Diagnosis and Management of Dementia in Long-Term Care

Author Affiliations: Dr. Wilkins is Assistant Professor of Medicine and Psychiatry and Dr. Carr is Associate Professor of Medicine and Neurology, Division of Geriatrics and Nutritional Science, Washington University School of Medicine, St. Louis, MO; and Dr. Moylan is Assistant Professor of Medicine, University of Missouri-Columbia.

Introduction

With as many as 12% of individuals over age 65 years and half of all individuals over age 85 years 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 (LTC) setting. It is estimated that 60-80% of elderly nursing home (NH) residents have dementia.³ Since increasing age is associated with both dementia and NH admissions, the number of persons with dementia residing in this setting is expected to increase.⁴

Additionally, the average length of stay for NH residents is increasing, with more than one-third residing there for three years or longer.⁴ Although many older adults are admitted to NHs 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.

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 NH 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.

Non-Alzheimer’s Causes of Cognitive Impairment

Admission to a NH 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. DLB 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. Cerebrovascular disease may be the primary etiology of dementia or may coexist with other dementing illnesses. 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 pronounced 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.^6,7 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 or the Patient Health Questionnaire-9 (PHQ-9) in the early stages of the disease⁸ may also be helpful. Characteristics of the most common causes of cognitive impairment are listed in Table II.

Evaluation of Cognitive Impairment in LTC

Obtaining a comprehensive history of the resident’s memory, thinking, and problem-solving abilities, preferably through an interview with a family member or friend, is critical to evaluating cognitive function. A review of medications should be performed, including nonprescription drugs and vitamins to identify those with the potential to affect cognition, level of alertness, mood, and behavior. The physical examination should emphasize the cardiovascular and neurological assessments.

While administering a cognitive screening tool may be helpful, the informant’s sensitivity to early cognitive change can exceed that of neuropsychologic tests.⁹ However, there are several screening tools available to the clinician, including the Short Blessed Test¹⁰ and the Mini-Mental State Examination,¹¹ 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 assessments should be considered in those with memory complaints or cognitive decline insufficient to diagnose dementia.

Laboratory tests to exclude potential contributors to cognitive impairment should include determinations of thyroid function, complete blood count, electrolytes, liver function tests, and vitamin B¹² levels. Screening for syphilis is not routinely recommended; however, it should be considered if the cognitive decline is acute or associated with psychosis or mania. Structural neuroimaging with computed tomography (CT) scan or magnetic resonance imaging (MRI) is appropriate to exclude lesions and hydrocephalus. A fluorodeoxyglucose positron emission tomography (FDG-PET) scan can help establish the diagnosis if the patient meets criteria for both AD and frontotemporal dementia. Because a number of conditions must be satisfied for Medicare coverage of FDG-PET scans in dementia, clinicians should verify that all the criteria for utilizing this scan has been met prior to ordering.

Treatment of Dementia in LTC

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 healthcare 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. NH 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 NHs.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 (Table III).

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 NH 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 NH residents, and they may reduce costs of care.

A recent study suggests that they can be initiated in cholinesterase inhibitor–naïve nursing NH residents with moderate-to-severe dementia with reasonable tolerability and efficacy.²³ Some data suggest that cholinesterase inhibitors may also have a role in managing problem behaviors, but the results of many trials are not consistent.²⁴ However, given 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.^19,25

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, muscle cramps, sialorrhea, nightmares, and anorexia, can be minimized by appropriate dose initiation and titration (Table III). Recently, a rivastigmine patch has been approved and may be an option in patients for whom oral administration of medications is difficult.

Memantine is the only currently available NMDA receptor antagonist and is approved for the treatment of moderate-to-severe AD.²⁶ 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 LTC. Dose titration is recommended to minimize side effects. Side effects, which are rare, include constipation, headache, dizziness, and increased confusion.

Combination therapy with both memantine and a cholinesterase inhibitor appears to have additive benefits.²⁷ 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.²⁸

Treatment of Behavioral Symptoms

Neuropsychiatric symptoms affect many individuals with dementia and often contribute to NH 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 (eg, depression, anxiety, psychosis), 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.²⁹ 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 recent studies have called into question their efficacy.^30,31

However, these studies use behavioral research scales that often do not translate into important clinical endpoints, such as transfers out of the NH to a geropsych unit, the need for frequent sedating as-needed medications, perceived quality of life, actual and/or perceived physical harm to staff or residents, and significant interruptions to nursing care that impairs care to all residents.

It is the experience of the authors and many practicing physicians that these agents provide a useful role in behavior management when prescribed and titrated appropriately, and as long as they are made available, they will continue to be utilized. The indications for their use should be limited to severe verbal abuse or disruptions, combativeness, and frank psychosis. We do not advocate their use for general agitation, depression, anxiety, or repetitive behaviors. A detailed discussion of these drugs is beyond the scope of this article, but the reader is referred to excellent reviews.^32,33

An algorithm for the management of acute and chronic behavior in patients with behavioral problems is outlined in Figure.³⁴ For difficult cases, referral to a geropsychiatrist is advised. However, antipsychotic drugs are not without side effects. These agents may cause sedation, impaired balance, weight gain, glucose intolerance, dyslipidemia, and orthostasis. Older adults, particularly those with parkinsonian disorders such as DLB, are particularly susceptible to the extrapyramidal side effects of antipsychotics and may develop severe parkinsonism.

A large study of over 37,000 older adults found an increased risk of mortality from those patients who used antipsychotics.³⁵ In this study, conventional agents (eg, haloperidol) had a higher dose-dependent risk. Subsequent studies have also confirmed the increase mortality rate and an increase in hospital admission rate.³⁶ The specific types of deaths that have been implicated related to these drugs are heart failure, sudden death possibly from a prolonged QT syndrome, stroke, falls and injuries, and/or infections (pneumonia).³⁷

One of the mechanisms for morbidity and mortality may be increased thrombosis, including venous thromboembolism.³⁸ It should be noted that the FDA has labeled these medications with a “black box” warning. These agents should be used with particular caution in persons with cardiovascular and cerebrovascular disease. The American College of Neuropsychopharmacology (ACNP) recommends monitoring blood pressure, weight, presence of extrapyramidal effects every 3 months, and blood glucose and lipids every 3-6 months.³⁹

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. One LTC facility recently conducted a quality improvement study where they routinely used quarterly family-patient care conferences to discuss the efficacy of psychotropic agents, and provided families with information on the risk-benefit ratio of antipsychotic drug use and placed this document in the chart.⁴⁰ This type of approach may be helpful to families and clinicians in their decision-making and provides an opportunity to document the willingness of the patient/family to utilize antipsychotics despite the potential side effects of the medications.

It is necessary to inform all persons with dementia and/or their families of the risks of antipsychotics, and it is strongly recommended that their agreement to the use of these agents be documented in the medical record. 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 acceptability of these risks, and this information should be documented in the resident’s chart.
• Residents should routinely be monitored for hyperglycemia, weight gain, excessive sedation, orthostasis, and parkinsonism. Any cardiac events, transient ischemic attacks or strokes, or pneumonia should trigger a re-evaluation of the risk-benefit ratio.

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, procedure, or treatment.⁴¹ 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.⁴² 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 1 month, 7.5% loss in 3 months, or 10% loss in 6 months.⁴³ Weight loss and anorexia have many potential causes including restricte d 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.⁴⁴

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 are a paucity of data to indicate that tube feeding in advanced dementia will prevent pneumonia, prevent or improve pressure sores, or delay mortality.⁴⁵ The lack of data to support tube feedings has led some authorities to conclude that LTC facilities should not offer this option in advanced AD.⁴⁶ Obviously, the decision to implement or withdraw tube feedings will be dependent on many factors, including institutional and state-specific policies.⁴⁷

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 for admission to LTC facilities, and open communication between the medical and nursing staff and the healthcare proxy is 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 dignity and quality of life.⁴⁸ 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 for guiding treatment decisions.⁴⁹

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 6 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;⁵⁰ however, a practical tool based on the Minimum Data Set can estimate prognosis for NH residents with advanced dementia.⁵¹ The Alzheimer’s Association has many useful tools and resources for end-of-life care on its website.⁵² Most LTC facilities work closely with local hospice organizations. We have found hospice to be very helpful to our residents and their families in the LTC setting.

Dr. Wilkins is on the speakers bureau of Novartis Pharmaceuticals and Janssen Pharmaceutica. The other authors report no relevant financial relationships.