himself to the best of his ability each day. This can help to give the patient a sense of self-reliance, accomplishment and worth, which can all help to increase their "at-home" feeling.

Many caregivers have reported that their patients sleep quite a lot during the day and feel tired all the time. Sometimes this is a side-effect of one or more of their medications, and sometimes it is because they are mildly depressed. Therefore, you may want to contact your husband's primary care physician to let him or her know what is going on with your husband. Perhaps an adjustment to his medications may help, or if he is not on any medications, the doctor can evaluate your husband for signs of depression. Antidepressants may be helpful in this case.

In the meantime, make sure your husband gets exposure to bright light (or sunshine) during the day and dim, calming lighting in the late afternoon and evening. This can help to keep a patient's internal clock set correctly so that, ideally anyway, they will want to sleep at night and stay awake during the day. You can also encourage your husband to perform some sort of physical activity during the day, as exercise can aid in establishing good sleep patterns. However, try not to overtire him with the activities, as this can be counterproductive and lead to more napping throughout the day.