Dementia: Factors Modifying Treatment Decisions

A. Comorbid Conditions

1. General medical conditions

The likelihood of chronic general medical illnesses and the likelihood of dementia both increase with age, so the two commonly coexist. The assessment and treatment of general medical comorbidity are complicated by memory impairment and aphasia, both of which interfere with the patient’s ability to provide a reliable description of symptoms. Resistance to physical examination, laboratory testing, and radiologic procedures can also complicate assessment. The involvement of family members and other caregivers in gathering a history and completing an evaluation is essential.

2. Delirium

Dementia predisposes to the development of delirium (227, 228), especially in the presence of general medical and neurological illnesses. In addition, medications needed to treat comorbid general medical disorders can lead to further cognitive impairment or to delirium, even when doses are appropriate and blood levels are in the nontoxic range. Compounds with anticholinergic effects (e.g., tricyclic antidepressants, low-potency antipsychotics, diphenhydramine, disopyramide phosphate) or histamine-2 activity (cimetidine, ranitidine) are particularly likely to cause delirium, but many classes of medications can do so (229). Of particular relevance to psychiatrists, delirium has been associated with virtually all psychotropic medications, including lithium, other mood stabilizers, tricyclic antidepressants, SSRIs, and benzodiazepines. Avoidance of unnecessary medications, use of the lowest effective dose, vigilant monitoring aimed at early recognition, a thorough search for causes, and prompt treatment may diminish the prevalence and morbidity of delirium.

3. Parkinson’s disease

Cognitive impairment coexisting with Parkinson’s disease requires a broad treatment approach. First, mild cognitive impairment may be partially ameliorated by dopaminergic agents prescribed for the treatment of motor symptoms, so both cognitive and motor symptoms should be carefully monitored, especially after any intervention. Second, the use of dopaminergic agents predisposes to the development of visual hallucinations and other psychotic phenomena, especially in patients with coexisting dementia, so these agents must be used with particular care, and the minimal dose needed to control the motor symptoms should be used. In addition, these patients, like other elderly and demented patients, are vulnerable to delirium due to medications and concomitant general medical conditions, so the development of these symptoms deserves a thorough evaluation. Third, if psychotic symptoms result in distress or dangerousness, the judicious use of an antipsychotic agent is indicated. Some clinicians prefer the use of low-potency antipsychotic agents (e.g., thioridazine). Others now favor clozapine, but it has received limited study (157). Fourth, the patient must be carefully assessed and treated for depression, which is common in Parkinson’s disease and may exacerbate or even be misinterpreted as dementia.

4. Stroke

For patients with dementia and a history of stroke, whether or not the strokes are responsible for or contribute to the dementia, it is critical to conduct a careful evaluation to determine the etiology of the strokes (e.g., atrial fibrillation, valvular disease) and to make any needed referrals for further evaluation and treatment. Beyond this, good control of blood pressure, and perhaps low-dose aspirin, may help to prevent further strokes. In addition, a trial of Hydergine, which appears to be possibly effective in dementia due to vascular disease, may be appropriate. Some clinicians favor pentoxifylline, alleged to improve cognition after stroke by increasing cerebral blood flow (230-232), but this treatment has limited support.

B. Site-Specific Issues

The care of patients with dementia should be adapted not only to the patient’s symptoms and associated general medical problems, but also to his or her environment. Certain issues arise frequently in particular care settings.

1. Home

Of the 3 to 4.5 million Americans with dementia in the United States, only about 1 million reside in nursing homes, leaving over 2 million individuals with dementia who reside at home (233). Psychosocial problems include the need for family care providers to work at jobs outside the home during the day and the adverse emotional impact on caregivers and children or grandchildren. Particularly difficult behavior problems for patients with dementia living at home include poor sleep, wandering, accusations directed toward caregivers, threatening or combative behavior, and reluctance to accept help; all of these are potentially solvable. Interventions with the family that focus on the specific behavior problem and, where appropriate, carefully monitored pharmacologic treatment of behavioral symptoms can be helpful. In addition, the use of home health aides, day care, and respite care may provide stimulation for patients and needed relief for caregivers. The psychological stress on families from Alzheimer’s disease appears to be more complex than simply the burden of caring for a disabled family member (234). It has been estimated that 30% of spousal caregivers experience a depressive disorder while providing care for a husband or wife with Alzheimer’s disease (235). The prevalence of depressive disorders among adult children caring for a parent with Alzheimer’s disease ranges from 22%, among those with no prior history of affective disorder, to 37%, among those with a prior history of depression (235).

2. Day care

Ideally, day care provides a protected environment and appropriate stimulation to patients during the day and gives caregivers a needed break to attend to other responsibilities. Some centers specialize in the care of individuals with dementia and may thus offer more appropriate activities and supervision. Anecdotal reports and practice support the benefit to patients of scheduled activities. However, behavioral symptoms can be precipitated by overstimulation as well as understimulation, so activities must be selected with care and participation should be adjusted according to each patient’s response. Of note, problems can arise when patients with different levels of severity are expected to participate together in the same activities.

3. Long-term care

A high proportion of patients with dementia eventually require placement in nursing homes or other long-term care facilities (e.g., assisted living, group home) because of the progression of the illness, the emergence of behavioral problems, the development of intercurrent illness, or the loss of social support. Approximately two-thirds of the residents of long-term care facilities suffer from dementia (233, 236), and as many as 90% of them have behavioral symptoms. Thus, these facilities should be tailored to meet the needs of patients with dementia and to adequately address behavioral symptoms (88, 237).

Research data on the optimum care of individuals with dementia in nursing homes are sparse. One important element is staff who are committed to working with demented patients and knowledgeable about dementia and the management of its noncognitive symptoms. Structured activity programs can improve both behavior and mood (88). Other factors valued in nursing homes include privacy, adequate stimulation, maximization of autonomy, and adaptation to change with the progression of the disease (see references 238, 239). Use of design features such as particular colors for walls, doors, and door frames is widely touted but lacks scientific support.

In recent years special care units have been specifically developed for persons with Alzheimer’s disease or other dementing disorders. There are few data to demonstrate that these units are more effective than traditional nursing home units (237), and clinical experience suggests that they vary a great deal in quality. However, the better ones may offer a model for the optimal care of demented patients in any nursing home setting.

A particular concern regarding nursing homes is the use of physical restraints and antipsychotic medications. The Omnibus Budget Reconciliation Act of 1987 (OBRA) regulates the use of physical restraints and many psychotropic medications in nursing homes. Psychiatrists practicing in nursing homes must be familiar with these regulations, which can generally be obtained from the nursing home administrator, local public library, or regional office of the Health Care Financing Administration.

Antipsychotic medications are used in nursing homes, as elsewhere, for the treatment of behavioral and psychotic symptoms. When used appropriately, these medications can be effective in reducing patient distress and increasing safety for the demented patient, other residents, and staff. Overuse, on the other hand, can lead to worsening cognition, oversedation, falls, and numerous other complications and can place patients at risk of tardive dyskinesia. Thus, the OBRA regulations and good clinical practice require careful documentation of the indications for antipsychotic medication treatment and available alternatives and outcomes. In the context of these regulations, a clinical strategy of carefully considering which patients may be appropriate for withdrawal of antipsychotic medications and being prepared to maintain use of the medications in some cases and reinstate them in others, as deemed clinically necessary, may be optimal (240). Of note, a structured education program for nursing and medical staff has been shown to decrease antipsychotic usage in the nursing home setting without adverse outcomes (240). Ongoing use of antipsychotic medication requires regular reassessment of medication response, monitoring for adverse effects, and thorough documentation. Tardive dyskinesia, for which older age, female gender, and brain injury are risk factors, deserves particular attention.

Physical restraints (e.g., Posey restraints, geri-chairs) are sometimes used to treat agitation or combativeness that puts the patient, other residents, or staff at risk. Use of restraints is fairly common in nursing homes (241). However, regulations and humane care support keeping the use of restraints to a minimum, and there is even a suggestion that restraints may increase the risk of falls and contribute to cognitive decline (242, 243).

Although few studies are available to guide the appropriate use of restraints in nursing homes, clinical experience suggests that restraint use can be decreased by environmental changes that reduce the risk of falls or wandering and by careful assessment and treatment of possible causes of agitation. Chest or wrist restraints are appropriately used during a wait for more-definitive treatment for patients who pose an imminent risk of physical harm to themselves or others (e.g., during evaluation of a delirium or during an acute-care hospitalization for an intercurrent illness). For long-term care facilities, geri-chairs may have a place in the care of patients at extreme risk of falling. In any case, regular use of restraints is not recommended unless alternatives have been exhausted. When they are used, they require periodic reassessment and careful documentation.

Documentation of the need for temporary use of restraints should discuss the other measures that were tried and failed to bring the behavior under control. Such measures include a) routine assessment to identify risk factors for falls that would, if addressed, obviate the need for restraints; b) bed and chair monitors that alert nursing staff when patients may be climbing out of bed or leaving a chair; and c) prompted voiding schedules through the day and night in order to decrease the urge for unsupervised trips to the bathroom.

4. Inpatient general medical or surgical services

Patients with dementia on general medical and surgical services are at particular risk for three problems, all of which can lead to aggressive behavior, wandering, climbing over bed rails, removal of intravenous lines, and resistance to needed medical procedures. First, cognitive impairment makes demented individuals vulnerable to behavioral problems owing to fear, lack of comprehension, and lack of memory of what they have been told. No data are available to guide treatment recommendations, but general practice supports having family members or aides stay with the patient as one preventive approach. Frequent reorientation and explanation of hospital procedures and plans, adequate light, and avoidance of overstimulation may also be useful. Second, persons with dementia are at high risk for delirium (227, 228). Prevention of delirium by judicious use of any necessary medications and elimination of any unnecessary ones, attention to fluid and electrolyte status, and prompt treatment of infectious diseases can also diminish morbidity. Occasionally, psychopharmacologic treatment, generally with a high-potency antipsychotic such as haloperidol, is necessary. Third, patients with dementia may have difficulty understanding and communicating pain, hunger, and other troublesome states. For this reason, the development of irritability and/or agitation should prompt a thorough evaluation to identify an occult medical problem or a possible source of discomfort. A significant part of the psychiatrist’s role in this setting is educating other physicians and hospital staff regarding the diagnosis and management of dementia and its behavioral manifestations.

5. General psychiatric inpatient units

Individuals with dementia may be admitted to psychiatric units for the treatment of psychotic, affective, or behavioral symptoms. For patients who are very frail or who have significant general medical illnesses, a geriatric psychiatry or medical psychiatric unit may be helpful when available. Indications for hospitalization include those based on severity of illness (e.g., threats of harm to self or others, violent or uncontrollable behavior) and those based on the intensity of services (e.g., need for continuous skilled observation, need for ECT or a medication or test that cannot be performed on an outpatient basis) (10, 11).

A thorough search for psychosocial, general medical, or noncognitive psychiatric difficulties that may be leading to the disturbance will often reveal a treatable problem. If it is reasonably safe, patients should be encouraged to walk freely. Both nonpharmacologic and pharmacologic interventions can be tried more readily and aggressively on inpatient units than in outpatient settings.

C. Demographic And Social Factors

1. Age

Because most dementias occur in the elderly, age is the major psychosocial factor affecting treatment. Individuals with dementia occurring in middle age (e.g., early-onset Alzheimer’s disease) are likely to have particular difficulty coping with the diagnosis and its impact on their lives. In addition, they may require assistance with problems not generally seen with older patients, such as relinquishing work responsibilities (particularly if their jobs are such that their dementia may put others at risk), obtaining disability benefits, and arranging care for minor children. On the other hand, extremely old patients may be frail and have multiple other general medical problems that lead to more difficult diagnosis and treatment and much greater disability for a given level of dementia.

2. Gender

Another critical area affecting treatment is gender. Dementia, particularly Alzheimer’s disease, is more common in women, partly because of greater longevity but possibly also because of other risk factors not yet identified. In addition, because of their greater life expectancy (and tendency to marry men older than themselves), women with dementia are more likely to have an adult child rather than a spouse as caregiver. Unlike an elderly spouse caregiver, who is more likely to be retired, adult child caregivers (most often daughters or daughters-in-law) are more likely to have jobs outside the home and/or to be raising children. These additional responsibilities of caregivers may contribute to earlier institutionalization for elderly women with dementia.

3. Other demographic factors

Perhaps the most critical demographic factor affecting the care of patients with dementia is social support. The availability of a spouse, adult child, or other loved one with the physical and emotional ability to supervise and care for the patient and communicate with treating physicians is critical in both the quality of life and need for institutionalization. In addition, a network of friends, neighbors, and community may play a key role in supporting the patient and primary caregivers.

Another factor is resource availability, which varies widely by geographic region and socioeconomic status. These issues need to be considered for all treatment decisions, but they have a particular impact on decisions about long-term care. A referral to the local chapter of the Alzheimer’s Association or a social worker or other individual knowledgeable about local resources, treatment centers, and Medicaid laws can be important in helping families find local treatment options that fit their needs and their budget.

Ethnic background also has an impact on caregiving style, symptom presentation, and acceptance of behavioral disorder. This needs to be taken into account in assessment and treatment planning.

4. Family history

When there are other cases of Alzheimer’s disease in the family of a patient with the disease, families may be particularly concerned about the risk to other family members. Such concern is warranted, as first-degree relatives of Alzheimer’s disease patients have a risk for the disease that is two to four times that for the general population, and four genes associated with Alzheimer’s disease have been identified (see section III.B.7). Families with multiple cases of early-onset (before age 60 or 65) Alzheimer’s disease may carry one of the known genes on chromosome 21, 14, or 1 (39-41). Even so, there are currently no associated genetic tests for the disease because it is not possible to screen for the specific mutations, which are often found in only a single family. However, it may be appropriate to refer such families to genetic counselors to help family members further characterize their risk and ensure that they receive up-to-date information on genetic testing and related issues. Late-onset Alzheimer’s disease can also run in families, but the only identified gene associated with this pattern is APOE-4, which also confers increased risk in early-onset and nonfamilial disease (42-44). Because APOE-4 is not found in many demented individuals and is found in many nondemented elderly individuals, it too is not considered appropriate for predictive testing for the illness (17, 18). However, information on the genetics of both early- and late-onset Alzheimer’s disease is evolving rapidly, so it may be appropriate to refer interested families to a local academic medical center or to the national information number (1-800-621-0379) of the Alzheimer’s Association for up-to-date information.

Excerpted from “The American Psychiatric Association’s Practice Guideline for the Treatment of Patients With Alzheimer’s Disease and Other Dementias of Late Life” This practice guideline was approved in December 1996 and was published in May 1997.

© Copyright 2000 American Psychiatric Association