Alls Gone Out the Window

Levi Santana, R.N. Bulacan State University College of Nursing

Alzheimers Disease
Is a progressive, irreversible brain disorder

with no known cause or cure It attacks and slowly erases the minds of its victims Symptoms of the disease include memory loss, confusion, impaired judgment, personality changes, disorientation, and loss of language skills.

ALWAYS FATAL

Most common form of irreversible dementia

EPIDEMIOLOGY
Approximately 100,000 victims die and

360,000 new cases of Alzheimer's disease are diagnosed each year In the U.S. alone, it is estimated that by 2050, 14 million Americans will have this disease. America is not all alone in this malady.

 In every nation where life expectancy has

increased, so has the incidence of Alzheimer's disease Alzheimer's disease is becoming tragically common It is estimated that by 2020, 30 million people will be affected by this devastating disorder worldwide and by 2050, the number could increase to 45 million.

 The disease usually begins after age 60, and

risk goes up with age While younger people also may get AD, it is much less common About 5 percent of men and women ages 65 to 74 have AD, and nearly half of those age 85 and older may have the disease AD is not a normal part of aging

AD has a long history Although it was only in 1906 when the disease has acquired a name. AD is named after Dr. Alois Alzheimer, a German doctor. In 1906, Dr. Alzheimer noticed changes in the brain tissue of a woman who had died of an unusual mental illness. He found abnormal clumps (now called amyloid plaques) and tangled bundles of fibers (now called neurofibrillary tangles). Today, these plaques and tangles in the brain are considered signs of AD.

 Scientists also have found other brain

changes in people with AD. Nerve cells die in areas of the brain that are vital to memory and other mental abilities. There also are lower levels of some of the chemicals in the brain that carry messages back and forth between nerve cells AD may impair thinking and memory by disrupting these messages.

ETIOLOGY
Scientists do not yet fully understand what

causes AD.
There probably is not one single cause, but

several factors that affect each person differently.

Age is the most important known risk factor for AD. doubles every 5 years beyond age 65.

The number of people with the disease

RISK FACTORS
Family history

Scientists believe that genetics may play a role in many AD cases. For example, familial AD, a rare form of AD that usually occurs between the ages of 30 and 60, is inherited. The more common form of AD is known as lateonset. It occurs later in life, and no obvious inheritance pattern is seen.

 However, several risk factor genes may interact with each other to cause the disease. The only risk factor gene identified so far for lateonset AD, is a gene that makes one form of a protein called apolipoprotein E (apoE). Everyone has apoE, which helps carry cholesterol in the blood. It is likely that other genes also may increase the risk of AD or protect against AD, but they remain to be discovered.

OTHER RISK FACTORS

Education Diet Environment heart disease and stroke, such as high blood

pressure, high cholesterol,

low levels of the vitamin folate, may predispose

people to AD.

Evidence for physical, mental, and social activities as protective factors against AD is also increasing.

PATHOLOGY

AMYLOID PLAQUES

One of the hallmarks of Alzheimer's disease is the accumulation of amyloid plaques between nerve cells (neurons) in the brain. Amyloid is a general term for protein fragments that the body produces normally. Beta-amyloid is a fragment of a protein that is snipped from another protein called amyloid precursor protein (APP). In a healthy brain, these protein fragments would be broken down and eliminated. In Alzheimer's disease, the fragments accumulate to form hard, insoluble plaques.

NEUROFIBRILLARY TANGLES

Neurofibrillary tangles consist of insoluble twisted fibers that are found inside of the brain's cells. They primarily consist of a protein called tau, which forms part of a structure called a microtubule. The microtubule helps transport nutrients and other important substances from one part of the nerve cell to another. In Alzheimer's disease, however, the tau protein is abnormal and the microtubule structures collapse.

How the Brain and Nerve Cells Change During Alzheimer's Disease

The ability to recognize faces and to communicate is completely lost in the final stages. Patients lose bowel and bladder control, and eventually need constant care. This stage of complete dependency may last for years before the patient dies. The average length of time from diagnosis to death is 4 to 8 years, although it can take 20 years or more for the disease to run its course.

There is an overall shrinkage of brain tissue as Alzheimer's disease progresses. In addition, the ventricles, or chambers within the brain that contain cerebrospinal fluid, are noticeably enlarged. In the early stages of Alzheimer's disease, short-term memory begins to decline when the cells in the hippocampus, which is part of the limbic system, degenerate. The ability to perform routine tasks also declines. As Alzheimer's disease spreads through the cerebral cortex (the outer layer of the brain), judgment declines, emotional outbursts may occur and language is impaired. Progression of the disease leads to the death of more nerve cells and subsequent behavior changes, such as wandering and agitation.

DIAGNOSIS OF ALZHEIMERS DISEASE

 An

early, accurate diagnosis of AD helps patients and their families plan for the future. It gives them time to discuss care while the patient can still take part in making decisions. Early diagnosis will also offer the best chance to treat the symptoms of the disease.

Today, the only definite way to diagnose AD is to find out whether there are plaques and tangles in brain tissue. To look at brain tissue, how-ever, doctors must wait until they do an autopsy, which is an examination of the body done after a person dies. Therefore, doctors can only make a diagnosis of "possible" or "probable" AD while the person is still alive.

TOOLS USED BY PHYSICIANS

questions

about the persons general health, past medical problems, and the history of any difficulties the person has carrying out daily activities, tests of memory, problem solving, attention, counting, and language, medical testssuch as tests of blood, urine, or spinal fluid, and brain scans.

DIFFERENTIAL DIAGNOSIS
For

example, thyroid problems, drug reactions, depression, brain tumors, and blood vessel disease in the brain can cause AD-like symptoms. Some of these other conditions can be treated successfully.

DIFFERENTIAL DIAGNOSIS

Mild cognitive impairment (MCI)

different from both AD and normal age-related memory change. People with MCI have ongoing memory problems, but they do not have other losses like confusion, attention problems, and difficulty with language. Study to learn whether early diagnosis and treatment of MCI might prevent or slow further memory loss, including the development of AD.

TREATMENT OF ALZHEIMERS DISEASE

No treatment can stop AD. However, for some people in the early and middle stages of the disease, the drugs tacrine (Cognex), donepezil (Aricept), rivastigmine (Exelon), or galantamine (Reminyl) may help prevent some symptoms from becoming worse for a limited time. Another drug, memantine (Namenda), has been approved for treatment of moderate to severe AD.

 Also,

some medicines may help control behavioral symptoms of AD such as sleeplessness, agitation, wandering, anxiety, and depression. Treating these symptoms often makes patients more comfortable and makes their care easier for caregivers.

 Developing

new treatments for AD is an active area of research. Scientists are testing a number of drugs to see if they prevent AD, slow the disease, or help reduce symptoms.

ROLE OF ANTIINFLAMMATORY DRUGS

There is evidence that inflammation in the brain may contribute to AD damage. Some scientists believe that drugs such as nonsteroidal anti-inflammatory drugs (NSAIDs) might help slow the progression of AD. Although recent studies of two of these drugs, rofecoxib (Vioxx) and naproxen (Aleve), have shown that they did not delay the progression of AD in people who already have the disease. Now, scientists are studying the NSAIDs celecoxib (Celebrex) and naproxen to find out if they can slow the onset of the disease.

ROLE OF VITAMIN E
Research

has shown that vitamin E slows the progress of some consequences of AD by about 7 months. Scientists now are studying vitamin E to learn whether it can prevent or delay AD in patients with MCI.

ROLE OF GINKGO BILOBA

Recent

research suggests that ginkgo biloba may be of some help in treating AD symptoms. There is no evidence that ginkgo will cure or prevent AD. Scientists now are trying to find out whether ginkgo biloba can delay or prevent dementia in older people.

Earlier studies had suggested that the hormone replacement therapy that millions of women take after menopause may be protective against AD. However, the WOMEN Health Initiative clinical trial found an increased risk of AD in women taking hormones as compared with those taking an inactive pill. The trial used a commonly pre-scribed pill combining estrogens and progesterone. Further studies on estrogen alone and other hormone preparations, such as the estrogen patch, continue.

ROLE OF HORMONE REPLACEMENT THERAPY

STAGES OF ALZHEIMERS DISEASE

MILD STAGE
Memory loss becomes more noticeable Concentrating and paying attention becomes

harder, leading to difficulties in understanding written material, doing calculations, or making job-related decisions Misplacing or losing valuable items Momentary disorientation in familiar surroundings Some changes in personality and judgment

MODERATE STAGE
Memory loss about recent events and some

details of personal lives Inappropriate use of words Difficulty in performing such tasks as planning meals and dressing Increased disorientation Agitation, anxiety, suspiciousness Confusion between day and night Sleep disturbances Wandering off and not knowing how to return. Failure to recognize friends and relatives

SEVERE STAGE
Memory loss nearly complete Severe disorientation and confusion Speech declines to a few intelligible words Loss of physical functions like walking

and sitting up Loss of bladder and bowel control Loss of appetite Total dependence on caregiver

Ten Warning Signs of Alzheimers

1. Recent memory loss that affects job skills 2. Difficulty performing familiar tasks 3. Problems with language 4. Disorientation of time and place 5. Poor or decreased judgment 6. Problems with abstract thinking 7. Misplacing things 8. Changes in mood or behavior 9. Changes in personality 10. Loss of initiative

ISSUES ON CAREGIVING ALZHEIMERS PATIENTS

ISSUE NUMBER 1

CAREGIVING IS A HEAVY BURDEN

The roles that family caregivers must accept can be overwhelming. In addition to meeting the physical needs of the relative with Alzheimer's, such as helping with personal hygiene and dressing, preparing meals, and housekeeping, it is important to ensure that the person is stimulated by both social and physical activity. The caregiver must also think to the future, plan for increasing custodial and medical care, and usually take over fiduciary responsibilities. Faced with all these tasks, caregivers can easily fall victim to illness and depression.

ISSUE NUMBER 2

RESENTFULNESS OF THE CAREGIVER

Another danger for the overburdened caregiver is becoming resentful to the point of neglecting the care recipient's needs or engaging in abusive behavior--psychological or physical. The National Elder Abuse Incidence Study reported that in one year, 1996, more than 550,000 persons age 60 or older had experienced some type of neglect or abuse, 90% at the hands of a family member. Elderly persons with advancing Alzheimer's or other dementia are more vulnerable than most because they cannot understand what is happening to them, defend themselves, or communicate their distress to those who might help them. They are also more likely to be taken advantage of financially, since the caregiver usually handles financial matters.

THIRD ISSUE

CARE FOR THE CAREGIVERS THEMSELVES

Available to help the caregiver meet this need are numerous support services, many offered by volunteers through local chapters of the Alzheimer's Association, church groups, or other local service organizations. Of all services, respite care is probably the most important, for what the caregiver needs most is time away, whether for a few hours or a few days. For those who can afford it, residential respite care is available in private facilities or care at home through home help/nursing registries.

FOURTH ISSUE
Accepting the role of caregiver to a person with Alzheimer's, with all its responsibilities as well as distasteful tasks, requires commitment and a capacity for caring.

CAPACITY FOR CAREGIVING

development of caring capacity for the care

recipient development of capacity for self-care development of caring capacity for others. Further, their care giving experience at home prompted some to become caregivers for humanity and to expand their sense of self

FIFTH ISSUE

RACIAL AND CULTURAL DIFFERENCES

A qualitative study conducted by Ana Ortiz et al among Latino and Irish American caregivers of demented elders in the Boston area showed how "ties to homelands and neighborhood institutions act as mediators and shapers of anticipatory grief, caregiver burdens, and caregiver resources, serving as a buffer against exhaustion and despair for some families (primarily the Irish American sample) and as an additional site of loss or stress for others (primarily the Latino sample).

INTERACTION ISSUES OF THE CAREGIVER WITH THE PATIENT

1. Arguments are useless and in fact, make matters

worse. Confusion memory loss and frustration are making the person behave irrationally and you can't "argue" them out of it. 2. Actions help when verbal communication may fail. Help the person by demonstrating what you mean or sometimes by starting him or her in the activity 3. Assume that people with Alzheimers may understand and hear what you say even if they are confused. Do not say things to others in front of them as if they were deaf 4. Appreciate good moments or good days, even though the person's ability is not going to remain that way.

5. Appropriate activities help people with Alzheimer's pass the time meaningfully and productively and reduce agitation, boredom , daytime sleeping and depression 6. Agitation can be alleviated when the caregiver remains calm, reassuring and respectful of the person's feelings 7. Adults with disabilities are still adults. Mental level is not always equal to social level. 8. Adapt the task to fit the ability of the patient. Break down the activity into separate steps or simplify the tasks by eliminating parts that could be frustrating 9. Assessment is ongoing. What is safe and effective for now may not be so at a later time. Keep watching and reevaluating

COPING MECHANISMS

Family caregivers must learn how to cope with their burden of care, fears, depression, physical strain, and psychological stress. They need support. True care giving families share the burden, providing at least respite care and temporary or occasional help to the primary caregiver. If family help is not available, it is imperative that the caregiver seek help and support in the community, from local chapters of the Alzheimer's Association or other volunteer organizations.

OTHER ISSUES

Care away from home Public awareness and social/government response Impact on society How to face the end--decisions, care, feelings Adult Day Services Retirement Housing Assisted Living Nursing Home Continuing Care Retirement Communities

CREATIVE IDEAS IN CARING FOR ALZHEIMERS PATIENTS

EARLY STAGE
Individuals in this stage are often quite active, aware that they have AD and struggling to remain independent. Gifts that enhance independence or encourage activity are excellent choices.

Games - simple but familiar games, such as dominoes, large numbered cards, or bingo have the potential for quite a bit of enjoyment Tickets to a concert, musical, circus, or sporting event can be a fun choice. Remember, though, that your loved one may be overwhelmed by too much activity. Visit a shopping mall and "window shop," then have lunch or ice cream together. Limit your trips to no more than three hours. Frozen homemade meals can be reheated in a microwave and are especially good for couples. Collage - frame a collage of old family photos highlighting the major events in the person's life. Fruit basket or flowers - always a welcome gift.

MODERATE STAGE
Persons with moderate stage AD will require more assistance, but still remain active. Wandering is frequently seen in the group, so exercise is important. Attention span varies; activities are best limited to about 15 minutes

Materials to sort - coins, a bag of buttons, or large beads can be fun to sort. Men might enjoy sorting keys, nuts and bolts, or cards better. Music, especially "old songs," often brings back wonderful memories. Check with record stores for remakes of older albums. A jewelry box with a variety of costume jewelry to rummage through is ideal. Low-cost items can be found at thrift shops and garage sales. Make inexpensive copies of the person's good jewelry for them to wear. If items are lost, the good jewerly will remain safe with the family. Basket of yarn or fabric - for rummaging and sorting. Be sure to include fabrics with different textures to stimulate the sense of touch. Taped church services - mid-stage dementia individuals may not attend church, but will enjoy the sermon and some of the service. Picture books - memories may be triggered by older picture books of movie stars, historical events, and nature books. Enjoy reminiscing with your loved one.

LATE STAGE
In the late stage of the disease, people with dementia do not have the capacity to deal with anything but the simplest of tasks. At this stage, they are "living in the past" and may believe that they are much younger and living in the home or community of their younger years. Attention span and understanding are both very poor.

Memory books - a gathering of old pictures and mementos from the person's past may allow them to think about and enjoy intact memories. Animals - many people with late-stage dementia still enjoy visits from dogs, cats, and other animals such as guinea pigs and rabbits. Box turtles are also a big hit, as well as bird watching. Be sure the larger animals are well-trained to handle certain behaviors of the late stage individual. Knee warmers - good for an inactive, wheelchair-bound person with late stage AD. Circulation is often poor at this stage, and the knee warmer or lap blanket helps conserve heat and reduce symptoms associated with poor circulation.

 Cuddle animals or dolls

- many late stage dementia patients enjoy having a soft cuddle object to bring back maternal feelings and a sense of comfort. Remember that adults will require "real" items and not child-like toys. Hand/body lotions - most people in this stage derive comfort from touch. Try giving a hand or back massage.