The term “dementia” is used by the medical community to describe patients with impaired intellectual capacity. Dementia patients may also be labeled as having “presenile” or “senile” dementia, “chronic” or organic brain syndrome,” “arteriosclerosis,” or “cerebral atrophy.” It is important to point out that dementia is not a normal part of the aging process. Dementia conditions are caused by abnormal disease processes, and can affect younger as well as older persons.
The U.S. Congress, Office of Technology assessment estimates that 1.8 million American have severe dementia and another 1 to 5 million Americans have mild to moderate dementia. According to the Alzheimer’s Association, approximately 4 million of these people are afflicted with Alzheimer’s disease. By the year 2040, the number of Alzheimer’s disease may exceed 6 million.
Signs of dementia include short-term memory loss, inability to think problems through or complete complex tasks without step-by-step inappropriate or bizarre behavior.
Deteriorating intellectual capacity may be caused by a variety of diseases and disorders. The National Institute on Aging states that some 100 conditions which mimic serious disorders are actually reversible. These are sometimes called “pseudodementias,” and are often treatable. Examples of conditions causing reversible symptoms of dementia are:
· Reaction to Medications-Older persons taking prescription drugs may suffer adverse reactions including confusion. Sedatives, hypnotics, neuroleptics, antihypertensives and antiarthritic medications are among the most common. All medications including over-the counter remedies should be monitored by a physicians to reduce the possibility of side effects.
· Emotional Distress-Depressions or major life changes such as retirements, divorce or loss of a loved one can affect one’s physical and mental health. A physician should be informed about major stressful events. Severe delusional states should also be diagnosed by a psychiatrist.
· Metabolic Disturbances-Problems including renal failure, liver failure, electrolyte imbalances, hypoglycemia, hypercalcemia, hepatic diseases or pancreatic disorders can provoke a confusional state, changes in sleep, appetite or emotions.
· Visions and Hearing-Undetected problems of vision or hearing may result in inappropriate responses. This could be misinterpreted as dementia because an individual is unable to perceive surroundings or understand conversations. Hearing and eye examinations should be performed.
· Nutritional deficiencies-Deficiencies of foliate, niacin, riboflavin and thiamine can produce cognitive impairment. Special attention should be given to patients who have difficulty in chewing, swallowing, or digesting food. Loss of taste and smell, loss of appetite, poorly fitting dentures or even difficultly shopping or preparing food may lead to nutritional deficiencies.
· Endocrine Abnormalities-Hypothyroidism, hyperthyroidism, parathyroid disturbances or adrenal abnormalities can cause confusion which mimics dementia.
· Infections-Older persons can develop infections which produce a sudden onset of a confusional state. This should be brought to the attention of a physician. Confusion caused by an infection is often treatable.
· Subdural Hematoma (blood clot on the surface of the brain) Clots can form which create collections of fluid that exert pressure on the brain. These clots can be treated by draining the fluid before it has caused permanent damage.
· Normal Pressure Hydrocephalus-the flow and absorption of spinal fluid, which is manufactured inside the brain, is interrupted. When the fluid is not absorbed properly, it builds up inside the brain and creates pressure. Surgery can be performed to drain the spinal fluid into the bloodstream to relieve the pressure.
· Brain tumors-tumors in the brain cause mental deterioration. Benign tumors can be surgically removed. For other rumors, a combination of surgery and radiation/chemotherapy can help the patient.
· Atherosclerosis (hardening of the arteries)-Intellectual impairment can result when a series of small strokes occurs (multi-infarct dementia). Built-up atherosclerotic plaques can be surgically removed or medically treated in order to prevent future strokes from occurring. If action is taken early enough, the patient can be helped.
Certain conditions cause cognitive impairment which is not reversible. These include:
Head Trauma - traumatic brain injury can occur at any age. Trauma from a fall or an accident can precipitate personality, cognitive or behavior changes. If brain injury is mild, previous functioning may be restored over time. In cases of moderate to severe head trauma, brain impairment may be lasting. Careful attention should be paid to any blows to the head. Head injuries should be examined by a neurologist or rehabilitation specialist.
Cerebral Degenerative Diseases - if dementia is caused by a degenerative disease, progressive cognitive deterioration can not be reversed. The most common irreversible dementia is Alzheimer’s disease. Other degenerative diseases which can also cause dementia include Parkinson’s disease, Huntington’s chorea and Pick’s disease. Other causes of dementia include cerebrovascular accidents (stroke), anoxia (loss of oxygen to the brain), Creutzfeld-Jakob’s disease, Binswanger disease, AIDS and Multi Sclerosis.
To diagnose dementia, a complete medical and neuropsychological evaluation is recommended and a complete patient history is very important . Brain Scans such as CT (“CAT” scans) or MRI (Magnetic Resonance Imaging) are an important part of the process. PET (Position Emission Tomography) and SPECT (Single Proton Emission Computed Tomography) are newer, less available techniques which can not be done at all hospitals. Much of the diagnostic procedure is a process of elimination to rule out any treatable causes of dementia. In most cases, a definitive diagnosis is not possible until after an autopsy can be performed. Nevertheless, diagnosis tests which rule out treatable causes of dementia are considered quite accurate when conducted by a qualified clinician.
Chronic or irreversible dementia requires special care. Special arrangements and support must be offered to families who care for a dementia patient at home. Behavior management techniques (such as controlling wandering, disorientation, sleeplessness or incontinence), safety precautions for home care (such as attending to electrical appliance, car keys, supervision and doors that lock) and legal considerations (for arranging finances, conservatorships or durable power of attorney) should be attended to by family caregivers. Most care is provided at home but some patients may require placement in some type of residential facility in later stages.
POSSIBLE REVERSIBLE CAUSES OF DEMENTIA
1. Reactions to medications.
2. Nutritional and hydration deficiencies leading to electrolyte imbalance.
3. Some illnesses:
a. Diabetes out of control
c. Cardiac – Myocardial infractions, arrhythmias, congestive heart failure.
d. High temperatures.
e. Prolonged infections – e.g. pneumonia.
f. Severe anemia
a. Changes in environment, routine.
b. Losses leading to depression.
c. Sensory deprivation or impairment.
d. Reactions to surgery (reaction to anesthesia)
COMMUNICATION WITH THE DEMENTIA RESIDENT
1. Look for non-verbal cues. Watch eyes for fear, anger, and pain. Watch facial expressions or hands for signs of sadness, anxiety, worry. Watch body for change of position (withdrawal), folded arms, and avoidance of eye contact - all of which may be signs of not wishing to communicate. Smiling, learning closer, touching or reaching out may be signs of a desire to communicate.
2. Have resident describe what she/he wants or encourage to touch or point if resident can’t find the word trying to say. Your supplying the missing word can be helpful if this doesn’t work or resident appears frustrated.
3. If a resident rambles, listen for “key” words to see if you can get the message.
4. If resident loses his/her train of thought, refocus the conversation by repeating the same words resident was saying prior to resident’s wandering off verbally.
5. Use simple sentences and ideas.
6. Give one direction at a time. Allow resident time to process and respond.
7. Repeat as needed using the same words.
8. Ask questions requiring ‘yes/no’ responses, slowly, allowing time for processing and responding between each one. If the resident appears to get upset if too many questions are being asked, STOP. Discontinue conversation if necessary. Direct statements like “You are looking well” rather than “How are you?” may be better received by some.
9. Use a calm, gentle, respectful and patient tone of voice. Avoid loud, angry or pressured tones. Do not argue, frighten or scold. (A dementia patient may have lost his cognitive skills but can still sense, feel, and be sensitive to others’ emotions and moods.)
10. Approach resident from the front not the back. Do not move suddenly or rapidly around the resident.
11. When encouraging a resident to perform a task, break the task into small steps. Explain each step or procedure just before doing it is to be done. Do not hurry the resident or ask him/her to do something that will be too challenging. Cue the resident if needed or help him to get started.
12. Always talk ‘to’ the resident and never ‘over’ him/her or about him to someone else as if he/she were not present.
13. Behavior can be a mode of communication. If resident becomes disruptive, returning later, distraction, or removing the resident to a quieter, calmer setting for a ‘time out’ may help. Remain calm and gentle but firm. Watch your own tone of voice and body language.
14. Make allowances for visual and hearing losses which may contribute to inappropriate responses. Obtain evaluations/equipment repair. Approach from the front. Make eye contact. Touch gently, if necessary and not frightening, to get the resident’s attention. In the event of a hearing loss, face resident favoring stronger side. Repeat as needed. Raising your voice volume slightly and speaking in lower tones may be helpful. Maintain a low noise level and avoid disruptive and distracting noise clutter.
STRATEGIES AND SUGGESTIONS FOR COMMUNICATION WITH DEMENTED AND COGNITIVELY IMPAIRED ELDERS
1. Eliminate distractions
· Provide a quiet non-distracting environment.
· Turn off the television or radio.
· Find a quiet place to sit without people or excessive clutter.
2. Maintain eye contact
· Approach the person at his eye level. For example, if in a wheelchair, sit next to or opposite the person so he can benefit from the visual cues of facial expression and mouth movements.
3. Speak slowly, calmly and clearly, but in an adult manner
· Remember that memory impaired elderly continue to have adult references, responses and contributions.
· Repeat several times if necessary.
· If the listener has difficulty understanding some particular phrases or word, try to find a different way of saying the same thing rather than repeating the original words over and over.
· Speak only when you are visible to the person.
· Be sure you have the listener’s attention before speaking.
4. Monitor the tone and level of your voice while talking to a person with dementia
· Use a reassuring tone of voice.
· Gestures, pantomime, and pictures can help you get the point across.
· Use nonverbal cues like exaggerating a smile or a nod.
· Listen to nonverbal language.
· Reorient as often as needed.
5. Do not assume that the person whose speech is impaired is unable to understand what is said around him/her.
6. Use short, simple sentences.
· Limit choices.
· Use concrete rather than abstract words and ideas.
· Give direct and explicit one-step instructions.
· Provide small amounts of information, such as time or place; be sure it is repeated back, if possible. Help write it down on paper.
· Do not correct or insert words.
· Avoid sentences phrased in the negative. Instead of saying “Don’t go outside” say “Stay inside”.
SOME TECHNIQUES FOR WORKING WITH THE DEMENTIA RESIDENT
A. CONFUSION AND DISORIENTATION
1. Consistent and predictable routine. Avoid unnecessary changes.
2. Use of past-routines, memories, pictures – (especially pre-illness past).
3. Reality orientation (in early stages primarily). Can have negative effect as disease progresses.
a. Non-verbal: eye contact, touch, smile, cueing/modeling.
b. Verbal: appropriate communication techniques.
c. Introduce self and reintroduce as often as needed. Use resident’s name.
d. Explain and re-explain as needed. Do not expect resident to remember or to be able to relearn (especially if Alzheimer’s).
e. Redirect if appears lost. Use signs and pictures to help orient. (Remember the need to reorient more formally if there has been a room or bed change.)
B. COMMUNICATION PROBLEMS
1. Look for non-verbal cues.
2. Supply the missing word.
3. Have resident describe.
4. Refocus conversation if resident loses train of thought by repeating what was said before resident wandered off verbally.
5. Use simple sentences and ideas.
6. Give one direction at a time. Allow time to digest and respond.
7. Repeat as needed using the exact same words.
8. Ask yes/no need-oriented questions slowly with time to digest and respond between each one. If resident appears to get upset if too many questions are being asked, STOP.
9. Use a calm, gentle, respectful, and patient tone of voice. Avoid loud, angry or pressured tones. (A dementia patient may have lost his cognitive skills but can still sense, feel and be sensitive to other’s emotions and moods.
10. Break tasks into small steps. Explain each step or procedure just before doing it. Cue the resident if needed or help him to get started.
C. PARANOIA: SUSPICIOUSNESS
1. Avoid disagreeing with resident if unable to accept reality
2. Include resident in his care. Explain procedures, too.
3. Do not discuss the resident with others in his presence or within his hearing range. (may also misconstrue a discussion of others to be about him.)
4. Relate to his feelings of discomfort and concern.
5. If something’s missing, offer to help him search.
6. Distract if will allow, particularly with something you know she/he is likely to respond to.
D. CATASTROPHIC REACTIONS (OVERREACTIONS OR EXAGGERATED RESPONSES)
1. Try to identify triggers. Try to eliminate such from resident’s environment.
2. Look for warning signs and intervene or change environment or approach being used promptly.
3. Watch for overstimulation. May prefer a quiet place with a minimum of activity or demands to one involving much people or group participation.
4. Don’t argue, frighten or scold.
5. Do not hurry or ask to do something that will be too challenging.
6. Back off if resident begins to get upset. Return later if appropriate and safe to do so.
7. Stop asking questions if appears to be getting upset. When asking, do so slowly and simply – repeating as needed and allowing ample time to process and respond.
8. If unable to manage behavior by a sensitive, responsive, nursing approach or by manipulation of the environment, medication may be needed. Use smallest dose possible and effective as medication can compound problems for some.
E. RESTLESS AND WANDERING
1. Remind frequent where resident is.
2. Minimize unnecessary room changes.
3. Surround with familiar objects and people (pictures can be helpful).
4. Place in a calm, secure environment. Remove reminders of out of doors where possible. (In an SNF can remove suitcases, consider pictures or posters on exit doors, put a Stop sign on the doors, etc…)
Alzheimer’s disease is an incurable neurological disease in which changes in the nerve cells of the brain result in the death of a large number of cells. This destruction of brain cells eventually leads to serious mental deterioration, dementia, and death.
According to the U.S. Congress Office of Technology Assessment, there is an estimated 4 million to 6.8 million persons nationwide with dementia. Up to 500,000 Alzheimer’s patients may reside in California.
Alzheimer’s disease most commonly strikes individuals who are over 65; however, it can also afflict people much younger. About 11 percent of all Americans over 65 and 25-50 percent of those over 85 are believed to have the disease. Alzheimer’s accounts for more than half of the number of persons described as having senile dementia; Alzheimer’s patients fill more than half the beds in skilled nursing facilities.
Alzheimer’s disease costs the country more than $80 billion annually. Federal and state governments cover an estimated $8.5 billion of the cost. Families provide approximately 70-80 percent of the care for Alzheimer’s patients, at an average annual cost of $18,000 per family.
During the first two to four years, Alzheimer’s disease patients generally experience memory loss for recent events and disorientation. Later, the patient will often have problems with progressive memory loss, judgment, concentration, speech, and physical coordination. This is a time when the patient may forget to take a bath and will have problems with once-routine chores. In time, the patient’s family and/or caregiver will probably have to provide full-time supervision because of the patient’s tendency to wander off and engage in meaningless and often socially unacceptable behavior.
Alzheimer’s patients may also suffer sleeplessness, “sun setting” (confusion or agitation in the evening hours), and perseveration (a repetition of the same ideas, words, movements, or thoughts). Final stage disease progression includes severe problems with eating, communication, and of bodily functions.
DIAGNOSIS OF ALZHEIMER’S DISEASE
The diagnosis of Alzheimer’s disease can only be made after other diseases with similar symptoms such as brain tumors, strokes, and infections can be ruled out. It must also be differentiated from the occasional forgetfulness that occurs during normal aging and from depression and malnutrition, which can procedure early Alzheimer’s-like memory loss. Ideally, this diagnosis is made after a thorough medical evaluation followed by extensive neurological and neuropsychological assessments. This examination may be performed at designated Alzheimer’s evaluation centers or by skilled medical specialists. A definitive diagnosis can be made only by an autopsy.
Research using brain imaging has led to more knowledge regarding Alzheimer’s disease in three main areas: Brain structure and anatomy, diagnosis, and the physiology of the disease and its relationship to symptoms and behavior.
Brain imaging has been used by clinicians and researchers for many years to look at differences in brain structure and anatomy in patients with Alzheimer’s disease. It has long been known that shrinking of the brain or a atrophy, accompanies Alzheimer’s disease. This finding alone has not been helpful in diagnosing Alzheimer’s disease because brain atrophy is also associated with normal aging. CT and MRI scans are helpful diagnostically, however, in that they are able to rule out other conditions such as brain tumors or major strokes, which might account for certain symptoms of dementia.
More recent developments in brain imagine are scans which allow researchers to actually see how the living brain is functioning, looking at blood flow, oxygen and glucose metabolism and specific neuro-transmitter systems. Studies regarding brain blood flow and metabolism may help explain certain behaviors and symptoms which arise. Such scans may also be helpful in the future in identifying sub-types of the illness and may ultimately provide keys to effective treatment of some of the disease symptoms.
TREATMENT AFTER DIAGNOSIS
At the present time there is no way to prevent or cure Alzheimer’s disease. In 1993, Tacrine (Cognex) was approved by the U.S. Food and Drug Administration (FDA) for use as a treatment for Alzheimer’s disease, and is now available by prescription from physicians in the community. The medication requires weekly blood tests for the first 18 weeks of administration to check for liver inflammation, a common side effect.
Results of studies on Tacrine have shown it to have modest benefit in a minority of patients. It does not stop the progression of the illness but many provide symptomatic improvement in a small number of patients. Patients and family members are encouraged to discuss this treatment with their physician. Treatment should be based on the needs of individual patients. In tradition to Tacrine, other drugs are under study for their usefulness and safety in treating Alzheimer’s disease.
Alzheimer’s disease is often called a family disease because of the chronic stress it places on the entire family as they watch their loved one slowly regress in front of their eyes. Comprehensive treatment must therefore address the needs of the entire family. This would include emotional support, counseling, and educational programs about Alzheimer’s disease for patients and family members as they strive to provide a safe and comfortable environment at home.
Respite care, the use of a companion, homemaker, or aide at home or in a special Alzheimer’s Day Care Program may be needed to allow the caregiver time away from his/her 24-hour responsibilities. Consultation concerning placement in a skilled nursing home, when it is indicated, can also be helpful to a family. The Alzheimer’s patient will need good medical follow-up throughout the course of the disease. If he/she experiences delusions or great psychological stress, careful use of drugs to treat these symptoms may be indicted.
Comprehensive counseling should include the suggestion that the patient and the family obtain early legal consultation concerning how they can responsibly provide for and make treatment plans for the afflicted family member when he/she can no longer care for himself/herself. The life span of Alzheimer’s patients can range from under five to more than twenty years.
Families caring for an end-stage Alzheimer’s patient should give thoughtful consideration to placement in a skilled nursing facility where adequate management and supervision can be provided.
RECENT RESEARCH FINDINGS
Recently, new developments in genetic research into Alzheimer’s disease have come to light. For a number of years, investigators have known that there is a genetic connection in some cases of Alzheimer’s disease, namely an abnormality on Chromosome 21 which results in Down’s syndrome. In such cases, children with Down’s syndrome who live into their 30’s and 40’s show Alzheimer’s changes in their brains.
In addition, there are connections between Chromosome 14 and 19 and Alzheimer’s disease as well. Most recently, it was discovered that the gene for a particular protein, APOE, is present on Chromosome 19 and has three different forms. Of the three forms of the gene, APOE4 has the strongest connection with the development of Alzheimer’s disease, especially in those families with a high rate of disease in the family. Even in cases of Alzheimer’s disease in which there is no clear familial tendency, APOE4 was present in more than half of the cases.
APOE4 is important because it is the first discovery of a potential mechanism for the development of Alzheimer’s disease. The APOE4 protein binds to amyloid, which is the substance at the core of the characteristics plaques found in the brains of Alzheimer’s patients. In fact, if a drug could be developed which blocks this binding process, it might be a useful treatments.
The presence of two copies of the APOE4 gene confers a high risk of developing the illness in families with genetically transmitted late-onset Alzheimer’s disease and a higher risk of getting the disease for non-familial cases. At present, APOE4 is not a diagnostic test for Alzheimer’s disease since not all persons who have the gene get the disease, and some people with the disease may not have the APOE4 gene. For now, it is uncertain whether APOE4 is a true cause of the disease or just one factor.