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 become even more difficult to handle.

The intention of this page is to give caregivers a basis to understand why patients behave the way they do. It is only to give an indication of what we may see in a dementia patient, and is not a complete list of what may be seen.

• 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

The brain gets damaged in dementia

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 damage to the brain increases as dementia progresses.

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. Image courtesy for images below: National Institute on Aging/National Institutes of Health

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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.
	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 independently able to do that task
	Every task requires coordination of various parts of our body. 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, the ability to coordinate reduces.	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
	All of us have some fluctuation in our abilities over days, depending on our mood and health and energy. In dementia patients, the fluctuation in the abilities to do a specific task or remember something is very prominent. This may be because of the way neuron connections are damaged, or because the brain compensates for such damages differently on different days.	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. Or to see the patient do something on one day and not be able to do it the very next day.
Image courtesy: National Institute on Aging/National Institutes of Health	As dementia progresses, the damage to the brain increases	The ability of the patient to remember things, to perform tasks, and communicate, all deteriorate as dementia progresses. In the final stages, the patient is bed-ridden and unable to communicate
	Loss of memories increase the disorientation of the patient	This leads to multiple problems, such as The patient may wander and not be able to remember 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
	Patients often cannot communicate what they want Even if they are facing a problem or are unwell, they cannot tell the caregiver	They may not be able to tell caregivers that they are feeling unwell or are in pain. However, illness will be affecting their ability to do things, and caregivers may not understand  why the patient is acting differently today
	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
	Patients are unable to create new memories	Ability to learn new things, use new devices, and adjust to new places is lost
	Patients often retain at least some sense of how to interact socially. This 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

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How dementia affects the emotional state of the patient

Patients often do not understand what is going wrong with them as they face the problems of memory loss and reduced ability to do things. They feel a loss of identity, and are disoriented, bewildered and confused about what is happening. The emotions they experience range from withdrawal and depression to anger and agitation. Patients may get restless or anxious.

When patients find themselves unable to do simple tasks, they feel frustrated and embarrassed, and are also unable to understand why this is happening (people suffering from dementia are often unable to grasp the fact that they are suffering from a disabling condition).

Lost memories mean that the patient may not remember where he or she kept something, and this leads to 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.

One of the impacts of dementia is that parts of the brain that control emotions may be damaged, and this makes it even more difficult for patients to handle intense emotions.

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.

• Norm McNamara’s blog describes his life and emotions.
• Kris, an early onset AD patient, is now an Alzheimer’s advocate. Her story is here. She also shares thoughts and memories on her blog: a few selected memories on playing tennis, talking on the phone, and daily challenges, confusion , meltdown, handling money, etc.
• Some more stories: Ted’s Story, Sandy’s Story, and Pete’s story.

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.

Dementia awareness in India is very poor. This means persons in India 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 dementias 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.

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What caregivers can remember about dementia behaviour

If we see a patient behave strangely, here are some points to recall:

• 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 behaviour
• 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
• 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.

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