Caregiving Questions

If the patient can still swallow properly, then assisted feeding could potentially be used instead of tube feeding. As well as being a potential alternative to tube feeding, the human contact involved with hand feeding may actually benefit the patient. The patient's physician along with a specialist such as a speech therapist can help to determine whether hand feeding is an option based on whether or not the patient is still physically capable of swallowing. Such specialists can also demonstrate the proper techniques for assisted feeding. If, however, the patient can no longer swallow correctly anymore, then a feeding tube may be necessary. For the caregiver of a dementia patient, deciding on whether or not to use a feeding tube can be a very difficult decision. So be sure to discuss this decision thoroughly with the patient's family and doctor, taking into account whatever the patient's wishes or preferences—stated or otherwise—on tube feeding may have been.

Your mother's disinterest in her surrounding could be a part of disease progression, or could be indicative of mild depression. Depression is not uncommon in dementia patients, and can usually be diagnosed and treated by a physician. You may want to consult her primary doctor to get his or her opinion. In the meantime, try your best to encourage your mother to venture out of her room and into the social areas of the unit. She may be reluctant to participate in any activities, which is fine, though she may need some gentle encouragement to go even if it literally means holding her hand for the first few outings.

Our website contains helpful information for caregivers on issues affecting everyday life. To help prevent falls, make sure that there flooring is not slippery or that there are any dangerous obstacles in the way. Tack down or remove rugs that refuse to stay put, and use a night light in any dimly lit areas of the home that she needs to walk through. You can also try contacting your mother's primary health care physician about her symptoms. An inner ear infection or a mild case of vertigo can sometimes case people to be unsteady on their feet and fall over unexpectedly.

And even though your mother seems resistant to letting other people besides you help, for her sake and yours it is important to be persistent about allowing others to help. Taking care of a loved one with Alzheimer's disease is very challenging. Therefore, for your own health and happiness, encouraging assistance from your family will be very beneficial to you. Also in doing this, your mother will hopefully become more accustomed to others caring for her, which can be helpful should her condition worsen. To keep her mind at peace, be sure to frequently reassure her that she is loved and will always be cared for.

It is good that you try to keep a positive attitude, but this is not a disease for you and your mother to face alone. Despite the falling out with your family, caring for an Alzheimer's patient is not something you should consider attempting all by yourself, particularly at your young age, without some additional support. The responsibility is too great, and both your health and your mother’s health may suffer if you try to go it alone. So please attempt to put any differences aside (and ask your mother and other family members to do the same) when you contact your family to let them know what is going on. Your mother may refuse or may not want you contacting them, but inevitably you both will really need their support, and the sooner you make peace the better. What is family for if not for supporting one another?

If your mother has not already done so, she should meet with a lawyer to resolve any legal and/or financial matters. Your mother may be eligible for financial assistance, which you can search for in the Financial Aid section of our website. Additionally, you may want to consider joining an Alzheimer's support group. 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." You can also try talking to a school guidance counselor, clergy or other spiritual advisor, or any other adult you feel comfortable discussing the matter with. And although it may seem impossible at times, the best you may be able to do is to focus on the immediate situation and not get too overwhelmed by what the future may hold. In other words, just try to take one day at a time.

Is there a reason that you think the medications should be discontinued—such as health complication directly related to one of the drugs—or are you just thinking about the future of caring for your husband when at some point he will no longer be on the medications? The drugs still may be benefiting your husband, albeit maybe not as effectively as they once did. In general, the combination of a cholinesterase inhibitor (such as donepezil (Aricept®) and memantine (Namenda®)) is common in the treatment of Alzheimer's disease. There is some evidence that individuals with moderate to severe Alzheimer's who are taking a cholinesterase inhibitor benefit more by also taking memantine. The combined benefits of these two agents (in terms of improvements on cognition and behavior) have been demonstrated to increase with time and have been noted to persist over the duration of treatment. In your husband's case, therefore, there is the possibility that discontinuation of his medications could certainly make caring for him more difficult. If you have not already done so, please discuss the matter with your husband's physician.

Although memantine is generally well-tolerated, donepezil users commonly report such side effects as diarrhea, nausea, vomiting, fatigue, insomnia, muscle cramps, and loss of appetite. If your husband has started to develop a number of side effects or a particular side effect has become much more serious, his doctor may be able to adjust his dosages or try a different cholinesterase inhibitor. Unless specifically directed to do so by a doctor, you should never abruptly cease giving an Alzheimer's patient a prescribed medication because there may be serious side effects associated with withdrawal of the drug.

Keeping an Alzheimer's patient on a regular schedule can be quite beneficial, as it can help to lessen anxieties about "what comes next?" and provide a sense of order and normalcy in the patient's oftentimes confusing world. While it may not be imperative that a recently diagnosed dementia patient is on a strict daily schedule, the sooner a daily routine is implemented (even if it starts out only loosely organized), the easier it will be to transition to a more structured schedule later on. A regular schedule will become more necessary and important as a patient's disease progresses and he or she is less able to think rationally and coherently. It may not always be obvious to the caregiver at what point a patient would actually start benefiting from a schedule. Therefore, it is just easier to already have some sort of schedule in place, and then you can gradually add more detailed activities (e.g., nap times, meals, snacks, toilet breaks, bedtime, etc.) as necessary based upon the needs and ability of the patient.

It is not uncommon for Alzheimer's patients to display hostility toward others in their environment, nor is it uncommon for Alzheimer's disease patients to be verbally abusive toward their caregivers and loved ones. Aggressive or argumentative behavior (verbal or physical) is one of the more disturbing and difficult behaviors to deal with in Alzheimer's disease. Please tell your mother to remember that your grandmother's behavior is a function of the disease, and that as bad as her remarks may seem, they are not reflective of her true feelings. As the disease progresses, changes occur in the brain and body. At times, Alzheimer's disease patients can become overwhelmed by confusion and can become extremely upset. Oftentimes, these behavior problems occur in the evening. Perhaps dealing with a confusing and seemingly threatening environment all day has tired your grandmother, causing negative emotions to surface which are then directed against others. Advise your mother to remain calm and quiet if she senses your grandmother becoming angry. Avoid reasoning or arguing with your grandmother if she seems very agitated because it will not help her and may even make her more upset. Instead, try having your mother redirect your grandmother's attention to a new subject or activity.

And if your mother has not already done so, she should consider joining an Alzheimer's support group. You can search for Alzheimer's caregiver and patient support groups in her area by visiting our "Resources" section, such as under the Caregiving and Caregiver Support heading in "Helpful Organizations."

You can read an extensive review of numerous studies analyzing various design aspects of dementia facilities in the following article, which can be purchased through the journal or can obtained for a minimal fee from a medical or research library:

Day K, Carreon D, Stump C. The therapeutic design of environments for people with dementia: a review of the empirical research. Gerontologist. 2000 August; Volume 40, Issue 4, pages 397-416.

Although flooring color was not specifically addressed in this review, the authors did emphasize the fact that dementia patients often benefited from high contrast colors (such as on doors or to demark specific areas, etc.) and bright lighting. Also, because dementia patients often have vision deficits associated with normal aging and/or other disorders, they similarly benefited from environments designed to reduce glare and enhance depth perception. Patterned flooring was generally not recommended expect in front of exits. A number of studies in the above review, for example, found that floor grid designs acted as a sort of barrier to decrease escape attempts, with the theory being that dementia patients (particularly those with impaired vision) may mistake a two-dimensional floor pattern for a three-dimensional physical barrier and thus are deterred from exiting. Beyond that, however, there did not appear to be any recommendations regarding floor color.