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III. Specific Clinical Features Influencing the Treatment Plan

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A. Demographic and Social Factors

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1. Age

Patients and families with dementia occurring in middle age (e.g., frontotemporal dementia or early-onset Alzheimer's disease) may have unique and particularly difficult challenges in coping with the diagnosis and its impact on their lives. Early age of onset may be associated with a more rapid rate of decline (328). 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 puts others at risk), obtaining disability benefits, and arranging care for minor children. On the other hand, older patients may be frail and have multiple other general medical problems that create difficulties in diagnosis and treatment as well as greater disability for a given stage of dementia.

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2. Gender

Another important demographic factor affecting treatment is gender. There are more women with dementia, partly because of greater longevity, but also because Alzheimer's disease is more prevalent among women for reasons that are not known. 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 caregiver responsibilities may contribute to earlier institutionalization for elderly women with dementia.

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3. Ethnic and Cultural Background

Ethnic diversity affects the presentation, diagnosis, and treatment of dementia. Although APOE4 was initially believed to be a stronger risk factor for Alzheimer's disease in whites than in Asians or blacks, it is now believed that APOE4 is associated with similar risks for developing Alzheimer's disease across ethnic groups (329, 330).

Prevalence rates of dementia vary across ethnic groups. For example, compared with whites, blacks may have a higher prevalence of vascular dementia and a lower prevalence of Parkinson's disease (331). These differences are also affected by economic, educational, and co-occurring conditions (70, 332). One study of 240 blacks of U.S. and Caribbean origin indicated that in both Alzheimer's disease and vascular dementia, blacks may have higher rates of psychosis, whereas whites may have higher rates of depression (333).

Cultural differences may affect the family's perception of cognitive symptoms and therefore their report of them to the physician, as well as attitudes toward treatment (334). Ethnicity, race, and culture may influence interpretation of symptoms as well as attitudes toward nursing home placement; the clinician should be sensitive to varying beliefs about the desirability of such a step (70, 335). Cultural background also has an impact on social networks, caregiving style, presentation of disease symptoms such as depression, and acceptance of behavioral symptoms.

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4. Other Demographic and Psychosocial Factors

Another 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, communicate with treating physicians, and otherwise coordinate care may influence the patient's quality of life as well as the need for institutionalization. In addition, a social network of friends, neighbors, and community may play a key role in supporting the patient and primary caregivers. Spiritual supports and religious beliefs have been shown to have positive benefits for caregivers' well-being. These findings should be taken into account in assessment and treatment planning.

Resource availability varies widely by geographic region and socioeconomic status. This issue should be considered in all treatment decisions but has a particular impact on decisions about long-term care. A referral to the local chapter of the Alzheimer's Association or to a social worker or another 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 budget.

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B. Co-occurring Conditions and Other Dementias

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1. General Medical Conditions

Because the likelihood of chronic general medical illnesses and the likelihood of dementia both increase with age, the two commonly coexist. Memory impairment and aphasia, both of which interfere with the patient's ability to provide a reliable description of symptoms, complicate the assessment and treatment of general medical conditions. Resistance to physical examination can also complicate assessment, so laboratory testing and radiological procedures may become particularly important. The involvement of family members and other caregivers in providing history is essential.

Many medical conditions are known to have a significant impact on cognitive functioning. The identification and treatment of medical and psychiatric disorders that can adversely affect cognition are especially important. For example, appropriate management of diabetes mellitus may have beneficial effects on cognition (336, 337).

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2. Delirium

Dementia predisposes to the development of delirium (338–341), especially in the presence of general medical and other neurological illnesses. Delirium in persons with dementia negatively affects cognitive and functional ability, quality of life, and life span, as well as increases the need for institutionalization and rehospitalization and increases mortality (340).

Medications prescribed to treat co-occurring general medical conditions can lead to further cognitive impairment or to delirium, even when doses are appropriate and blood levels are in the nontoxic range. Prescribed and over-the-counter compounds with anticholinergic activity (e.g., tricyclic antidepressants, low-potency antipsychotics, diphenhydramine, disopyramide phosphate, benztropine), histamine-2 blockade (cimetidine, ranitidine), and narcotic properties are particularly likely to cause delirium (342–344), as are many other classes of medications. Of particular relevance to psychiatrists, delirium has been associated with virtually all psychotropic medications, including lithium, other mood stabilizers, antidepressants (including SSRIs), antipsychotics, and benzodiazepines (345). A comprehensive approach to delirium includes prevention by avoidance of unnecessary medications and use of the lowest effective dosage, early recognition of delirium through vigilant monitoring at regular intervals, and—when delirium does develop—a thorough search for other causes and prompt treatment to decrease the associated morbidity.

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3. Parkinson's Disease Spectrum Illnesses (Including Parkinson's Disease and Dementia With Lewy Bodies)

The cognitive impairment associated with Parkinson's disease and related illnesses (including dementia with Lewy bodies) requires a broad treatment approach that targets both cognitive and noncognitive neuropsychiatric symptoms. Mild cognitive impairment may be partially ameliorated by dopaminergic agents prescribed for the treatment of motor symptoms (346), so both cognitive and motor symptoms should be carefully monitored in assessing the benefits of dopaminergic enhancing therapies. However, the use of dopaminergic agents predisposes patients to the development of visual hallucinations and other psychotic phenomena (347), especially in patients with coexisting dementia, so these agents must be used with particular care, and the minimal dosage needed to control the motor symptoms should be prescribed. In addition, patients with Parkinson's disease spectrum illnesses are vulnerable to delirium from medications and concomitant general medical conditions, as discussed in Section III.B.2. Therefore, the development of these symptoms deserves a thorough evaluation. Both pharmacological and behavioral interventions have been shown to have beneficial effects for specific patients with dementia. However, strong evidence guiding when to use one form over another is lacking. A number of clinical trials have demonstrated the efficacy of acetylcholinesterase inhibitors on cognition in dementia with Lewy bodies and dementia with Parkinson's disease with effects similar to those seen in Alzheimer's disease (168, 348, 349).

Noncognitive neuropsychiatric symptoms often require treatment in patients with dementia with Lewy bodies. Behavioral disturbances are often difficult to control. If psychotic symptoms result in distress or danger, the judicious use of an antipsychotic agent, often at low doses, is indicated. Although all antipsychotic agents can aggravate the motor disturbances of Parkinson's disease, open-label data support the efficacy of second-generation antipsychotics for the treatment of psychotic symptoms associated with these conditions (350–353). Because antipsychotics can dramatically worsen dementia with Lewy bodies, they should be prescribed very cautiously. Depression is common in Parkinson's disease (354) and may exacerbate functional impairment or be misinterpreted as dementia. Data supporting the efficacy of psychotherapy or antidepressants for the treatment of depression associated with Parkinson's disease are modest, but clinical experience supports their use.

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4. Cerebrovascular Disease

Cerebrovascular disease can directly cause or contribute to dementia by means of single and multiple infarcts, hemorrhagic lesions, subcortical white matter disease, arteritis, and hypertension. For patients with dementia who have a history of cerebrovascular disease or who have evidence on neurological examination or neuroimaging of cerebrovascular disease, a careful evaluation is essential to determine the etiology of the vascular changes (e.g., hypertension, atrial fibrillation, or valvular disease) and to make any needed referrals for further evaluation and treatment. Epidemiological evidence suggests that good control of blood pressure and low-dose aspirin might prevent or lessen further cognitive decline (355, 356). The acetylcholinesterase inhibitors donepezil and galantamine have shown at most modest efficacy in treating cognitive impairment in patients with vascular dementia or mixed vascular dementia and Alzheimer's disease (357, 358), and there are safety concerns about the use of this class of medications in this population. Because there are no data on the specific treatment of neuropsychiatric complications of vascular dementia (359, 360), clinical practice extrapolates from studies of Alzheimer's disease or studies of dementia in general.

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5. Frontotemporal Dementia Spectrum Disorders

The spectrum of frontotemporal lobar degenerative syndromes includes frontotemporal dementia, primary progressive aphasia, semantic dementia, corticobasal ganglionic degeneration, progressive supranuclear palsy, and hippocampal sclerosis (361) and account for about 5%–10% of patients with dementia. Patients with frontotemporal dementia typically have significant alterations of personality and behavior, and the typical staging schema used for Alzheimer's disease (mild, moderate, severe) does not conform well to the typical natural history of frontotemporal dementia. Overall, there is very limited evidence supporting the use of any particular agent for frontotemporal dementia spectrum disorders (362). Only one small randomized controlled trial has evaluated the safety and/or efficacy of a treatment for associated cognitive or behavioral features (264, 362). This trial demonstrated that trazodone may be beneficial in decreasing problematic behaviors such as irritability, agitation, depressive symptoms, or eating problems in patients with frontotemporal dementias. In helping families understand and address specific aspects of frontotemporal dementia spectrum disorders, psychiatrists may want to recommend the book What If It's Not Alzheimer's? A Caregiver's Guide to Dementia (363).

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C. Site-Specific Issues

The development of a treatment plan for a patient with dementia focuses not only on the identification of specific symptoms and associated general medical problems but also depends on features of the environment in which the patient is cared for, as certain issues are specific to particular care settings.

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1. Home Care

The majority of Americans with dementia reside in the community (364), although as many as 90% will receive long-term care during their lifetimes (365). Caring for patients with dementia at home presents challenges of social isolation for the patient and emotional and physical strain on caregivers and others in the home. Care at home is complicated by the need for many family caregivers to work outside the home during the day. Providing care at home can also have adverse emotional effects on caregivers, as well as their children. The psychological stress on families of individuals with Alzheimer's disease and other dementias appears to be more complex than simply the burden of caring for a disabled family member (366). Older spousal caregivers who experience mental or physical strain are at higher risk for health problems and mortality than other caregivers (367, 368). 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 (369). 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 (369, 370). 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. However, with assessment and treatment, these symptoms are potentially modifiable. Multifaceted interventions with the family that provide emotional support, focus on the management of the specific behavior problem, and, where appropriate, include careful monitoring of the pharmacological treatment of behavioral symptoms have demonstrated efficacy in reducing caregiver depression, caregiver burden, and rate of nursing home placement (84, 87, 371). The use of home health aides, day care, and respite care may provide stimulation for patients and needed relief for caregivers. End-of-life care for patients with dementia is extremely demanding of family caregivers, with many reporting high levels of depressive symptoms while caring for their relatives with dementia. However, within 3 months of the death, caregivers experience significant declines in depressive symptoms (372).

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2. Day Care

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 day care centers specialize in the care of individuals with dementia and may offer more appropriate activities and supervision. Anecdotal reports and clinical experience 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. It is noteworthy that problems can arise when patients with different levels of dementia severity are expected to participate together in the same activities.

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3. Long-Term Care

A high proportion of patients with dementia eventually require placement in a long-term-care facility such as a nursing home, assisted living facility, or group home. Placement is usually due to the progression of the illness, the emergence of behavioral problems, the development of intercurrent medical illness, or the loss of social support. Both the patient's characteristics (e.g., race, functional dependence, impaired cognition, behavior) and caregivers' characteristics (e.g., older age, level of caregiver burden) are determinants of nursing home placement (335, 373). Approximately two-thirds of the residents of long-term-care facilities have dementia (374–376), and as many as 90% of them have behavioral symptoms. The number of individuals with dementia living in assisted living facilities is now equivalent to the number living in nursing homes (377). Thus, these facilities should be tailored to meet the needs of patients with dementia and to adequately address behavioral symptoms (120, 378). Well-trained staff are crucial to the humane care of patients with dementia. Knowledge about dementia, neuropsychiatric and behavioral symptoms, and approaches to improving caregiver well-being are essential elements of a staff training program (379, 380).

There is little evidence from randomized controlled trials that addresses the optimum care of individuals in nursing homes. One important element is employing staff who are committed to working with patients with dementia and are knowledgeable about dementia and the management of its noncognitive symptoms. Structured activity programs can improve both behavior and mood (120). Controlled research on psychotherapeutic interventions has been limited (see Section V.A). 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 381 and 382). Whether design features such as particular colors for walls, doors, and door frames affect quality of care remains unknown.

There is no evidence that specialized dementia care units produce better outcomes than traditional nursing home units. However, some such units may offer a model for the optimal care of patients with dementia in any nursing home setting. For example, Reimer et al. (383) reported that quality of life for older residents with dementia was the same or better in a purpose-built and -staffed specialized care facility than in traditional institutional settings.

A particular concern in nursing homes relates to the use of physical restraints and antipsychotic medications, which are regulated by the Omnibus Budget Reconciliation Act of 1987. Use of restraints and antipsychotic medications is fairly common in nursing homes, and psychiatrists practicing in such settings must be familiar with these regulations, which generally can be obtained from the nursing home administrator, local public library, or regional office of the Center for Medicare and Medicaid Services. Although few studies are available to guide the appropriate use of restraints in nursing homes, restraint use can be decreased by strong administrative support for a restraint-free culture, adoption of philosophy statements that promote a restraint-free environment, staff education programs, effecting environmental changes that reduce the risk of falls or wandering, and careful assessment and treatment of possible causes of agitation. Rates of restraint use have also been shown to vary with specific resident characteristics, the number of residents in a facility, and the nurse/resident ratio (384–386). Although chest or wrist restraints are occasionally used 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), the use of staff to provide constant, close supervision is preferable. For long-term-care facilities, geri-chairs may have a place in the care of patients at extreme risk of falling and for whom all other options have failed. Regular use of restraints is not recommended unless alternatives have been exhausted. When they are used, they require periodic reassessment and careful documentation.

The use of antipsychotic medications in nursing homes, as elsewhere, for the treatment of behavioral and psychotic symptoms (see reference 387 for a review) requires consideration of the potential benefits and side effects. When used appropriately and cautiously (see Sections II.C.5.b.1, and V.B.2.a.2), these medications can be modestly effective in reducing patient distress and increasing safety for the patient, other residents, and staff. Excessive dosing, on the other hand, and sometimes even appropriate use, can lead to worsening cognition, oversedation, falls, and numerous other complications including increased mortality, and place patients at risk for tardive dyskinesia and other serious medical adverse events (see Section V.B.2.a.2). Thus, regulations resulting from the Omnibus Budget Reconciliation Act of 1987 and good clinical practice require documentation of the indications for antipsychotic medication treatment, a discussion of available alternatives with the family or other surrogate decision makers, and the identification of treatment outcomes. In the context of these regulations, the psychiatrist should regularly reassess patients for medication response and adverse effects, consider which patients may be appropriate for withdrawal of antipsychotic medications, document the clinical reasoning for maintaining their use, and reinstate their prescription, as deemed clinically necessary (229). It is noteworthy that a structured education program for nursing and medical staff has been shown to decrease antipsychotic usage in the nursing home setting without adverse outcomes (120, 229, 388).

Additional aspects of physical restraint use and antipsychotic medication prescribing are described in Sections II.B.4.b and II.C.5.b.1, respectively.

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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 patients with dementia 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 a preventive approach of having family members or aides stay with the patient. Frequent reorientation and explanation of hospital procedures and plans, writing down important information for the patient, maintaining adequate light, and avoidance of overstimulation may also be useful.

Second, persons with dementia are at high risk for delirium, as discussed in Section III.B.2 (338–340, 389). 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. Inouye et al. (26) showed the efficacy of a protocol of orientation strategies and therapeutic activities to prevent delirium in hospitalized older adults, many of whom had dementia. Occasionally, psychopharmacological treatment for cognitive impairment (e.g., with a cholinesterase inhibitor) and for behavior disorders (antipsychotic agents) is used in the management of patients with delirium, but no controlled trials exist (340).

Third, patients with dementia may have difficulty understanding and communicating pain, hunger, and other uncomfortable 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.

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5. General Psychiatric Inpatient Units

Individuals with dementia may require admission to a psychiatric unit for the treatment of psychotic, affective, or behavioral manifestations of neuropsychiatric disorders. 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. Hospitalization may be indicated because of the severity of symptoms, such as psychosis, depression, threats of harm to self or others, and violent or uncontrollable behavior. It may also be indicated because of the intensity of services required for treatment such as continuous skilled observation, ECT, or a medication or diagnostic test that cannot be performed on an outpatient basis (for literature review, see reference 1).

A thorough search for environmental, general medical, or other psychiatric difficulties that may be leading to the neuropsychiatric disturbance will often reveal a treatable problem. Both nonpharmacological and pharmacological interventions can be tried more readily and aggressively on inpatient units than in outpatient settings.

References

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