I am indeed honored to address this audience today. It is a pleasure to be your guest in this beautiful country. The United States and Japan share - as does every industrialized nation - the grave problems of caring for people with dementia. We also share the day to day frustrations of patient care. How can we help these people to live their lives as comfortably as possible? How can we keep them safe? And how can we help their families?
There are six essential areas in which we intervene in order to support what function remains, to keep our clients safe, and to enable them to enjoy life as much as possible despite their disease. These are
・ Do a thorough diagnosis and assessment
・ Identify and treat excess disability
・ Understand the impact and nature of the brain damage
・ Find ways to support/restore positive feelings
・ Create a human and physical environment which supports remaining function and makes few demands on lost function
・ Provide adequate positive stimulation and reduce stress.
These same essentials of care apply to people in the early and middle stages of their illness - how we apply them differs with the severity of cognitive loss. While these essentials of care have some things in common with the care people with other illnesses need, these interventions primarily address the loss of mental function which dominates this ill ness.
1. DIAGNOSIS AND ASSESSMENT
Diagnosis of all health problems and an assessment of the person's areas of sparred and impaired functions, her environment and her family situation serve three purposes.
・ To identify the cause of the mental confusion and to treat any causes which are amenable to treatment,
・ To identify any concurrent conditions which may be adding to the person's cognitive difficulties and
・ To enable the provider to make an individualized plan of intervention
Edna is 84. She is a retired schoolteacher. She has significant short term memory loss, poor attention/concentration and seems generally con-fused. I did not find difficulties in language, handwriting, mathematics or other areas of mental function that are often, but not always, present early in Alzheimer's disease. Edna reports that she lies awake at night going over in her mind her worries that her sister is stealing her money. She also thinks she has done so many bad things in her life that she does not want to go out where others can see her. She wishes she could die because she is "worthless and senile". Her sister reports that she is losing weight. She recently moved to a new community to be near her sister and she is homesick. Her husband died about a year ago and she says she is grieving for him. On her dresser are seven bottles of various medications.
It is characteristic of the people we care for that their problems are complex and that they involve other people. Also we need to mention that her age is not a contributing factor either to the confusion or to the depression. Her sister, two years her senior, is neither confused or depressed.
In order to sort this out, we must take an orderly approach. First Edna is taken to the physician for a complete medical evaluation. Her medications go with her.
The physician found that two of her three heart medications could be stopped and the dose of the third reduced. He gradually tapered her off her benzodiazapene; he reduced her diuretic and made no change in the aspirin she took for her arthritis. Her sister took over administration of her medications in case she was making mistakes and because her wish to die makes her a suicide risk.
A routine blood screen revealed a vitamin B-12 deficiency and supplemental injections were begun.
The physician made a diagnosis of dementia - Edna meets the definition of a dementia: a decline in mental function in more than one area of cognition (in Edna, memory and concentration), in a person who is awake and alert.
The physician did not make a diagnosis of Alzheimer's disease. Alzheimers disease is diagnosed only when no other condition is found that could account for the dementia and when the course of the disease shows the gradual decline which is characteristic of Alzheimer's. Edna has a B-12 deficiency which can cause dementia, she was taking medications which often contribute to confusion, she is depressed which also can cause dementia, and has heart disease which raises the possibility that she has a multi-infarct dementia.
The physician found insufficient evidence to support a diagnosis of multi-infarct dementia and will watch his patient for the step-wise declines characteristic of multi-infarct dementia.
Edna's depression presents the most difficult part of her assessment. When people are depressed their concentration is impaired and they think less well. This is often true of young depressed people. When this combines with Alzheimer's or multi-infarct dementia, it will further impair cognition. Thus the confused person may have a depression alone which is causing the dementia; she may have a reactive depression because she recognizes she has Alzheimer's disease. or she may suffer from both an irreversible dementia and depression.
To make the clinician's task more difficult, the anti-depressant medications may either alleviate the depression or they may make the person's dementia worse.
It can be dangerous to overlook or not treat depression. The person who believes herself to be becoming "senile" may choose suicide in preference to a worsening dementia and to becoming a burden to her family.
I satisfied myself that Edna's sister was not stealing from her (this does happen, and must be assessed); then her physician and I explored her symptoms to determine whether she had an ' understandable" depression brought about by her recent move and her awareness of her forgetfulness or whether she had the symptoms of depression which respond well to anti-depressant medication.
The later is characterized by symptoms such as depressed mood, change in sleep pattern, weight gain or loss, decrease in interest, guilt, fatigue, poor concentration, psychomotor retardation or agitation, suicidal thoughts or thoughts of death.
Edna reports depressed mood, decreased sleep, weight loss, guilt, thoughts of death and poor concentration. In addition her rumination and suspiciousness can be ascribed to her depression.
2. IDENTIFY AND TREAT EXCESS DISABILITY
Excess Disability describes any condition which add unnecessarily to the person's cognitive impairment. It can be thought of as putting a ball and chain on a person who must already walk with crutches. This added disability is common, and commonly overlooked. People with dementia seem more reactive to other conditions than do others, yet too often we ascribe worsened function to the progression of the disease and do not search for other causes.
(1) Causes of excess disability include
(a) Concurrent illness
One American study found that of 200 cases of dementia. 31% had more than one condition contributing to the dementia. As with Edna, metabolic diseases are among the most common of these. Major health problems such cancer and heart disease contribute to excess disability. However, seemingly minor conditions like urinary tract infections, however mild, respiratory infections. or constipation can lead to worsening of cognitive function. We find some causes of excess disability during the initial diagnostic work-up, but others continue to appear. While not making the final decision, the non-physician provider must monitor her clients and alert the physician to even alight changes in mental function or irritability which often signal concurrent illness.
An abrupt (although it may be slight) worsening of mental function or behavior (over days or weeks), a fluctuation over hours or days, or when a patient has difficulty paying attention or is hypervigilant, usually indicates a concurrent illness or drug ,toxicity.
(b) Drug toxicity
A common cause of unnecessary impairment is medications. A long list of pharmaceuticals are known to cause increased confusion in people with dementia. These patients often need fewer medications, lower doses, or a change to a drug less likely to cause confusion. As a person's dementia worsens, his sensitivity may change. It is essential to regularly monitor medications.
(c) Pain
People with dementia may not be able to report pain or to react to it appropriately. Even early in their illness, people with dementia may not report or correctly respond to even severe pain. They may walk on sprained ankles, overuse a shoulder with bursitis or fail to rest. Minor pain such as that caused by arthritis, constipation, headaches, or even of sitting too long in one position may increase confusion or increase behavior problems.
(d) Sensory deficits
Although many older people have deficits in hearing or vision, the person with dementia may not recognize these or compensate for them. People with dementia often refuse to wear hearing aides or eyeglasses which would support their deficits. They may react with anger when they do not hear, they may refuse to leave their room if blinded by glare. Sometimes people are not lost in their environment: it is just too dark for them to find their way around and because of the dementia, they will not think to turn on a lamp.
All aging eyes, including yours and mine, need more light to see and react more slowly to glare. Shiny floors, table surfaces, and glare filled in bathing areas all prove more difficult. The confused person does not recognize that she needs more light or less glare and will not seek a correction. Instead she may be angry or withdraw.
Level of contrast is also important. In Japan I am enjoying beautifully presented food, but in the U.S. nursing homes they may present white chicken meat on a white plate. The aging eye simply can't tell the chicken from the plate, and the person with dementia cannot compensate for this difficulty.
Noise is a significant stressor and cause of excess disability. The person who is hearing impaired as well as suffering from dementia cannot distinguish a voice over background noise. She may misinterpret the noises she hears, and she may become angry when "people don't talk loud enough".
People with dementia often refuse to wear hearing aides or eyeglasses which would support their deficits. Treating this form of excess disability involves reducing glare, increasing light, eliminating background noise. increasing contrast in the larger environment. While this is possible in the residential setting, it can be difficult in the family home where an elderly caregiver resists changes. Gradual suggestions and alight change can often be achieved, however.
Depression, hallucinations and delusions also contribute to the unnecessary handicap of the person with dementia and often respond very well to treatment.
Edna's B-12 deficiency, her depression, her drug toxicity and her delusion that her sister was stealing from her all responded to intervention. Although she continued to cry easily and to become despondent if left alone much of the day, she appeared much more cheerful, lost her suspiciousness and her mental status improved slightly. She did not return to a level of function which would be normal for a schoolteacher, and over the next several months we observed a gradual decline in cognition, indicating slowly progressing dementia, probably Alzheimer'a disease. She was subject to frequent mild urinary tract infections and her function level deteriorated with each occurrence, responding after each treatment.
Diagnosis and the treatment of excess disability, while not curing the underlying dementia, improved her function, allowing her to live in a nearly independent residential setting, and significantly improved her life quality through treatment of the depression.
3. UNDERSTANDING THE BRAIN DAMAGE
While we recognize that memory loss, language disorder and motor skills are damaged in dementia, it is easy to overlook the multitude of other, subtle losses. A clear understanding of the relationship between brain damage, personality, life style and behaviors such as being manipulative or attention getting is essential if we are to select an intervention that is effective and which treats our client with dignity and respect.
My friend Vera is in the early stages of her illness. With consider-able help she is living alone, and when I visited her, her social skills were still excellent. Had I not talked to her sister, I might not have noticed her difficulties. Vera knows where her TV dinners are kept, how to operate the microwave - in fact she knows every step in the process of preparing a meal. Yet she does not eat unless her sister calls her and talks her through each step of the simple meal.
Although Vera knows every step in the process, she has lost the ability to put things together in their proper sequence, and so can't prepare a meal at all.
Esther knows where her clothes are stored and can read the labels her husband has put on the drawers, but she won't get her clothes out. If he gets them out, she can dress herself. Esther is not being difficult, she has lost the ability to visualize things she cannot see, so that even though she knows where her things are, she cannot get them herself.
John has begun urinating out the open windows. When his son took him to task he answered, "Why not? It's my house." Has John developed a perversion? Is he being difficult? Although he knows he needs to urinate, he knows where the toilet is, and he knows the neighbors are offended by his behavior, one small link in the complex process of judgment has been destroyed by the disease.
Mike has considerable difficulty making himself understood but no difficulty at all cursing his wife and the woman who comes in to help. Is this anger at his disease? Is it part of Mike's life-long behavior style? Neuropsychologists tell us that the disease itself can cause the brain to produce cursewords when the person intends more pleasant ones. Mike may have insight into this - he might know what is happening and be terribly embarrassed, or he may not - he may believe that what he is saying is pleasant and be indignant at his wife's "unfounded" accusations.
Insight remains in some people early in their illness, in others it is lost early. Feedback about one's behavior is similar. Some people know they suffer from dementia and can be quite depressed. They may respond by wanting to share with others what it is like, or by wishing to talk to their family members before it is too late. Others insist that they are fine, that they are not having car accidents or leaving the stove on or getting lost. One woman's daughter made her look inside her refrigerator. Yet she absolutely insisted that the rotten food they both could see was not there. This is not denial, the brain is providing false feedback -it is telling the person she is doing fine despite the sensory information to the contrary. Arguing with her will only upset and frustrate her, making her feel that you have turned against her for no reason.
Many things can be lost:
・ The ability to start - Mary cannot get up and join the singing even though she wants to
・ The ability to stop - Ann will keep dusting the same table and never move on to the next
・ The ability to plan - getting from the bedroom to the kitchen re-quires that Janebe able to plan her route, past the bathroom, down the hall, into the dining room
・ The ability to learn - Alice dumps her plate of food on the floor and berates her daughter-in-law. Her daughter-in-law responds by ignoring the food, the verbal tantrums, and by not giving her mother-in-law any more to eat. If this were the behavior of a child, after going without a meal a few times, the child would learn that this behavior does not work. Alice cannot learn, so this strategy will not help. For Alice, there was too much noise and confusion in the room and too many items on the plate to choose from. Her reaction to too many stimuli was to throw her plate. The problem was solved by letting her eat at a quieter time and with fewer choices.
・ The ability to perceive everything at once - When all five of John's daughters visit, he ignores two of them, not because he does not like them, but because his brain can no longer perceive five people at once.
The person's ability to regulate and modulate mood may be impaired. These people can switch abruptly from crying to laughter or they may be unable to control the violence of their anger.
There are hundreds of these distinct areas that can be lost and each person with dementia loses somewhat different skills. The pattern of language loss early in Alzheimer's disease varies: some people lose nouns, others have serious impairments in the ability to make themselves under-stood, others, like Vera, express themselves well despite other significant losses.
Many skills, like memory, are really several skills. Long term memory is characteristically retained longer than short term memory, and memory for emotions may be retained longer than for facts. Jane remembers she is angry with a certain staff person, but has no memory of the reason why.
While Vera cannot prepare her supper, we can't get Jane to stop trying (and Jane is leaving the stove unattended). While John is urinating out the windows, many people retain their sense of what is socially acceptable. To make it more confusing Vera can prepare her meal some-times on days when her brain is at its best. Yet we do not know why it fails on other days.
Some of these things: variation between patients. Variation from day to day, skills that seem similiar (if he can get the window unlocked, surely he knows better than to urinate out it), skills that seem obvious (how could you not find your way to the bathroom) trick families and professionals into expecting things of their patients that the patients can-not do. And it is very difficult to know, with a specific client, which things are within her capacity.
A thorough assessment, which includes neurophsychological testing, tells us which disabilities are lost and which are retained in an individual patient. In the United States this detailed information is not available on most patients, and the clinicial must do her best with what she has. The devastation of a dementing illness, particularly for the person in the early stages is so great, and so painful, that we must seek to spare her the further pain of not being understood. For her sake, we must expect that most of the peculiar things we observe are the result of the disease process in the brain, not the result of willfulness, laziness, stubbornness or per-version. To do so will alleviate anger, frustration and despair, and make life with the disease a little easier. The person with dementia is almost always doing the best he can.
Recognizing impaired functions helps us to find ways not to place demands on things the person cannot do. Recognizing the individual's spared functions allows us to help the person remain independent, and feel successful.
Vera's social functions remain intact. She had a great visit with her old friend Nancy Mace without revealing that she was "getting like her mother".
Leaving her drawers slightly open enabled Esther to dress independently.
Only two daughters visiting at a one time allowed John to enjoy his family and joke with them the way he used to.
4. SUPPORT OR RESTORE POSITIVE FEELINGS
Imagine getting up in the morning and finding that your hands have forgotten how to wash. You can't find the breakfast table. Someone serves you breakfast but what they set down in front of you is not what you wanted. After breakfast you sit down in front of the television, but you can't make any sense out of it. You would like to get up and begin the housework but somehow you can't. Eventually a stranger comes to bathe you. You know you can bathe ourself and you know you do not need help, but she bathes you anyway.
By this time you must be feeling depressed, angry and frustrated, and before long you will be tired from your efforts to cope.
The person with dementia no longer has control over the simple aspects of life - washing, choosing a meal, deciding what to do next. The normal business of living, when compounded by dementia, will make people feel angry and depressed, even when staff and family provide expert care. The disease takes away a person's sense of personal dignity and self worth, control of day to day life, independence and self esteem Nor-mal responses to these losses are anger, withdrawal, apathy, resistance, fear and frustration.
The disease also takes away ordinary relationships with others. The person cannot make herself understood, or she cannot remember visits. She may forget what she said to family members. - Imagine not remembering what you said to that son you don't get on with too well. Imagine living with a spouse who seems always to be tired and depressed as caregiving spouses often are. People with dementia don't get out, or if they do, the people they meet seem to be strangers every time they meet them. Old friends are sometimes too uncomfortable to visit. In a normal situation no one spends all day every day with one's spouse -one goes out, one's spouse goes out. When a person has dementia, she stays with her spouse all the time - just as trapped as the spouse. And her loved companion seems cross and tired and always telling her what to do.
People with dementia are struggling to cope with the world as they perceive it. Thinking that one must return to a long-remembered place, sensing that one is making mistakes or that one is losing one's mind, even being certain that one is succeeding, but that everyone else is accusing one of stupidity and clumsiness - these feelings lead to wandering, angry outbursts, apathy, or stubborn uncooperativeness.
The primary goal of care for people with dementia is to find ways to return dignity, self esteem, control over one's life, maintenance of family ties and friendship to the person. As we succeed in restoring these positive feelings, behavior problems will decline. However, the brain damage, even in the early phases of the illness, is complex and devastating and works against us in our efforts in restore positive feelings.
We have many tools to do this. Some behavior problems go away as the carer learns to view them as brain damage and to accept them. Dusting the same table over and over, not selecting the right clothing, or not being able to visit with all five daughters, are only problems in the eyes of the carer.
We look at the person's whole day. There will be many things we cannot change - the person must spend time with strangers, the spouse will continue depressed and tired, the bath cannot be avoided. But if there is no way to make the bath dignified having a neighbor come over to play a game of checkers (by somewhat confused rules) provides a way to let the person feel in control again.
Our understanding of the nature of the brain damage improves our success rate. Mary cannot set the table or prepare a meal. but she can lay out the forks or peel the vegetables. A letter written by a visitor can remind the confused person that there was a visit and what went on -thus sustaining the relationship between visits. Restructuring visits - fewer guests or a meaningful task for patient and visitors to do together (washing hand laundry, window shopping), helps visitors relax, reduces the dependence on verbal communication (where many people are impaired) and allows everyone have fun.
We avoid demands in areas in which the person will fail and we avoid conflict if possible. People with dementia usually have appropriate feelings and may remember feelings much better than they remember facts. Thus failures and struggles increase negative feelings.
Janet fought bitterly against her bath. When her carer changed to sponge baths, her mood became more relaxed and cooperative for the remainder of the day.
Usually the ways we can help are small - small choices, small tasks, five minutes with a friend. If we must struggle with a patient, or prevent an activity. we balance that with a few positive moments. Early in the illness, most people retain a sense of humor. Using humor improves life quality for both carer and patient.
There will be many things we cannot change. The disease itself is devastating and we can only partially compensate for its damage. How-ever, individual, small interventions based on our understanding of this person's areas of spared and impaired cognition and designed to restore positive feelings, make a significant difference in the persons quality of life and reduce problem behaviors.
5. CREATE A HUMAN AND PHYSICAL ENVIRONMENT WHICH SUPPORTS REMAINING FUNCTION AND MAKES PEW DEMANDS ON LOST FUNCTION
As I have discussed, we use the physical environment to support sensory function. We also use the physical and interpersonal environment as a tool to support remaining cognitive function and to restore dignity. self-esteem, relationships. success and independence.
This cannot be done by introducing novel gadetry. A shower system that is easier to use but unfamiliar to the person with dementia will in-crease his disability and heighten his anxiety because he cannot learn even simple or obvious new things. The environment must be familiar.
The physical environment should support spared functions and make no demands on lost functions, bot it must do so in a way that appears normal to the confused person. For example a large room, full of clutter and with lots going on may seem normal to us, but will overwhelm a person with dementia. A smaller, quiet room with less clutter will be therapeutic and is more likely to be perceived by the damaged brain as normal.
People in the early phases of their illness can often use environmental cues. Signs on drawers, rooms and cabinets will help many people, but some will have lost the ability to act on what the signs say. Then, instead of being helpful, labels convey the message, "you are stupid". My friend Vera, touching the signs on her kitchen and her door said. "I guess I have to have these but they make me feel like a child." Thus individualization is essential.
People who are early in their illness may be able to go out onto the street and shop, get their hair done, chat with shopkeepers. We may need to arrange payment for goods, explain to shopkeepers what is wrong and how to react. The person must wear a bracelet with his name and the telephone number of a carer.
The environment can purposefully provide meaningful things to do -dusting, preparing vegetables, washing dishes, polishing, raking.
There are often considerable risks involved in allowing a person with dementia to remain independent and to sustain self-esteem. People who still cook may start fires; people who go out are at risk of becoming lost, injured or robbed; people who continue to drive place themselves and others at risk. As the disease progresses, falls become a concern. There is a significant increase in accidents when people with dementia drive, and these accidents carry a high risk of severe harm to the person and to others. I recommend that driving be discontinued. Each of the other risks must be assessed on an individual basis. It is important to know what the real risk is - will this person really become lost? Can help be arranged among neighbors? Only when these factors are known can we weigh the risk against the real harm of lost self esteem and independence. As the disease progresses, the risks must be reassessed.
6. PROVIDE ADEQUATE POSITIVE STIMULATION WHILE REDUCING STRESS
People with dementia are very vulnerable to stress. When they are under pressure or upset they think even less well than they usually do. Noise, too many people, and confusion around them are common stressors. The false messages the brain sends the person also create stress: struggling to do a task one can no longer do, struggling to return to a home or place of distant memory, struggling to conceal ones failings _ all these are stressors. Very minor stress results in angry or tearful emotional out-bursts, stubbornness, or even hitting. These outbursts are termed catastrophic reactions. Catastrophic reactions constitute many of the behavior problems reported by families and staff. They also reflect extreme distress on the part of the person with dementia. Their management is essential to quality care.
Expert staff treat catastrophic reactions by preventing them before they begin. Our interactions prevent many problems: we avoid rushing the person, we train ourselves to avoid any patronizing or condescending tone of voice or posture, we treat even the most impaired with respect and dignity. This is extremely difficult for all trained and dedicated staff. It may be impossible for the family member who is angry and depressed. Adequate support for both the staff person and the family - and for the family, time away from caring - are as important as training in creating a positive and supportive environment.
We reduce even trivial stressors - offering fewer choices, less noise, less confusion, allowing more time for the person to react. We take care that the person is not placed in situations in which she will fail - tasks are broken down so that she can succeed.
The staff person offered Ann a choice of two dresses because selecting from the closet overwhelmed her. Then, taking plenty of time, the staff person gently reminded her of what to put on next. Finally, the two of them admired Ann's appearance in the mirror and helped Ann to put on some lipstick.
At the same time that we protect the impaired person from stress, we must ensure that they have adequate stimulation. The damage to the brain and the safety measures we must take mean that many people are understimulated. Many problem behaviors are an effort to provide self-stimulation. The person with dementia sits in front of the television without comprehending it, she paces without achieving anything, she is present at the family visit without participating. She cannot initiate action so she sits all day, unable to reminisce or to look forward to the future, or even to plan her revenge on the nurses. She just sits.
Interpersonal exchange is the most important and effective way to provide stimulation. Pets and children also play key roles if the individual likes them. People with dementia enjoy music, the outdoors, tasks that make them feel useful and that they have always done. Religious observance they have always done is important. Most people in this generation are not comfortable with purely recreational activities and most cannot comprehend television (it requires cognitive skills that are usually lost). In general wall decoration or other static decoration. while contributing to a cheerful atmosphere. provide little stimulation. Decoration is best used for orientation, as conversation starters and to make a room the person's own. In conclusion the essential elements of dementia care are
・ Do a thorough diagnosis and assessment
・ Identity and treat excess disability
・ Understand the impact and nature of the brain damage
・ Find ways to support/restore positive feelings of dignity, self esteem, independence, control, mastery, success, friendship and family ties.
・ Create a human and physical environment which supports remaining function and makes few demands on lost function
・ Provide adequate positive stimulation and reduce stress
When we do these things we are improving the life quality of the person with dementia, and we are reducing the problem behaviors that bedevil staff and family carers.
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