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Management of patients with dementia involves matters of self-care, safety, and communication. Individuals with dementia are characteristically disorganized, forgetful, and inefficient in many of their activities making it difficult and unsafe for them to function independently. Complicating this, they may be impulsive, have limited insight into their abilities, and fail to learn from experience.
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Neuropsychiatric symptoms are common and almost all persons with dementia will experience them at some point during the course of their illness (97% in one series of patients with dementia followed over 5 years). Providers should inquire about them with patients and caregivers at each visit. Specifically, they may be labile and unstable, irritable, or anxious; they may be fearful, easily frustrated, or apathetic and withdrawn. They may wander at night or endorse paranoid thoughts or delusions. Because of circadian rhythm disturbances, patients with AD may tend to be awake and wandering during the night, leading to sleep deprivation in caregivers.
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These traits create special problems in managing and caring for patients with dementia, and many interactions with family and caregivers therefore focus on day-to-day management issues and behavioral problems. The following sections provide some general guidelines for addressing these issues. It is useful in many situations to refer patients and their families to groups that can provide counseling, home evaluations, and case management. (In some instances, there may be no more important knowledge for the primary doctor than familiarity with the capabilities of local support agencies.)
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In general, nonpharmacological strategies for behavior management should be attempted first, and if unsuccessful, medication trials may be indicated. In practice, many distressing symptoms, such as agitation, prompt providers to try medications concurrently.
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This area includes dressing, grooming, and hygiene. The best approach is to provide sufficient structure and guidance so that the patient can manage, while allowing some preservation of independence and choice. Individuals with MCI often get by with prompts and reminders. For individuals with more severe impairment, caregivers should offer a limited choice of clothing, food, or activities; use signs or pictures to identify important objects and locations; and emphasize routine and predictability. Breaking down complex and potentially overwhelming activities such as bathing into simple one-step tasks may keep these activities manageable well into the course of the illness. The caregiver may need to modify clothing, for example, by incorporating sweatshirts to avoid buttons, and using shoes with Velcro closures rather than laces. Incontinence often develops. Protective garments in clothing and timed toileting, for example, having the patient go every 2 hours while awake, may prevent frequent accidents.
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Individuals with dementia are at increased risk for accidents because of their problems with attention, perception, and judgment. They are also at increased risk of abuse, including physical, emotional, and financial.
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To assess risk of accidents, ask caregivers and patients about conditions at home, how often the patient is left alone, and whether he/she wanders, cooks, or self-administers medications (see Table 30-8). Where safety is unclear, more detailed information can be provided by an early home safety evaluation, often done by an occupational therapist.
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The following guidelines are designed to minimize the risk of household accidents:
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Carefully supervise use of medications.
Keep the home relatively free of clutter and keep passageways clear.
Install railings and other safety equipment, such as shower chairs and tub rails.
Use a night-light where necessary.
Remove stove and oven controls if necessary.
Use safety gates or install keyless locks on exterior doors if wandering is a problem.
Make sure patients wear medical and personal identification bracelets. Registering the patient in the Safe Return program via the Alzheimer’s Association is a common way to obtain identification bracelets or necklaces. (Access at http://www.alz.org/safetycenter/we_can_help_safety_medicalert_safereturn.asp)
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Another important safety issue concerns driving and dementia. Deficits in attention, reaction time, visual spatial abilities, and judgment typically impair the ability of individuals with marked cognitive deficits to operate a motor vehicle safely. Individuals with advanced dementia who continue to operate a car seriously endanger others as well as themselves. Unfortunately, patients with dementia may insist on driving because of their lack of insight into their problems, and caregivers may be reluctant to press the issue. Because driving is symbolic of independence, this often becomes an emotional issue for everyone involved.
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Confidentiality must be weighed against issues of competency, safety of the public, and the duty to warn. Legal requirements vary considerably between states. For example, in California, physicians are required by law to report patients with a diagnosis of AD or other related dementias. In the case of accident or injury, physicians who have failed to make such a report may be legally liable. Clinicians should inform themselves of the legal requirements in their own state regarding this issue.
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Advance care planning should be addressed as early as possible. Evidence has shown that patients are more likely to have their care preferences followed at the end of life with these in place, and routine documentation of these preferences helps that occur. Similarly, referral to social workers and specialized legal agencies can help ensure that the patient has adequate financial and personal protections legally and medically. It may be helpful to know of legal resources for patients and families in the local community.
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Individuals with cognitive impairment may have specific deficits in language comprehension and expression similar to the various forms of aphasia that occur in stroke patients. More common may be a generalized difficulty in communication secondary to a short attention span, memory problems, or confusion. Some guidelines for communicating with the cognitively impaired are presented in Table 30-12.
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Another factor affecting communication may be hearing or vision impairment, which is highly prevalent and often minimized by the patient. Therefore, we recommend asking about vision loss and referring to an ophthalmologist for full evaluation if there is any suspicion for vision loss. Hearing loss compounds cognitive difficulty profoundly. When speaking with someone with dementia, portable amplifiers, called “pocket talkers,” help ensure that the person can hear the conversation. These can be kept in the clinic for regular use. Trying a pocket talker, even if the patient denies significant hearing impairment, often reveals undercorrected hearing loss and improves communication tremendously.
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Cholinesterase inhibitors may confer mild benefits for patients with AD, vascular dementia, and DLB. These benefits, on average, are not clinically significant for cognition and are modest for global assessments; however, this class is approved by the FDA for mild-to-moderate AD. Anecdotal evidence suggests that a subgroup of patients may achieve clinically important improvements. The decision to initiate therapy with an acetylcholinesterase inhibitor should be based on evaluation of benefits and risks associated with an individual patient. A beneficial effect, that is, improvement or stabilization of target symptoms, would generally be expected within 6 months of initiation of therapy. Evidence is insufficient to determine the optimal timing or duration of therapy. Side effects of acetylcholinesterase inhibitors include nausea, anorexia, diarrhea, weight loss, syncope, and urinary frequency. An ECG should be checked after dose increases to monitor for bradycardia. Starting doses, respectively, of donepezil, galantamine, and rivastigmine, are 5 mg orally once daily, 4 mg orally twice daily, and 1.5 mg orally twice daily. The doses are increased gradually as tolerated.
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Memantine, an N-methyl-d-aspartate (NMDA) antagonist, may be helpful in patients with moderate-to-severe AD or vascular dementia, with or without concomitant use of an acetylcholinesterase inhibitor. Clinical trials have shown a statistically significant, but most likely not a clinically significant, improvement on standard tests of cognition. Some studies have also demonstrated improvements in behavior and quality of life with use of memantine. The starting dose is 5 mg daily; the dose may be increased by 5 mg in weekly intervals up to a maximum of 20 mg per day. Table 30-13 shows medications commonly used for AD and their recommended doses.
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Behavioral Interventions and Medication for Severe Behavioral and Psychiatric Symptoms
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Because of limited efficacy of many medications and higher risk of complications, nonpharmacological approaches should be attempted first before psychotropic medications.
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Nonpsychotic agitation deserves careful evaluation before a drug is prescribed. New agitation may represent delirium, undertreated pain, depression, a distended bladder, or fecal impaction. If these disorders are not contributing and if nonpharmacological approaches are inadequate, an empiric trial of analgesics such as acetaminophen, an antidepressant medication, or a mood stabilizer may be worthwhile. However, any empiric trial should be time limited, and consultation with a geriatric psychiatrist is recommended in recalcitrant cases if at all possible.
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When behaviors are severe and may lead to harm for the patient and caregiver, medications may be indicated. There is no clear consensus about pharmacological approaches to treatment of behavioral problems in patients who have not benefited from nonpharmacological therapies. The target symptoms—depression, anxiety, psychosis, mood lability, or pain—may suggest which class of medications might be most helpful in a given patient. Patients with depressive symptoms may show improvement with antidepressant therapy. In general, benzodiazepines should be avoided, especially for more than brief periods, as they have significant potential for causing sedation, confusion, ataxia, and falls.
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Despite the lack of strong evidence, antipsychotic medications are commonly used as first-line agents for the treatment of behavioral disturbances, largely because of the lack of alternatives. The newer atypical antipsychotic agents (e.g., risperidone, olanzapine, quetiapine, aripiprazole, clozapine, and ziprasidone) may be better tolerated than older agents (e.g., haloperidol), but confer an excess risk of stroke, weight gain, and hyperglycemia. Both typical and atypical antipsychotics are associated with an increased risk of death compared with placebo when used to treat elderly demented patients with behavioral disturbances. When the choice is made to use these agents, patients and caregivers should be carefully warned of the risks. It is prudent to check an ECG prior to beginning antipsychotic therapy, and to seriously consider other alternatives when a patient is found to have a prolonged QTc. Starting and target dosages should be much lower than those used in schizophrenia (e.g., haloperidol, 0.5–2 mg orally; risperidone, 0.25–2 mg orally). Federal regulations require that if antipsychotic agents are used in treatment of a nursing home patient, drug reduction efforts must be made at least every 6 months. If the problem continues, consider another agent or obtain consultation with a psychiatrist, preferably one specializing in geriatric psychiatry.
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Randomized controlled trials suggest that donepezil has no benefit when used to treat agitation in AD. However, if a medication such as a cholinesterase inhibitor or memantine is being considered for cognition, it is reasonable to see if it has an impact on behavior, as well. If at all possible, we recommend delaying the prescription of a second agent (e.g., antipsychotic or other psychoactive medication) until the impact of the cognitive agent medication can be evaluated.
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Caregiver involvement is essential to managing neuropsychiatric symptoms without medications. Common strategies for behavioral problems are maintaining and promoting adequate daytime physical and social activity, avoiding confrontational approaches by redirecting questions or topics of conversation, and consistently using reassuring and calming responses to a patient’s behaviors instead of anger or frustration. Guides and informational material may be a very useful resource for caregivers and can be easily downloaded from web sites such as http://www.indydiscoverynetwork.org or www.caregiver.org.
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Caring for cognitively impaired individuals is often exhausting and stressful, especially in the presence of neuropsychiatric symptoms. Primary care providers should ensure that caregivers also attend to their own needs and guard against fatigue and burnout. Caregiver-specific inventories can be administered, such as the Revised Memory and Behavior Problems Checklist, to quantify the patient’s behaviors and assess the caregiver’s emotional burden. A number of support services, such as the Family Caregiver Alliance (http://www.caregiver.org), offer education, support groups, and information about resources. Specialized case management and home consultation services can also be very helpful in assessing patient and family needs and locating additional services. Respite-care and day-activity programs may be invaluable in allowing stressed families and caregivers time off and providing needed stimulation and increased structure for the patient. Many experienced clinicians often assess stressed caregivers at each clinic visit.
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Nursing Home Placement
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In the management of demented patients, the issue often arises as to whether the patient can continue to be managed at home. This is an area fraught with strong feelings on the part of patient and caregiver alike, and it is often difficult to make objective decisions. Major predictors of nursing home placement include the presence of behavioral problems, dementia severity, and extent of caregiver burden. Some important considerations related to nursing home admission are as follows:
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Can the necessary level of supervision and care required by the patient be realistically and dependably supplied at home? Such issues as wandering and the potential for neglect and abuse should be considered here.
Is sufficient assistance available to caregivers for them to continue to care for the patient without becoming overstressed and burned out?
What financial resources are available for the patient’s care?
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All things being equal, many patients and caregivers prefer to remain in their own home. In many cases, however, doing so creates other significant problems, and however desirable this goal, it must be carefully weighed against issues of safety and practical limitations. In the advanced stage of dementia, when the patient becomes mute, bedbound, and incontinent, very often the services of a skilled nursing facility are required to ensure that the patient receives proper care. Nursing facilities should be chosen carefully; obviously, cost must be considered, but the quality of care must also be investigated. Information about both complaints and compliance with state regulations can be found through government agencies, advocacy groups, published reviews, and organizations (e.g., geriatric care programs) that frequently place patients in such facilities. Although definitive data are lacking, some studies suggest that Alzheimer’s special care units reduce behavioral disturbances and use of restraints. Some patients do better in structured environments such as Alzheimer’s special care units or Alzheimer’s day care programs than in less structured home settings.
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Dementia is a terminal disease, and in late stages the patient may become bedbound, unable to recognize family, and have difficulty swallowing. In these instances, hospice care is often appropriate (see Chapter 40).