HOW DEMENTIA IMPACTS BEHAVIOUR

In the initial stages, patients appear so normal that people around them forget that they are suffering from a disease that has affected their brain. While theoretically people know that the patients have a disease, they do not correlate the apparently inconsistent or inconsiderate behaviour of the patients with the disease. Caregivers may assume that the patient is being uncooperative or stubborn or just not trying hard enough, and therefore get irritated or sad or angry. Patients sense this emotion and this, too, affects their behavior.

The intention of this page is to give caregivers some idea on how behavior is impacted by problems that dementia patients facing.  It is by no means an exhaustive list; it only aims to help caregivers orientate themselves to dementia behavior so that they set realistic expectations and can think of ways to handle behaviors that could harm the patient and others around them. 

• The brain gets damaged in dementia
• How dementia affects the ability to do things
• How dementia affects the emotional state of the patient
• What caregivers can remember about dementia behaviour

In order to see how dementia affects behaviour, we need to understand that the diseases that cause dementia affect the brain, and that the patient’s problems occur because of these organic changes to the brain.

The brain is a very complex organ, with billions of cells (neurons) that communicate with each other so that we can do things. Different parts of the brain perform different tasks. Dementing diseases affect the brain. The parts of the brain affected, and how the damage increases over time, depends on the disease causing the dementia. Image on left courtesy of : National Institute on Aging/National Institutes of Health

The damage to the brain increases as dementia progresses. The damage may become more severe, and more areas of the brain may also get damaged.

To illustrate the increasing damage to the brain, the image panel below uses images of brains of patients with Alzheimer’s Disease, the leading cause of dementia (Coutesy of National Institute on Aging/National Institutes of Health).

Images showing Pre-clinical Alzheimer’s Disease, Mild Alzheimer’s Disease and Severe Alzheimer’s Disease

   

   

HOW DEMENTIA AFFECTS THE ABILITY TO DO THINGS:

	Explanation	Impact on behaviour
Image courtesy: National Institute on Aging/National Institutes of Health	Different patients have damage in different parts of the brain. When the disease progresses, it may affect different parts in different people.	Different patients will face different types of problems. For example, some may have more problems walking, while others may have more problems while speaking. Over time, the patient’s ability to do things will get worse.
Image courtesy: National Institute on Aging/National Institutes of Health	As dementia progresses, the damage to the brain increases. More areas of the brain may get impacted.	Visible symptoms increase depending on the areas of the brain affected, and the severity of the damage. As more and more parts of the brain are impacted, the patient’s ability to perform activities of daily living keeps decreasing. Communication is often impacted. Memory loss is common in many types of dementia. Major personality changes are seen in some types of dementia. There is an overall deterioration. In the final stages, the patient is fully dependent and often unable to communicate.
	Every task we do has multiple steps. Inability to do any step results in inability to complete a task.	If the dementing disease has affected the patient’s ability to do part of a task, the patient will not be able to do that task independently and will need assistance.
	Every task requires coordination of various parts of our body and the ability to pay attention. Multiple parts of the brain have to function properly to perform this. For example, to light the gas stove, we need to position the lighter near the burner and click its button at the exact moment that we turn the corresponding knob of the gas stove. As dementia progresses, at least some parts of the brain required for this coordination and focus are likely to be damaged.	Patients will no longer be able to do complex tasks that require precision and coordination. Attempts to do such tasks are likely to lead to frustration or accidents.
	All of us have some fluctuation in our abilities over days, depending on our mood and health and energy. In dementia patients, we often find fluctuations in the abilities to do a specific task or remember something. Fluctuations in cognitive ability are particularly common in Lewy Body Dementia	To persons interacting with dementia patients, it seems strange to see the person able to remember something on one day, and not be able to remember it later. When they see the patient do something on one day and not be able to do it the very next day, people begin thinking the person is not trying hard enough. It is helpful to know that such fluctuations may be characteristic of their dementia.
	Often, patients get disoriented because of problems like loss of memories, visio-spatial problems, discomfort with too much stimulus or noise, inability to understand objects around them, etc.	This leads to multiple problems, such as The patient may wander and forget the way back home. The patient may consider himself/ herself as younger and expect a different home, and may not recognize the children and grandchildren, or mistake the daughter for the wife. The patient may keep insisting he/ she wants to go home. The patient may be anxious about not knowing where the toilet is.
	Patients often cannot communicate what they want. They may have problems remembering the right word, or may not know the meaning of words others use. They may not be able to frame sentences. Patients may also have problems knowing what they are feeling; they may not realize they are hungry or thirsty or hot or cold, or even that they are unwell or in pain.	They may not be able to tell caregivers what they want. They may not be able to indicate that they are unwell or are in pain. So their needs remain unfulfilled. This may also frustrate, distress, or anger them, even if they don’t know how to express it. If they are ill, their illness will affect their ability to do things, but caregivers may not understand  why the patient is acting differently today. Also, the caregiver may not realize that the patient needs rest/ treatment.
	In many types of dementia, recent memories are lost, and patients often revert to older memories, or (unconsciously) try to fill gaps in their memories using their imagination.	Patients cannot recognize people or places, and may not even recognize their home and family.
	Often, patients are unable to create new memories. They may also have problems understanding complex instructions or concepts.	This affects their ability to learn new things, use new devices, and adjust to new places. They may also get stressed when they meet new persons or see new things, and start avoiding such situations.
	In many types of dementia, the part of the brain that tells people how to interact socially is not damaged initially. This social interaction ability deteriorates at a slower pace in most patients.	Patients may cover up for memory loss and other problems by giving evasive answers, thus masking the problem in the presence of guests.
	In some types of dementia, people become disinhibited or are unable to behave in socially correct ways because the part of the brain that regulates behavior is damaged. The patient’s personality changes. Emotions may also get flattened and the patient may show apathy. Such problems are typical in behavior-variant fronto-temporal dementia.	Often, this leads to embarrassing situations where people may assume the patient has “bad character” or is inconsiderate and insensitive. For example, the patient may made rude remarks (even sexual comments), yell or abuse. Or the patient may laugh when others are crying. Or the patient may lose interest in everything and not show any reaction to emotions of persons nearby.
	In some forms of dementia, notably Lewy Body Dementia, patients may suffer from hallucinations. Delusions and paranoia are also present in some forms of dementia	Patients who hallucinate may sometimes realize they are hallucinating, but at other times, they may be confused or frightened because they believe what they are seeing or hearing. Hallucinations may make familiar tasks difficult when they cannot distinguish between reality and hallucination (for example, if they see a road split into four, they cannot drive). People near them may not realize that the patient is hallucinating and hence confused/ frightened. Delusions and paranoia also affect how the patient interacts with others. They may accuse people of stealing their possessions or even of trying to kill them. It is difficult to make the patient understand what is real and what is delusion, or to calm down a paranoid patient.
	Repetitive behavior and compulsive behavior are common in many forms of dementia. (this is also called ‘perseveration’). Such behavior may occur for many reasons, such as forgetting having said or done the thing earlier, boredom, anxiety, agitation, etc.	Common examples are the patient may say the same thing repeatedly, ask the same question, make the same gesture, do the same action, etcetera. Often, such repetitive behavior is harmless, but at times it may be problematic (like the patient insisting on eating breakfast multiple times) or even harmful (taking medication mutliple times) or exhausting (such as packing/ unpacking a suitcase or pacing). It can also be annoying or distressing for caregivers if they don’t understand it is happening because of dementia and don’t know how to cope with it.
	In many instances, dementia patients show changed behavior in the evenings/ night, called “sundowning”. While causes for such behavior are not fully understood, they are expected to be related to day time activities, exhaustion, body clock, food cycles, intake of liquid foods near dinner time, and so on.	Patients start acting agitated as evening approaches. They may be restless and start pacing. They may seem more agitated and anxious. Sleeplessness is another problem. They may walk up and down all night, mumbling or even shouting at times. All this can be very tiring for the patients and their caregivers.

HOW DEMENTIA AFFECTS THE EMOTIONAL STATE OF THE PATIENTS 

Dementia impacts the emotions of patients in multiple ways.

Some parts of the brain are responsible for processing and regulating emotions. If dementia has damaged these parts of the brain, the patient’s ability to regulate emotions is reduced. Also, parts of the brain are responsible for interpreting facial expressions to understand the emotions of others; damage to these parts will mean the patient may not know what others are feeling. Due to such problems, dementia patients may therefore seem apathetic or emotionally “flat.”

We behave in socially appropriate ways because our brain controls our behavior and emotions. Without such control, people may yell or abuse, or laugh loudly or cry at inappropriate times, or behave in disinhibited ways, like taking off clothes in public or passing vulgar comments. Such behavior is a characteristic of some types of dementia, where the frontal lobe has been damaged.

The patient’s emotions may also be affected because the patients sense their reduced cognitive abilities, such as in areas like in thinking, recognizing, speaking, doing things and so on, but they do not understand what is wrong with them (they do not understand or remember their own diagnosis). They feel a loss of identity, and are disoriented, bewildered and confused about what is happening. Because of this, they may experience emotions ranging from withdrawal and depression to anger and agitation. They may get restless or anxious.

Lost memories mean that the patient may not remember where he or she kept something, and this may create suspicion and paranoia. Not remembering that they have eaten recently may make them demand food repeatedly or complain that they are being starved. Complaining to others that they are being mistreated is common in many patients, and occurs because patients cannot remember that they have been looked after and fed. Disorientation to time and place may make them behave in uninhibited and socially unacceptable ways.

Sometimes, the patient slips into what is called “catastrophic behaviour.” This happens when the patient’s agitation and frustration crosses a threshold and the patient is out of control. It is very difficult to placate or control a patient once he / she slips into such behaviour, especially because the brain’s ability to regulate emotions may also have been affected by dementia.

A good way to truly understand how dementia affects people is to pause to think what it could be like to suffer from dementia.

Some patients have written about their experiences and feelings, and described their problems, confusion, frustration, and reduction in abilities. Their relief at learning that their problems were because of a medical problem. In their personal stories, they have talked of their determination on some days, and despair on others, and their attempts to live as normally as they could, though the usual “normal” did not apply to them. Note that these are all accounts written by persons diagnosed relatively early, and who have not progressed to the advanced stages of dementia.

Now, let us imagine that we undergo such experiences without the benefit of a diagnosis. Let us imagine not knowing where we are or what day and time it is, unable to recognize people or find the correct word, not sure what we were trying to do. Imagine wondering what is going wrong, but too scared and perhaps ashamed to admit the problems or ask for help.

While no one can fully comprehend what it must be like to have one’s own mind so confused and undependable at times, and also face so many difficulties in making the body do what the person wants, some persons have used devices to give caregivers a glimpse of what living with dementia may involve. A youtube video that describes such an sensitization experiment can be viewed at this link: Experience 12 Minutes In Alzheimer’s Dementia.

Dementia awareness in most countries is very poor. This means persons who face problems similar to those described in the above personal stories do not get diagnosed, and they and their families expect “normal” behaviour all the time. By the time the situation is bad enough for everyone to consider consulting a doctor, chances are that the patient can no longer understand explanations about dementia or remember them. The concept of “Alzheimer’s Disease” or other form of Dementia is new to the patient, who may not grasp it or remember it, and may continue to feel scared or ashamed. This surely worsens the stress and further makes things difficult for the patient.

Our understanding of what patients undergo may help us appreciate why they get agitated or depressed, and we may find the strength and empathy to help them.

WHAT CAREGIVERS CAN REMEMBER ABOUT DEMENTIA BEHAVIOUR:

• The patient’s brain has suffered a damage. Just because we cannot see the damage does not make it less real. We accept that a heart patient cannot lift heavy weights; a dementia patient cannot think and remember.
• Most of us assume that people act out of clear reasons and motives. That is, if someone said something nasty, we assume he meant it. We cannot assume that dementia patients are acting out of intention, because they cannot think clearly, and do not have a logical reason for their behavior.
• Dementia patients are not acting difficult because they want to trouble us (even if it seems so to us). They are acting difficult because their brains are not cooperating with them. If our brains were damaged, we would find things more difficult, too.
• If a dementia patient is acting strange on a particular day, it could be because of a problem the patient cannot tell us.
• If a patient gets upset and emotional, it is because the patient is frustrated and cannot handle a situation. We can use their emotion as an indication that they need help, rather than get upset about it.
• If a patient is behaving in a socially inappropriate way, or showing apathy, that may be because some part of his/ her brain is damaged. After all, emotions are generated and regulated in the brain so a damage in the brain can affect emotions.
• Our brains are working properly; if we cannot understand what the patient is doing, how can we expect the patient (whose brain has problems) to understand us?
• We need to learn tools to communicate with patients and to help them with various tasks.  We need to learn how to handle challenging behavior. The patients cannot learn new things; it is for us to learn how to cope with the situation.

 (Source:  Dementia Care Notes)