0
1
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Establish and maintain an alliance with the patient and the family.

  • A solid therapeutic alliance is essential for good care.

  • Family members and other caregivers are an important source of information, since the patient is frequently unable to give a reliable history.

  • Because families are often responsible for implementing and monitoring treatment plans and because burden is often high among dementia caregivers, caregivers' attitudes and behaviors can have a profound effect on the patient, and they often need the treating physician's compassion and concern.

  • Clinical judgment is needed to determine under what circumstances it is appropriate or necessary to speak with caregivers without the patient present, as well as how to proceed with clinical care when there are disputes among family members.

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Provide education and support to patients and families.

  • Education should address the diagnosis, expected symptoms, and basic principles of care.

    • Understand that patients vary in their ability and desire to understand and discuss their diagnosis.

    • It may be helpful to reassure patients and their families that behavioral and neuropsychiatric symptoms are part of the illness and are direct consequences of the damage to the brain.

    • Respite care may be available from local senior services agencies, the local chapter of the Alzheimer's Association, religious groups, or Veterans Administration facilities. Other supportive resources may include social service agencies, community-based social workers, home health agencies, cleaning services, Meals on Wheels, transportation programs, geriatric law specialists, and financial planners. Useful information for caregivers is available from the Family Caregiver Alliance (www.caregiver.org).

  • Watch for signs of caregiver distress, including increased anger, social withdrawal, anxiety, depression, exhaustion, sleeplessness, irritability, poor concentration, increased health problems, and denial.

  • For caregivers, support groups, psychoeducational programs, psychotherapy, exercise interventions, and stress management workshops can be helpful. The local chapter or national office of the Alzheimer's Association (1-800-272-3900; www.alz.org), the Alzheimer's Disease Education and Referral Center (ADEAR) (1-800-438-4380; www.nia.nih.gov/Alzheimers/), and other support organizations may provide hotlines, educational materials, and information on other resources.

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Perform a diagnostic evaluation and refer the patient for any needed general medical care.

  • A thorough evaluation is often coordinated with the patient's primary care physician.

  • The evaluation serves to identify the specific etiology of the dementia syndrome that may guide treatment decisions, as well as to reveal any treatable psychiatric or general medical conditions that might be causing or exacerbating the dementia. Components of a basic evaluation are described in Table 1.

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Table Reference Number
Table 1. Components of a Basic Evaluation for Patients With Dementia
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Neuroimaging

  • The use of a structural neuroimaging study, such as a computerized tomography (CT) or a magnetic resonance imaging (MRI) scan, is generally recommended as part of an initial evaluation, particularly for patients with a subacute onset (less than 1 year), age at onset less than 65 years, vascular risk factors, or possible focal lesion. The value of imaging in patients with late-stage disease who have not been previously evaluated has not been established. Functional neuroimaging using positron emission tomography (PET) may contribute to diagnostic specificity (e.g., to differentiate Alzheimer's disease and frontotemporal dementia).

  • Neuropsychological testing may be helpful to differentiate among dementias, evaluate a patient with subtle or atypical symptoms, characterize the extent of cognitive impairment, establish baseline function, and guide treatment.

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Genetic Testing

  • Except in rare circumstances (notably the use of CSF-14-3-3 protein when Creutzfeldt-Jakob disease is suspected and recent stroke or viral encephalitis can be excluded), biomarkers remain investigational, and there is insufficient evidence for their utility in routine clinical practice. However, this area is evolving rapidly.

  • Genes involved in a small number of dementia syndromes have been identified, and genetic testing for these genes is available commercially or through research studies. However, genetic testing is generally not part of the evaluation of patients with dementia. If testing is obtained, pre- and post-test counseling is recommended.

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Assess and monitor psychiatric status.

  • Ninety percent of patients with dementia develop a neuropsychiatric or behavioral symptom during the course of the disease. Regular monitoring allows detection of new and evolving symptoms and adaptation of treatment strategies. It is particularly important to monitor symptoms after a medication dose has been lowered or discontinued.

  • Symptoms to assess include depression, suicidal ideation or behavior, hallucinations, delusions, agitation, aggressive behavior, disinhibition, sexually inappropriate behavior, anxiety, apathy, and disturbances of appetite and sleep. Cognitive symptoms include impairments in memory, executive function, language, judgment, and spatial abilities. Functional status may also be helpful to track over time.

  • Acute worsening of mood, behavior, cognition, or function may be associated with delirium, an occult general medical condition (e.g., urinary tract infection, dehydration), untreated or undertreated pain, or physical or emotional discomfort. For this reason, thorough assessment must precede intervention with psychotropic medications or physical restraint, except in an emergency.

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Monitor and enhance the safety of the patient and others.

  • Patients who live alone require careful attention. Events that indicate the patient can no longer live alone include several falls, repeated hospitalization, dehydration, malnutrition, dilapidated living conditions, or other signs of self-neglect.

  • All patients (and their caregivers) should be asked about suicidal ideation, plans, and history. If suicidal ideation occurs in patients with dementia, it tends to be early in the disease, when insight is more likely to be preserved. Interventions to address suicidal ideation are similar to those for patients without dementia and include psychotherapy; pharmacotherapy; removal of potentially dangerous items such as medications, guns, or vehicles; increased supervision; and hospitalization.

  • Agitation (e.g., physical aggression, combativeness, threatening behavior, hyperactivity, disinhibition) is most likely to occur later in the course of dementia, and often has multiple causes. The first step in treating agitation should be to investigate and address any underlying cause such as general medical conditions, depression, psychosis, pain, hunger, sleep deprivation, change in living situation, frustration, boredom, loneliness, or overstimulation. If the agitation is deemed dangerous to the patient or others, additional interventions may include providing one-on-one care, behavioral therapies, pharmacological treatment, or hospitalizing the patient.

  • Decisions about supervision should consider the patient's cognitive deficits, his or her environment, and the risk of dangerous activities.

  • Falls are a common and potentially serious problem for all elderly individuals, especially those with dementia. When appropriate, interventions include withdrawing medications that are associated with falls, central nervous system sedation, or cardiovascular side effects (especially orthostatic hypotension); modifying the environment (e.g., removing loose rugs, lowering the bed); and providing programs to strengthen muscles and retrain balance.

  • It is important to be alert to the possibility of elder abuse, financial exploitation, and neglect. Any concern, especially one raised by the patient, must be thoroughly evaluated.

  • Wandering may be associated with more severe dementia; dementia of longer duration; and depression, delusions, hallucinations, sleep disorders, neuroleptic medication use, and male gender. Preventive strategies include adequate supervision, environmental changes, a more complex or less accessible door latch, and electronic devices. Pharmacotherapy is rarely effective unless the wandering is due to an associated condition, such as mania. Provision should also be made for locating patients should wandering occur (e.g., by sewing or pinning identifying information onto clothes, placing medical-alert bracelets on patients, and filing photographs with local police departments).

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Advise the patient and family concerning driving and other activities that put others at risk.

  • The risks of driving should be discussed with all patients with dementia and their families, and these discussions should be documented. The patient's driving history, current driving patterns, transportation needs, and potential alternatives should be discussed. For patients with dementia who continue to drive, the issue should be raised repeatedly and reassessed over time. This is especially true for patients with Alzheimer's disease or other progressive dementias.

  • At this time, there is no clear consensus about the threshold level of dementia at which driving should be curtailed or discontinued.

  • For patients with mild impairment who are unwilling to give up driving, it may be helpful to advise them to limit their driving to conditions likely to be less risky (e.g., familiar locations, modest speeds, good visibility, clear roads).

  • There is some evidence and strong clinical consensus that individuals with moderate impairment should be instructed not to drive because of unacceptable risk of harm. Those with severe impairment are generally unable to drive and certainly should not do so.

  • Psychiatrists should familiarize themselves with state motor vehicle regulations for reporting individuals with dementia. In some states, disclosure is forbidden. In others, a diagnosis of dementia or Alzheimer's disease must be reported, and the patient and family should be so informed.

  • Similar principles apply to the operation of other equipment (e.g., firearms, heavy machinery, aircraft, lawn mowers) that puts the patient and others at risk.

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Advise the family to address financial and legal issues.

  • Advance planning may allow the patient to participate in decision making and may prevent families from having to petition the courts later for guardianship. Issues to address include the following:

    • The patient's preferences about the use of medications, feeding tubes, and artificial life support

    • The patient's preferences about participation in research studies

    • The need for a durable power of attorney, a living will, or an advance directive

    • The need to transfer financial responsibilities

    • The patient's vulnerability to financial exploitation

    • The need for planning to finance home health care and institutional care

    • Updating the patient's will

  • Referral to financial and legal experts may be necessary.

Table Reference Number
Table 1. Components of a Basic Evaluation for Patients With Dementia

References

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