Communication With Alzheimer’s Patients

images5By learning to improve communication with your loved one who has Alzheimer’s you can reduce stress in your life and improve the quality of the relationship with your family member. A good place to begin is by remembering that communication is always a two-way street. You are sending information signals to another person while at the same time receiving signals from the other person. Improving communication means not only changing what you say and how you behave but also doing a better job of translating the sometimes confusing signals sent by patients with Alzheimer’s, for whom language skills have declined. It is also useful to remember that the quality of an exchange with an Alzheimer’s patient is influenced by the context and by the emotions that come into play on your part as well and as on the part of your loved one. They will not only hear what you say, they will also read your face and when the signals do not match you may elevate the confusion level. So it is essential that we set a positive mood or any communication. You need to know what you are feeling so that you can in ensure that your body language and facial expression as well as your tone of voice send the right message. In this course you will learn how to improve your communication, based on the vast experience of many professionals who have worked with Alzheimer’s patients over many years.

Early versus Late Onset Alzheimer’s

There are some important differences between early onset and late onset dementia of the Alzheimer’s type, that influences the likely results of improving communication. With early onset, disorientation begins between the ages of 50 and 70 years of age. With late onset disorientation begins usually past the age of 80. In early onset, the disease is progressive and in the end leads to death. In late onset the pattern is not always progressive and does not always end in death. Speech declines in an early onset while in late onset speech remains largely intact. Walking is often stiff and robot like in early onset and is more dance like and purposeful in late onset. In late onset, facial expression and overall emotional expression is highly varied. Whereas in early onset, there is a mask like expression and very little emotion. More importantly with in early onset there is less and less expression of emotions while in late onset, the patient expresses a full range of both positive and negative emotions. Improvement in our knowledge of communication styles and methods are more likely to achieve positive results with late onset than with early onset. However it is important to keep in mind that, although many of these methods were developed with Alzheimer’s patients, they can be of benefit with other types of dementia. Trying to improve communication patterns with early onset patients can be beneficial but will require greater patience.

Naomi Feil and Validation Therapy

Naomi Feil was the creator of a unique approach to working with patients with Alzheimer’s and other related disorders. Her approach has come to be called Validation Therapy. She is the Executive Director of the Validation Training Institute in Cleveland, Ohio. She earned her MSW from Columbia University and has studied at the new school for Social Research, Case Western Reserve University and the University of Michigan. Early in her work as a gerontologist she became dissatisfied with traditional methods and thus began to develop methods of her own to improve success. Her book the Validation Breakthrough: Techniques for Communicating with People with Alzheimer’s type Dementia was a major development in improving care for these patients. She is now internationally recognized and more than 7000 facilities in Europe, the United States, Canada and Australia have adopted her methods. Those methods now are being taught to families and we will introduce those methods in this course. The best way to begin is by defining validation, which is acknowledging and accepting the emotional reality of another person in a nonjudgmental way. We are not requiring that they adopt our reality, rather we are trying to better understand their view, even if that view is influenced by illness. The two active words in the definition are acknowledging and accepting. Acknowledgment is required in order to communicate understanding and acceptance is required in order to avoid being judgmental.


Managing Behavior in Dementia Patients

images1All behavior is triggered by something. It does not come out of the blue. Therefore the first thing to consider is what happens before the behavior takes place. Some people find it valuable to keep a notebook in which to enter observations. The simplest way to make observations is to note in your notebook what happened before the behavior, describe the behavior that concerns you and then note what happens after the behavior. It may be that some change in the physical environment, that you may not even notice, causes confusion. It may be something you said or something someone else said that triggered the behavior. Once you know that, changing those antecedent conditions may suffice. It also may be that the behavior produces certain consequences and changing those consequences may suffice. However keep in mind that what works today, may not work tomorrow. Troubling behavior is often influenced by multiple factors and so the key is to be flexible. Your loved one will have good days and bad days and so will you. That is one reason why you’re behavioral notebook can be a valuable asset. You should keep it each and every day, not just when troubling behavior occurs, but also when it is not occurring. You may learn a lot from the conditions that are described in your notebook, on days in which few if any problem behaviors occur.

Wandering

Patients with dementia may very well wander for a variety of reasons including boredom, medication side effects or because they are looking for someone or something. They may be trying to fulfill a biological need like thirst, hunger or the need to use a toilet. Since people are built to move around, they may be walking, quite simply, because they need the exercise. So we should make time for regular exercise each and every day and not expect them to sit is in the same place or lie in bed for hours and hours. If you are concerned that they may wander away and harm themselves consider installing new locks that require a key. You may position the locks high or low since often dementia patients will not look beyond eye level. You may want to consider a barrier like a curtain or simply place a stop sign at the door. Some people have found that placing a black mat or even painting a black square on the front porch, may stop the patient, since it may appear like a hole. You can use child safe plastic covers over the door knob or if your loved one will not go out unless they have a coat, a purse or glasses you may want to put those away. Be sure to tell your neighbors about the risk of wondering and make sure they have your phone number then tell them call you immediately. If you can afford it consider a home security system that will respond to movement and sound an alarm. New digital devices that use global positioning systems can be a valuable backup enabling you to immediately locate your loved one. You may also want your relative to wear an ID bracelet.

Incontinence

As dementia progresses there may be a loss of bladder or bowel control. At times accidents may result from environmental factors, such as the patient not being able to remember the location of the bathroom, or they simply cannot get to the bathroom in time. While memory is impaired, the sense of dignity on such occasions is not. It can be a major source of humiliation. If an accident occurs your understanding and your reassurance will be needed. The best course is a plan that will allow you to avoid such circumstances. You can use signs marking the route to the bathroom and to indicate which of the doors is the door to the bathroom. Establish a routine for using the toilet. Try reminding the person, and assisting her to the bathroom every two hours. Carefully control fluid intake and limit fluid intake in the evening before bedtime. Keep in mind the risk of dehydration and avoid drinks with a diuretic effect like coffee, tea, Cola or beer. A commode, which can be obtained in a medical supply store, can be left in the bedroom at night to ensure easy access. Incontinence pads and products can be purchased at a pharmacy or at the supermarket. A urologist may be able to prescribe special products that can be of help. You should use easy to remove clothing with elastic waist bands or Velcro closures and clothes that are easily washable.

Agitation

Agitation refers to a range of behaviors associated with dementia including sleeplessness, irritability and verbal or physical aggression. Often these behaviors increase as the disease progresses from mild to more severe. The need for control continues, in spite of dementia, and often agitation is triggered when a person feels like control is being taken away. A good place to begin with your family member is to reduce the intake of caffeine, sugar and junk food. Reducing noise and clutter can be helpful and often, having too many people in the room, can be a triggering event. Unfamiliar things can be a trigger while familiar objects and photographs may offer a sense of security. A gentle touch, soothing music or going for a walk can often quell the agitation. Only speak in a reassuring tone of voice and beware of trying to restrain the person since this can result in panic and even more dramatic agitation. Be sure to keep dangerous objects well out of reach to avoid the risk of impulsive acts. Confrontation may actually increase anxiety, and, thus increased agitation. Acknowledge the frustration with loss of control. Often the best way to deal with agitation is distraction. Offer a snack or some kind of preferred activity. By encouraging as much independence as possible we reduce the likelihood of agitation as a product of diminished sense of control.

Sleeplessness and Sundowning

Disorientation, restlessness and agitation often get worse at the end of the day and may even continue throughout the night. Experts call this behavior pattern sundowning. It is caused by a combination of factors such as exhaustion from the days events, changes in the patient’s biological clock and resulting confusion between day and night. Often increasing daytime activities including physical exercise and discouraging inactivity and napping during the day, can be most helpful. It is useful to eliminate or restrict caffeine, sugar and junk foods too early in the day if at all. Plan smaller meals throughout the day and a very light meal, such as half of sandwich, before bedtime. Late afternoon and evening activities should be quiet and calm. However, structured and quiet activities such as a stroll outdoors, a simple card game or listening to music can be helpful. Turning on the lights well before Sunset and closing the curtains will minimize shadows and perhaps reduce confusion. At a minimum, keep a night light in the person’s room, in the hallway and in the bathroom. Block off stairways with gates and put away dangerous items. As a last resort, consider talking to the doctor about medication that would help your family member relax and sleep. We say as a last resort because sleeping pills and tranquilizers may solve one problem and create others. For example the patient sleeps at night but is more confused the next day.

Bathing

People with dementia often forget essential grooming activities. As children we are taught that certain activities are highly private, are to be undressed and cleaned, even by another family member, can be embarrassing and humiliating. As a result bathing is often a source of major distress. Begin by recalling your family members historical hygiene routine. Did they take baths or showers? Were they in the morning or at night? Did she have her hair washed at a salon or did she do it herself? Was their favorite scent, lotion or talcum powder that was always used. To the extent possible adopt the past bathing routines, because the familiarity will be calming. If your loved one has always been modest accommodate by making sure doors and curtains are closed. Whether in the shower or the bath keep a towel over the front of the body, lifting it to wash as needed. Always have towels and a robe nearby and ready immediately when they get out of the shower or tub. Notice the environment including room temperature and water temperatures. Older adults are more sensitive to both heat and cold. Nonslip floor bath mats, grab bars and bath or shower seats can be most helpful. If possible install a hand-held shower to give more control to you and the patient. Older people are often afraid of falling so help them feel secure. Never leave a person with dementia unattended in the bath or shower. Have all the things you’ll need laid out beforehand. If you draw the bath water first you can reassure the patient by pouring a cup over the hands before they step in. If the tub or shower is consistently traumatic a towel bath maybe considered. This uses a large bath towel and washcloths dampened in a plastic bag of warm water and no rinse soap.

Validation

controlBy learning to improve communication with dementia patients can avoid challenging behavior. A good place to begin is by remembering that communication is always a two-way street. You are sending information signals to another person while at the same time receiving signals from the other person. Improving communication means not only changing what you say and how you behave but also doing a better job of translating the sometimes confusing signals sent by patients for whom language skills have declined. It is also useful to remember that the quality of an exchange with a patient is influenced by the context and by the emotions that come into play on your part as well and as on the part of the patient. They will not only hear what you say, they will also read your face and when the signals do not match you may elevate the confusion level. So it is essential that we set a positive mood or any communication. You need to know what you are feeling so that you can in ensure that your body language and facial expression as well as your tone of voice send the right message.

Naomi Feil was the creator of a unique approach to working with patients with Alzheimer’s and other related disorders. Her approach has come to be called Validation Therapy. She is the Executive Director of the Validation Training Institute in Cleveland, Ohio. She earned her MSW from Columbia University and has studied at the new school for Social Research, Case Western Reserve University and the University of Michigan. Early in her work as a gerontologist she became dissatisfied with traditional methods and thus began to develop methods of her own to improve success. Her book the Validation Breakthrough: Techniques for Communicating with People with Alzheimer’s type Dementia was a major development in improving care for these patients. She is now internationally recognized and more than 7000 facilities in Europe, the United States, Canada and Australia have adopted her methods. The best way to begin is by defining validation, which is acknowledging and accepting the emotional reality of another person in a nonjudgmental way. We are not requiring that they adopt our reality, rather we are trying to better understand their view, even if that view is influenced by illness. The two active words in the definition are acknowledging and accepting. Acknowledgment is required in order to communicate understanding and acceptance is required in order to avoid being judgmental.

The basic steps in a validation exchange are:

  1. Centeringwhen a challenging behavior occurs it is usually in the context of stress and the encounter between the staff and the patient can be full of stress.  Therefore it is important that those caring for the patient prepare for the exchange.  If we are extremely tense when we try to talk with the patient who has dementia we may find that they respond more to the emotions we present into the content of what we say. We should begin by using deep breathing and relaxing are muscles.  Sometimes thinking of our favorite color or our favorite relaxing music along with the deep breathing can be quite sufficient.  This takes only a few seconds but can make a big difference.
  2. Observe- it is important to observe the patient with some care before beginning an intervention.  That means looking at the whole person from the hair to the feet. We should look carefully at the eyes, the forehead, lips, jaw and mouth. The facial expression is very important it can tell a great deal about the internal events associated with challenging behavior.  We should ask ourselves what is this facial expression saying about what they are feeling?
  3. Find appropriate distance we all have territory or space around us into which we do not like others to intrude. If our movements are slow and methodical there is time to let the patient tell us about the space they would like between us and them.  At times of stress the preferred space may be expanded so we need to avoid lurching at the patient which can be threatening and provoke behavior that will become troubling. As we approach the patient we should be sure that we can see their face so that we can immediately see their reaction. Approaching the patient from behind on the side is particularly risky.  We should look carefully at the face before we do anything else.
  4. Find empathy try first to connect with what the patient is feeling at the moment.  Is it anger?  Is it fear?  Is it simply confusion? One way to make that connection is to actually try to match our own facial expression to the facial expression of the patient. It is actually a very natural events that occurs in social interactions all of the time.
  5. Communicationuse appropriate methods of verbal and nonverbal communication. Ask simple questions and use gestures appropriately.  We have to be very careful about questions that involve memory, particularly short-term memory.  When the patient is unable to recall they become frustrated and this may lead to agitation and challenging behaviors.  Never ask why. Use touch as part of the communication but be sure you can see the patient’s face the judge their reaction and never touch patient who does not want to be touched or who is already upset and agitated.  It is useful to recall that a touch on the cheek is equated with the mothers touch and that option is only available for women staff.  A touch on the top of the head is perceived as the fathers touch but the safest option for male staff is a touch on the shoulder which is brother/sister touching. Touching can be reassuring but when a patient is already agitated it should be avoided.
  6. Emotional exchangethe most important part of the validation episode is the acknowledgment by the caregiver of the emotion the patient may be experiencing. We should be observing carefully the facial expression and body language of the patient in order to make accurate inferences about what they are experiencing. The best test for a caregiver is to try to match in themselves the emotion the patient may be experiencing and then  acknowledge verbally by saying:
    1. It seems to me that you are sad.
    2. It seems to me that you are angry.
    3. It seems to me that you are somewhat fearful.

Whether you hit the emotion precisely is not as important as the effort to do so. Once we have acknowledged the emotion we simply say that no matter what they are feeling we just want to be of help.


Chronic Illness and LTC

control3Our healthcare system is based on an acute care model. One germ and one cure. The doctor and technology are in control and the patient is the passive recipient of pharmacological miracles and technology triumphs. However, according to the Centers for Disease Control and Prevention, 70% of all deaths in the US are due to chronic disease and the top four are cardiovascular disease, cerebrovascular disease, cancer and COPD. Of those over the age of 65 it is estimated 85% have one or more chronic diseases. If you are a psychologist working with geriatrics in Long Term Care you are working in the context of chronic conditions. LTC is no place for the Cartesian myth that the mind and body are separate. Rather clinical success depends on en embodied mind.

So what is a chronic disease? A chronic disease does not have a single cause, specific onset or stable symptoms. The course is marked by exacerbations and remissions in symptoms. Unpredictability is the rule. Treatment requires biopsychosocial interventions with coping, self-management and palliative care.

There are four types of chronic illnesses (Sperry, 2006):

·Life-threatening diseases such as fast growing cancers, stroke or heart attacks.

·Manageable diseases like diabetes, hypertension, osteoarthritis, chronic sinusitis

·Progressively disabling diseases like Parkinson’s, lupus, RA and multiple sclerosis

·Those not life-threatening but with waxing and waning course like fibromyalgia and chronic fatigue syndrome

Other important distinctions between acute and chronic illness include (Cummings et. al., 2005):

·Acute illness onset is abrupt and CI is gradual

·Acute illness is time limited and CI is indefinite

·Acute illness tends to have a single cause and the causes of CI are multiple and changing

·Acute illness prognosis is accurate and the prognosis in CI is uncertain

·Technology is effective in acute illness and indecisive in CI

·There is a cure for acute illness but rarely a cure for CI

·Uncertainty is pervasive in CI

·Professionals have the important knowledge in acute illness and both the patient and professionals have complementary knowledge in CI.

Patients who are told they have a chronic illness usually start with a crisis as they try to answer questions like these:

·Will I be incapacitated?

·Do I face a life of pain?

·Can I make the changes they ask?

·Will I be dependent and a burden?

·What will be the impact on my family?

·Will I be able to do the things I enjoyed?

·Will we be wiped out financially?

·Will I be isolated and alone?

·Is this all my fault?

·Is there a God?

·Will I live?

Since cures are rare in chronic disease the best outcome we can expect is adjusting to the illness and disability. There seems to be a pattern that most patients follow. There seem to be phases of recovery that most patients share.  Patricia Fennel (2003) who authored Managing Chronic Illness: Using the Four Phase Treatment Approach, describes four phases:

  • Crisis
  • Stabilization
  • Resolution
  • Integration

Kenneth Sharoff (2004) who practices in Maryland and who authored Coping Skills Therapy for Managing Chronic and Terminal Illness describes five phases:

  • Crisis Phase
  • Post-crisis Phase
  • Alienation Phase
  • Consolidation Phase
  • Synthesis Phase

Both agree that patients may move through the phases at different rates and that patients may return to an earlier phase. In fact without intervention a patient may return often to the crisis phase.

During the crisis phase patients must mobilize support, learn to manage discomfort, preserve a sense of identity and begin to learn how to deal with suffering. The diagnosis is associated with unstable emotions. The best approach for the psychologist during this period is to engage in crisis intervention with the patient and the family. Educational efforts or lifestyle change tends not to take during the crisis.

During the post-crisis or stabilization period the patient may very well try to return to pre-illness patterns and failure in that may lead to a return to the crisis phase. The basis goal in this period is to restructure life patterns and perceptions so they can move on with the illness as part of their life. Sharoff (2004) identifies a phase called alienation during which there is a high level of anxiety and anger that expresses itself in bitterness. However, not all patients seem to go through such a phase.

During the consolidation or resolution phase the patient must learn to manage limitations and find meaning. They must develop a new sense of self that is acceptable in spite of the illness and must develop a philosophy of life.

In the final phase of integration or synthesis the patient must meld the old self with the new self and yet as Fennell (2003) says: “…to experience a complete life in which illness is only one aspect…”  The person must unify the illness with a healthy identity.

In that context what is the goal of our intervention? According to Len Sperry (2006) “…the goal of Biopsychosocial therapy is to achieve integration of the chronic condition as part of a healthy sense of self…the highest level of wellness possible while living with a progressively degenerative or life-threatening illness.”

One of the most frequent reasons for failure and frustration in combining Behavioral Medicine with psychotherapy is bad timing and poor teamwork. By considering the phases of chronic illness we can improve our timing and by recognizing the importance of all three domains we can improve our teamwork.

In no area of healthcare are the skills of psychologists needed more than in the area of chronic disease. Psychology can play a major role in addressing the crisis in healthcare costs, that will become steadily worse in the decades to come. Only when medicine recognizes the role of emotional and cognitive factors can we improve the services to a sufficient extent that there is less demand for the most expensive services.

Quality of Life in Long Term Care

images The overriding goal in long term care should be to improve the quality of life for residents and a major feature of quality living is psychological well-being. There are two sets of factors that must work hand-in-hand to produce psychological well-being. One is the quality of care provided. These are the processes of care that are the focus of most quality programs. Another set of factors, however, too often ignored are the quality-of-life factors that take into account what the residents actually bring to the equation. For example, coping patterns help residents preserve their individuality and spite of declining health. We will apply a developmental theory called selective optimization and compensation and discuss how a greater understanding of how older people adapt to the changes of aging can serve to refine quality of care strategies. Research in Positive Psychology suggests at least 16 specific factors that seem to influence a resident’s is subjective sense of well-being.

Quality Care and Quality of Life

In many cases quality care patterns have a direct impact on resident quality of living. A safe and timely pattern of care with can lead to a sense of security. Technically proficient healthcare can lead to optimal health and increased levels of functioning. Personal attention and individualized care programs that engage the individual in their own care lead to a sense of autonomy and self-determination. Patterns of care which are respectful of individual needs and values into affirm personhood and reinforce the continuity of the self concept. A higher-quality life comes from recognition by caregivers of individuality as does respect by caregivers to the right to privacy. Even for dementia patients there needs to be continuity with the past and respect for the continuation of social roles important to the individual earlier in life. People are not constituted in a way that allows them to lie in bed hour after hour, day after day, week after week, month after month as the months turn into years. An environment must provide opportunities for activities appropriate to age and skills no matter what the disability.

Preservation of the Self

Sheldon Tobin in his book Preservation of the Self in the Oldest Years points out that those who design and long-term care must take into account the way older people, particularly those over the age of 85, strive to cope with the stress of changes that threaten their sense of self. He divides the coping methods into two classes: rational coping techniques in less than rational coping techniques. The preservation of the sense of self is served by ensuring residents are involved in affirming meaningful activities. They need to have at least a measure of control over daily activities and over social interactions. In too many nursing homes neither of these is the case. He points out that successful coping with the challenges of advanced age involves a contraction of one’s personal space, sense of time and the numbers of people with whom one has significant relationships. However contraction cannot mean elimination and providers of care in LTC must realize this. For example, a couple may have traveled widely and sailed all along the East Coast in earlier years but now must confine their travel to radius 60 miles from their assisted living facility. But travel they can. At the age of 30 that are decades of future ahead at the age of 85 the future is a matter of years at best. In earlier years a person may associate with hundreds or even thousands of people but in the older years associations may be restricted to family and only the closest of friends. Such constrictions are appropriate ways to cope. However, Tobin also points out that are less rational coping techniques. The older person may deny reality completely. Is as an example they may continue to believe in their driving ability well beyond the point at which they should recognize this limitation. Under stress the older person may become more aggressive because this gives them the illusion of continued control. When that is the case punishment of the aggression only leads to more aggression. The older person may blame others for things other than admit to themselves that they are vulnerable. There’s no better example of this in the dementia patient who blames thievery by staff for items they have misplaced or lost. In short older people will go to great lengths to protect their sense of self.

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Psychological Well-being in Long Term Care

1CAZTDX1XCA8TGV3XCAXCMGOCCAUQURP6CAYOPBNCCAA3S21JCAYGF3E5CAE1L2H5CA045SYOCAMDUYDHCAUKL4XCCAM6GH54CA6AV60NCABXCFSSCAZWYG05CAHBT6ENCA0PQ8EHCAU7TPT6CA4JGI6B Psychological well-being is a subjective point of view defined as person’s cognitive and affective evaluation of life. The dimensions of well-being include a balance between positive and negative affect. Affect is a psychological term for emotions. Negative affect involves such emotions as anger, fear and depression. On the other hand positive emotions include such things as joy and happiness. How much time in any given day we spend feeling depressed needs to be balanced with time feeling happy. If more of our day is filled with positive emotions than with negative we have a sense of subjective well-being. Well-being is also dependent on how well we meet our fundamental human needs. That includes basic needs like food, shelter and safety. There can be no sense of positive well-being if we feel hungry or fear for our safety. However, given that those needs are met higher level needs like autonomy and self-esteem become important to our sense of well-being. It also seems very important to our sense of well-being that we have a purpose. For the oldest among us it is just as important to have goals even though it may be necessary to limit those goals as we age. Careers are behind and there is increasing limitation on the pursuit of wealth. However, those with a sense of positive well-being continue to set goals and pursue those goals. Activities also seem very important as dimensions of psychological well-being. There may be some constriction in the options available; however, activities within the framework of current skills can make a great difference. For example, one patient of mine in a nursing home and only the use of his upper body. However, to help of his family he arranged an entire world all within the reach of his own arms. Finally, optimism and hope are essential elements for a positive sense of well-being.

Paul Baltes of the Max Plank Institute for Human Development in Berlin and his wife Margaret Baltes of the Free University of Berlin have conducted extensive research on what they characterize as ‘Successful Aging’ and they have proposed that success is in part dependent on the selection process in which strengths are optimize in older people learn to compensate for losses in appropriate ways. For example, they become more discriminating in the choice of activities while which to spend their time and energy. Interactions with family become increasingly important in that may restrict themselves to a few real friends other than a large number of acquaintances. Optimization involves building resources needed to cope through self-education and continued learning. For example memory skills training can help in compensating for some of the losses that are associated with aging. Compensation involves doing whatever is needed to mitigate limitations and losses. Visually impaired older people use reading machines which magnify the written word. If they cannot read that can begin to listen to audio books. To avoid falls they can learn to use a walker, a wheelchair or a cane. To the extent that quality care processes facilitate selective optimization and compensation residents in long term care are more likely to experience a positive sense of well-being in spite of losses.