The expected outcome of this course is that healthcare professionals will apply methods of management of Alzheimer's disease and other dementias
After completing this course the learner will be able to:
Dementia is a syndrome usually of a chronic or progressive nature, caused by a variety of brain illnesses that affect behavior, memory, thinking and the ability to perform everyday activities.
Dementia is not a single disease, but a condition characterized by a permanent decrease in intellectual functioning. It is not only a decrease in memory but problems with language, judgment, problem solving, and comprehension. Many conditions lead to dementia, but the most common cause of dementia in the United States is Alzheimer's disease. Dementia has no cure and is progressive; it eventually leads to total dependence and death.
It is estimated that 5.7 million Americans are living with Alzheimer's dementia in 2018. This 5.5 million people age 65 and older and 200,000 individuals under age 65 who have younger-onset Alzheimer's.1
1 in 3 elders will die from Alzheimers or other dementia. It also is a leading cause of disability and poor health. It is the 6th leading cause of death in the US. Alzheimer’s is the only top 10 cause of death in the US that cannot be prevented, cured or even slowed.1
Alzheimer's places a huge burden on the health care system, with annual costs exceeding a quarter of a trillion dollars. In 2018, the direct costs to American society of caring for those with Alzheimer's will total an estimated $277 billion, including $186 billion in Medicare and Medicaid payments.1
The costs of health care and long-term care for individuals with Alzheimer's or other dementias are substantial. Dementia is one of the costliest conditions to society.1
Dementia is caused by an alternation in the brain's structure including a decrease in the chemicals in the brain and a destruction of nerves vital to cognitive function. Amyloid, a starch like product, is deposited abnormally in the brain in Alzheimer’s and is responsible for many of the signs and symptoms. Amyloid plaques develop in areas of the brain used for memory and other cognitive functions.
Acetylcholine, a chemical produced by the nerves in the brain, is associated with transmission of impulses between nerve cells and allows proper brain functioning. Dementia is associated with a decline in the amount of acetylcholine, which results in a decreased ability of the body to transmit impulses between brain cells.
Another characteristic change is neurofibrillary tangles. Neurofibrillary tangles are abnormal growth of nerves that kill the normal function of cells and results in malfunction of the brain. Neurofibrillary tangles lead to the death of nerve cells and synaptic failure. Neurofibrillary tangles, amyloid plaques, chemical imbalance, inflammation, and other cellular changes all contribute to the process of dementia.
Dementia comes in many forms and the exact type cannot be definitely diagnosed without a brain biopsy, but typically the disease can be determined on clinical grounds by exploring the history of the dementia and physical exam. The following are common types or causes of dementias:
Alzheimer's, the most common type of dementia, has a gradual onset, begins slowly and initially impacts the ability to think, memory and language. Short-term memory is initially affected and overtime symptoms progress.
Vascular dementia often occurs after a stroke and affects the part of the brain that was damaged. The part of the brain that was not damaged by the stroke often remains unaffected. Vascular dementia affects 15-20% of patients with dementia and often co-exists with Alzheimer’s. Like Alzheimer’s, vascular dementia is progressive, but the symptoms typically begin more abruptly.
Dementia with Lewy bodies is slowly progressive and appears to overlap considerably with both Alzheimer's and Parkinson's disease. The severity of this type of dementia fluctuates in severity from day-to-day and is associated with variable levels of alertness.
Research in preventing dementia is sparse but does provide some suggestions. Stimulating the mind through playing chess, reading or playing a musical instrument is the most important thing one can do to keep the mind sharp and decrease the risk of getting dementia. Another question that has recently been looked at is the use of antidepressants in the prevention of dementia. Continued long-term use of antidepressants may lower the rates of dementia. This study evaluated those with depression and dementia. For those with both conditions there is most likely a benefit of treating depression in regard to lowering the rates of dementia.
While drugs and supplements have hinted at their ability to prevent dementing illness, there is limited data to suggest effectiveness. Cholinesterase inhibitors do not reduce the rates of progression from memory impairment to dementia. Cholinesterase inhibitors (ChEI) are widely used in dementia, but there is a lack of practice guidelines in case of intolerance or absence of perceived effect.
Many risk factors are associated with dementia; age is the most dramatic. While age is not synonymous with dementia the incidence of dementia is significantly higher as one ages. The disease typically starts between ages 40 and 90, but usually after age 65. Females are at greater risk than males. Another risk factor is having a family history of dementia in a parent or sibling. History of head injury puts one at risk for dementia. Poor control of many chronic diseases, including congestive heart failure and lung disease, can make dementia worse. Risk factors typically associated with vascular disease, high blood pressure, diabetes, and high cholesterol, are associated with an increased risk of vascular dementia and Alzheimer’s.
Depending on the exact cause of the dementia the presenting signs and symptoms may vary. Short-term memory loss is common as evidence by forgetting recent events. The early stages of dementia are characterized by forgetting where items were placed, asking questions repeatedly, and having difficulty learning new information.
It is at times difficult to differentiate between normal aging and dementia. Normal aging is characterized by slowness in the retrieval of information. Those with dementia have difficult time recording new information. For example, the aged individual may have a hard time recalling the name of a friend they have not seen in a long-time. Those with dementia can be told something and not recall it. A husband may tell his wife (who has dementia) that friends are coming over for dinner and the wife will not remember this fact when the friends arrive.
Using words incorrectly, difficulty finding the right word or using general words to describe a specific item is a trait of dementia. A demented person uses the word "thing" to describe many items. Personality changes, making poor decisions, and mood swings are common symptoms of early dementia. Increased confusion at night, also known as sun-downing, is a common feature of early dementia.
Patients with early dementia are able to compensate well when they are in familiar environments. Problems are often first noticed when one gets out of his or her routine such as going on vacation or entering the hospital. Patients often become very anxious, depressed, scared, or have emotionally liable moods. These moods are often the direct results of the patient being aware of the progressive dementia.
As the disease progresses the patient has difficulty carrying out tasks of daily living such as bathing, handling finances, grooming, dressing, and preparing meals. This is the point at which independence is significantly impaired and a patient will need to adjust their living environment.
Those with advanced dementia are dependent on others for care. They have a very limited memory and usually are not oriented to place, time, and often name. Patients with “advanced dementia” may not know the name of his or her spouse or children.
Loss of the swallowing reflex is a common complication of advanced dementia, which leads to medical complications such as malnutrition and aspiration pneumonia. It has not been found that feeding tubes reduce the rates of aspiration pneumonia in the demented patient.
Malnutrition decreases the ability to fight off infection and increases the risk of death from infection. Loss of the swallowing reflex increases the risk of dehydration. Patients with advanced dementia have more seizures.
Behavioral changes are more common as dementia advances. Mood swings, with the patient going from calm and pleasant to completely out of control within minutes can occur. Personality changes are seen in dementia with the demented patient showing an increased incidence of irritability, suspiciousness, and fearfulness. Hallucinations and delusions are hallmarks of advancing dementia. Hallucinations are misinterpretation of sensory stimulus. They can include seeing things that are not there such as dead relatives or hearing voices when there are none. Delusions are fixed, false beliefs. Common delusions include thinking people are out to get them, thinking that someone is trying to poison them, or believing they are God.
Clinical history and exam can help differentiate between some of the different types of dementia. Alzheimer’s is the most common dementia and therefore the most likely diagnosis when a dementia presents. Some salient features of Alzheimer’s include: early memory loss with cognitive impairment and at least one other area deficit such as language dysfunction, agnosia, apraxia, visuospatial disorder, and executive dysfunction. It typically has an insidious onset and a progressive course. Memory impairment is highlighted by a storage deficit; patients are not able to recall something with a cue. For example, if you are performing the mini-mental status exam (MMSE) and the patient is asked to recall three items after five minutes, the patient will not be able to recall them even after you give them a clue. As the disease progresses long-term memory becomes impaired. Later changes also include seizures, apathy, aggression, wandering, agitation, depression, and anxiety.
Vascular dementia can have either an abrupt or insidious onset and the progression can be stepwise, fluctuating, or a continuous decline. Patients with vascular dementia typically have cardiovascular risk factors such as hypertension, hyperlipidemia, and diabetes. Focal neurological deficits are common in those with vascular dementia. Memory impairment is not as pronounced in the early stage, whereas “executive function” (concentration, decision making, and higher-order problem solving) is impaired early.
Dementia with Lewy bodies (DLB) accounts for 10-15% of cases. DLB typically presents with memory loss. It is difficult to differentiate between DLB and Parkinson's disease with dementia. If the onset of dementia is within one year of Parkinson's disease than the most likely diagnosis is DLB. If the onset of dementia is greater than one year from the onset of Parkinson's disease, than the likely diagnosis is Parkinson's disease with dementia. DLB is more associated with the Parkinson's symptoms of masked faces and postural instability as opposed to tremor. Other features noticed with DLB are a fluctuating cognitive course, early impairment of executive function, more problems in attention, visuospatial function and constructional abilities when compared to AD and more autonomic involvement. Patients typically have “recurrent visual hallucinations”. There is often repeated falls and occasional syncope.
Frontotemporal dementia (FTD), characterized by a shrinking of the frontal and temporal anterior lobes of the brain, often presents with personality and behavioral changes over memory loss, at least early on. This disease runs in families. Symptoms of FTD fall into two clinical patterns that involve either changes in behavior or problems with language. Patients are typically impulsive, act socially unacceptable, disinhibited, lack insight, and are agitated or socially withdrawn. Those with language disturbance have difficulty speaking or understanding speech. Frontotemporal dementia occurs at a younger age than does Alzheimer’s, typically between the ages of 40 and 70.
The need to evaluate for dementia can be picked up during a routine examination, from patient or family concern or from routine screening. The work-up includes performing a mental status examination. Standardized tests can be used to document mental decline, monitor decline and help make the diagnosis. Mental status examinations test the patient's memory and intellectual function. These tests look for memory impairment, language disturbance, ability to carry out purposeful movements, and ability to recognize objects. Mental status exams ask the patient to report the date and location, recall lists of items, write sentences, follow written commands, name objects, and copy diagrams. The American Academy of Neurology recommends the use of the mini-mental state exam (MMSE) or the memory impairment screen as tools to screen for dementia. However, the MMSE offers no suggestions as to how much assistance the person might need in daily life, nor does it try to apply the deficit in a cognitive area to practical living.
Scores on the MMSE range from 0 to 30, with scores of 25 or higher being traditionally considered normal. Scores less than 10 generally indicate severe impairment, while scores between 10 and 19 indicate moderate dementia. Those with Alzheimer’shave on average a decline in the MMSE score. The MMSE of 3-4 points per year occurs if they go untreated. It is important to note that one needs an IQ of about 90 to get a normal score on the MMSE.2
The MMSE takes about 10 minutes to complete, It measures aspects of cognition that include orientation, word recall, attention and calculation, language abilities, and visual construction. Scores may need to be adjusted or interpreted differently to account for a person's age, educational level, and ethnicity/race.
Other testing is often employed. Early changes in mental decline are often not picked up on the MMSE. If the spouse or caregiver notices changes and the MMSE is normal, more sensitive testing may need to be employed. If the diagnosis is in doubt then more extensive testing, known as neuropsychological testing, typically done by a specialist, is performed.
Neuropsychological testing is a more comprehensive method for the evaluation of mental status. Testing is done by a neurologist, psychiatrist, or psychologist. It looks at higher cognitive functions including but not limited to abstract, logical, and conceptual reasoning, visuospatial orientation, memory, verbal fluency and reasoning. The test identifies cognitive impairment in patients with higher baseline cognitive abilities and determines if dementia is present in its milder stages. It is more sensitive than other types of testing and can differentiate between mild cognitive impairment and dementia. The test is helpful for those who do not speak English as their native language and those with limited education. It also can help pick up anxiety and depression.
The work up of dementia rules out other causes of mental decline and consists of imaging and laboratory evaluation. The two most highly recommended tests include a vitamin 12 level and a thyroid test. Other testing is up to the individual health care provider and may include a complete blood count, glucose, kidney function test, electrolyte tests, and liver function tests. Other tests can be performed if the patient is deemed at high risk and the clinician has reason to suspect a rarer cause of dementia including: serology for syphilis, HIV testing, genetic testing, Lyme disease titers, testing for heavy metals, urinalysis, erythrocyte sedimentation rate, and serum folic acid. A lumbar puncture is sometimes performed if cerebral Lyme disease, cerebral vasculitis, neurosyphilis, or HIV is suspected as a cause of the dementia.
Testing for depression is critical as memory loss can be one of the manifestations of depression. Depression can present with memory loss and memory loss can reverse with treatment of depression. In addition, depression complicates the course of dementia if they both exist.
Many patients with dementia undergo an imaging examination to rule out other causes of disease. Its ability to identify a reversible cause of dementia is low but non-contrast computed tomography or magnetic resonance imaging is recommended as part of the initial evaluation of a patient with dementia. The use of Neuro –imaging in dementia is most likely helpful in a 61 year-old woman with an MMSE score of 20 and a history of breast cancer. Imaging can rule out brain tumors, subdural hematomas, stroke, or normal-pressure hydrocephalus. Those who are younger than 60, had recent head trauma, a history of cancer, gait disturbance, urinary incontinence, localized neurologic signs or symptoms, or those with a rapid or atypical course of dementia have the greatest chance of having a diagnostic yield from imaging studies. The only way to confirm the diagnosis is to perform a brain biopsy, which is rarely done or necessary.
More advanced testing includes photon emission tomography (PET) scans or single photon emission computed tomography (SPECT) scans. These tests are not routinely done but are often done in research settings to help distinguish between different types of dementia. Current guidelines do not recommend their routine use.
Case 1 - Alzheimer’s
Demented patients thrive in familiar environments. Providing consistency and structure is an important step in managing dementia. Maintaining a routine schedule preserves orientation and allows him or her to function on a higher level. Keeping all of the items such as clothes, shoes, drugs, and furniture in the same place is one suggestion. Keep a large calendar in the home with important dates such as birthdays and doctor appointments visible. Keep important phone numbers in plain view so they can be easily found reduces frustration. Labeling drawers and cabinets helps with orientation.
The holidays are a particularly challenging time for demented patients because parties, interrupted time schedules, and decorating leads to significant confusion. Decorating just one room of the house with holiday decorations and not allowing anyone with dementia to go in the room may help.
Keeping the patient with dementia safe becomes more important as the disease progresses. Keep instructions simple; minimize instructions to less than five words. Setting up a safe and pleasant environment is essential. Lighting needs to be bright to prevent falls; night-lights are helpful. Remove sharp objects from the home or put them in a locked area to prevent the demented patient from harm. Occupational therapists provide home evaluations to assure safety measures are in place to keep the demented patient safe. Cleaning services reduce clutter in the home, which reduces falls. Place identification tags, carried in many pharmacies, on the patient in case he or she gets lost. Alarms can be placed at the exits of the home to prevent the patient from wandering off.
Simplifying task, developing routines and providing proper rest reduces the incidence of behavior problems. Structured games and activities reduce behavior problems. Re-assuring an upset patient, repeating instructions as needed and redirecting the agitated persons reduces agitation. Sensory deprivation exacerbates the disease process and assuring that they can see (glasses on) and hear (hearing aids in) helps in reducing behavioral problems.
Problem behaviors can trouble not only patients, but caregivers. Paranoia, aggressiveness, and anxiety are more commonly a problem that leads to nursing home placement than memory loss. Analysis of behavior is another strategy that may be helpful for problem behaviors.
Behavior analysis is helpful to determine triggers that agitate the person or make them more confused. It should be the first step employed when behavior problems are encountered. Rather than using drugs if the patient is upset or agitated, try to understand why they might be agitated. Perhaps they need to use the bathroom, are in pain, or think they lost something. Note what happens right before the behavior, try something different the next time, and track the results.3 Identify a particular behavior and note what seems to trigger the behavior. For example, if a shower always makes the patient agitated, try a bath instead. Or attempt to offer a shower at a different time of day. Controlling situations that agitate the patient or increase confusion can go a long way into making the disease more manageable.
A behavior chart can be used by loved ones of patients with dementia to help understand what triggers behavior problems. Recording activities, drugs, the people present, and the corresponding behaviors identifies patterns to help loved ones understand what agitates the patient. The behavior chart does not need to be filled out every day, but it should be filled out if there is a change in behavior, a few days before a doctor's appointment, or after a drug change.
The behavior chart has six columns. The first column is where the time is recorded. The next column is where the activity that the patient is doing at that given time is recorded. Examples of activities include: sleeping, talking on the phone (and with whom), interacting with people, watching television (be specific about which show), eating, or shopping. The next column is to record the people who are around. Certain people can make patients much more irritable and filling out this column may reveal specific people that increase agitation. The next column is a place to record when drugs for dementia are taken. This may demonstrate a pattern such as behaviors are much worse 6 hours after taking the drug prescribed for behaviors control. These patterns are important to recognize as they can affect the way doctors prescribe drugs. The last column is a place for any miscellaneous comments.
Advances in pharmacology may prolong cognitive function in patients with dementia.
Class 1: Cholinesterase Inhibitors act by preventing the breakdown of acetylcholine in the brain. Acetylcholine is a chemical that facilitates nerve cell communication in the areas of memory, learning, and other thought processes. Scientific research has found lower levels of acetylcholine in the brains of individuals with Alzheimer's, so the hope is that by protecting or increasing the acetylcholine levels through these drugs, brain functioning will stabilize or improve.3
Researchers estimate that for about 50 percent of people with Alzheimer's who take cholinesterase inhibitors, progression of Alzheimer's symptoms is delayed for an average of six to 12 months.3
There are three cholinesterase inhibitor drugs currently approved and prescribed to treat Alzheimer’s:3
The first drug developed, tacrine (Cognex), is rarely used today. Its dosing schedule is inconvenient (four times a day) and it has an adverse side effect profile including hepatotoxicity, nausea, and diarrhea.
Donepezil (Aricept), a drug dosed once a day, has been shown to decrease memory loss and functional decline. It is indicated for mild, moderate and severe dementia. Side effects include nausea, nightmares, headache, dizziness, vomiting, and diarrhea. Less commonly bradycardia and syncope can occur. Side effects are more common when this drug is started and dissipate as the body gets used to the drug.
Rivastigmine (Exelon), another medicine in the same class, may improve memory, functional impairment and behaviors. It is approved for mild to moderate dementia as well as Parkinson's disease dementia. Rivastigmine acts on slightly different chemical compounds in the brain but most studies suggest it is no more beneficial than any other cholinesterase inhibitor. It acts on both acetyl and butyryl cholinesterase and has a short half-life. The dose needs to be titrated to reach maximal effect.
Rivastigmine is beneficial for those with mild to moderate dementia. It slows down the decline of cognitive function and reduces the rate of decline in the ability to perform activities of daily living.
Rivastigmine has more GI side effects than donepezil with weight loss being one significant problem. Other side effects include nausea, vomiting, diarrhea, anorexia, dizziness, and headache. Interestingly the addition of memantine (Namenda) to rivastigmine significantly lowered the incidence of nausea and vomiting.
Rivastigmine is now available as a transdermal patch. The low dose patch is associated with fewer side effects than the oral form or the high dose patch.
Galantamine (Razadyne) is another drug in this class with similar efficacy and benefits. It also acts on acetylcholinesterase and butyryl cholinesterase. In addition, it acts on the nicotinic receptor sites. This drug also needs to be titrated and is associated with gastrointestinal side effects such as GI upset, weight loss, and anorexia.
These are not miracle drugs and are not effective for all individuals. Many experts feel that these drugs are not beneficial except in a small subgroup of patients. Limited data is available on the efficacy of these drugs on other types of dementia such as vascular dementia or dementia with Lewy bodies. Since there are no other drugs approved for these conditions and considering some similar pathology they are often used off label in an attempt to improve cognition.
While there is some evidence that these drugs work, the evidence is not overwhelming. Given that fact there are few other options they are often used. When used, patients must be given reasonable advice on what to expect.
Memantine HCl (Namenda) is approved for moderate-severe Alzheimer's dementia. Side effects include dizziness, confusion, headache, and constipation. Memantine HCl appears to work by regulating and amino acid, glutamate levels in the brain. Normal levels of glutamate facilitate learning, but too much glutamate can cause brain cells to die. Memantine HCl has been somewhat effective in delaying the progression of symptoms in later Alzheimer’s. Namzaric, is a combination of donepezil and memantine.
Other medicines that have been suggested for the treatment of dementia include non-steroidal anti-inflammatory drugs, vitamin E, estrogen, and ginkgo biloba. Caution must be exercised with these drugs as they have not been rigorously studied and not approved for dementia.
Non-steroidal anti-inflammatory drugs include ibuprofen (Advil, Motrin), celecoxib (Celebrex) and naproxen (Aleve). They are postulated to benefit patients with Alzheimer's, but research does not convincingly back-up that claim. Theoretically they slow down neuro-degeneration as they reduce inflammation in the brain, which is associated with the development of the neuritic plaques. Some data shows these drugs reduce the incidence of dementia, but there is some question of bias in these studies and therefore it is not recommended as an agent to prevent dementia. Due to its theoretical benefit, scientists are still holding out hope that further research will prove it is a therapeutic strategy for Alzheimer’s.
Free radicals can damage nerves in the brain. They are the by-products of oxidative metabolism and some evidence suggests that vitamin E, selegiline, and ginkgo biloba may be protective against this process. Vitamin E, at doses of 1000 IU two times a day, may be slightly beneficial in patients with Alzheimer’s as it may delay the need for patients with Alzheimer’s to need placement in long-term care. Caution must be used with Vitamin E because it increases the risk for bleeding which is especially concerning if on blood thinners.
Studies do not support the benefit of vitamin E in Alzheimer’s. Vitamin E may help maintain cognition is some people with Alzheimer’s. In others, vitamin E actually has a negative effect on cognition. Based on current medical science it is not possible to determine who will be responders and who will be non-responders.
Ginkgo biloba is an herbal product that has multiple uses including depression, anxiety, ringing in the ears, confusion, headaches and memory problems. One of its biggest uses is for memory conditions. Ginkgo biloba, an herbal preparation, showed mild effectiveness on cognitive deficit in Alzheimer’s. More studies are needed to prove its effectiveness in the prevention and treatment of dementia. Risks associated with gingko include bleeding and seizures. Use caution with simultaneous use of any blood thinners.
Estrogen has antioxidant and anti-inflammatory properties that are likely associated with their benefit in dementia. It also has positive effects on nerves in the brain and acetylcholine concentrations. Science does not have enough clinical data to make conclusions about the efficacy of estrogen in the treatment and prevention of dementia and Alzheimer’s. Given the current data and the risks of side effects (increased cardiovascular risk, blood clot formation and death rates) estrogen is not recommended as a treatment modality to improve cognitive function or prevent cognitive decline in women older than 65.
Behavior problems are a concern with dementia as the disease progresses. Psychosis, depression, and anxiety are three common problems. These symptoms are difficult for those with Alzheimer’s and can be associated with risk for others as there is at times physical aggression. Non-drug interventions are the first interventions to treat behavioral problems. Keeping a behavioral chart defines the problem and facilitates in the treatment of the undesirable behaviors.
Psychotropics are typically used in conjunction with other non-drug approaches or after attempting non-drug therapies and finding them to be inadequate. They are used at times to treat the behavioral, psychological, and emotional symptoms of Alzheimer’s. These symptoms can include emotional distress, depression, anxiety, insomnia, hallucinations, and paranoia, as well as some challenging behaviors, so being proactive in identifying and treating them is important.3
The class of psychotropic drugs are antidepressants, anti-anxiety drugs, antipsychotics, mood stabilizers, and drugs for insomnia.3 These drugs can be effective but can also potentially cause significant side effects.
Treatment of depression is important because it improves mental function, lessens confusion, and improves dementia. Depression can be a vexing problem that is difficult to uncover in dementia. SSRI [sertraline (Zoloft), fluoxetine (Prozac), paroxetine (Paxil)] are first line agents in the treatment of depression. SSRIs may be effective for the treatment of psychotic symptoms in dementia
Tricyclic antidepressants are not recommended in this population as there is the potential for increased confusion, urinary retention, constipation, blurred vision, sedation, and increased agitation.
Anti-anxiety medicines, such as lorazepam (Ativan) or alprazolam (Xanax), reduce anxiety and related behavior problems. However benzodiazepines can cause excessive sedation and potentially paradoxical agitation.
Visual hallucinations and paranoid delusions are two of the most common psychotic features in dementia. Psychotic symptoms are often treated with antipsychotics with varied success. While no drug is approved for behavior disturbances in dementia, they are often used. In addition to their use in psychosis, neuroleptics are used with variable success in the treatment of behavioral disturbances in dementia such as agitation, aggressiveness, and wandering. Aggression and agitation are commonly treated with antipsychotic drugs. They are helpful in managing these symptoms in the short-term for less than 3 months, but they are associated with some risk.
Antipsychotic can be broken down into typical and atypical drugs. Typical agents are more commonly associated with extrapyramidal effects such as slowed movement, rigidity, and tremors. Atypical agents are less likely to have extrapyramidal effects but are less predictable in their efficacy. These medicines are not approved by the food and drug administration for use in dementia but are used extensively. Risperidone (Risperdal), quetiapine (Seroquel) and olanzapine (Zyprexa) are atypical drugs in this class. Zyprexa is used at times for Lewy body dementia but is more often used for bi-polar disorders. The most common typical drug prescribed is haloperidol (Haldol). Most patients can tolerate a low maintenance dose without extrapyramidal effects. Patients with DLB are more prone to neuroleptic sensitivity and extreme caution must be used when using these drugs in DLB.
Acute psychotic crises can arise and may require hospitalization. Intramuscular antipsychotic drug such as haloperidol in a dose of 5-10 mg often calms an acute psychosis. After the acute episode and lower maintenance dose may be needed to prevent another crisis.
While these drugs are widely used for those with dementia and behavioral disturbances they need to be used with extreme caution. They are not approved for psychosis in dementia. Evidence is not convincing that these agents are effective.
Increased death rates and rates of stroke are a major concern with the use of atypical antipsychotics in the demented population. Stroke rates were shown to be 2-3 times higher and mortality showed a 1.6-1.7 fold increase. While other studies raise questions to such high numbers, significant caution should be used with these drugs. Completely avoiding these drugs is not appropriate as some patient see significant improvement in quality of life with their use.
The degree of symptoms may predict on how well antipsychotic drugs work. In nursing home residents, those with more severe behavioral disturbances have a better response to antipsychotic drugs. The response to drugs may be most effective in those who are most profoundly affected by agitation and aggression without psychosis.
As dementia progresses there is often a decrease in the severity and frequency of behavior disturbances. It is therefore a wise practice to try to taper or discontinue antipsychotic drugs after 2-8 months of treatment.
There is some evidence that aromatherapy may be effective for agitation.
Sleep problems are a common complication of dementia. First line interventions include non-drug interventions such as: reducing caffeine/nicotine/alcohol, regular exercise, discouraging long day-time naps, instituting soothing bedtime rituals and maintaining a consistent bed-time routine. If this fails than the addition of short-acting sedative-hypnotic drugs are one solution to restoring sleep. Agents to be considered include zolpidem (Ambien), eszopiclone (Lunesta) and remelteon (Rozerem). Zolpidem is approved for short-term use and comes in an extended release form. Eszopiclone helps in the initiation of sleep and maintenance. Ramelteon, which acts on different receptors, is another option when other drugs fail. Ramelteon and eszopiclone are approved for long-term use.
Dementia is a progressive disease that has the potential to cause many problems as it advances. Dysphagia is typically a later disease concern. Aspiration is a major problem in those who develop dysphagia. A speech therapist can perform a swallowing study and make recommendations to decrease the risk of aspiration. Some possible interventions include:
Eating with someone who can monitor for any aspiration or provide cues to safe eating
Some patients with dementia will hold food in their mouth, not swallow it and spit it out. This is common with frontotemporal dementia and is best treated with behavioral interventions.
The use of feeding tubes has fallen out of favor over the last number of years as they have not proven to extend life expectancy nor improve quality of life. They can be utilized if aspiration is severe or the patient does not eat enough to maintain nutrition and it is wanted by patient and durable power of attorney of health care. Feeding tubes do not prevent malnutrition, reduce incidence of aspiration pneumonia, improve function, or extend life. If permanent feeding tube replacement is desired than percutaneous gastrostomy is better than a nasogastric tube. Consideration must be given to quality of life and complications when deciding on the use of a feeding tube. Hand feeding is an alternative to feeding tubes and it may provide more comfort to the patient.
Those with dementia are typically older; older age comes with a greater risk of many chronic diseases. Having dementia makes it more likely that proper treatment will not ensue. For example, those with a heart attack may not be able to communicate the pain that they are feeling due to the dementia, which will result in delayed care and worse outcomes.
Poor nutrition is another common complication of dementia. Poor nutrition increases the risk of infection and poor body healing. The combination of older age, poor communication and a compromised immune system make the demented individual at high risk for poor outcomes.
Dementia is a progressive disease that eventually robs one of their memories. Before memory fails it is paramount to make medical wishes known. This is done with advanced care planning. Making life and death decisions can be uncomfortable but making these wishes known will assure advance directives are carried out.
The advanced directive should include a durable power of attorney for health care and a living will. The durable power of attorney for health care is naming a person to make health care decisions for the patient when he or she cannot. It is often a relative or close friend. Ideally this person will know what type of medical wishes the patient wants. A living will discusses the patient's medical wishes in advance. This helps guide the health care team and the durable power of attorney in making decisions when the patient is unable to do so.
Eighty-three percent of the help provided to older adults in the United States comes from family members, friends or other unpaid caregivers.3 Nearly half of all caregivers who provide help to older adults do so for someone with Alzheimer's or another dementia.3
Primary and secondary caregivers often times become sick themselves due to the additional stress. This is especially true as the care recipient starts to need more supervision or becomes more unpredictable and possibly violent with frequent hallucinations. Compared with caregivers of people without dementia, twice as many caregivers of those with dementia indicate substantial emotional, financial and physical difficulties.3
Of the total lifetime cost of caring for someone with dementia, 70 percent is borne by families, either through out-of-pocket health and long-term care expenses or from the value of unpaid care.3
The caregiver may experience:
People who are long-distance caregivers, live an hour or more from their care recipient. Psychological stress and emotional distress often occurs. Frustration develops when the caregiver is not being readily present and available to deal effectively with emergency situations. The caregiver may harbor feelings of regret or remorse owing to self-assessments that distance has restricted their caregiving capacity.
Long-distance primary caregivers have significantly higher annual out of pocket expenses for care-related costs than local caregivers. These expenses include the costs of travel, telephone bills, paying for hired help, and other expenses associated with providing for the care recipient’s safety, daily needs and emergency needs.
The type of intervention or combination needs to be unique to each individual caregiver and the efficacy of these support programs has to take into consideration the benefits for caregivers across racial, clinical, ethnic, socioeconomic and geographic context.
Merry is a well-educated long-distance caregiver who lives 3 hours away from her mother. She is the primary caregiver. Her mother still is independent and takes care of her activities of daily living. She does not drive because she gets lost or forgets where she is going. She is showing signs of Alzheimer’s. Merry schedules her mother’s doctor appointments and goes with her to ensure that her mother is on the right drugs and reports any side effects she has noticed. Merry takes her mother shopping, takes her to exercise classes, helps to clean her apartment, and makes sure her mother is still able to pay her bills. On her days off Merry plans activities to keep her mother interested in her surroundings and takes her to visit her friends, out to eat, and to the movies.
Merry is aware that at times she needs help from her sister who is the secondary caregiver and lives at least six hours from her mother. Her sister does relieve Merry and stays with her mother taking her to her hair appointment, shopping, and to area holiday events, and helps to clean her apartment. When their mother is not able to make decisions related to her care they both listen to what their mother thinks she needs and respond appropriately.
When working from a distance Merry is constantly challenged in obtaining accurate information about her mother’s condition from local caregivers or at times close neighbors. Merry’s sister fails to keep her commitments to help.
This additional stress causes Merry’s employment to suffer. More time is needed off when having to be the primary caregiver. Merry had to cut back on her working hours, turned down a promotion. Merry finally chose early retirement, to avoid being fired.
Merry moved in with her mother and sought local part time employment. The distance from her friends and the monopoly of her time caring for her mother causes Merry to be socially isolated and depressed.
What started as a good plan did not work out over time. Help making a more realistic plan in the beginning would have improved Merry’s quality of life. Moving her mother into Merry’s home or assisted living would have had a better outcome. However, giving up independence and change is difficult, particularly for people with dementia.
Dementia is a devastating disease that affects not only the mind but the body. Current medical science does not have a cure for the disease, but there are many treatment options. Treatment should always focus on non-pharmacological interventions with sparing use of drugs to improve the quality of life. More research is needed to find a cure and prevent this devastating disease. Support programs are available and more will be needed as our population ages and dementia becomes more prolific. Nurses and other healthcare professionals need to understand the disease and how to help patients and families cope with dementia.