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Alzheimer's and Dementia

Author: Raymond Lengel, Donna Thomas

 

Alzheimer's and Dementia | Copyright © 2013 CEUFast.com


Course Contents

 

Purpose/Goals

The purpose of this course is to provide an overview of dementia with a special emphasis on the management of the disease.

 

Objectives

After completing this course the learner will be able to:

1. Identify early, middle, and late findings associated with dementia
   
2. Discuss three causes of reversible dementia
   
3. List three diagnostic tests that aid in the diagnosis and treatment of dementia
   
4. Describe three non-medical interventions to aid patients with dementia
   
5. Discuss the risks and benefits of medications used to treat behavior disturbances in dementia.
   
6. Discuss the emotional stress of caregiving and its physical effects.

 

Introduction

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. Prevalence increases with aging and in 2012 it was estimated that dementia worldwide affected 35.6 million people. This number will double by 2030 and more than triple by 2050 (Alzheimer's Foundation, 2013). More than 5 million people in the United States have Alzheimer's disease in 2013. One in three seniors who die has Alzheimer's or another dementia.

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.

Caregivers and families often times are overwhelmed. A lack of awareness and understanding of dementia in most countries results in stigmatization, barriers to diagnosis and care, impacting caregivers, families, and societies physically, psychologically, and economically. In the United States alone the number of people with Alzheimer's disease and other dementias grows, spending for their care will increase dramatically. Aggregate payments for healthcare, long-term care and hospice are projected to increase from $203 billion in 2013 to $1.2 trillion in 2050 (Alzheimer's Foundation, 2013). Medicare and Medicaid cover about 70% of the costs.

 

Pathophysiology

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 disease 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.

 

Types 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 clinically grounds by exploring the history of the dementia and physical exam. The following Table lists common types/causes of dementias.

Table 1 - Types of Dementia

1. Alzheimer's disease
   
2. Vascular dementia
   
3. Lewy body dementia
   
4. Frontotemporal dementia
   
5. Mixed dementia
   
6. Dementia due to normal pressure hydrocephalus
   
7. Dementia due to toxic substances such as alcohol
   
8. Dementia due to infection such as AIDS
   
9. Dementia due to a brain tumor
   
10. Dementia due to Parkinson's disease
   
11. Progressive supranuclear palsy
   
12. Creutzfeldt-Jakob disease better known as mad cow disease
   
13. Chronic subdural hematoma
   
14. Reversible causes of dementia including hypothyroidism, B12 deficiency and depression

Alzheimer's disease (AD), 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. Those with AD have on average a decline in the mini-mental status exam (MMSE). The MMSE of 3-4 points per year occurs if they go untreated (Rabins, Lyketsos & Steele, 2006).

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. While Alzheimer's disease presents with a more global decline, vascular dementia affects the area of the brain that was damaged. Vascular dementia affects 15-20% of patients with dementia and often co-exists with Alzheimer's disease. Like Alzheimer's disease, 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.

 

Risk Factors

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 disease.

 

Signs and Symptoms

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 disease is the most common dementia and therefore the most likely diagnosis when a dementia presents. Some salient features of Alzheimer's disease include: early memory loss with cognitive impairment and at least one other area deficit such as language dysfunction, agnosis, 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 disease, typically between the ages of 40 and 70.

 

Diagnosis

Dementia is not diagnosed with fancy, expensive tests; but, by a history and physical examination. "The Initial laboratory evaluation of the demented patient should include a complete blood count". The work- up also involves 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 (American Academy of Neurology, 2004). It is important to note that one needs an IQ of about 90 to get a normal score on the MMSE.

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 more mild 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 (American Academy of Neurology, 2004). Other tests can be performed if the patient is deemed at high risk and the clinician has reason to suspect a more rare 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 (American Academy of Neurology, 2004). 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.

 

Evaluation of Dementia

The need to evaluate for dementia can be picked up during a routine examination, from patient or family concern or from routine screening. The first step after performing a history and physical exam is to administer the MMSE. "If the score is greater than 24/30 and dementia is highly suspected than referral for neuropsychological testing is appropriate." If the number is less than 24, than the first step is to evaluate for depression and treat if appropriate. After three months of depression treatment, mental status should be reevaluated.

If the number is less than 24 and there is no depression, or neuropsychological testing determines dementia is present then a work up for reversible causes of dementia should ensue. This work up should include the laboratory evaluation outlined above and neuro-imaging. Any reversible causes of dementia that are found should be treated and then mental status should be reevaluated. If there is improvement then routine reevaluations are appropriate. If there is no change then dementia is likely.

If the work up for reversible causes of dementia is negative, then dementia is probable. Based on the clinical findings on history and physical exam determining the type of dementia is possible.

Table 2: Case Studies Highlighting Different Types of Dementia

Case 1 - Alzheimer's disease
John P is a 73 year-old man with a with a four-year history of memory impairment. His short-term memory is affected the most and needs to be reminded of appointments. He no longer drives after he got lost coming home from the mall 4 months ago. His wife recently took over doing the bills after he neglected to pay a number of bills, a task, which he did without error his whole life. His physical exam was negative and he scored a 21/30 on the mini-mental state exam (MMSE).

Case 2 - Vascular Dementia
Steve S is a 60 year-old man with history of two heart attacks, hypertension, diabetes and smoking. Seven months ago he had a stroke and shortly after he was unable to remember phone numbers he had known for years. His wife also noticed he would not call their friends by their names. He later admitted he could not remember their names. He could not operate the riding lawn mower or work the remote control to the television. His examination revealed weakness in this left arm.

Case 3 - Dementia with Lewy Bodies
Mary L is a 74 year-old woman who present to the emergency room after a fall. The emergency room determines that Mary fell when she went to answer the door and saw three children with bloody heads. This was a visual hallucination. Her daughter reports that she has been experiencing slowing down in her thinking and movements over the last few months. Her exam reveals a bruised right knee from the fall. In addition the physician notices bradykinesis.

Case 4 - Frontotemporal Dementia
Liz F is a 52 year-old woman who has been acting "strange" over the past few months. She was fired from her job because of socially unacceptable remarks and not completing her work. Her exam reveals a woman with poor hygiene and an MMSE of 28/30.

Questions to consider when assessing a demented patient

What type of dementia is present? Although the current state of medical science is often unable to accurately diagnosis the specific type of dementia, it is helpful to know what type of dementia is present to help educate the patient and their family.

How was the diagnosis made? A doctor bases diagnosis on an examination, but laboratory evaluation and neuro-imaging should have been done to rule out other diseases.

Is there a reversible cause of dementia? Has it been looked for it? Some conditions – such as infections, depression or hormonal disturbances – can lead to a state of temporary confusion that, if treated, can result in a reversal of the confusion.

How severe is the dementia? Dementia is often broken down into mild, moderate and severe, which is typically based on functional ability and MMSE score.

Are there any medicines that may prolong cognitive function? Certain individuals respond to medicines that may help slow down the disease process.

What interventions may help control behaviors? Interventions listed below are effective at controlling symptoms. After utilizing the behavior analysis (discussed later), determine which interventions would be helpful. If non-drug treatments do not work, than the addition of pharmacological options may be necessary.

Are medicines needed to control behavior? Patients with dementia often have sleep disturbances, problems with hallucinations, delusions and aggressive behaviors that may respond to medications.

Is the patient safe to live independently? As the disease progresses and memory fails demented patients lose the ability to function independently. At some point during the disease it becomes necessary for the patient to have some assistance. The assistance may start in the form of home health aides or moving in with a loved one and lead to 24-hour care. Many patients with dementia progress to a point where they need nursing home placement.

What community services would be helpful? Are there any support groups in the area that may help? Dementia is a very stressful disease and it is often more stressful on the family as the disease progresses. Support groups can provide a lot of help for family members including, not only medical resources, but also psychological help.

Should a psychiatrist and/or neurologist see the patient? These specialists are not necessary for every patient with dementia, but in cases where the diagnosis is unclear or treatments are not effective or behavior problems are severe, specialty help is warranted.

Is depression present? "Depression is a condition that is very commonly associated with dementia". It often makes the disease worse. There are many treatments that can help patients with dementia and co-existing depression.

 

Treatment

Currently, no treatment stops or restores mental decline that accompanies dementia, but some treatments and interventions may slow down the disease process and improve quality of life.

One of the most important steps in the treatment of dementia is to identify and treat reversible causes including vitamin B12 deficiency, subdural hematomas, normal pressure hydrocephalus and hypothyroidism.

Providing support for the patient and the family is an important job of the health care system. Support groups help the patient and family cope with this progressive and disabling disease. It is important that the health care system gives guidance about what is to be expected for the disease.

Demented patients need a peaceful and calm surrounding to minimize behavior problems that are common with dementia. Non-drug treatments can significant support the patient with dementia (see table 3).

Table 3: Non-Drug Interventions to Reduce Behavior Problems in Dementia

  Frequently orienting the patient to their surroundings including time and place aides the demented individual with confusion.
   
  Helping the patient remember the past with reminiscing and pictures.
   
  Providing sensory stimulation including tough/massage and aromatherapy.
   
  Providing sensory stimulation including tough/massage and aromatherapy.
   
  Maintaining an active social life.
   
  Scheduled toileting and prompted voiding helps patients suffering with urinary incontinence maintain their continence.
   
  Regular exercise

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, medications, 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

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. Controlling situations that agitate the patient or increase confusion can go a long way into making the disease more manageable. The behavior chart below (Table 4) can be used by loved ones of patients with dementia to help understand what triggers behavior problems. Recording activities, medications, 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 medication 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 medications for dementia are taken. This may demonstrate a pattern such as behaviors are much worse 6 hours after taking the medication prescribed for behaviors control. These patterns are important to recognize as they can affect the way doctors prescribe medications. The last column is a place for any miscellaneous comments.

Table 4: Dementia Behavior Analysis

Time Activity Behavior People around Medication Comment
7:00          
7:30          
8:00          
8:30          
9:00          
9:30          
10:00          
10:30          
11:00          
11:30          
12:00          
12:30          
1:00          
1:30          
2:00          
2:30          
3:00          
3:30          
4:00          
4:30          
5:00          
5:30          
6:00          
6:30          
7:00          
7:30          
8:00          
8:30          
9:00          
9:30          
10:00          
10:30          
11:00          
11:30          
12:00          
12:30          
1:30          
2:00          
2:30          
3:00          
3:30          
4:00          
4:30          
5:00          
5:30          
6:00          
6:30          

 

Drug Treatment

Advances in pharmacology may prolong cognitive function in patients with dementia. One change prominent in dementia is loss of the cholinergic neurons in the basal forebrain. Cholinesterase inhibitors improve this deficient state. They increase the concentration of acetylcholine and the duration of its action in synapses by slowing down the enzyme, acetyl cholinesterase. This is an enzyme that metabolizes acetylcholine.

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 medication.

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 (Birks, Grimley, Evans, Iakovidou, Tsolaki & Holt, 2009).

Rivastigmine has more GI side effects than donepezil with weight loss being one significant problem. Other side effects include nausea, vomiting, diarrhea, not wanting to eat, dizziness, and headache. Interestingly the addition of memantine (Namenda) to rivastigmine significantly lowered the incidence of nausea and vomiting. None-the-less the rates of nausea and vomiting were high even with both medications (Olin, Bhatnagar, Reyes, Koumaras, Meng & Brannan, 2009).

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 medication 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. All three of these medications are approved for Alzheimer's disease and rivastigmine is also approved for dementia associated with Parkinson's disease. Donepezil is approved for mild, moderate and severe dementia while rivastigmine and galantamine are approved for mild-moderate dementia.

Limited data is available on the efficacy of these medications on other types of dementia such as vascular dementia or dementia with Lewy bodies. Since there are no other medications approved for these conditions, and considering some similar pathology they are often used off label in an attempt to improve cognition.

Recent analysis of cholinesterase inhibitors in the treatment of Alzheimer's disease suggested that there is small clinical benefit and the studies used to prove their efficacy used flawed methods (Kaduszkiewicz, Zommermann, Beck-Bornholdt, & van den Bussche, 2005). Because of flawed methods and small clinical benefits, the scientific basis for recommending cholinesterase inhibitors for the treatment of Alzheimer's disease is questionable.

A Cochrane review (Birks, 2006) reports that the three cholinesterase inhibitors are effective in mild-to-moderate Alzheimer's disease. While all three have a slightly different mode of action there is no evidence any one is better than another. Not everyone responds to these treatments and there is no reliable method to determine which patients will respond favorably. Studies suggest that cholinesterase inhibitors are not cost effective.

Not everyone agrees with this opinion. The National Institute of Clinical Excellence (NICE) (Mayor, 2006) said that this class of medication would be considered in those with moderately-severe Alzheimer's disease with MMSE scores between 10-20. The NICE committee concluded that cholinesterase inhibitors were clinically and cost effective in patients with moderate Alzheimer's disease.

There still may be hope for acetylcholinesterase inhibitors. A small recent study showed that patients with dementia taking acetylcholinesterase inhibitors have MMSE scores that decline at a slower rate than patients not taking the drug (Nelson, Kryscio, Abner, Schmitt, Jicha, Mendiondo, Cooper, Smith & Markesbery, 2009).

A recent analysis suggested the cholinesterase inhibitors might have disease-modifying effects. The use of drugs that modify the butyryl cholinesterase system may have the most disease modifying effect. It was shown that there was some benefit, albeit not a dramatic one, over 3-4 years (Shanks, 2009).

The use of cholinesterase inhibitors in mild cognitive impairment shows questionable effect. There is no convincing positive effect in delaying the progression to dementia. These studies may have been flawed and further investigation is needed before a definitive answer is given (Farlow, 2009).

A recent study " Cholinesterase Inhibitor Treatment for Dementia" was posted by DEMENTIA TODAY on May 6, 2013 discussed a study done in Spain. 240 patients (mean age 77 years, SD 6.3, 66% female) with Alzheimer's disease or Lewy body dementia were prescribed a cholinesterase inhibitor (ChEI) and evaluated annually under conditions of standard practice. Of these, 152 patients maintained, 36 switched, and 52 abandoned ChEI treatments.

Results demonstrated less behavioral disturbance and less cognitive deterioration at the 3-4 year follow- up assessments in patients who maintained the first prescribed ChEI. Cognitive benefits were reinforced in the patients who experienced some adverse event, but no benefits were observed when the patient or caregiver did not perceive an effect. Conclusions were that the first prescribed ChEI was supported when some benefit was perceived by the patient or caregiver, even in cases of non-serious adverse events (Olazaran J, Navarro E, Rojo JM, 2013).

The newest medicine, approved in October of 2003, in the treatment of dementia is memantine HCl (Namenda). This drug is approved for moderate-severe Alzheimer's dementia and is sometimes combined with cholinesterase inhibitors. Side effects include dizziness, confusion, headache, and constipation. NICE (Mayor, 2006) did not recommend the use of memantine, because there was insufficient evidence of its clinical benefit for patients with moderately-severe or severe Alzheimer's.

While there is some evidence that these medications 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.

 

Other treatments

Treatment of depression is an important step in treating dementia. Treating depression improves mental function, lessens confusion, and improves dementia.

Other medicines that have been suggested for the treatment of dementia include non-steroidal anti-inflammatory medications, vitamin E, estrogen, and ginkgo biloba. Caution must be exercised with these medications as they have not been rigorously studied and not approved for dementia.

Non-steroidal anti-inflammatory medications include ibuprofen (Advil, Motrin), celecoxib (Celebrex) and naproxen (Aleve). They are postulated to benefit patients with Alzheimer's disease 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 medications 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 disease.

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 disease as it may delay the need for patients with Alzheimer's disease to need placement in long-term care (Sano, Ernesto, Thomas, Klauber, Schafer, Grundman, Woodbury, Growdon, Cotman, Pfeiffer, Schneider, & Thal, 1997). Caution must be used with Vitamin E because it increases the risk for bleeding which is especially concerning if on blood thinners.

Recent studies do not support the benefit of vitamin E in Alzheimer's disease. A small study suggested that vitamin E may help maintain cognition is some people with Alzheimer's disease. 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. Therefore, vitamin E is not recommended (Lloret A, Badia MC, Mora NJ, Pallardo FV, Alonso MD vina J, 2009).

Over all the jury is still out on Vitamin E. If you want to take vitamin E remember that there is a risk that it will speed up cognitive decline. A Cochrane review recommended that evidence is insufficient to say that vitamin E can prevent or treat people with Alzheimer's disease. More research is needed (Isaac MG, Quinn R & Tabet N, 2008).

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 disease (Luiz dos Santos-Neto L, de Vilhena Toledo MA & Medeiros-Souza P, 2006). A recent Cochran review suggest that gingko is safe to use, but likely not terribly effective (Birks J & Grimley-Evans J, 2009). 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 disease. 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

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 disease and can be associated with risk for others as there is at times physical aggression. Non-drug interventions, listed above, are the first interventions to treat behavioral problems. Keeping a behavioral chart defines the problem and facilitates in the treatment of the undesirable behaviors.

When non-drug interventions fail there are medicines to treat behavior problems. Anti-anxiety medicines, such as lorazepam (Ativan) or alprazolam (Xanax), reduce anxiety and related behavior problems." Caution must be used with benzodiazepines as they can cause excessive sedation and potentially paradoxical agitation." Buspirone (Buspar) can be tried, but its effectiveness is variable. Its dose needs to be titrated. The addition of trazodone at bedtime can aid with anxiety, depression, and insomnia.

Some evidence exists for the use of cholinesterase inhibitors in the management of agitation. But data does not prove its effectiveness (Howard, Juszczak, Ballard, et al. 2007). While this class of drug is not the ideal solution for the treatment of behavior problems, it may delay the emergence of behavior problems. Future studies will define the role these agents have in the treatment of behavior problems with dementia.

"The use of memantine or memantine with donepezil may help reduce behavior problems in those with Alzheimer's disease". In addition, cholinesterase inhibitors may reduce psychosis and behavioral problem in those with dementia with Lewy bodies. Symptoms that are most likely to benefit include apathy, agitation, aggression, delusions and hallucinations (Daiello, 2007).

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 medication 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 medications. 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 medications. 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 medication 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 medications in DLB.

Acute psychotic crises can arise and may require hospitalization. Intramuscular antipsychotic medication 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 medications 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. In respect to reduction of agitation and psychosis atypical agents show approximately 20 percent greater response rate than placebo (McKeith and Cummings, 2005). One study showed that dementia patients treated with quetiapine had an accelerated cognitive decline over placebo (Ballard, Margallo-Lana, Juszczak, Douglas, Swann, Thomas, O'Brien, Everratt, Sadler, Maddison, Lee, Bannister, Elvish, & Jacoby, 2005).

"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 (Smith, & Beier, 2004). While other studies raise questions to such high numbers, significant caution should be used with these medications. Completely avoiding these medications 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 medications work. In nursing home residents, those with more severe behavioral disturbances have a better response to antipsychotic medications. The response to medications may be most effective in those who are most profoundly affected by agitation and aggression without psychosis (Daiello, 2007).

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 medications after 2-8 months of treatment (Daiello, 2007).

Selective Serotonin Reuptake Inhibitors (SSRI) may be effective for the treatment of psychotic symptoms in dementia. A small study suggested that the antidepressant citalopram (Celexa) is as effective as risperidone in reducing psychotic symptoms such as hallucinations, delusions, and suspicious thoughts (Pollock, Mulsant, Rosen, Maxumdar, Blakesley, Houck, & Huber, 2007), with fewer side effects. This was a small study and it warrants further investigation before SSRIs can be recommended to treat psychosis in 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. 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.

Another question that has recently been looked at is the use of antidepressants in the prevention of dementia. A recent study suggested that the continued long-term use of antidepressants (it did not matter which antidepressant or antidepressant class was chosen) lowered 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 (Kessing, Sondergard, Forman, Anderson, 2009).

Behavioral interventions may be used in the management of behavioral problems in place of medications. There is some evidence that aromatherapy may be effective for agitation (Ballard, Gauthier, Cummings et al, 2009).

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 medications 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 medications fail. Ramelteon and eszopiclone are approved for long-term use.

 

Advanced Care Planning

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.

 

Prevention

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". 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 (Raschetti R, Albanese E, Vanacore N, & Maggini M, 2007). 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 (http://www.ncbi.nlm.nih.gov/pubmed/23637699.)

 

Complications of Dementia

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:

  Altering the consistency of the food
   
  Cutting food into smaller pieces
   
  Changing the position of the patient when he or she swallows
   
  Encouraging the patient to tuck the chin while swallowing
   
  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 or 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 (Li, 2002). 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.

 

Long – Distance Caregivers

A special report by the Alzheimer's Foundation (2013) estimated that more than 15.4 million people in the United States are caregivers for someone with Alzheimer's disease or other dementia.

2.3 million People are long-distance caregivers, living an hour or more from their care recipient. The care recipient was an older person who needed assistance to perform daily activities because of physical or cognitive impairments ( 2013 Alzheimer's Disease Fact and Figures).

Factors influencing geographic separation between the residence of children and their parents primarily deals with the following two concepts:

  Education levels of parents and children. When adult children or their parents have a formal education they tend to live farther apart than those who have fewer years of formal education.
   
  Number of children. Parents who have a lot of children usually have one child who lives nearby.

Small studies specific to long-distance caregivers demonstrate that caregivers, on the average are more educated, more affluent and more likely to be married than local caregivers

There are other secondary factors that also influence geographic separation. These include the following:

  Age: Middle age children tend to live farther apart than younger children. Adults 80 years or older tend to live closer to their children than those younger than 80 years of age.
   
  Income: Children making a high income tend to live farther from their parents than those who have a lower income.
   
  Children's family size: A child with a large family tends to live farther apart than those who have fewer children.
   
  Geography: Parents who live in rural areas tend to live farther from their children compared to parents who live in urban areas. Children who live in the Eastern part of the United States tend to live closer to their parents compared to those who live in the Western part of the United States.
   
  Geographic Mobility: Parents and children who have an extensive history of geographic mobility tend to live farther apart from each other..

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 disease. Merry schedules her mother's doctor appointments and goes with her to insure that her mother is on the right medications 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. She has prepared an apartment attached to her home for her mother to eventually move in to.

Merry is aware that at times she needs help from her sister who is the secondary caregiver and lives at least six hour 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.

Challenges along with the burden of being a long- distance caregiver are the following:

  Coordinating care which entails monitoring her mother's formal care i.e.: doctor visits, physical therapy, and social services.
   
  Assisting with ADLs as needed and provides outside help as warranted.
   
  Coordinates formal health care when needed.
   
  Works with community agencies that can assist her mother in a timely fashion.
   
  Has an emergency call system to get help if needed.
   
  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.

Unique challenges Primary long-distance caregivers face these are:

1. Coordinating care and Monitoring care given, received, results of treatments, social service assistance and changes in parent or loved one.
   
2. Assessing the care recipient's condition and needs.
   
3. Dealing effectively with family and disagreements with siblings and significant others.
   
4. Psychological stress and emotional distress often occurs. This may be due to having to handle the above challenges. 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.
   
5. When stress exists employment may suffer. More time is needed off when having to be a long-distance caregiver who may also be the primary caregiver. The caregiver may end up having to cut back on her/his working hours, may have to go part time, turn down a promotion, choose early retirement, loose benefits and attendance may suffer. Employers may end up having to let the long-distance caregiver go.
   
6. 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.

Primary and Secondary Caregivers need resources to ease their burden. Resources are found on the Web/internet. Some of these computer aid programs have been specifically developed for long-distance caregivers. Listed are the following resources found on the Web:

  Access to information about elder-care resource guides for the area in which the care recipient lives.
   
  Access to a professional family consultant who can act as a liaison between care recipients and long-distance care providers, and who can help alleviate and act as a facilitator when family disagreements occur.
   
  Access to information about elder-care financial planners and attorneys in the area in which the care recipient lives.
   
  Assistance in finding and developing a comprehensive safety plan for the care recipient that can be accessed and implemented by local and long-distance caregivers.
   
  Finding assistance for the recipient who lives alone and evaluating their needs on a consistent basis.

 

Impact of Alzheimer's Disease on Caregiver

Primary and secondary caregivers often times because of the stress of taking care of their loved ones with Alzheimer's disease and other dementias become sick themselves especially as the care recipient starts to need more supervision or becomes more unpredictable and possibly violent with frequent hallucinations.

The caregiver may experience:

1. Emotional stress
   
2. Depression,
   
3. Health impairments
   
4. Impaired immune system
   
5. Lost wages due to disruptions in employment
   
6. Depleted income and finances
   
(Sorensen S., Duberstein P, Pinquart M., 2006).

 

Interventions that may Improve Caregiver Outcomes

There are four types of caregiver interventions according to data from Sorensen et al., 2002.

1. Psychoeducational
   
        a. Includes a structured program providing information about the disease.
   
b. Provides a list of resources and services.
   
c. Gives information on how to expand skills to effectively respond to symptoms of the disease
(i.e., behavioral symptoms, cognitive impairment, care related needs).
   
d. Includes lectures by professionals with specialized training, discussions, and up to date Written material.
   
2. Supportive
   
        a. Focuses on building support among participants in a stress free environment where problems,
successes and feeling related to caregiving can be discussed.
   
b. Groups may be professionally or peer led in which group members realize they have similar
concerns and challenges. Ideas and strategies and resources can be shared.
   
3. Psychotherapy
   
        a. A relationship between a trained therapist and caregiver is developed in which the therapist educates the caregiver in self-monitoring skills, challenges negative thoughts and assumptions, helps caregiver to develop problem-solving abilities, works on time management techniques, identifies overload, management of emotions, and helps to re-develop positive experiences.
   
4. Multicomponent
   
        a. A skilled professional helps caregiver to combine the interventions such as psychoeducational, supportive, psychotherapy and technological approaches.
   

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. More work is needed.

 

Technological developments

Today there are core technologies in various stages of development to help the aging people remain independent, as well as help their caregivers monitor the care recipient and provide care and assistance as needed. These technologies include but are not limited to the following:

  Wireless broadband networks
   
  Biosensors and diagnostic tools
   
  Activity sensors
   
  Information processing systems to detect changes in health status based on sensor input
   
  Displays and actuators to assist in using appliances and home controls
   
  Artificial intelligence devices and systems that act as personal assistants and coaches
   
  Adaptive interfaces that allow impaired people to perform household tasks and other devices and tools.

The goal of using technological devices is to offer the potential to increase the connectedness of caregivers and care recipients and to alleviate the burdens of all caregivers, especially those who are long-distance caregivers.

 

Costs for Caring for People with Alzheimer's and other dementias

Costs for caring for people with Alzheimer's and other dementias will soar from an estimated $203 billion this year to a projected $1.2 trillion per year by 2050. Medicare and Medicaid cover about 70% of the costs of care (Alzheimer's Foundation, 2013). The Lewin Group used data from the Medicare Current Beneficiary Survey and the Lewin Group's Long Term Care Financing Model and agreed that total payment for 2013 are estimated to be $203 billion, including $142 billion for Medicare and Medicaid combined in 2013 dollars.

Use and cost of healthcare services for those with Alzheimer's disease and other dementias have more than three times as many hospital stays per year as older people who do not have dementia. Reasons for hospitalization for those with dementia in 2008 were due primarily to syncope, falls, and trauma (26%). Other causes were due to ischemic heart disease (17%), gastrointestinal disease (9%), pneumonia (6%), delirium, and mental status changes (5%), (Rudolph JL, Zann, NM et al, 2010).

Skilled nursing facilities in 2008 recorded that there were 349 skilled nursing facility stays per 1,000 beneficiaries with Alzheimer's disease and other dementias compared with 39 stays per 1,000 beneficiaries for people without these conditions (Bynum, J MD., Medicare Current Beneficiary Survey 2008).

Home health care statistics in 2008 stated that 23 % of Medicare Beneficiaries age 65 and older with Alzheimer's disease and other dementias had at least one home health visit during the year, compared with 10% of Medicare beneficiaries without Alzheimer's or other types of dementia (Bynum, J, MD., National 20% Sample Medicare Fee-For-Service Beneficiaries for 2009)

Medicare beneficiaries who have Alzheimer's disease and other coexisting medical conditions have a higher than average per-person payments for most health care services than those with the same medical conditions who do not have dementia. An exception to this is hospital care and total Medicare payments for beneficiaries with congestive heart failure. "Medicaid is the only public program that covers the long nursing home stays that most people with dementia require in the late stages of their illness when their financial assets have been depleted to due to the high costs of adult day services, $70/day, assisted living $42,600 per year, nursing home care $81,030 to $90,000 per year (Met Life Mature Market Institute, 2012)."

 

Use and Costs of Hospice Care

Hospices provide the medical care, pain management, emotional and spiritual support, for people dying and their families. In 2009, 6% of all people admitted to hospices in the United States had a primary diagnosis of Alzheimer's disease (61,146 people) The average length of stay for hospice beneficiaries with primary diagnosis of dementia increased from 67 days in 1998 to 92 days in 2009 (U.S. Centers for Medicare and Medicaid Services, Hospice Center)The average per-person hospice care payments across all beneficiaries with Alzheimer's disease and other dementias were 10 times as great as average per-person payments for all other Medicare beneficiaries ($1,821 per person compared with $178 per person (Medicare Beneficiary Survey for 2008)..

 

Future Projections

Projected for the future are that total payments for health care, long term care and hospice care for people with Alzheimer's disease and other dementias will increase from $203 billion in 2013 to $1.2 trillion in 2050. This would be due to a six-fold increase in government spending under Medicare and Medicaid and a five-fold increase in out of pocket spending (Alzheimer's Foundation, 2013).

 

Conclusion

As our population ages and people live longer it is estimated that 2.3 million people are or will be long-distance caregivers, living an hour or more from their recipient. Long-distance caregivers may spend less time helping the care recipient than local caregivers. Long-distance caregivers have higher out of pocket expenses, experience greater challenges assessing the care recipient's needs and condition, report more difficulties trying to communicate with healthcare providers resulting in developing higher levels of psychological distress. Family discord arising from being the primary or secondary caregiver also adds to their emotional distress.

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 medications 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 have an understanding of the disease and how to help patients and families cope with dementia.

 

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