Alzheimer's Disease

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This course will expire or be updated on or before June 1, 2015.

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Alzheimer’s Disease

By Nancy Evans, BS

Nancy Evans is a health science writer and editor with more than three decades of experience in healthcare publishing. She served as senior editor at Mosby/Times Mirror, senior editor in the health sciences division of Addison-Wesley, and senior medical editor at Appleton & Lange. A breast cancer survivor since 1991, she has written and spoken extensively on breast cancer issues. Nancy co-produced the HBO documentary film Rachel's Daughters: Searching for the Causes of Breast Cancer. She is also the co-producer of Children and Asthma, a KQED documentary film, and the documentary, Good Food, Bad Food: Obesity in American Children.

Judith Swan, MSN, RN

Judith Swan has been in the healthcare field for almost forty years. She began her career as a medic in the U.S. Air Force. As an R.N., she has worked in several specialty areas, including dementia care. She holds an M.S.N. as a family nurse practitioner. Judith also has nine years of experience in the nursing education field teaching psychiatric, long-term, and dementia nursing care. She has been published in the Journal of Psychosocial Nursing and is currently a freelance writer producing ancillary educational materials for nursing textbook publishers, state curriculum for nursing assistant programs, continuing education courses for paramedics, and online health articles.

COURSE OBJECTIVE:  The purpose of this course is to educate healthcare professionals about Alzheimer’s disease, including epidemiology, pathophysiology, therapies, and strategies for caregiving.

LEARNING OBJECTIVES

Upon completion of this course, you will be able to:

  • Summarize the epidemiology and the financial and societal impact of Alzheimer’s disease (AD).
  • Outline the research done on Alzheimer’s disease, including the search for causes, diagnostic testing, and treatments.
  • Describe the pathophysiology of Alzheimer’s disease.
  • List available medical therapies, including their risks and benefits.
  • Identify strategies for dealing with the effects of Alzheimer’s disease.
  • Describe effective ways to support families and caregivers.
  • Discuss ethical and legal issues in caring for the Alzheimer’s disease client, including end-of-life care.

INTRODUCTION

Alzheimer’s disease (AD) is an irreversible, progressive, degenerative disease of the brain that damages and eventually destroys brain cells. This leads to loss of memory and impaired judgment, language, orientation, and executive functioning. Over time, the disease causes behavior and personality changes and eventually loss of physical function.

Alzheimer’s disease is one of a group of disorders called dementias, which are brain failures characterized by progressive cognitive and behavioral changes. Other forms of dementia include:

  • Vascular dementia
  • Dementia with Lewy bodies
  • Fronto-temporal dementia
  • Korsakoff’s syndrome
  • Creutzfeldt-Jakob disease
  • Mild cognitive impairment
  • Other rare forms

Of these, Alzheimer’s disease is the most common cause of dementia.

Alzheimer’s disease results from a complex pattern of abnormal changes, develops slowly, and gradually worsens. The course of AD and the rate of decline vary from person to person. Alzheimer’s disease can be present for many years before there are clinical signs and symptoms of the disease. On average, clients with AD live for 8 to 10 years after diagnosis, but some may live as long as 20 years.

Historical Perspective

Senile dementia—the loss of memory and other intellectual faculties that occur in the elderly—was recognized in the time of Hippocrates. In the centuries that followed, this condition was thought to be simply a result of old age, commonly called “hardening of the arteries.” Diseases of old age, however, were considered unimportant until the second half of the nineteenth century, when scientists began to learn more about preventing and treating these conditions.

SIGNIFICANT DEVELOPMENTS IN THE HISTORY OF ALZHEIMER’S DISEASE
1906 German psychiatrist Alois Alzheimer first described the pathology of the disease after using staining techniques to identify amyloid plaques and neurofibrillary tangles in the brain associated with the symptoms of senile dementia.
1910 The disease was labeled Alzheimer’s disease.
1931 After the invention of the electron microscope, it became possible to conduct further study of the brain by viewing actual brain cells, opening the door to research into many areas of brain disorders, including AD.
1968 Lawton Instrumental Activities of Daily Living Scale was developed to measure cognitive function. This tool is used to determine how a person is functioning at baseline and to identify improvement or deterioration over time.
1976 Alzheimer’s was recognized as the most common form of dementia.
1980 Alzheimer’s Association was founded.
1984 Beta-amyloid was identified as forming AD’s characteristic plaques, which cause reduced neurological function.
1986 Tau protein was identified as forming AD’s characteristic neurofibrillary tangles.
1987 First Alzheimer’s drug trial was begun; the first deterministic Alzheimer’s gene was discovered.
1990s First Alzheimer’s disease “risk factor” gene was identified, called APOE-e4.
1993 First Alzheimer’s drug, tacrine (Cognex), was given approval by the FDA. In the next ten years, four additional drugs were added.
1994 President Reagan announced he was diagnosed with AD.
1999 An Alzheimer’s vaccine was found to be successful in mice but caused symptoms of brain autoimmune response in humans.
2003 FDA approved memantine, an N-methyl-D-aspartate (NMDA) antagonist that reduces certain types of brain activity by binding to NMDA receptors and blocking the activity of glutamate, which in AD can overstimulate nerve cells and kill them.
2004 The new imaging agent known as Pittsburg Compound B (PiB) was produced to be used with positron emission tomography (PET) for early detection of AD.
2011 Alzheimer’s disease advanced to become the sixth leading cause of the death in the United States and the fifth leading cause of death for persons over the age of 65.
2011 President Obama signed the National Alzheimer’s Project Act into law, and new criteria and guidelines were proposed to define a preclinical stage of the disease (Alzheimer’s Association, 2011).
2011 Canadian scientists used a technique known as deep brain stimulation (applying electricity to regions of the brain) to reverse AD-related memory loss.
2012 Scientists discovered that specific antibodies that block the function of a related protein (Dkk1) are able to completely suppress the toxic effect of beta-amyloid on synapses. (UCL, 2012).

Scientists continue the search for answers regarding causes, diagnoses, and treatments for AD. For instance, new diagnostic criteria are under review that emphasize the AD pathophysiological process as beginning years before clinical symptoms and the use of biomarkers to detect AD-related changes in the brain (Budson & Solomon, 2012). Similarly, research into deep brain stimulation used for treatment of Parkinson’s disease has revealed a potential for treating the effects of AD on the hippocampus by reversing its expected decline and even leading to its growth (Lozano, 2010).

Epidemiology

As life expectancy in the United States has risen to more than 77 years, so has the number of persons with a probable diagnosis of AD. An estimated 5.4 million Americans of all ages and 1 in 8 older Americans had AD in 2012. This is projected to reach 12 to 16 million by the year 2050.

AGE

Of those with AD, 4% are under age 65, 6% are 65–74, 45% are 75–84, and 45% are 85 or older. People over 85 constitute one of the fastest growing segments of the population, and as this population continues to grow, so will the number of people with AD. Currently, nearly half of people aged 85 and older have AD. Likewise, by 2030 the number of people age 65 and older who have AD is expected to reach 7.7 million, an increase of more than 50% over the number currently affected (Alzheimer’s Association, 2012).

GENDER

Almost two thirds of all Americans with AD are women. It is estimated that of the 5.2 million people over the age of 65 with AD in the United States, 3.4 million are women and 1.8 million are men. This is explained by the fact that women live longer on average than men and not that women are more likely than men to develop dementia (Alzheimer’s Association, 2012).

RACE/ETHNICIY

Most people in the United State with AD and other dementias are non-Hispanic whites. Older African Americans and Hispanics, however, are more proportionately likely than older whites to have AD and other dementias. In persons ages 65 or older, 7.8% of whites, 18.8% of African-Americans, and 20.8% of Hispanics have AD or other dementias. Health conditions such as high blood pressure and diabetes and other differences in socioeconomic characteristics that are risk factors for AD are more common in older African Americans and Hispanics than in older whites (Anderson, 2012).

EDUCATION LEVEL

People with fewer years of education appear to be at higher risk for AD than those with more years of education. Researchers believe a higher level of education provides a “cognitive reserve” that enables individuals to better compensate for changes in the brain that can result in AD. While a higher level of education can help reduce the risk of developing AD, once educated people start to have memory loss, a high level of education does not appear to protect against how fast they will lose their memory (Wilson et al., 2009).

Financial Impact

Alzheimer’s disease inflicts a heavy economic burden on families and on society as a whole. According to the Alzheimer’s Association, the cost of caring for individuals with AD is estimated in 2012 to be $200 billion annually and is projected to increase to $1.1 trillion in 2050. Medicare and Medicaid currently cover about 70% of the costs of care for patients with AD. The annual cost in 2010 of a Medicare patient with AD was triple that of a patient without AD: $19,304 and $6,720, respectively (Swartz, 2010).

Although the number of persons diagnosed with AD is increasing, the mortality rate of these individuals is decreasing. Patients with AD have significantly more co-morbid medical conditions and higher healthcare costs and utilization than demographically matched Medicare beneficiaries. Medicaid is the only major source of financial assistance for long-term care for people with Alzheimer’s disease.

The staggering costs of AD for families—home healthcare, adult daycare, caregiver respite, and long-term care—are seldom covered by medical insurance or Medicare, which is intended to cover the acute healthcare needs of people over 65 and disabled people under 65. Clients who have long-term care insurance, which may cover home healthcare, or those who are eligible for state-funded Medicaid programs, have some coverage for these services, but many families must pay all or most of the cost themselves.

Currently there are 14.9 million unpaid caregivers, and 80% of care for dementia patients is provided at home by family caregivers. Fewer than 10% of dementia patients receive all their care from paid workers. The unpaid caregivers are primarily immediate family members but also include other relatives and friends. In 2011 they provided $17.4 billion of unpaid care valued at over $210 billion (Alzheimer’s Association, 2012).

MEDICARE COVERAGE AND ALZHEIMER’S

Medicare Part A mainly covers the following services:

  • Inpatient hospital care with deductible
  • Skilled nursing care facility after 3 days of hospitalization for up to 100 days (the first 20 days paid in full and the remaining 80 days requiring a co-payment) if need exists
  • Limited home healthcare, including part-time skilled nursing care, physical therapy, speech-language therapy, home-health aide services, durable medical equipment (such as wheelchairs, hospital beds, oxygen, and walkers) and supplies and other services if need exists; AD alone is not sufficient to justify services. Patient must pay 20% of costs for durable medical equipment, which must be prescribed by a doctor.
  • Companion care services, if accompanied by a need for skilled nursing care after a hospital stay of 3 days or longer and is overseen by a skilled professional (such as a registered nurse). This is only covered for a designated amount of time following a hospital stay.
  • Hospice care if terminally ill and the patient’s physician and a hospice medical director certify that life expectancy is six months or less; this applies both to home care and nursing home care. By choosing hospice care, the patient waives the right for Medicare to pay for other services to treat the terminal illness.

Medicare Part B covers 80% of the costs for the following services:

  • Evaluation and diagnosis after deductible. This includes the use of positron emission tomography (PET) scans for Medicare beneficiaries with suspected AD or other dementia if other diagnostic methods have been inconclusive.
  • Physician visits for treatment of AD after deductible. It is important that the physician use code 331 when completing insurance forms; otherwise, Medicare will cover only 50% of the physician’s bills.
  • Physical therapy, occupational therapy or speech therapy, psychotherapy or behavioral management therapy by a mental health professional, and skilled home-care services (such as skilled nursing, speech or physical therapy).

Medicare does not pay for prescription drugs for Alzheimer’s, adult day care, or room and board at assisted-living facilities or nursing homes. Medicare policy related to Alzheimer’s disease may change, so it is advisable to consult the Medicare websites for the latest information.

Source: DHHS, 2012.

WHAT IS ALZHEIMER’S DISEASE?

Pathophysiology

Normal aging involves changes throughout the body, and the brain is not exempt. In normal aging some neurons die; others shrink and become less effective, especially in areas of the brain related to learning, memory, and executive function (the abilities required to plan, organize, and carry out tasks). Inflammation, the production of unstable molecules called free radicals, and breakdown of energy production within the cell also increase with age. These age-related changes in the brain vary from person to person, and a healthy individual may experience only a slight decline in memory as a result.

Aging itself is a major risk factor for developing Alzheimer’s, but aging is not the direct cause of the disease. As we age, tangles develop in neurons, and plaques may accumulate in particular regions of the brain. The hallmark of AD is an exceptionally large number of neurofibrillary tangles and plaques in the brain. The brains of victims of Alzheimer’s disease also reveal loss of neurons marked by shrinkage of parts of the cerebrum.

Illustration

Shrinkage of the brain due to Alzheimer’s disease. (Source: National Institute on Aging/National Institutes of Health.)

PLAQUES

Three decades of research have begun to shed light on how AD steadily destroys brain function. Amyloid precursor protein (APP), produced by healthy neurons, is severed by two enzymes, called beta and gamma secretase. This process creates a short, sticky protein called beta-amyloid. Instead of dissolving in the fluid that surrounds the neurons, beta-amyloid protein folds into insoluble clumps called fibrils. The fibrils stick together, resulting in plaques on the surface of the neuron. Beta-amyloid plaques are one of two characteristic lesions of AD.

TANGLES

The other lesion that characterizes AD is called a neurofibrillary tangle that forms inside the neuron itself. Normally, healthy neurons connect with each other through slender appendages or branches called neurites. The neurites contain microtubules that maintain the shape of the cell and serve as its life support system, carrying nutrients and neurotransmitters.

The walls of the microtubules are reinforced by tau proteins, which act like the rungs on a ladder. In AD, the tau proteins loosen and form neurofibrillary tangles. Without the normal reinforcing effect of the tau proteins, microtubules with loose tau proteins disintegrate, cutting off life support to the neuron, which then shrivels and dies.

Illustration

A neurofibrillary tangle of tau proteins, which forms inside the cell. (Source: Alzheimer’s Disease Education and Referral Center.)

DISRUPTION OF NEUROTRANSMITTERS

Alzheimer’s disease reduces the production of certain neurotransmitters in the brain that normally act as chemical messengers, transmitting nerve impulses. These neurotransmitters include acetylcholine, norepinephrine, serotonin, and somatostatin. Reduction of acetycholine is first apparent in the entorhinal cortex, which is adjacent to the hippocampus, an area of the brain associated with recent memory and storage of new information.

Causative and Risk Factors

Alzheimer’s disease is a complex disease with no single, clear-cut cause, and therefore no sure means of prevention or “silver bullet” cure or treatment. A number of scientists suggest that AD is an ecological disease related to the interaction of genetic, environmental, and lifestyle factors over many years, which lead to changes in brain structure and function.

Alzheimer’s disease is classified by heritability and age of onset. Early-onset AD occurs in people between 30 and 60 years of age and is also called pre-senile dementia. Fortunately, early-onset AD is rare (less than 5%). It often progresses more rapidly than late-onset AD. Most forms of early-onset AD are inherited. Late-onset AD, the most common form of the disease, occurs after age 60 and is referred to as senile dementia Alzheimer’s type (SDAT).

GENETIC FACTORS

Early-onset Alzheimer’s disease is caused by a number of different single gene mutations (defects) in three genes located on three different chromosomes:

  • Mutations in the APP gene on chromosome 21
  • Mutations in the presenilin 1 gene on chromosome 14
  • Mutations in the presenilin 2 gene on chromosome 1

Each mutation causes abnormal proteins to be formed. Each of these mutations plays a role in the breakdown of APP, a protein whose precise function is not yet known. Breakdown of this protein is part of a process that generates harmful forms of amyloid plaques.

Everyone inherits two copies of each of these genes—one from each parent. A parent carrying a defective version of one of these genes has a 50-50 chance of transmitting the defective gene to each of his or her children. A single defective version of any one of these three genes will cause early AD nearly 100% of the time. This type of inheritance pattern is called autosomal dominant inheritance.

There is no scientific evidence that links these mutations with the more common sporadic, late-onset AD. However, even though autosomal dominant inheritance of genetic mutations does not appear to cause late-onset AD, other genetic factors may increase the risk for developing the sporadic form of the disease.

No specific gene that causes the late-onset form of the disease has been identified. However, one genetic risk factor that appears to increase the likelihood of developing the disease is the apolipoprotein E (APOE) gene found on chromosome 19. This gene comes in several different forms, and as yet its role is not understood.

The APOE protein is found in the neurons of healthy brains and in excess amounts in the brains of people with AD and Down syndrome. Inheritance of one or two copies of the gene version apolipoprotein E epsilon 4 (APOE e4) on chromosome 19 increases the risk of late-onset AD (NIA, 2011).

In 2009 and 2010 researchers identified three additional genes as possible risk factors. These do not predict the development of late-onset AD as strongly as APOE, but their identification gives researchers an idea of the biological factors that may contribute to the disease (NIA, 2011).

Scientists recently reported that genetic factors accounted for up to 80% of cases of AD based on the largest twin study to date, the Swedish Twin Registry (Pederson, 2012). But researchers have also found only a 45% concordance rate for identical male pairs, demonstrating that identical twins sharing the same genetic makeup vary in their susceptibility to Alzheimer’s. In other words, if one sibling has dementia, the chances are less than half that the other twin will develop the disease. The conclusion is that environmental and lifestyle factors also play a significant role in the development of AD (Barnes & Yaffe, 2011).

LIFESTYLE AND HEALTH FACTORS

Certain risk factors for AD other than advancing age, family history, genotype, and Down syndrome have been definitively linked to the development of AD.

Chronic Stress

Chronic stress may be implicated in AD because of consistently high cortisol levels that can cause brain cell dysfunction, kill brain cells, and lead to brain atrophy. Several studies have shown that this increases the risk for Alzheimer’s disease (Fillit, 2010).

Depression

Researchers following persons enrolled in the Framingham Heart Study found depression to be a significant risk factor for dementia. Depression may act synergistically with biological factors that have been linked to dementia to cause cognitive decline. These same biological factors that lead to depression late in life also lead to dementia. It is not clear, however, if depression is a risk factor for dementia or if vulnerability to depression also makes people more vulnerable to AD (Spalletta et al., 2012).

Major depression in late life may directly damage part of the brain involved in learning and memory by inflammation or the release of stress hormones.

Diabetes

Studies have demonstrated a strong link between diabetes and Alzheimer’s disease. Scientists do not yet know exactly how they are connected, but they do know that excessive blood sugar or insulin can harm the brain. Diabetes raises the risk of heart disease and stroke, too much insulin affects different chemicals on which the brain depends, and high blood sugar causes inflammation. One study shows that seniors with diabetes have a greater risk of developing all forms of dementia within 15 years of diagnosis (Bazell, 2011).

Smoking

Studies are demonstrating a link between heavy smoking and the development of AD. Persons who smoke more than two packs of cigarettes a day also have an increased risk of developing other forms of dementia. Heavy smoking in midlife is associated with a 157% increased risk of developing AD and a 172% increased risk of developing vascular dementia. It is believed that this may be due to narrowing blood vessels that supply the brain with blood (Rusanen et al., 2011). Smoking also is a risk factor because of the toxic chemicals and metals present in the tobacco smoke. Many of these substances—such as benzene, formaldehyde, arsenic, lead, and cadmium—are known neurotoxins.

ENVIRONMENTAL FACTORS

Currently there are many studies underway in the search for environmental links to the development of AD. These possible links include:

  • Lead
  • Metals such as aluminum, methylmercury, iron, zinc, and copper
  • Pesticides
  • Low-frequency electromagnetic fields

While there are no conclusive findings to indicate these factors cause or contribute to the development of AD, some occupational studies implicate metals, pesticides, and electromagnetic fields. This points to the need for caution by reducing or eliminating worker and public exposure to these agents. Protecting children from early exposure to lead and other metals may also reduce the number of AD cases in the future, since lead poisoning is known to affect neurological function.

Possible Preventative Strategies

Preventing AD would save untold suffering of patients and families, not to mention billions of dollars. It is important to recognize that many risk factors are interrelated. Research studies to identify factors that increase or decrease the risk of developing AD are a first step toward making primary prevention a reality. For example, lifestyle choices related to diet and exercise that reduce the risk of diabetes, hypertension, cardiovascular disease (including atrial fibrillation), stroke, and obesity could also reduce the risk of AD as well as alter the course of the disease.

Researchers report that physical exercise at midlife reduced the risk of dementia three decades later. Physical inactivity is the leading preventable risk factor for AD, responsible for 21% or 1.1 million cases (Barnes, 2011).

New evidence indicates that poor cardiovascular health may increase the risk for AD. Total cholesterol, smoking, and high systolic blood pressure at midlife are associated with a greater risk for AD in later life. Cardiovascular risk factors are modifiable, and unlike those risk factors such as aging and genes, there are ways to improve heart health (Ready, 2012).

The current evidence regarding diet and Alzheimer’s disease risk factors and prevention suggests a possible association between fish consumption, monounsaturated fatty acids and polyunsaturated fatty acids, and a reduced risk of cognitive decline and dementia. At this time, based on this evidence, no definitive dietary recommendations are possible; however, following dietary advice for reducing the risk of cardiovascular and metabolic disorders should be encouraged (NIH, 2011).

A National Institutes of Health panel recommends weight control. The heavier a person is, the more likely to develop AD. The brains of older individuals who were obese had approximately 8% less brain volume than persons of normal weight. When brain volume loss reaches about 10%, memory trouble or confusion appears. Having a large belly in midlife increases the chances for suffering AD three times (NIH, 2011).

Other factors have been shown to protect against or delay, but not prevent, cognitive decline. These include:

  • Higher levels of education
  • Higher socioeconomic status
  • Emotional support
  • Better baseline cognitive function
  • Better lung capacity
  • More physical exercise
  • Moderate alcohol use
  • Use of vitamin supplements

RECOGNIZING THE DISEASE

Clinical Manifestations

The hallmark of Alzheimer’s disease is memory impairment. This is by no means the only characteristic feature, nor is it the most important. There are also many conditions apart from Alzheimer’s disease that can lead to memory impairment. In AD, however, the memory impairment is associated with evidence of cognitive decline and impaired judgment, and it has an insidious onset.

MEMORY IMPAIRMENT

Memory has three modalities: immediate memory (remembering for a few seconds), short-term memory (remembering for a few minutes or hours), and long-term memory (remembering for a few years). Early in AD, short-term memory is impaired but long-term memory is preserved. Immediate memory is also affected and may be secondary to a short attention span.

It is important to differentiate the memory impairment of Alzheimer’s disease from that sometimes noted in normal people, which is often called benign forgetfulness or age-associated memory impairment. Benign forgetfulness is usually sporadic, but memory impairment in AD interferes with the patient’s social and professional activities.

Early in the course of AD, patients usually are aware of their memory deficit and may make notes to remember important things, but sooner or later the memory deficit is such that they may forget to check their notes. Later they may become frightened and apprehensive about their memory problems and may feel depressed and discouraged. As the disease progresses, patients lose insight into their memory deficit and are no longer aware of it. It is as this point that patients must be protected from themselves.

INABILITY TO ACQUIRE AND PROCESS NEW INFORMATION

One of the earliest manifestations of AD is the inability to acquire and retain new information and integrate it into one’s acquired knowledge. Often the first indication that something is wrong becomes apparent when the individual is unable to develop new skills at work or has difficulty keeping abreast of current events.

Because of this difficulty in processing new information, a sudden change in a person’s environment can trigger an episode of severe confusion. For example, the individual suddenly finds himself in a strange place and is unable to remember how he got there. As a result, he becomes agitated. In the early stages of AD, this type of problem does not last long. With explanations and reassurance, the patient soon becomes reoriented, alert, and rational.

LANGUAGE DIFFICULTIES

Language difficulties are present at the earliest stages of the disease. Initially they may be so subtle as not to be readily apparent to others and can be detected only by neuropsychological tests. As the disease progresses, these language deficits become more marked and are readily noticeable.

Anomia, the inability to find the right word, is a characteristic of AD. At first the patient is aware of this and may make up for it by using sentences to describe an object he cannot name. This is confined in the early stages to objects the person is not in contact with on a regular basis. As the condition worsens, anomia comes to include common objects such as an eating utensil or a pen.

As the disease progresses, agnosia sets in. In addition to being unable to name an object, the person now cannot identify it. Loss of ability to recognize people they have not seen for a long time may occur, and as time moves on, patients may not be able to recognize their spouse or other close relatives. The person becomes unable to follow any coherent train of thought. Eventually aphasia develops, and the person is unable to understand what he hears. Spontaneous speech deteriorates. The patient tends to repeat words and questions (echolalia) without making any effort to answer questions. In the advanced stage of the disease, speech becomes unintelligible, and eventually the person becomes mute.

APRAXIA AND IMPAIRED VISUOSPATIAL SKILLS

Early in the course of AD, apraxia (the inability to carry out purposeful movements and actions despite lack of motor or sensory deficits) becomes evident. Newly acquired skills and complex or technical skills, especially those that require integration of different stimuli, become more difficult to perform. The actions that have become automatic, such as eating and dressing, are preserved until the late stages. This is due to the fact that complex skills are controlled mainly by the cerebral cortex, and the control of automatic action is consigned to the basal ganglia.

Visuospatial cognition is the ability to see and analyze objects in relation to their surroundings and to identify stimuli and their location. Impaired visuospatial cognition may explain why a person becomes lost in familiar surroundings or while driving a car. As the disease progresses, simple activities of daily living become impossible. An object may be recognized, but the person has no idea what to do with it.

POOR JUDGMENT

Eventually, the AD patient loses the ability to use correct judgment. This is often the point at which relatives recognize there is something seriously wrong. Poor management of one’s finances is one of the most common presenting symptoms of AD.

SELF-NEGLECT

One of the earliest manifestations of AD is when patients stop taking pride in their general appearance. If a person makes no attempt to comb her hair or her clothes are torn or stained and there is no physical incapacitation, the caregiver can assume that self-neglect is present.

Other signs of self-neglect include failure to take medications, refusal to seek treatment for serious illness, poor hygiene, inability to maintain housekeeping duties, dehydration, and malnutrition. In addition, the person may hoard things and live in hazardous or unsafe conditions.

PERSONALITY CHANGES

Personality changes in AD patients can be severe. They can include self-centeredness, withdrawal, increased passivity, and agitation. Many persons develop delusions of persecution, including infidelity and fear of theft or harm.

Persons may also experience mood changes, and these are marked by loss of interest, loss of energy, and depressed mood in the early stages.

BEHAVIORAL PROBLEMS

Behavioral problems are distressing to patients as well as caregivers. These may include stubbornness, resistance to care, suspicion of others, use of abusive language, acting in response to delusions or hallucinations, rummaging through other people’s rooms, stealing, hiding things, urinating in inappropriate places, angry outbursts, and violence precipitated by trivial events. Restlessness, wandering, and reversals of the sleep/wake cycle are often present. Asocial sexual behaviors may occur, such as masturbating in public.

PHYSICAL DETERIORATION

Physical health remains well for most AD patients until the late stage of the disease. Patients may experience falls, spend more time sitting in a chair or lying in bed, and eventually develop muscle rigidity. Later they may become incontinent, and finally they are bedridden. These patients eventually succumb to one of three most common causes of death—pneumonia, urinary tract infection, and infected decubitus ulcers.

Clinical Stages of AD

Several classifications have been used for determining the level of care Alzheimer patients need and for comparing groups of patients with one another. It is important to realize that classifications are arbitrary, and there is a great deal of overlap among the various stages. The most commonly used classification divides the disease process into three stages. In the first stage memory is impaired, in the second stage there is evidence of gross deficit in cognition, and in the third stage severe intellectual deterioration and physical deficits become apparent.

EARLY STAGE

Early-stage (mild) AD first affects memory, language, and reasoning. This stage is typically marked by one or more of the following symptoms:

  • Memory loss: poor recent memory
  • Mild anomia
  • Confusion about location of familiar places (beginning to get lost)
  • Taking longer to accomplish normal daily tasks
  • Trouble handling money and paying bills
  • Making bad decisions due to impaired judgment
  • Loss of spontaneity and sense of initiative
  • Mood and personality changes, increased anxiety

Illustration

Medial view of the brain, showing areas of early damage to the hippocampus and portions of the frontal lobe in blue. (Source: Alzheimer’s Disease Education and Referral Center.)

MID-STAGE

Mid-stage (moderate) AD involves areas of the cerebral cortex that control language, reasoning, sensory processing, and conscious thought. These regions continue to atrophy, resulting in more pronounced and widespread symptoms.

Behavior problems, such as wandering and agitation, require more intensive supervision and care. Symptoms of this stage usually include:

  • Increasing memory loss, both remote and recent
  • Shortened attention span
  • Problems recognizing friends and family members
  • Difficulty with language; problems with reading, writing, numbers
  • Difficulty organizing thoughts and thinking logically
  • Inability to learn new things or to cope with new or unexpected situations
  • Restlessness, agitation, anxiety, tearfulness, and wandering, especially in the late afternoon or at night
  • Loss of ability to tell time; late-day time disorientation and confusion, called “sundowning”
  • Repetitive statements or movement, occasional muscle twitches
  • Hallucinations, delusions, suspiciousness or paranoia, irritability
  • Loss of impulse control (sloppy table manners, undressing at inappropriate times or places, vulgar language)
  • Perceptual-motor problems (trouble getting out of a chair or setting the table)

Illustration

Medial view of the brain, showing areas affected by mild-to-moderate AD in blue. Note the spread of damage forward into the frontal lobe and backward into the temporal lobe. (Source: Alzheimer’s Disease Education and Referral Center.)

LATE-STAGE

Late-stage (severe) AD lasts between 8 to 12 years and is notable for the following:

  • Severe impairment of all cognitive functions
  • Physical impairment involving unsteadiness, repeated falls, reduced mobility
  • Total loss of ability to care for oneself.
  • Inability to recognize immediate family members
  • Weight loss
  • Seizures, skin infections, difficulty swallowing
  • Groaning, moaning, or grunting
  • Increased sleeping
  • Lack of bladder and bowel control
  • Impaired swallowing, which can lead to aspiration pneumonia (the most common cause of death in AD patients)

Illustration

Medial view of the brain, showing areas affected by severe AD in blue. Note the increased damage in the hippocampus (dark blue) and the spread of the disease throughout the frontal, temporal, occipital, and parietal lobes. (Source: Alzheimer’s Disease Education and Referral Center.)

Screening

The Alzheimer’s Association reports that current medical guidelines do not recommend that primary care physicians perform routine assessment for cognitive impairment or dementia in their patients “unless a person exhibits obvious signs or symptoms of cognitive impairment” (Alzheimer’s Association, 2011).

In addition, there is no evidence of benefit in screening people without symptoms of memory problems, and there are potential risks for negative consequences. These risks include false positives that may cause depression or anxiety, possible stigma, loss of long-term care insurance, loss of employment, or loss of a driver’s license. There is agreement, however, that testing is useful for patients who are experiencing memory problems.

Medicare’s new Annual Wellness Visit includes assessment for possible cognitive impairment as part of the patient’s overall condition. It is hoped that due to this change, earlier detection will be more common and thorough diagnostic evaluation can be completed in appropriate people (Medicare.gov, 2012).

Clinical Diagnosis

Clinical diagnosis of AD is usually made during the early stage, when the person appears to be physically healthy but is having increasing difficulty making sense of the environment. The affected person and the family may mistake early signs of AD for normal age-related changes. Deciding to seek diagnostic testing can be a major hurdle for the person and the family.

Alzheimer’s disease remains a diagnosis of exclusion, ruling out other conditions that may cause similar symptoms, such as stroke, hypothyroidism, hypercalcemia, depression, nutritional deficiencies (including B12), normal-pressure hydrocephalus, head trauma, brain tumor, Parkinson’s disease, dehydration, brain infections (HIV, encephalitis, meningitis), syphilis, and chronic effects of alcohol or medications, both prescribed and over-the-counter.

Definitive diagnosis of AD is still only possible at autopsy. The information needed to make a clinical diagnosis depends on the patient’s complete health history, physical examination, neurological and mental status assessments, analysis of blood and urine, electrocardiogram, and possibly an imaging exam.

MENTAL STATUS EXAMINATION

The Mini-Mental Status Examination (MMSE) is a quick evaluation tool used to assess people with cognitive impairment or memory loss. It measures an individual’s reality orientation, registration abilities, attention and calculation skills, recall, language, and visuoconstruction (seeing and copying designs) abilities.

The highest possible score is 30 points. Those who score less than 24 need further evaluation for possible AD or other dementia, depression, delirium, or schizophrenia. Those who score 20 or less generally have one of these disorders. Although widely used, the MMSE may misclassify patients in minority populations or those with low educational levels.

A number of alternative screening strategies have been developed—most recently, the Alzheimer’s Disease Screen for Primary Care (ADS-PC). This two-stage strategy uses two brief tests in the first-stage rapid screen: memory impairment screen (MIS) and animal fluency. Only those who fail the rapid screen undergo the second-stage testing, which uses free and cued selective reminding (FCSR). ADS-PC appears to be more sensitive in detecting early dementia and more accurate in classifying African American patients than the MMSE, but these results were not found in patients with low educational levels (Grober et al., 2008).

THE MINI-MENTAL STATUS EXAM
Indications
  • Cognitive Function Assessment
  • Documentation of subsequent cognitive function decline
Category Points Questions (Total of 30 points)
1. Orientation 10
  • Year, season, date, day of week, month
  • State, county, town or city
  • Hospital or clinic, floor
2. Registration 3
  • Name three objects: apple, table, penny
    - Speak each one distinctly and with a brief pause
    - Patient repeats all three (one point for each)
  • Repeat process until all three objects learned
  • Record number of trials needed to learn all three
3. Attention
and Calculation
5
  • Spell WORLD backwards: DLROW
    - Points given up to first misplaced letter
    - Example: DLORW scored as 2 points
4. Recall 3 Recite the three objects memorized in number 2 (Registration)
5. Language 9
  • Patient names two objects when they are displayed
    - Example: pencil and watch (1 point each)
  • Repeat a sentence: “No ifs, ands, or buts”
  • Follow three-stage command:
    - Take a paper in your right hand
    - Fold it in half
    - Put it on the floor
  • Read and obey the following:
    - Close your eyes
    - Write a sentence
    - Copy the design (picture of two overlapped pentagons)
LABORATORY FINDINGS

Laboratory tests are performed to rule out other conditions that may cause or mimic the symptoms of AD. The American Academy of Neurology recommends measurement of vitamin B12 and thyroid function screening. Other laboratory studies are left up to the physician and tailored to the particular needs of each patient.

Lumbar puncture (LP) in select cases may be obtained to rule out certain disorders, but is not yet recommended for diagnosing AD except in research settings. LP reveals biomarkers for Alzheimer’s disease with a 90% diagnostic sensitivity. These biomarkers include low beta-amyloid 1-42, high total tau protein, and elevated phosphorylated tau.

The routine measurement of CSF tau and amyloid is not recommended as yet except in research settings. This may become part of the diagnostic workup when effective therapies to slow AD progression are developed (Geert et al., 2010).

IMAGING STUDIES

Magnetic resonance imaging (MRI) is a preferred and integral part of the clinical assessment of persons with suspected Alzheimer’s disease in order to rule out potentially treatable causes of progressive cognitive decline. While structural MRI detects cortical and/or cerebral atrophy in AD, this is not necessarily diagnostic of AD (Ramachandran, 2012).

The combined use of conventional imaging, such as MRI or fluorodeoxyglucose PET (FDG-PET) scanning, with selected CSF biomarkers can incrementally contribute to the early and specific diagnosis of Alzheimer disease.

Positron emission tomography (PET) and single photon emission computed tomography (SPECT) scanning allow scientists to visualize brain activity during cognitive operations such as memorizing, recalling, speaking, reading, and learning. Researchers at the University of Pittsburgh developed a new agent to be used with PET scans that binds to the abnormal amyloid plaque in the brain. Called Pittsburgh compound B (PiB), this agent highlights actual pathologic changes in the brain as early as 10 years before serious memory loss occurs. SPECT or PET are most useful in diagnosing atypical cases but are not recommended for routine workup for those with typical presentations of AD.

CT scans do not usually contribute to the recognition or diagnosis of AD, but the presence of enlarged ventricles in the brain may help to distinguish AD from other dementias.

ImageImage

A PET scan of a normal brain (left) and a brain of a person with advanced AD (right). Note the decreased brain activity (indicated by loss of orange, yellow, and green colors). (Source: Alzheimer’s Disease Education and Referral Center.)

FUNCTIONAL ASSESSMENT

As AD progresses, periodic assessment of the person’s ability to function should be carried out. Researchers at Duke University developed the Functional Dementia Scale shown below to help caregivers monitor functional abilities and plan appropriate interventions.

FUNCTIONAL DEMENTIA SCALE
Source: Moore, 1983.
Rating
1 = None or little of the time
2 = Some of the time
3 = Good part of the time
4 = Most or all of the time
Task
1    2    3    4 Has difficulty completing simple tasks on own (e.g., dressing, bathing, doing arithmetic)
1    2    3    4 Spends time either sitting or in apparently purposeless activity
1    2    3    4 Wanders at night or needs to be restrained to prevent wandering
1    2    3    4 Hears things that are not there
1    2    3    4 Requires supervision or assistance in eating
1    2    3    4 Loses things
1    2    3    4 Appearance is disorderly if left to own devices
1    2    3    4 Moans
1    2    3    4 Cannot control bowel function
1    2    3    4 Threatens to harm others
1    2    3    4 Cannot control bladder function
1    2    3    4 Needs to be watched so doesn’t injure self (e.g., careless smoking, leaving the stove on, falling)
1    2    3    4 Destructive of materials around self (e.g., breaks furniture, throws food trays, tears up magazines)
1    2    3    4 Shouts or yells
1    2    3    4 Accuses others of doing self bodily harm or stealing possessions (when it is known the accusations are not true)
1    2    3    4 Is unaware of limitations imposed by illness
1    2    3    4 Becomes confused and is not oriented to place
1    2    3    4 Has trouble remembering
1    2    3    4 Has sudden changes of mood (e.g., gets upset, angry, or cries easily)
1    2    3    4 If left alone, wanders aimlessly during the day or needs to be restrained to prevent wandering

MEDICAL AND PHARMACOLOGIC MANAGEMENT

In order to allow AD patients to maintain the highest levels of cognitive and functional abilities, it is important to diagnose the disease early and begin treatment early. In the early stage of AD, cholinesterase inhibitors and mental exercises are recommended to try to prevent and delay the progression of AD. While mental exercises help prevent the onset of dementia, however, further studies are needed to determine the true benefits of mental exercise once cognitive impairment has already begun to appear (Wilson et al., 2010).

Drug Treatment

Currently, there are four drugs available that have been approved by the U.S. Food and Drug Administration (FDA) for treatment of mild to moderate AD. These include:

  • Tacrine (Cognex)
  • Donepezil (Aricept, Aricept ODT)
  • Rivastigmine (Exelon, Exelon Patch)
  • Galantamine (Razadyne, Razadyne ER)

All of these drugs interfere with the action of acetylcholinesterase, an enzyme that normally breaks down the neurotransmitter acetylcholine. Tacrine, the first drug approved for AD, has been largely replaced by the other cholinesterase inhibitors because the risk of liver damage outweighed the minimal benefit of improved cognition.

For moderate to severe AD, memantine (Namenda, Namenda XR) has been approved by the FDA. Used in combination with cholinesterase inhibitors, this drug has been shown to significantly delay institutionalization in AD patients. Memantine is a neuropeptide modifying agent that blocks certain receptors in the brain and slows calcium accumulation, thereby preventing further nerve damage.

Treatment with memantine also resulted in statistically significant but not clinically important cognitive improvement in patients with mild to moderate AD. The side effects profile is similar to that of the cholinesterase inhibitors (nausea, dizziness, diarrhea), but memantine also caused agitation in some patients.

All of the FDA approved drugs may slow the progression of AD for a few months or even a few years, but they are not a cure. They may help some patients with activities of daily living (ADL) and with behavioral symptoms such as delusions and agitation, and may even improve memory and speaking skills. However, physicians need to be realistic in explaining to the patient and the family the limitations of drug therapy.

Some of the side effects of Alzheimer’s drugs, such as nausea, vomiting, and diarrhea, may resolve within a few weeks. If they do not resolve, or if no significant improvement is seen with three months of drug therapy, the medication should be discontinued. Each patient responds differently to drug therapy. Thus, if one drug fails to elicit a response, another may.

Managing Coexisting Health Problems

Medical management of the AD patient requires monitoring of comorbid medical conditions and the secondary symptoms of AD, which can include depression, agitation, aggression, hallucinations, delusions, and sleep disorders. Behavioral symptoms are common and can exacerbate cognitive and functional impairment. The following classes of psychotropic medications have been used to treat these secondary symptoms:

  • Antidepressants
  • Anxiolytics
  • Anti-Parkinsonian agents
  • Beta-blockers
  • Antiepileptic drugs (for their effects on behavior)
  • Neuroleptics

People with AD often have other health problems common to older adults, such as impaired hearing and vision, dental problems, hypertension, congestive heart failure, diabetes, hypothyroidism, genitourinary conditions, and arthritis. Any of these conditions, alone or in combination, can further diminish the patient’s ability to function in the world.

For example, people who do not see or hear well may be easily confused in unfamiliar situations. Couple those limitations with AD, and the confusion intensifies. Recognition and treatment of any and all coexisting conditions can help improve the patient’s ability to function and quality of life.

In addition, medical management should provide support and resources for patient and caregiver(s), discussion of advance directives, and compliance with state-mandated reporting requirements for driving impairment and elder abuse.

IMPAIRED VISION AND HEARING

Impaired vision is not uncommon among institutionalized older adults. It can diminish quality of life and sometimes lead to depression. Basic eye care services to detect and correct impaired vision can improve quality of life and increase a patient’s participation in activities, hobbies, and social interaction. Because people with AD may be unable to communicate about their visual impairment, it may go undetected.

Deterioration in a patient’s hearing may interfere with his conversational ability. Questions may be misinterpreted and answers may be inappropriate. Hearing impairment can also contribute to errors in judgment. If a person experiences buzzing in his ears because of excessive wax or other diseases, he may be under the impression that someone is talking to him. Some improvement may occur with hearing aids, and an ear exam should be done to assess for excessive cerumen in the external canal.

DEPRESSION

Many older adults suffer from depression, and patients with AD are no exception. Unless treated, depression can further impair function. Antidepressants with limited anticholinergic side effects have been shown to be effective in treating depression in patients with dementia. Depressed patients with AD will also benefit from regular exercise. Effective treatment of the patient’s depression has a secondary benefit of reducing caregiver stress.

CARING FOR THE PERSON WITH AD

The patient with AD poses a number of challenges to the planning of care. Patient participation should be encouraged, but expectations should be aligned to the patient’s abilities. Goals should be planned without expectation of dramatic improvement.

Whether the patient is at home or in an institution, the goals are the same: to maximize the person’s functional abilities and quality of life and to provide competent, compassionate care that acknowledges and respects the patient and family. Ideally, that care would be multidisciplinary, including medicine, nursing, social work, occupational therapy, and physical therapy.

The challenges of caring for someone with AD include communicating effectively with the person; assisting with ADLs while helping maintain the person’s independence; planning activities that will help maintain well-being and prevent boredom; and managing behavior problems such as agitation, wandering, and sleep disturbance. Meeting these challenges may become more difficult as the disease progresses.

Creating a Supportive Environment

Fundamental to all care of the person with AD is the creation of a supportive environment. The following are ways in which caregivers can do so (Wolanin & Phillips, 1981).

Make change very slowly. Carefully prepare the person for any change in medications, nutrition, therapy, personnel, or location. Consistency in staff assignment has a calming effect on the patient. The patient should stay in the same room with the same roommate whenever possible.

Keep the person active as long as possible. Daily exercise, outdoors if possible, helps maintain physical and emotional function. Activities should be focused on making the patient more comfortable and should be designed to allow him to use existing skills to perform familiar tasks. Avoid complexity in activities, as this can create anxiety.

Maintain a routine. The person feels more secure when routines are established and followed closely.

Provide social stimulation without overload and encourage and maintain communication through every possible channel. Keep communications short and simple.

Avoid crowds and large spaces without boundaries. Try to prevent sensory overload and provide boundaries and interior landmarks that are easily visible. This can be done using contrasting colors to demarcate boundaries. Noise should be kept low and can be masked by the sound of music that was popular during the person’s youth. Older television shows can provide a familiar background and anchor her in a period she can remember.

Monitor nutrition, attention to mouth and teeth, and footwear. Help with eating and oral hygiene to reduce the risk of infection. Comfortable, well-fitting shoes with nonslip soles help prevent falls.

Provide positive input. Praise and compliments for any achievement help maintain the person’s self-esteem and encourage self-participation in activities of daily living.

Provide reality checkpoints: calendars with large days and dates, clocks with large numbers marking the hours, and reminders of special events such as birthdays, anniversaries, and holidays. Signage with figures illustrating the use of an area is helpful in orientation. The presence of personal items can help the person identify an unfamiliar room as his own.

Support bowel and bladder control. A consistent toileting routine helps preserve function and control. Use clothing with simple fasteners like Velcro or pants with elastic waistbands.

Assist with activities of daily living. The person frequently will have problems attending to basic hygiene and daily life activities. Drinking, eating, bathing, or dressing may require careful attention in order to avoid infections and eventual progression to a generally debilitated state.

Attend to the person’s appearance. Keep the person clean and free from odors, dress him in his own clothes, and keep him well groomed. This is an aspect of care that is noticed by family members.

Closely attend to emerging symptoms and identify a patient’s problems before they become unmanageable. Keep in mind that the patient is often unable to describe routine physical symptoms, even pain.

Support family caregivers. Commend their efforts, refer them to support groups, and assist them in creating a helping network. Families caring for a loved one at home need referrals to agencies offering respite care.

Provide information and referrals for legal assistance. Advance directives for end-of-life care should be made at the time of diagnosis, while the person with Alzheimer’s can still have a voice in the decisions made.

Communication Issues

Communicating with the person who has AD begins with patience, respect, and understanding. Remember that the person is not deliberately being difficult. Following are ways to communicate more effectively with someone with Alzheimer’s:

  • Make sure the person has his/her glasses and hearing aid
  • Reduce background noise and distractions
  • Use positive body language: relax, lean forward, and smile
  • Touch the person gently and reassure him or her
  • Speak clearly and slowly
  • Don’t offer too many choices
  • Pause often and get feedback; ask, “Is that okay?”
  • Repeat your message as often as necessary
  • Distract the person if he or she becomes anxious or agitated
  • Face the person, make eye contact, and speak directly in a calm, even tone
  • Keep sentences simple; focus on one idea at a time
  • Minimize questions, because they may make the person feel anxious or threatened
  • If the person doesn’t understand, offer nonverbal cues, such as pointing, demonstrating the desired action (eating, drinking), or nodding
  • Even though someone is unable to speak, they may still understand, so do not talk to others about the person as if they were not present

Nonverbal communication, especially touch, between caregiver and those with AD is also important. Remembered that permission should be sought before touching. Those who may be unable to respond verbally will respond to a smile, kind gesture, and caring touch. Or, for example, some patients may need reminders during a meal to begin or continue eating by placing the spoon in their hand.

Careful observation of the person ’s facial expressions, eye contact or lack of eye contact, and body language can help the caregiver assess comfort or pain, anger, hostility, and misunderstanding. For example, increased motor activity and shaking fists suggest frustration or anger. Experience and patience over time helps caregivers gain skill interpreting these nonverbal signals.

Persons with AD may ask the same question repeatedly because they do not remember the answer given. Respond to the question, and then try to distract the patient with an activity or a change of topic or a change of scene. Activities or events should not be discussed with the person until they are about to happen; otherwise, the person may retain the idea that something is going to happen but forget the details, triggering more questions.

Activities of Daily Living (ADL)

During the early Alzheimer’s disease, a person will begin to demonstrate a lack of attention to personal hygiene and grooming. They soon forget to bathe, change clothes, or use the bathroom. To persons with AD, the tasks of daily living can be frustrating and overwhelming.

HABIT MEMORY

Habit memory outlives all other types of memory in AD because it is stored in an area of the brain unaffected until the late stage. One woman recalled her mother’s deterioration from AD: “She finally quit smoking because she forgot to smoke, but she would pat her breast pocket (where she carried her cigarettes) and then go through the motions of smoking, holding up two fingers, putting them to her mouth, inhaling, and then blowing out, but without any cigarette.” Habit memory enables patients in the early and mid-stages of AD to remain physically able to manage ADL, but they may need reminders about hygiene and grooming.

Activities of daily living are actually quite complicated when broken down into steps. Brushing one’s teeth, for example, requires recognition of the equipment used (toothbrush, toothpaste, sink) and remembering how to use each piece of equipment. In addition, the person must remember to find the equipment, put the toothpaste on the toothbrush, brush his teeth, and rinse his mouth.

Task breakdown is useful to assist persons with AD to function on their own. Verbal coaxing allows the person to perform the activity, and when they complete tasks, the ability will be retained longer. Providing cues such as labeling, placing equipment and clothes out in view, and offering demonstrations are all useful.

Establishing and maintaining a routine in ADL helps the patient retain learned habits longer and therefore need less assistance. Once the routine becomes automatic, the patient no longer needs to stop and think what to do next. A fixed routine for eating and toileting also reduces the incidence of incontinence.

BATHING AND DRESSING

Bathing can be a challenge because patients with AD may be frightened by showers. If it is not possible to offer a bath instead, using a shower bench with a hand-held shower may be less threatening. The bathroom should be prepared in advance, with water at the correct temperature.

Inappropriate dressing may be one of the problems faced by caregivers. The person may no longer be able to coordinate colors, may put a shirt on backward, or may fasten buttons in the wrong order. Often persons will put on many layers of clothes or may want to remove clothing at inappropriate times. Labeling closet and dresser drawers may help the person locate certain clothing.

Dressing can be simplified by offering one or two choices, or just laying out the garments to be worn. If the patient wants to wear the same clothes every day, make duplicates available so that favorite clothes can be laundered. Many older persons, with or without AD, feel embarrassed when completely undressed, so removing and replacing one article of clothing at a time may work better.

As AD progresses, the person may no longer be able to manipulate small buttons, hooks, or zippers. Adapting clothing with large zippers or Velcro closures make dressing easier. Pull-on skirts and pants are also easier for the person to use.

TOILETING

Caregivers need to understand that the person with AD may no longer respond to signals such as the urge to void or defecate. It is helpful to remind the person to use the bathroom frequently to empty his bladder. Setting up a regular schedule for toileting has proven effective in avoiding accidents. It is important to know that the person may forget where the bathroom is, or may not recognize the toilet as the appropriate place to urinate. In this instance, the person will need to be taken by the hand and led to the bathroom, where cues can be provided to use the toilet.

Problems with bowel function usually do not arise until later in the disease. Constipation and fecal impaction can cause a great deal of discomfort and can lead to unwanted behavioral problems. It is extremely important for caregivers to continually assess and monitor the person’s bowel function.

EATING

Eating habits and behaviors change during the course of AD and may be caused by physiologic or psychological factors. In early-stage AD, depression related to the diagnosis may result in anorexia and weight loss. Patients may forget to eat or refuse to eat. Confusion and agitation may lead to extreme eating behaviors such as gorging. Physiologic factors affecting eating behaviors may include dental problems such as uncomfortable dentures, missing teeth, and/or periodontal (gum) disease. Neurofibrillary tangles and plaques can affect the function of the hypothalamus, which regulates appetite and hunger signals. Many persons with AD lose their sense of smell, which affects taste and appetite. Some medications can also affect appetite.

In addition to depression, other psychologic factors that affect eating behaviors include new and unfamiliar environments, which create confusion and agitation; distractions such as loud noises; unappealing food; and unusual odors such as urine. Such factors are quite variable, as individuals progress through the stages of the illness at their own pace and in their own physiologic manner.

CASE

Mr. Florio would often come to the nursing home on Sundays to take his wife out to lunch at a local restaurant. He observed that sometimes his wife would eat everything on her plate but at other times she would not eat anything at all.

A search was begun for an explanation, and Mr. Florio noted that when his wife faced the wall of the restaurant, she cleaned her plate, and when she faced the staff, other customers, or the cash register, she failed to eat at all. It then became clear that the distractions offered by the busy restaurant produced her failure to eat.

DRIVING

Safe driving requires mental alertness, quick reflexes, and good judgment, all of which are eroded by AD, often before the patient or the family is aware of the problem.

Once the diagnosis of AD is established, the physician needs to encourage the patient to stop driving. Some patients do this willingly; others are reluctant to give up the independence that driving represents, thereby creating a significant threat to personal and public safety. This may pose a dilemma for caregivers, however it is generally accepted that those who refuse to quit driving even though they pose a hazard must be prevented from driving by other means, such as hiding the car keys or disabling the car.

Many states encourage physicians and other health professionals to report people with conditions that may affect their ability to drive safely. For instance, California has a public policy specifically requiring the reporting of individuals who have Alzheimer’s disease. In Florida, any physician, person, or agency knowing of a licensed driver’s (or applicant’s) mental or physical disability to drive is authorized to report this to the Department of Highway Safety and Motor Vehicles.

Maintaining Nutritional Well-Being

Weight loss is common among persons with AD, regardless of quality of care. Wandering, restlessness, and agitation expend energy and interfere with food intake. In mid- and late-stage AD, persons are unable to feed themselves or to chew and swallow the food when it’s placed in their mouths.

Those who are unable to swallow properly can become dehydrated and can aspirate food, leading to aspiration pneumonia. In the later stage of the illness, there is a profound memory loss that interferes with the recognition of food, the need to eat, and the mechanics of eating. In addition, the person may become resistant to being fed.

It is essential to maintain the nutritional well-being of the patient with AD. Monitoring the patient’s nutritional status for weight loss and possible nutritional deficiencies should include:

  • Oral assessment to check for denture problems, missing teeth, and gum problems, with referral for any treatment needed
  • Review of medications to check for drugs, such as Digoxin, that may affect appetite
  • Assessment for vision problems that could cause confusion at mealtime
  • Assessment for depression

The following steps can support the nutritional well-being of dementia patients.

  • Simplify eating. Use bowls rather than plates and regular eating utensils rather than plastic utensils that may break in the patient’s mouth. Serve finger food such as fried chicken, French fries, cheese, small sandwiches, and fresh fruits.
  • Assess the person’s ability to successfully chew food. Remind them to chew and show them how. Serve soft, chopped foods: scrambled eggs, cottage cheese, Jell-O, mashed potatoes, applesauce. Moisten meat or fish with sauces or gravy. Offer small bites, one at a time.
  • Assess the person’s ability to swallow food. Remind them to swallow with each bite and show them how. Gently stroke the throat to promote swallowing. Avoid foods that are hard to chew and/or swallow, such as sticky foods, popcorn, nuts, and raw vegetables. Serve liquids at room temperature. Thicker liquids such as fruit nectars, milk shakes, and eggnogs are easier to swallow and less likely to cause choking. It may be necessary to use thickening agents in liquids in order to avoid aspiration.

Providing Physical and Social Activities

Physical activity and social and cognitive stimulation can help maintain general well-being and prevent boredom and agitation in people with AD—especially in the early stage of the disease.

Persons with AD are capable of performing a variety of activities that fulfill their need to be active. These activities include exercise and other gross motor activities, grooming, socialization, meal preparation, housework, crafts, light work, and special events.

Exercise can be utilized to avoid restlessness or agitation that a surplus of physical energy can cause. Walking in safe areas helps people sleep better at night. Someone who enjoyed dancing may still find pleasure in that activity.

Those living at home can help with household tasks appropriate to their abilities and interests. For example, a woman who is no longer able to cook a meal may be able to peel the potatoes, shell the peas, or set the table. Gardening or other hobbies, arts and crafts, or pets can all be enjoyable sources of stimulation.

Activities should be tailored to the individual’s personality. Shy, introverted people should not be required to participate in group activities, whereas more outgoing individuals may be happiest in a group. Those who enjoy music, either as listeners or performers, can find pleasure in listening to the radio or to recorded music. Group sing-a-longs may awaken pleasant memories of familiar songs.

People with AD who formerly liked to read may still like to leaf through magazines or books, especially those with interesting pictures. Television can be entertaining for some; for others, it can be frustrating and upsetting when they are no longer able to understand the story.

Simple games can provide enjoyment for people with AD, such as beanbag toss or other games with an obvious objective. Although the person with AD may regress to the level of a child, he or she should not be treated as a child. It is important to keep developmental level in mind when planning recreational activities.

Responding to Elder Abuse

Abuse of older adults is a well-kept secret in America. According to the National Administration on Aging, hundreds of thousands of elders are abused, neglected, and exploited by family members and others. Many cases go unreported. Abuse may be physical, verbal/psychological, financial, sexual, or neglect. People with Alzheimer’s disease or other cognitive impairment are at higher risk than other older adults. Most known perpetrators of abuse and neglect are family members, usually an adult child or a spouse.

The overwhelming majority of victims of elder abuse are women. The profile of a typical elder abuse victim is a disabled woman, older than 75, living with a relative and who is physically, socially, or financially dependent on others (Eliopolous, 2010).

Abused persons have considerable problems accepting the fact that someone they reared and nurtured is now abusing them. Many barriers exist that prevent elderly persons from asking for help. They may fear retaliation from the abuser. They may feel shame, guilt, and failure and may blame themselves for the abuse. Many stay in the situation for fear of the unknown. If they are institutionalized, they may fear that care will be withheld. In other situations, the abused elder may have grown up in an abusive environment and consider abuse to be normal behavior.

RECOGNIZING ELDER ABUSE

Abused elderly persons are likely to have special problems, such as incontinence, shouting, wandering, or symptoms of paranoid delusions. Some traits prevalent among elders might be stubbornness, hypercritical attitudes, and somatization. These may represent attempts by the person to deal with a new dependency role and can be irritating to caregivers, thus prompting abuse.

Signs of abuse include bruises in different stages of healing, fractures that have not been properly set, and lack of explanation for falls and injuries. Rope burns, which are commonly found around the wrist or ankles, can arise from the use of crude restraints. Other skin wounds may include cigarette burns, human bites, and lacerations. Welts may indicate use of belts or other objects for punishment. Food and fluid deprivation that result in malnutrition and dehydration are more subtle forms of elder abuse. Physical signs of neglect include severe weight loss, dehydration, poor personal hygiene, and pressure ulcers (bedsores).

Signs of emotional or psychological abuse can include sleep problems, anxiety, being kept isolated from others, or avoidance of the caregiver/abuser to touch or comfort the person. No single indicator can be taken as conclusive proof, but patterns or clusters of indicators can suggest a problem that should be investigated.

CAREGIVERS AND ELDER ABUSE

Caring for a person with AD can lead to stress, depression, feelings of isolation, financial worries, and substance abuse, any or all of which can lead to elder abuse. Violent behavior by the patient may also lead to physical abuse by the caregiver.

Respite care for the patient and support group and counseling for the caregiver can help to prevent elder abuse. In severe cases of abuse, it is usually necessary to separate the patient from the caregiver, initiate legal action, and find a safe facility for the patient.

CASE

Mr. Moustaffa, a 72-year-old widower who lives alone, was being seen in the dementia assessment unit after referrals by a concerned neighbor. The patient was found to be suffering from early dementia, but much of his conversation made perfect sense. He repeatedly reported that his children “are ripping me off.” Per agency protocol, the unit social worker visited Mr. Moustaffa in his home to further assess his living situation.

During her visit, she found that the Mr. Moustaffa had written several checks for groceries in the past month, some amounting to $200, but there was no food in the house. She learned that since Mr. Moustaffa was no longer able to drive, his son and daughter-in-law now did all the shopping for him and that they gave him only a fraction of the groceries he was paying for and used the rest themselves. This information was used to assist in approaching the son and daughter-in-law with the concern of elder financial abuse.

BEHAVIOR MANAGEMENT

Behavioral symptoms of Alzheimer’s disease include agitation and restlessness, vocal outbursts, wandering, sleep disturbances, “sundowning,” and asocial sexual activities. Although medications are available to treat these disorders—antidepressants, antipsychotic drugs, and sedatives—all have side effects and may interact with other medications, and most show limited efficacy.

Difficult behaviors usually are time-limited, and as the disease progresses, they often disappear. When they arise, however, they demand special attention.

Managing difficult behaviors effectively calls for special intervention training and education for staff and caregivers. Such training can help providers identify and anticipate problem behaviors and learn diversionary strategies to manage these behaviors. Gaining competence consequently builds confidence in caregivers and enhances the quality of life for people with AD. Inadequate training can result in overmedication of a patient, inappropriate use of restraints, physically combative behavior, or isolation of the patient. Healthcare providers and caregivers may also suffer stress and burnout.

Behavioral problems are major reasons why family caregivers decide to seek long-term care for their loved one. Staff can gain valuable insights from the family into the person’s behavioral history, which will aid in planning effective interventions. Together with psychological and medical evaluations, this behavioral history can alert staff to important triggers for behavioral problems.

APPROACHING DIFFICULT BEHAVIORS

The problem-solving approach to difficult behaviors requires a clear definition of the problem and the identification of precipitating and aggravating factors. This approach may lead to specific interventions for change.

Determining what triggers and reinforces a person’s problem behavior involves discovering antecedents, describing the behavior, and determining what reinforcing consequences there are for it. What happens just before a behavior is an antecedent of the behavior. Every behavior—positive or negative—is triggered by something. If the behavior continues or gets stronger, something that comes after the behavior—that is, some consequence of the behavior—is reinforcing it.

It’s important to recognize that no behavior is triggered and reinforced only by internal factors or only by external factors. Caregivers can have a direct, immediate effect on many external influences, thereby influencing external triggering antecedents and reinforcing consequences of a person’s problem behavior. By doing this, they can help reduce or even eliminate a problem behavior.

Agitation and Restlessness

Agitation is a state of extreme irritability often characterized by hitting, pacing, yelling, or restiveness. This can be caused by medications, physical discomfort, anxiety, fatigue, sleep loss, insecurity, sensory overload, sensory deprivation, or sensory distortions. Agitation may also result from impatience or irritability on the part of the caregiver.

An agitated person requires an assessment of any physical cause of discomfort or pain. This can include fecal impaction, localized or systemic infection, dehydration, urinary retention, osteoarthritis, or fractures. The person may be hungry or thirsty or may be suffering from inadequate sleep. The environment should be assessed for the presence of any irritants and level of sensory stimulation. Observe the person while performing activities of daily living to identify contributing factors. Assess caregivers’ stress levels and provide teaching about how their own emotional state affects their patients or loved ones.

Speaking softly and calmly, the caregiver can gently and quietly take control of the situation. Ask the person with AD if he or she needs to use the bathroom. If not, try to determine what the person needs: an extra blanket, a drink of water, food, or a warm hug.

Another approach to the problem of agitation is the three Rs: repeat, reassure, and redirect. Using this approach, the caregiver repeats an instruction or answer to a question, reassures, and redirects the person to a different activity to divert attention from the problem.

Aggression and Combativeness

Aggression in the AD patient is relatively rare. It can be an isolated event, or it may occur regularly in some individuals. Aggression may reflect long-standing personality traits, or it may be totally out of character for the person. Aggression may be an extension of the sort of agitated behavior described above, which has not been adequately addressed and has been allowed to escalate. For instance, physical aggression may result when persons are no longer able to express frustrations verbally.

Aggressive persons should be approached in a calm, gentle manner. All activities should be explained. Avoid situations known to provoke combative episodes. Distraction can be effective in breaking the cycle of escalating aggression. The environment should be assessed for harmful objects and they should be removed. Medications may be used to interrupt escalation.

CASE

Mr. Hopkins is a 72-year-old who was admitted to the nursing home 3 months ago because of his family’s inability to care for him at home any longer. He had been diagnosed with Alzheimer’s 6 years earlier. Each Sunday he became quite happy during visits from his family, but each time the family got ready to leave, Mr. Hopkins would become more agitated, follow them to the door, and attempt to leave with them. When staff tried to lead him back inside, he would become belligerent and combative. This behavior often resulted in his receiving a medication PRN, which made him drowsy. At one point, a staff member was injured when she fell while trying to avoid Mr. Hopkins’ attempt to strike her.

Staff and family discussed his behavior and determined that Mr. Hopkins’ agitation may be due to feelings of abandonment. They devised a care plan in which the family would inform the staff 15 minutes before their intended time of departure from visits. The family planned to leave a small memento with Mr. Hopkins at each visit, and a staff member would then begin discussing the memento with him, encouraging some reminiscing. The family would say a quiet good-bye, and Mr. Hopkins would not be allowed to walk them to the door. The staff member would remain with him in his room for approximately 10 minutes after their departure.

This intervention appeared to distract Mr. H. from his feelings of abandonment without changing the nature of family visits. There were no further incidents of combative behavior.

Catastrophic Reactions

Catastrophic reactions are disproportionate responses to seemingly insignificant stimuli. These responses may be uncontrollable crying, extreme agitation, screaming, or combativeness. These reactions occur in response to the person’s inability to handle a multitude of incoming stimuli. The patient has decreased capacity to control emotional responses.

Prevention should be part of the care plan for any patient prone to such behavior. Avoid situations and circumstances known to trigger these reactions. Simplify the environment and tasks demanded of the person. Distraction is most useful if the reaction is already in progress. Involvement in music- or food-related activities is often successful. It is important not to overreact to the patient, as this will only increase the possibility of escalation of the response.

Vocal Outbursts

Disruptive vocal outbursts—screaming, swearing, crying, shouting, negative comments to staff and/or other patients, self-talk—become increasingly common as AD progresses, confusion increases, and the ability to communicate is lost. Men generally display more aggressive vocalizations, such as swearing, while women typically exhibit more agitated vocalizations, such as crying or complaining. Until these behaviors diminish in the final stages of the disease, they present an ongoing challenge to caregivers.

Staff needs to remember that the person is not deliberately misbehaving; these are not temper tantrums. Staff should not take remarks or attacks personally, nor should they try to reason with the person. Instead of focusing on the problem, staff needs to acknowledge that the dementia is causing the problems.

Experienced staff often can anticipate outbursts and intervene to prevent them. Signs of an impending outburst vary from person to person, but such events are often preceded by restlessness, refusals, and blushing. Emotional triggers can include fear, anger, depression, grief, confusion, helplessness, loneliness, sadness, impatience, and frustration. Environmental factors such as poor lighting, seasonal changes, over-stimulation or lack of stimulation, loud noises, or excessive heat, can also trigger outbursts.

Outbursts may also signal physical illness or discomfort, including pain, hunger, thirst, incontinence, constipation, infection, or fatigue. Once the outburst has subsided, a thorough physical assessment may reveal the underlying physical problem, which can then be remedied.

Managing outbursts triggered by environmental or physical factors is simpler than dealing with outbursts that stem from an unknown emotional or psychological cause. With training and experience, however, staff can better manage and even prevent vocal outbursts. Interventions begin with taking the patient to a quiet room or taking a walk. Distractions can involve:

  • Prompting the person to reminisce
  • Engaging the person in group activities such as games, singing, or listening to music
  • Carefully using touch, massage, hugging, or holding hands
  • Giving the person something to hold such as a soft doll or a stuffed animal
  • Showing movies or interactive videos such as sing-alongs
  • Using headphones to listen to soothing sounds such as mountain brooks or the ocean
  • Playing audiotapes of the spouse or other family members recalling happy times together

The techniques listed above are most effective as prevention measures. Once an outburst occurs, distraction is necessary to disconnect the patient from the problem. Otherwise, there is a risk of reinforcing inappropriate behaviors, which may result in more frequent outbursts.

CASE

Mrs. Goh is a 78-year-old woman with AD who has been living in a nursing home for the past 4 years. She is known to have had a stroke resulting in expressive aphasia early in the disease process. Mr. Goh visits his wife daily at mealtimes and feeds her. He also reads to her while holding her hand until she falls asleep.

On his way to visit one day, Mr. Goh was involved in an accident and sustained a hip fracture. He was in the hospital for 3 weeks and then sent to a rehabilitation unit for therapy. When Mrs. Goh was told about her husband’s accident, her condition began to decline. She is now bedridden and is not involved with any activities of daily living. She has also begun yelling and screaming for extended periods of time. This behavior has become very disruptive to everyone. When her condition worsened, Mrs. Goh was moved to a semiprivate room in the front of the building. Her yelling is now audible to anyone entering the building.

The treatment team met to devise a plan of care. Their first step was a thorough assessment, with the following conclusions:

  • Mrs. Goh’s current method of communication is screaming.
  • She is reacting to the loss of her husband’s visits and other physical and social losses.
  • She has discovered that screaming brings attention.
  • By screaming she is able to exert some control over her life.
  • The screaming occurs in the late afternoon, when she needs to use the toilet, or when she is overly fatigued.
  • Previous tactics to control Mrs. Goh’s screaming have been ineffective.

After completing the assessment, the following plan was developed and implemented:

  • No more changes are to be made in Mrs. Goh’s environment.
  • Routines are to be established with Mrs. Goh’s input, and the same staff will provide her care on a daily basis to establish consistency in her life.
  • The activities director will work with Mrs. Goh to add new activities to her daily life.
  • Arrangements are to be made for consistent volunteers to visit Mrs. Goh on a daily basis, attempting to establish a routine similar to her husband’s.
  • Mrs. Goh will be given a bell to ring if she needs something. Otherwise, she will be checked on every 2 hours.
  • Staff will be instructed to respond quickly to the bell, but not to her screaming.

After two months, Mrs. Goh is using the bell to call for assistance. She yells out occasionally, but this tends to occur when unavoidable changes are made in her routines.

Wandering

Wandering is a major behavior problem in persons with AD, more so than in persons with other types of dementias. For that reason, all persons diagnosed with AD should be registered in the Alzheimer’s Association “MedicAlert + Safe Return” program, which is a nationwide emergency response service for individuals with Alzheimer’s or a related dementia. Registration includes an identification bracelet that should be worn at all times. (See “Resources” at the end of this course.)

Agitation, restlessness, and sleep disturbances all lead to wandering, particularly at night, increasing the risk of injury to the patient and others. Wandering is generally one of two types: goal-directed, in which the patient attempts to reach an impossible goal such as going home or going to the store; and non-goal-directed, in which the patient wanders aimlessly. Wandering patterns include:

  • Moving to a specific location
  • Lapping or circling along a path or track
  • Pacing back and forth
  • Wandering at random

Confusion and failing memory can lead to wandering because the patient is unable to keep a clear destination in mind. Wandering may also represent a search for social interaction when the patient can no longer communicate verbally. Unable to sleep, the patient walks to keep busy or to find a loved one. Wandering in the late afternoon or early evening may be triggered by a fading memory of leaving work to go home.

Wandering may also be caused by a physical need, such as toileting. Staff can use large-print signs to mark destinations with a drawing of the activity. Placing a photo of the person as a younger adult on the room door may help a wanderer find “home.”

Wanderers are more likely to have delusions, hallucinations, and severe depression. Long-term use of neuroleptics, such as haloperidol (Haldol), chlorpromazine (Thorazine), or thioridazine (Mellaril), can induce aimless wandering. Men are more likely to wander than women, and wandering often increases as AD progresses.

Doors leading to the outside in the home or residential facility should be kept locked. Often, simply changing to a new type of lock that the person is not familiar with can solve the problem. If this step does not work, deadbolt locks requiring keys should be installed. Regular door handles can be replaced with child-proof models that require a combination of actions to turn the handle. It is important to recognize that one of the dangers of this approach is fire. Information and specific suggestions can be obtained from the local fire marshal.

To prevent wandering outside the facility, staff can conceal or camouflage doors by:

  • Placing a Velcro cloth strip or panel across doors
  • Painting doorknobs the same color as doors
  • Installing grid patterns on floors in front of doors

Safety locks, alarm systems, and personal monitoring devices can also help control persistent wanderers. Staff should use the least-restrictive methods possible to reduce, redirect, or prevent wandering. Interventions for goal-directed wandering involve distracting the person. A calm, gentle, and respectful approach helps to establish trust.

The family can help staff identify and anticipate wandering in the newly admitted resident. Staff needs to learn as much as possible about the resident’s lifestyle prior to diagnosis with AD: what kind of work the person did, previous patterns of exercise, stress, and response to touch. Once a wanderer is identified, the facility can have photographs made and distributed to other units and assign special clothing or identification bands.

To prevent a person who seems at risk of wandering, approach the person from the front and use simple commands to change direction, if necessary, and guide the wanderer away from the exit. Diversions such as listening to music, looking at pictures, or exercising may be effective. Staff should avoid negative or harsh commands such as “Don’t go out there!” and should not argue with the person.

Wandering in a safe area can be good exercise for the person with AD and helps manage non-goal-directed wandering. Many facilities are designed with these safe areas in the form of sheltered courts, gardens, lounges, or pathways.

Sleep Disturbances and “Sundowning”

Persons with AD often have disturbed sleep patterns due to medications, sleep apnea, and disruption in their biorhythms. Some persons are awake during the nighttime hours and sleep during the day. Others sleep fitfully for very brief periods, giving the appearance of being constantly awake.

Exercise and physical activity, such as walking during the day, help persons sleep better at night. The activities should be as vigorous as possible within the limitations of each person. Those who are bedfast can still benefit from passive exercise.

Daytime napping can interfere with sleep at night. Napping may signal boredom or depression and the need for more stimulating daytime activity. Limiting fluid intake during the evening will reduce the need to urinate at night.

“Sundowning” refers to the phenomenon in which the person is more confused during the late afternoon and early hours. The person becomes more agitated, confused, and restless during these hours. This state may be caused by an alteration of the circadian rhythm.

CASE

Mrs. Pearlman is a 72-year-old widow who moved in with her daughter Jeanne about 6 months after being hospitalized with pneumonia. She was diagnosed with Alzheimer’s 8 years ago and is now in the second stage of the disease. Her level of confusion and disorientation increased when she entered the hospital and her condition has remained the same since then.

Jeanne has gone to a local Alzheimer’s support group since her mother has moved in with her, and she asked for help because her mother becomes “like another person after supper.” She says her mother does not recognize her, she is disruptive, and nothing seems to calm her down until she falls asleep. She is always much better in the morning.

The group asks questions to discover what can be done to help Jeanne with the problem of “sundowning.” They ask how a typical day goes, and Jeanne says her mother does not have an opportunity for a nap in the early afternoon, but she sleeps well at night. She says her mother is very hungry at suppertime, and since the time change in October, her behavior has become worse.

Together they devised some methods to help Jeanne deal with her mother’s behavior.

  • To avoid extreme fatigue, she has her mother take a one-hour nap at 1 p.m. and doesn’t allow her to sleep too long, as that could interfere with her sleep at night.
  • To help relieve her hunger and possible low glucose level, Jeanne gives her mother a high-carbohydrate snack at 4 p.m.
  • To maintain the same level of light in the house, Jeanne turns on all the lights 2 hours before sundown. She closes the curtains 1 hour before sundown so her mother might not notice the changing light level outside
  • Jeanne attempts to engage her mother in a quiet activity immediately after supper.

Two months later, Jeanne reports back to the support group that although her mother still had some increased confusion at nighttime, the frequency and degree of confusion and disruption had decreased significantly.

Repetitious Behaviors

Repetitious behaviors are those that occur on a continuous basis and generally serve no functional purpose. Mostly, these behaviors are tolerable, but they can become very annoying and may cause a great deal of frustration for caregivers. Examples of repetitious behaviors frequently encountered are questioning, following the caregiver, or performing one task over and over again.

Such behaviors are often the result of memory loss in the later stages of the disease. The person is unable to remember completing a task or receiving an answer to a question. Following a caregiver continually may be a sign of the person’s insecurity.

All behaviors have meaning. Repetitious activity often has a basis in the patient’s past, such as work. A man who picks up the chairs, places them upside down onto a table, and wiggles their legs may be demonstrating a behavior required in his work as a furniture maker or carpenter. A gentleman who worked in an office all his life may pace and exhibit restlessness. Simple measures such as dressing him in his suit and providing him with a small desk may prove to be a calming and reassuring activity.

Inappropriate Sexual Behaviors

Inappropriate sexual behaviors can be defined as being dysfunctional; serving no useful, healthy purpose; and not fitting within the setting or environment. These behaviors may include masturbation, undressing, and touching in public. Usually, however, behaviors of a sexual nature are seen as inappropriate because they bother or embarrass the caregiver.

Because of dementia, many persons lose the ability to determine whether the time, place, or way to express sexual needs is appropriate or not. These behaviors may be the only available mechanism for gratifying the person’s basic sexual needs.

It is important that families be encouraged to hold hands, touch, and kiss the person as they always have. Recognizing the person’s unmet needs is important in understanding abnormal behaviors. Providing a relaxing massage or going for a walk and holding the person’s hand provides therapeutic touch that so many institutionalized elderly people need.

Persons who masturbate in public places should be gently led from the public area to their room. Do not scold or try to get them to understand the inappropriateness of their behavior, as that will only increase their bad feelings and agitation.

Every attempt should be made to determine whether the person is suffering from pruritus, an infection, or a chronic stress condition. Assess behaviors for any antecedent causes such as a visit from the family. If persons have truly problematic sexual behaviors such as touching visitors or staff persons intimately following a family visit, for instance, visitation should take place in the person’s room, and once the family leaves, the person should immediately be involved in some activity.

Undressing in public may be due to physical factors such as being too warm or frustration about trying to remember how to dress and undress.

Because of the embarrassment and negative feelings about these behaviors, family members and caregivers must be given an opportunity to talk about their feelings.

CARING FOR THE CAREGIVERS

Seven out of 10 people with AD are cared for at home, and 60% to 70% of caregivers are women aged 55 or older who are married and have less than a college degree. Over half are primary breadwinners and nearly half are employed full or part time. Fifty percent live in the same household and 20% have children age 18 and under. Ethnically, 70% of caregivers are white, 15% African American, 12% Hispanic, 2% Asian-American, and 2% from other ethnic groups (Alzheimer’s Association, 2011).

The Effects on Caregivers

Caregivers are often referred to as hidden victims because they commonly experience more psychological and health problems than those who are not caregivers. It is common for families to experience denial, depression, anxiety, anger, and guilt before and after the diagnosis is made. They may have unrealistic expectations, such as the diagnosis being incorrect or that the patient can be cured. The caregivers may be confused because the patient’s condition may appear to improve at times before it worsens.

Family must come to terms with the realization that the person with AD has a terminal illness, that they will lose the relationship with the person as he was known, and that roles within the family will change.

Alzheimer’s disease exacts a heavy toll on the family, especially the primary caregiver, usually a spouse or a daughter. Even though the family member willingly assumes the role of caregiver, the physical and emotional energy required can exhaust the most devoted individual. If an adult daughter or son is the caregiver, he or she often joins the “sandwich generation,” caught between an elderly parent’s needs and the demands of career and family at home.

The time commitment required to care for a person with AD is daunting. An Alzheimer’s Association survey showed that caregivers who live with a relative with AD spend about 21.9 hours per week per caregiver or 1,139 hours per year valued at $11.93 per hour (Alzheimer’s Association, 2011).

As AD progresses, the physical energy required to care for the increasingly dependent family member may deplete the caregiver’s capacity. By mid-stage AD, the person needs help with bathing, dressing, and a host of other activities. According to the Alzheimer’s Association, 45% of caregivers report not getting enough sleep.

Hospitalization rates are high for caregivers who report physical and mental strains on their health. Physical demands include difficulties in feeding, inconsistency in the patient’s sleep patterns, coping with wandering behavior, and cleaning up the results of urinary and fecal incontinence. The mental strains reported most often are financial problems, lack of support, and no personal time.

The lives of the caregiver and the person with AD are inextricably linked in a long, painful dance toward death. When the caregiver’s quality of life suffers, it affects the quality of care for the person with AD. Without help and support from family, friends, health professionals, and community resources, caregivers are at great risk for:

  • Emotional distress, such as depression and anxiety
  • Fatigue and sleep deprivation
  • Social isolation, when relatives and friends stop calling or visiting
  • Family conflict
  • Substance abuse

Helping Family Caregivers

Just as education and training for staff can improve care and quality of life for patients, educational interventions for family members can make a positive difference in the caregivers’ ability to cope with their difficult task.

The following are steps that can be taken by professionals to assist families involved in the care of an individual with dementia.

  • Understand the family network, which includes identifying the major decision-maker, the financial resources, and major concerns.
  • Provide accurate information and educate the family about the disease process.
  • Leave avenues open for follow-up, as families often are overwhelmed.
  • Offer Alzheimer’s Association, National Institute on Aging, or other pamphlets and booklets to amplify and reinforce information.
  • Explain the importance of support groups, friends, and religious organizations to avoid isolation.
  • Assist the family in obtaining respite care at home, at a daycare center, or in a nursing home.
  • Assist families who are dealing poorly with the increased demands to obtain counseling or psychological therapy and to identify specific stressors and potential solutions.

Caregivers may benefit from the following suggestions from the National Family Caregivers Association (2012):

  1. Believe in yourself.
  2. Protect your health.
  3. Reach out for help.
  4. Speak up for your rights.

A long-term study in New York city found that caregivers receiving enhanced counseling and support, including support group participation, and continuous access to ad-hoc telephone counseling reported significantly better self-rated health than the control group. The benefits of the intervention lasted for two years (Mittelman et al., 2007).

Caregiver support and counseling may also help delay nursing home placement by as much as 18 months (Mittelman et al., 2006). Caregivers’ guides also are available from many hospitals and government agencies including the National Institute on Aging: http://www.nia.nih.gov/Alzheimers/Publications/caregiverguide.htm.

Better understanding of dementia and techniques to cope with it can reduce caregivers’ burdens and the negative reactions to disruptive behaviors common to AD; and reducing the burdens of caregiving can delay the need for nursing home care.

ETHICAL AND END-OF-LIFE CONSIDERATIONS

Alzheimer’s disease raises a host of ethical issues. There are three guiding ethical principles commonly applied in patient care:

  1. Beneficence: The obligation to do good, preserve life, and prevent harm and suffering
  2. Respect: The obligation to preserve and promote the autonomy and dignity of the person
  3. Equity: The obligation to give treatment that is fairly and equitably distributed among individuals

The obligation to evaluate and treat physical illness is not diminished by the patient’s age or mental state.

Decision-Making

It is not uncommon for caregivers to behave paternalistically toward the demented individual. Persons should be given every opportunity to play a role in decision-making, even if only about minor aspects of their environment. Some persons are capable of making many decisions, and others, none. This requires a constant individualized assessment done periodically to ascertain level of competence. Respecting the decision-making capacity of each person helps prevent steadily increasing dependence.

Individuals are presumed capable of acting in their own best interest, and a normal person has the legal and moral right to choose and refuse. It is this major right to make such choices that is at issue in Alzheimer’s disease.

Ethical principles ensure a patient’s right to adequate treatment for preservation of life or prevention of suffering. When cognitive decline interferes with interactions between caregivers and patient, the patient often is viewed as unpleasant and undesirable, and impartial decisions about care may be overlooked or ignored.

LIFE-EXTENDING TREATMENT

Ethical dilemmas often occur when decisions are being made regarding end-of-life issues such as withholding treatment and “letting nature take its course.” The person’s wishes, if known and expressed while still competent, should be considered. Persons have the right to refuse life-extending treatment, and incompetence does not diminish that right. When a patient, family, and caregiver cannot agree on these matters, the decisions must be left to the courts.

The question of what type and degree of life support should be given is a difficult one since loss of intellect often is equated with loss of humanness. Ethically, the minimum requirement should be that the person be kept clean, adequately hydrated and nourished, and as free of pain and discomfort as possible.

The issue of physician-assisted suicide and active euthanasia was addressed in a 2011 Gallup Poll and revealed that 45% of Americans believe it is morally acceptable and 48% believe it is morally wrong (Gallop, 2011). The question remains under debate as to whether or not acts of withholding treatment (passive euthanasia) that allow a patient to die are morally different from active euthanasia. Increasingly, however, there is public pressure for a system that ensures a patient’s “right to die well.”

ARTIFICIAL NUTRITION AND HYDRATION

In the late stages of AD, patients may become unable to consume sufficient oral feedings to prevent weight loss. If the patient’s advance directive (see below) indicates that he or she does not want artificial nutrition and hydration (ANH), caregivers must respect that decision. However, if the decision was not made earlier, this is the time when the patient’s surrogate (also called a proxy) decision-maker, with the physician and other members of the health team, must decide together whether to initiate tube feedings.

Deciding to initiate ANH means weighing the potential benefit and burden to the patient. The physician and care providers need to help families understand that forgoing ANH is not “killing” or “starving” the patient.

The Ethics Advisory Panel of the Alzheimer’s Association (2000) recommends assisted oral feeding coupled with hospice care, when needed, as the compassionate alternative to tube feeding. This recommendation is based on several studies that point out tube feeding:

  • Is associated with increased diarrhea and related discomforts
  • Results in increased use of physical restraints to prevent patients from pulling tubes out of their abdomens
  • Does not usually improve nutritional status
  • Does not lower the incidence of aspiration pneumonia or skin breakdown
  • Does not improve longevity
  • Denies the patient the gratification of tasting preferred foods
  • Increases pressure ulcer risk (Teno et al., 2012)

The Alzheimer’s Association emphasizes that “assisted oral feeding should be available to all persons with advanced Alzheimer’s as needed. Neglect in this area should not be tolerated, and concerted efforts are called for to educate and support professional and family caregivers in techniques of assisted oral feeding.”

Eventually, the ability to swallow is lost, at which time the patient is considered terminal. Current ethical thinking categorizes technical sustaining of hydration or nutrition as medical procedures. As such, decisions to forego these interventions should carry the same ethical weight as decisions to withdraw transfusion therapy or dialysis (Palecek et al., 2010).

Legal Documents

Getting legal affairs in order—drawing up advance directives, powers of attorney, wills, or trusts—should be done as soon as possible after diagnosis, while the patient is able to express personal wishes and participate in decisions. Referral to the local chapter of the Alzheimer’s Association can help families find attorneys who specialize in elder law or estate planning.

This referral should not be made abruptly but as a suggestion, emphasizing that every adult, regardless of health status, should make such a plan. This helps ensure that one’s wishes are respected in end-of-life care and disposition of property after death. Otherwise, families will need to make difficult decisions without knowing the patient’s wishes.

ADVANCE DIRECTIVES

Decisions surrounding the withholding or withdrawing of care are often complex. Further, a peaceful death is no longer easy to achieve. In 1991, the Patient Self-Determination Act went into effect requiring all healthcare institutions receiving Medicare or Medicaid funding to ask patients if they have advance directives.

An advance directive specifies a person’s preferences for care in the event that he or she is unable to communicate those wishes—for example, in the advanced stages of AD. A living will is one type of advance directive. In an advance directive, the person can also name a representative to see that his or her wishes concerning care are carried out. This is sometimes called a durable power of attorney for healthcare.

Physicians should have copies of advance directives available or be able to refer families to a source for the appropriate forms. Federal law requires hospitals to inform patients that they have a right to complete an advance directive, but advance directives are regulated by state law and may differ from state to state. (The Family Caregiver Alliance provides more information; see “Resources” at the end of this course.)

CPR VERSUS DNR ORDERS

Another type of advance directive is a do-not-resuscitate order (DNRO), which informs medical personnel that a patient does not want to have cardiopulmonary resuscitation (CPR) performed in the event of cardiac or respiratory arrest. These DNROs are also regulated by state law. (DNAR, or “do not attempt resuscitation,” is another common acronym used in this context.)

A DNRO should be posted prominently, either on the head or foot of the bed, or if the patient is at home, on the refrigerator, and also be included in the patient’s chart. The DNRO should be readily available in the event of an emergency to ensure that the patient’s wishes will be honored. Some patients prefer the additional safeguard of wearing a bracelet or necklace to alert care providers that a DNRO is in force.

Hospice Care

Hospice is a philosophy of care that emphasizes physical comfort, pain and symptom management, and death with dignity. It encompasses the spiritual and psychosocial aspects of care, both for the patient and the family, and includes bereavement support for the surviving family members.

During the terminal stages of AD, hospice care can be particularly beneficial to patients and families. Each year, more than half a million terminally ill people enter hospice programs for end-of-life care. Most of them are people with cancer. Unfortunately, few clients with AD receive hospice care, accounting for only about 7% of the annual hospice census.

To qualify for insurance reimbursement (including Medicare) for hospice services, a physician and a hospice medical director must certify that the patient has less than six months to live. The National Hospice and Palliative Care Organization has published guidelines to identify which dementia patients are likely to have a prognosis of six months or less if the disease runs its normal course. Medicare covers the cost of hospice care in every state, as does most private long-term care insurance.

Physicians and other health professionals need to educate families about the benefits of hospice care for their loved one with AD and for themselves. Ideally, this education would begin at the time of diagnosis, when the patient is still capable of expressing preferences about end-of-life care.

Hospice care involves a team of health professionals, including doctors, nurses, social workers, clergy, therapists, and trained volunteers. Hospice care is most often given in a patient’s own home, but it can also be given in nursing homes or hospitals. A few communities may have separate facilities designated for hospice care.

SUMMARY

Alzheimer’s disease is one of the most devastating conditions that affect human beings because it destroys the mind. Dementia impairs memory and interferes with the ability to make rational decisions, thus preventing a person from functioning effectively in their environment. As a result, dementia robs the person of dignity and independence. Because AD is completely irreversible, cannot yet be adequately treated, and is associated with a long survival period, it affects not only the person’s life, but also the person’s family, caregivers, and society.

Researchers are working to understand causes of this disease and to develop new treatments that can alter the course of the disease or cure or prevent it. Early diagnosis is important in order to intervene with treatments that can slow the progression of the disease. There are ten warning signs offered by the Alzheimer’s Association:

  1. Memory loss that disrupts daily life
  2. Challenges in planning or solving problems
  3. Difficulty completing familiar tasks at home, at work, or at leisure
  4. Confusion with time or place
  5. Trouble understanding visual images and spatial relationships
  6. New problems with words in speaking or writing
  7. Misplacing things and losing the ability to retrace steps
  8. Decreased or poor judgment
  9. Withdrawal from work or social activities
  10. Changes in mood and personality

For caregivers, the challenges can be overwhelming. It is essential that professionals recognize the toll this disease takes on both the person with the disease and those that are charged with their care.

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RESOURCES

Alzheimer’s Association: Medic Alert + Safe Return program
http://www.alz.org/nyc/in_my_community_medicalert_safereturn.asp

Alzheimer’s Disease Education and Referral Center (ADEAR)
http://www.nia.nih.gov/alzheimers/

ADEAR: Alzheimer’s disease video
http://www.nia.nih.gov/alzheimers/alzheimers-disease-video

Alzheimer’s Disease: MedlinePlus health information
http://www.nlm.nih.gov/medlineplus/alzheimersdisease.html

Dementia Advocacy and Support Network International (DASNI)
http://www.dasninternational.org

Eldercare Locator: Services for older adults
http://www.eldercare.gov
800-677-1116

Family Caregiver Alliance
http://www.caregiver.org
800-445-8106

Mayo Clinic: Alzheimer’s disease
http://www.mayoclinic.com/health/alzheimers-disease/DS00161

National Academy of Elder Law Attorneys
http://www.naela.com

National Family Caregivers Association
http://www.nfcacares.org

National Hospice and Palliative Care Organization
http://www.nhpco.org

National Institute on Aging
http://www.nia.nih.gov

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