General Management Goals

The first goal is to diagnose any treatable memory problems. These include cases in which the problem is secondary to a treatable illness, such as depression or a systemic disease. Memory problems arising from medications may be treated by discontinuing any unneeded medications or considering alternative medications for needed treatments.

For untreatable causes of memory disorders, the main goal is to establish a framework for the care of patients who are or will be unable to take care of themselves. Informing the patient involves judgment about what information is useful to the patient. On the one hand, it is desirable to have the patient feel that he or she is at the center of the management goals. On the other hand, patients with severe memory disorders remember little of what is told to them, and discussions may produce distress for the patient with no benefit.

A primary consideration is the safety and security of the patient. Patients with dementia or pure amnesia have a limited ability to take care of themselves. Patients should be protected, therefore, from taking actions that may cause injury to themselves and others and for which they can no longer be held responsible. If a patient is still working, a plan for retirement should be initiated. A plan for the daily supervision of the patient should be developed that takes into account the present mental status of the patient and the resources of the family. It is usually advantageous, when possible, for the patient to sustain habits of daily activities in a familiar environment because these habits rely on abilities that are the last to decline. Supervision of the patient must be considered in terms of medical care, diet, medications, and daily activities. A common and difficult problem is determining when certain activities, particularly driving, become potentially dangerous. Legal issues, such as conservatorships, often arise at some stage of the disease. The nature of these issues varies a great deal between patients with chronic amnesia, in which the patient's judgment may remain intact, and those with dementia, in which judgment typically declines considerably. In both cases, however, patients cannot be responsible for or take care of themselves. For those with progressive diseases, however, hospitalization is inevitable.

Information given to family members is critical in several respects. First, they have to understand what the patients can and cannot do for themselves. This is important not only for practical reasons but also because uninformed family members may misinterpret the actions of a memory-impaired patient as reflecting poor motivation or judgment. Therefore, family members must have as clear a picture as possible about the patient's abilities and disabilities.

Important information includes whether the memory impairment is chronic and whether it is likely to improve or become worse. It is useful for family members to understand whether the memory disorder is global or limited. It is also important for them to understand how pervasive a declarative memory disorder can be because few people appreciate how memory constantly supports the activities of daily living, including the taking of medications, preparing or eating meals, paying bills, and so on. Often, patients and family members are surprised by the contrast between anterograde amnesia and relative preservation of memory for remote periods. The severity and purity of the memory disorder dictate whether the patient can provide some degree of compensation in daily life. For example, patients with mild or moderate amnesias and without other major cognitive deficits can use notes or computers, especially small portable computers, to keep a useful record of goals and appointments. Even in these cases, however, frequent supervision is needed because important information may be ignored. Patients with severe amnesia or substantial additional cognitive deficits often cannot use such external memory devices effectively because they cannot even remember to use the devices.

It is also helpful to remind family members that memory-disordered patients retain many of their intellectual and emotional capacities and therefore need to have an active, regular schedule. Even patients with substantial memory or cognitive problems can slowly adapt to a regular, well-structured schedule. It is good to maintain a relatively normal sleep-wake cycle that ensures a good rest at night. This may require efforts to keep the patient awake during the day. Medications may be required to sustain a healthy sleep-wake cycle. Conversely, unexpected events can be exceptionally distressing to patients who cannot cope with novel circumstances.

In many respects, the diagnosis of dementia or chronic amnesia is as devastating to family members as to the patients. Family members face a long and difficult personal path in terms of emotional, financial, and often legal issues. This burden falls on the very shoulders of those who must now take exceptional responsibility for the care of their spouse, parent, or sibling. It is not uncommon for them to have strong feelings of denial, guilt, or blame. These feelings may not only affect the family members but also compromise the supervision of the patient. It is important to monitor the mental health of family members and to encourage the use of appropriate resources, including social services and support groups.

Finally, medical care for the memory-disordered patient must be maintained. For example, a number of diseases that lead to memory disorders also lead to seizures that must be treated. Medical supervision is challenging because amnesic patients are often unable to provide any useful history, and demented patients may be unable to answer even simple questions about their present condition.

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