Diagnosis and Management of Dementia in Long-Term Care


Consuelo H. Wilkins, MD, CMD, Kyle C. Moylan, MD, and David B. Carr, MD, CMD

INTRODUCTION With as many as 12% of individuals over age 65 and half of all individuals over age 85 affected by dementia of the Alzheimer’s type,1 the economic and social impact of this disease is tremendous.2 Due to worsening cognitive function, concurrent physical declines, and changes in behavior, persons with Alzheimer’s disease (AD) and other dementias often require management in a long-term care setting. It is estimated that 60-80% of elderly nursing home residents have dementia.3 Since increasing age is associated with both dementia and nursing home admissions, the number of persons with dementia residing in nursing homes is expected to increase.4 Additionally, the average length of stay for nursing home residents is increasing, with more than one-third residing in nursing homes for three years or longer.4 Although many older adults are admitted to nursing homes after the diagnosis of AD, the longer duration of stay may result in more individuals developing and being diagnosed with dementia after their admission to a skilled nursing facility. DIAGNOSIS OF AD IN THE NURSING HOME The diagnostic criteria for AD require a history of a gradual onset and progressive decline in memory with at least one other cognitive domain affected.5 The cognitive impairment must also negatively impact the ability to perform activities at the previous level of function. Establishing a diagnosis of AD in persons recently admitted to a nursing home can be challenging, especially if the individual was not previously known by the clinician. An important component of the initial assessment is an interview, in person or by phone, with a family member or friend who can provide details of the cognitive and physical function of the individual prior to admission. A list of pertinent questions that will assist in the diagnosis of dementia is included in Table I. While administering a cognitive screening tool may be helpful, the informant’s sensitivity to early cognitive change can exceed that of neuropsychologic tests.6 However, there are several screening tools available to the clinician including the Short Blessed Test7 and the Mini-Mental State Examination,8 which are relatively easy to administer. Caution must be used in interpreting the results of these tests, since older adults with higher educational levels may score in the normal range, and less educated persons or those with sensory deprivation without cognitive decline may have errors. The key is to focus on whether there has been a decline from the previous level of function. Although the screening tools may be less important in establishing the initial diagnosis, they are sometimes useful in subsequent assessments to follow cognitive decline. Yearly cognitive assessments are recommended in persons without a prior diagnosis of dementia, and twice-yearly follow-up assessments should be considered in those with known cognitive impairment. A review of medications, and determinations of thyroid function and vitamin B12 levels is warranted to exclude potential contributors to cognitive dysfunction in persons with cognitive impairment. NON-ALZHEIMER’S CAUSES OF COGNITIVE IMPAIRMENT Admission to a nursing home is often prompted by an increased need for assistance with activities of daily living (ADLs) or by behavioral changes. Since dementia can be associated with both, it is important to consider AD and other causes of cognitive impairment in the differential diagnosis. Hallucinations and delusions may occur in moderate and severe AD; however, if persons with mild memory loss have hallucinations or delusions, dementia with Lewy bodies (DLB) must be considered. Dementia with Lewy bodies is characterized by cognitive impairment, prominent hallucinations, parkinsonism, and fluctuations in attention and alertness. Unexplained falls, delusions, syncope, and sensitivity to neuroleptics can support the diagnosis of DLB. The latter issue is important when determining appropriate drug treatment for psychosis, and there are data to suggest that these persons may be more responsive to cholinesterase inhibitors. Frontotemporal dementia is less common, but should be considered if early loss of personal and social awareness, hyperorality, and pronounced language dysfunction are observed, especially in persons under 70 years of age. Vascular disease often coexists with AD and other dementias, but certainly can occur as the primary cause for cognitive impairment. Vascular dementia due to cerebral infarcts is the most common clinical diagnosis and is characterized by an acute cognitive decline temporally related to an acute cerebrovascular event. The history of an acute-onset or stepwise decline in cognition, and evidence of cerebral infarct by neuroimaging, are generally sufficient for the diagnosis of vascular dementia. The presence of infarcts on brain imaging alone, however, is insufficient for the diagnosis since infarcts often coexist with other dementias. Additionally, other vascular changes resulting in cognitive impairment, such as cerebral amyloid angiopathy and subcortical arteriosclerotic disease, may present with an insidious onset similar to AD, but with more executive dysfunction (ie, sequencing, abstract thinking, organization). Depressive symptoms may be among the initial presenting features of dementia, and depression often coexists with dementia. Consequently, distinguishing depression from early cognitive impairment can be challenging. Although symptoms of major depression can mimic dementia, cognitive impairment associated with depression is usually not reversible.9,10 The majority of older adults with depression and cognitive impairment will continue to have cognitive impairment even after the depressive symptoms improve. Interviewing the resident and an informant is key to differentiating the two disorders. Using a screening tool such as the Geriatric Depression Scale in the early stages of the disease11 may also be helpful. Characteristics of the most common causes of cognitive impairment are listed in Table II. TREATMENT OF DEMENTIA IN LONG-TERM CARE The treatment of residents with dementia must be individualized to meet their physical, spiritual, and psychosocial needs. Communicating with the resident, family, and other members of the health care team is extremely important in delivering quality care. Review of Medications Initial management of dementia should include addressing potential contributors to cognitive impairment such as adverse medication effects. Nursing home residents are prescribed more medications than any other patient group, and are likely to suffer from adverse effects of these medications.12 Residents with dementia are particularly susceptible to the adverse effects of medications on the central nervous system, which can result in delirium, dizziness, functional decline, injurious falls, anorexia, and disrupted sleep patterns. Criteria for inappropriate medication use in these residents have been adopted by nursing homes.13 Classes of drugs to avoid or minimize include antihistamines, traditional antipsychotics, tricyclic antidepressants, bowel/bladder antispasmodics, benzodiazepines, muscle relaxants, and barbiturates. Treatment of Cognitive Impairment Cognitive symptoms of dementia may include declines in memory, language, praxis, and executive function. These changes can impair the person’s ability to perform self-care, participate in activities, and communicate with others. Two classes of medications have been approved by the Food and Drug Administration (FDA) for the treatment of cognitive symptoms due to AD: cholinesterase inhibitors and N-methyl-D-aspartate (NMDA) receptor antagonists. Three cholinesterase inhibitors—donepezil, rivastigmine, and galantamine—are routinely used and have similar efficacy and side effects. These drugs were initially studied in community-dwelling patients with mild-to-moderate AD, and have shown consistent but modest delays in cognitive decline.14-16 Clinical stabilization should be expected rather than frank improvement in cognition. Given the lack of other effective and safe drugs for the treatment of dementia, their clinical use has been expanded to persons with moderate-to-severe AD17 and those with non-Alzheimer’s dementia.18 Although cholinesterase inhibitors are generally well-tolerated, their efficacy and cost-effectiveness in the nursing home setting are unclear.19,20 These agents have been shown to preserve the ability to perform ADLs in some studies,21,22 which remains a worthwhile goal for residents in the nursing home, and they may reduce costs of care. Some data suggest that cholinesterase inhibitors may also have a role in managing problem behaviors. In light of the potential risks associated with antipsychotic agents outlined below and the lack of efficacy for other medications, cholinesterase inhibitors are an attractive agent for the first-line management of both cognitive and neuropsychiatric symptoms of dementia.19,23 Prior to initiating a cholinesterase inhibitor, the rationale and expectations should be clearly outlined to the resident and his or her surrogate decision makers. Adverse effects, including nausea, diarrhea, and anorexia, can be minimized by appropriate dose initiation and titration (Table III). Memantine is the only currently available NMDA receptor antagonist, and was recently approved for the treatment of moderate-to-severe AD.24 It may reduce functional and cognitive decline and is generally well tolerated. One advantage of memantine is that it has been initially studied in persons with more severe dementia who are likely to require long-term care. Dose titration is recommended to minimize side effects. Combination therapy with both memantine and a cholinesterase inhibitor appears to have additive benefits.25 A summary of the medications used for the treatment of AD is shown in Table III. Persons with vascular dementia and other dementia subtypes often have cardiovascular and cerebrovascular risk factors such as hypertension, diabetes, atrial fibrillation, elevated homocysteine, and dyslipidemia. Appropriately addressing these risk factors may prevent further physical and cognitive decline regardless of the underlying etiology of the dementia. Data would indicate that similar outcomes can be achieved by treatment with cholinesterase inhibitors in mixed or vascular dementias.26 Treatment of Behavioral Symptoms Neuropsychiatric symptoms affect many individuals with dementia and often contribute to nursing home placement. Acute changes in behavior are often the manifestation of a change in physical health, such as a urinary tract infection, pneumonia, or an adverse drug reaction. Chronic behavioral problems include wandering, agitation, aggression, delusions, hallucinations, repetitive vocalizations, and refusal of care. Observed behaviors can be the result of comorbid psychiatric diseases (depression, anxiety, psychosis, etc), which can be difficult to diagnose in the setting of dementia. The mnemonic DRNO (Describe the behavior, Reason for the behavior, Nonpharmacologic approach, Order medication as a last step) may provide a useful approach to managing these behaviors. The goal in addressing difficult behaviors is to specifically describe the unwanted activity, and identify any precipitants (eg, roommate stress, pain, need to void, anxiety). Nonpharmacologic approaches based on behavioral interventions and restructuring the environment should be attempted first and are listed in Table IV.27 Medications should be the last step unless the behavior poses an immediate threat to the person or others. Atypical or “novel” agents for psychosis have been widely embraced, but are inadequately studied in older adults23 and may cause sedation, impaired balance, weight gain, glucose intolerance, and orthostasis. Persons with DLB are particularly susceptible to the extrapyramidal side effects of antipsychotics and may develop severe parkinsonism. Despite these concerns, newer antipsychotics can be useful for managing difficult behaviors. Based on the available literature and experience, a summary of pharmacologic agents that may be used for behaviors is listed in Table V. For difficult cases, referral to a geropsychiatrist is advised. The FDA recently disseminated a public health advisory regarding untoward deaths from “novel” antipsychotic use in elderly persons with behavioral disturbances.28 Specifically, the FDA reported on a total of 17 placebo-controlled trials that were performed with olanzapine, aripiprazole, risperidone, and quetiapine in elderly persons with dementia and behavioral disorders. Fifteen of these trials showed an increase in mortality in the drug treatment group compared to the placebo group. These studies enrolled a total of over 5000 individuals, and several analyses have demonstrated a 1.6-fold increase in mortality. The specific types of deaths included heart failure, sudden death, or infections (pneumonia).28 Although these studies are not yet available in peer-review format, the findings appear to be robust and need to be taken into consideration when prescribing these types of medications. It should also be noted that the FDA plans to label these medications with a “Black Box” warning, and they also will expand this warning to other medications, such as clozapine and ziprasidone. These agents should be used with particular caution in persons with cardiovascular and cerebrovascular disease. In many residents with dementia and behavioral disturbances, the risk/benefit ratio for prescribing these medications still warrants utilization of these drugs. Each case should be individualized and a specific determination made whether to initiate the medication or to taper and discontinue these agents. Until further data are available, the following are recommendations regarding antipsychotic drug use in persons with dementia: • Efforts should be made to determine reversible and treatable causes for behavioral problems in persons with dementia (eg, infections, drugs, pain control). • Attempts should be made to handle behavioral difficulties using nonpharmacologic methods. • Cholinesterase inhibitors with or without memantine should be considered for behavioral symptoms, and antidepressants should be considered when depressive or anxiety symptomatology is present. • If an antipsychotic medication is to be initiated or continued, discussion with the resident and family should occur regarding the recent FDA findings, and the discussion of the acceptability of these risks should be documented in the resident’s chart. • Residents should routinely be monitored for hyperglycemia, weight gain, excessive sedation, and parkinsonism. ETHICS AND END-OF-LIFE ISSUES When discussing medical options, all parties should be aware of the risks and benefits, the probable outcome of the intervention or refusal of the plan, and any additional alternatives to the diagnostic test or procedure.29 The residents’ decision-making capacity should be routinely assessed since many are able to voice their desires in the mild and moderate stages of dementia. Determining capacity should include assessing the ability to communicate choices, understand and retain relevant information, appreciate the situation and its consequences, and manipulate information rationally.30 Attempts to solve differences of opinion should be made with family conferences to include all members of the treatment team and concerned family members. Weight loss and dysphagia are often common in the care of the resident with advanced dementia. In general, weight loss is considered significant if there is a 5% loss of body weight in one month, 7.5% loss in three months, or 10% loss in a six-month period of time.31 Weight loss and anorexia have many potential causes including restricted diets, poor dentition, thyroid disease, medications (cholinesterase inhibitors, selective serotonin reuptake inhibitors, diuretics), food preparation and presentation, and possibly ethnic food preferences. Management of weight loss should include treatment of reversible causes, an evaluation by a dietician, and judicious use of nutritional supplements.32 Some residents with dementia have oral apraxia and/or dysphagia and require more feeding time or a modification in diet. Families should be advised of this need and the possible limitations of staff time to assist these residents. Family members and volunteers should be encouraged to assist with feedings as long as the person is cooperative. If weight loss continues, a discussion about artificial nutrition and hydration should occur, preferably prior to a crisis. The risks and benefits of tube feedings and gastrostomy (G-tube) placement should be discussed with the resident and/or the surrogate decision maker early in the disease. Tube feedings can provide calories and prevent dehydration; however, there is a paucity of data to indicate that tube feeding in advanced dementia will prevent pneumonia, prevent or improve pressure sores, or delay mortality.33 The lack of data to support tube feedings has led some authorities to conclude that long-term care facilities should not offer this option in advanced AD.34 Obviously, the decision to implement or withdraw tube feedings will be dependent on many factors, including institutional and state-specific policies.35 As with all therapies, this decision should be based primarily on the resident’s wishes. Advance directives should be discussed with residents and family members upon admission to a facility. A surrogate decision maker is usually required to admit to most long-term care facilities, and open communication between the medical and nursing staff and the health care proxy are imperative. Many residents and/or family members desire to avoid cardiopulmonary resuscitation, intubation, and/or intensive care. As dementia severity advances, discussions should include the desire for hospitalizations, tube feedings, and continuation of certain medications based on the current quality of life, futility of treatment, or the resident’s wishes. Preferably, these discussions should occur during a time of stability and not during a time of crisis. There is a growing trend to include palliative care or “treatment of symptoms” earlier in the disease process with the goal to relieve the person’s suffering while maximizing quality and dignity of life.36 Discussions with family members should focus on the irreversible process and nature of the disease, while simultaneously understanding the values and desires of the resident. These discussions may be very useful in coming to common ground and treatment decisions.37 Palliative care should be considered as an important service for persons with dementia. Although there are similarities between palliative care and hospice, physicians and staff should make families aware that palliative care can focus on pain and symptom management, even before it is believed that the resident is terminally ill or life expectancy has declined to less than six months. Residents receiving palliative care may also continue to receive aggressive management of treatable conditions. As the disease progresses and life expectancy is significantly limited, referral to hospice may be appropriate. Hospice services provide comfort care for the resident and can enhance quality of life for the resident and support for the family. Hospice criteria specifically rely on the Functional Assessment Staging criteria;38 however, a practical tool based on the Minimum Data Set can estimate prognosis for nursing home residents with advanced dementia.39 The Alzheimer’s Association has many useful tools and resources for end-of-life care on their website.40 Most long-term care facilities work closely with local hospice organizations. We have found hospice to be very helpful to our residents and their families in the long-term care setting. Dr. Wilkins is on the speaker’s bureau for Pfizer Inc, and Janssen Pharmaceutica Products, LP.

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