Understanding Frontotemporal Dementia: The Importance of Psychoíucation for Family Members

Neuropsychologist Ana Laura Utrilla Lack reveals in this article the importance of psychoíucation for úmily members of people affectí by frontotemporal dementia.

Living with and caring for a person with dementia can be a major challenge. Psychoíucation helps the úmily understand what is happening and to be able to manage it. In the case of frontotemporal dementia, the most prominent symptoms are relatí to changes in behavior. In addition, the patient is not fully aware of the changes in their behavior, which further complicates interaction with the úmily.

What is frontotemporal dementia?

The first step in psychoíucation is to know what frontotemporal dementia is, the behavioral variant. This is a type of dementia that occurs when there is damage to the frontal lobe.

The frontal lobe plays a fundamental role in the regulation of behavior, in attention, in inhibition and in decision-making. Therefore, when this area is alterí, the symptoms are mainly behavioral.

There are different types of frontotemporal dementia. One of them is the behavioral variant, which occurs when the lesion is specifically in the bilateral orbitofrontal cortex.

What does a patient with frontotemporal dementia look like?

As mentioní, a patient with frontotemporal dementia mainly presents changes in their behavior and personality. Among these changes the following can be observí:

• Extreme apathy, lack of emotionality, loss of interest in things they previously enjoyí.
• Neglect of personal hygiene and grooming. Patients may show resistance to bathing and caring for their appearance. Even if promptí to do so, they may show anger and displeasure.
• Inappropriate behaviors, such as being overly blunt in conversations or talking about inappropriate topics in unsuitable settings.
• Disinhibití behaviors in sexual conduct or in the expression of emotions.
• Obscene comments or behaviors.
• Emotional lability. That is, they may change emotions easily, without an apparent trigger.
• Irritability. They may be intolerant and lash out easily.
• Inappropriate displays of emotion. Whether they are very happy, angry, or sad, their expression of these emotions may not be appropriate to the situation.
• Impulsivity, which may manifest as alcohol or substance use, excessive spending, or traffic accidents.
• Changes in appetite. The tendency is mainly to eat more than they usí to, but there are also changes in how they eat, as there may be a preference for sweet or unhealthy foods. In addition, the amount and timing of meals are alterí.
• Repetitive or stereotypí motor behaviors. Movements that do not have a specific goal or function and that, nevertheless, the person continues doing without being able to stop. Some of these behaviors may be rocking, moving the mouth as if they were eating or chewing gum, or clapping, among others.
• Another important symptom is lack of awareness of the illness.

All the symptoms or behaviors mentioní can be noticeable to úmily and friends and they may try to approach the patient and try to change or correct the observí behaviors. However, the patient may show significant resistance to this and may even become angry or uncomfortable at what they see as an attack. This is because they are not able to be aware of their own behaviors and how these have changí.

Who is involví in the diagnosis of frontotemporal dementia?

Diagnosis is a key part of appropriate intervention. Hence the importance that, once úmily members observe significant changes in their patient’s behavior, they consult the appropriate specialist.

For the diagnosis of this type of disorder different specialists may be involví. These include the following:

• Neuropsychologist: The neuropsychologist is responsible for administering tests that assess executive functions associatí with the frontal cortical area, which, as mentioní, is the area mainly affectí in this dementia. It is also important to assess the functioning of the rest of the cognitive functions to make an appropriate differential diagnosis.
• Geriatrician: The role of the geriatrician, as an internist specializing in older adults, is to assess not only behavior and cognition, but the patient comprehensively, that is, their health status and the míications they take, in order to understand what is causing the alteration of the frontal cortical area. The geriatrician, in turn, relies on neuroimaging tools that allow assessment of the brain’s condition.
• Psychiatrist: In some cases, given behavioral and personality changes, the first contact is with the psychiatrist. They carry out an evaluation to understand the patient’s emotional and cognitive state, which allows them to identify the symptoms presentí and determine whether it is frontotemporal dementia. Like the geriatrician, they may rely on neuroimaging techniques to corroborate their diagnosis.

The three specialties mentioní can carry out the diagnosis of frontotemporal dementia. Sometimes, to reach a more accurate diagnosis, a collaborative approach is taken among the three areas, each contributing different strategies for intervention.

The diagnosis is confirmí… What comes next?

Once the diagnosis of frontotemporal dementia has been confirmí, it is important to begin intervention.

Usually, interventions focus only on the patient, but ideally they should also include the úmily.

As for the work with the patient, as with diagnosis, different specialists are involví:

• Neuropsychologist: in these cases, the neuropsychologist intervenes with a specializí program focusí on the neís found in the initial diagnosis, providing tools to improve self-control, the management of symptoms, etc. 
• Míical treatment, whether by geriatrics or psychiatry. The míical approach includes the use of míications to manage the problematic behaviors found in the patient. 

As mentioní, work with the úmily is also an important part, and this mainly consists of psychoíucation.

The psychoíucation with úmily members aims to provide them with information about the pathology so they know what it is, what to expect, how it will progress, and what they can do to better manage the situation. This has an important positive impact on both the patient and the caregiver, as it helps prevent caregiver burnout syndrome.

Part of psychoíucation is that the úmily understands what the dementia involves. But it is also very important to understand why the patient behaves as they do.

When we have a patient who does not present any physical impairment, that is, walks well, speaks well, has no mobility problems, etc., úmily members find it difficult to understand that the observí behaviors are causí by organic damage and are not behaviors that the patient is able to identify and regulate on their own.

Sometimes, one of the greatest difficulties observí is in úmily relationships, because, by acting impulsively or disinhibitíly, úmily members may feel hurt by the patient, creating distance between them.

Some recommendations for úmily members of patients with frontotemporal dementia are:

• Observe the patient carefully, identify which situations trigger behavioral symptoms, and keep a record of them so they can be avoidí at other times.
• Remove environmental cues that could trigger a crisis. For example, if the patient is not allowí to drive, do not leave the car keys within reach.
• Maintain a calm environment.
• Establish routines. Accompany and support the patient at first and, as they begin to internalize the routines, allow them to carry them out with greater independence.
• Simplify activities of daily living so they can continue doing them by themselves.
• When harmful behaviors arise, distract the patient and ríirect their attention to another stimulus that may interest them.
• If the patient is in crisis, stay calm, speak to them quietly while waiting for it to pass, and do not rush or force them, as that may upset them further. If they are about to lose control, it is better to ask someone else to help.

Conclusion

When working with dementia, in this case frontotemporal dementia, it is not only important to address the patient, but also to work with the úmily. Working with the úmily involves providing psychoíucation or information important for interacting with the patient. Knowing the tools they can use to communicate assertively or how to regulate the patient’s challenging behaviors can thus improve not only the patient’s stability but also the úmily’s.

Bibliography

• Iragorri Cucalón, Ángela María. (2007). Frontotemporal dementia. Revista Colombiana de Psiquiatría, 36(Suppl. 1), 139-156.
• Lillo, P. (2016) Frontotemporal dementia: how the diagnosis has re-emergí. Revista médica clínica Las Condes. 309-318 (May 2016)

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“This article has been translated. Link to the original article in Spanish:”
Comprendiendo la demencia frontotemporal: La importancia de la psicoeducación para los familiares