Let's talk about Alzheimer's
Alzheimer’s disease is a neurodegenerative disease, which is characterized by the progressive and irreversible loss of certain mental and cognitive functions (memory, attention, concentration, language, thinking, among others) due to a degeneration of brain tissue.
The group of diseases that cause these declines and losses of cognitive functions are called dementias. According to the Alzheimer’s Association, Alzheimer’s disease is the most frequent subtype or syndrome of dementia in Portugal (between 50% and 70% of all cases), and in the country, about 5% of the population suffers from some type of dementia.
The prevalence of Alzheimer’s disease has a much higher expression in the elderly population, with rare exceptions in which it appears before 60 years of age, becoming more common with advancing age. There is currently evidence to suggest a higher prevalence of Alzheimer’s disease in women, which is considered to be related to the fact that they have a longer life expectancy. As the proportion of elderly people in the world increases, a significant increase in the number of Alzheimer’s cases is predicted.
Alzheimer’s disease starts silently and progressively by affecting episodic memory, that is, small fragments of recent and unimportant memory are lost, such as where the car keys were left, what lunch was yesterday or where day of the month we are. As the disease progresses, difficulties begin in performing tasks that were once familiar, in expressing clear reasoning, in problem solving, and in understanding visual images and spatial relationships.
The loss of these cognitive abilities greatly affects the daily life of a patient with Alzheimer’s, as it results in severe changes in their behavior, personality and their own functional capacity.
It is rare for a patient with Alzheimer’s to be able to recover or relearn a cognitive ability after having lost it, and the same applies to the regeneration of degenerated brain cells. Once destroyed it is not possible to rebuild or recover them.
There are two types of Alzheimer’s disease, the most common being by a large extent the Sporadic, which has no relationship with the prevalence of the disease in the family. Familial Alzheimer’s disease (FAD), being very rare, is associated with a genetic mutation inherited from one of the parents.
There is currently no known cure for this neurodegenerative disease, but through an early diagnosis it is possible to delay its progress and, possibly, diagnose some other neurological disease for which there is already a cure or better treatment.
The causes for Alzheimer’s disease are still unknown. We know, however, that the main organ affected by the disease is the brain.
In Alzheimer’s disease, the brain suffers a progressive loss of its cells and, as the number of brain nerve cells decreases, the connections between them are also lost. But it is the accumulation of abnormal proteins in brain tissue that is the specific feature of this disease.
Experts believe that while the causes of Alzheimer’s disease are not fully understood, there are known risk factors that potentially trigger the development of the disease.
- Age: this is the main known risk factor for the development of the disease since there is an exponential increase in the number of Alzheimer’s cases with advancing age. Alzheimer’s diagnosis is rare in people under the age of 65;
- Gender: this risk factor is only based on the number of Alzheimer’s cases being higher in women than in men. However, the theory is accepted that this higher number of cases is only due to the fact that women statistically live longer than men, who die earlier due to other causes;
- Genetic factors and heredity: although it is a rare factor, some people inherit from one of their parents a genetic dysfunction that can cause the disease. If one of the parents carries the defective gene (apoE4) there is a 50% chance that it will be passed on to each of their children. If so, children who have received the gene usually develop Alzheimer’s disease before age 65, and may even be between 35 and 60 years of age;
- Head injuries: a relationship has been observed between the occurrence of a severe head injury and the development of Alzheimer’s, especially if the injury occurs after the person is over 50 years old, if they have the specific gene (apoE4) and if they have lost consciousness shortly after the accident;
- Other risk factors: if a person has high blood pressure, diabetes, high cholesterol levels and is a smoker, they may be at increased risk of developing Alzheimer’s disease. It has also been observed that if the patient seeks to treat these risk factors in middle age, it is possible to reduce mental decline when he is older. Statistics also suggest that the number of Alzheimer’s cases is lower in people with a higher level of education, and it is not yet known whether this is related to the greater mental exercise they were subjected to during growth.
As Alzheimer’s disease is a subtype of dementia, it shares some of the same symptoms with the other syndromes, albeit with some differences:
- Memory loss (especially recent memory)
- Difficulty speaking
- Personality changes
- Disorientation and confusion
- Difficulty completing routine tasks
- Behaviors considered disruptive and sometimes inappropriate
The degree of intensity of the symptoms and the moment when they appear vary from person to person. We can, however, categorize the symptoms into three levels (initial, intermediate and final) in order to facilitate the understanding of the disease for people affected by it, but also for their caregivers and family members.
2.1 Early stage of Alzheimer’s disease
The onset of the disease is generally quite subtle and silent.
People begin to notice small forgetfulness of recent events and some difficulties in working in the same way as before. These, however, begin to progress over time. Upon becoming aware of these events, the patient can become confused and even aggressive at times, suffer changes in mood or personality, which can lead to depression.
Symptoms associated with the onset of Alzheimer’s disease can include:
- recent memory loss;
- difficulty in learning and retaining new cognitive skills;
- disorientation and confusion;
- minor difficulties in articulating the speech;
- minor difficulties in social interaction;
- anxiety and depression;
- possibility of developing psychotic behaviors such as hallucinations, delusions or paranoia.
2.2 Intermediate stage of Alzheimer’s disease
It is not possible to define a specific milestone that marks the passage from one phase to the next. However, we can observe that as the disease progresses, the symptoms shown in the initial phase will tend to worsen and others that have not yet manifested may appear, leading to a greater dependence on third parties in daily life to perform basic activities, such as such as eating, dressing or personal hygiene.
At the intermediate level of Alzheimer’s disease we can witness:
- a total loss of the ability to learn and retain new information or skills;
- loss of more distant and consolidated memory, such as the names of close family members or events from your youth;
- total disorientation in terms of space and time;
- greater degree of disruptive behavior, with greater likelihood of aggression or disruptive behavior;
- onset of mobility difficulties;
- total or almost total loss of communication capacity;
- onset of loss of bladder control;
2.3 End stage of Alzheimer’s disease
This is a stage with a very variable duration, although most people in the final stage of the disease usually live for about 6 months.
At this stage, people are usually already bedridden and symptoms may include:
- inability to walk and need to be bedridden, which can result in pressure sores;
- total loss of speech ability;
- bladder and bowel incontinence;
- difficulty in eating food, which can lead to malnutrition;
- possible emergence of pneumonia.
The end result is invariably death, which is often associated with some secondary problem rather than the disease itself, possibly through an infection such as pneumonia.
In order for a person to be diagnosed with Alzheimer’s disease they have to go through several stages. However, some of these steps are similar in all cases of possible dementia.
The first step always involves the evaluation of a doctor, with the analysis of the symptoms revealed by the patient or his caregivers. Family history is analyzed to determine the degree of heredity potential. A physical examination and blood tests are performed in order to rule out other agents that may be causing the symptoms described.
The neurologist then proceeds with a mental certificate test that consists of carrying out some small tasks proposed by the doctor and which, depending on their performance, may indicate the presence of some dementia. Neuropsychological tests can also be performed, in order to rule out other potential causes of the symptoms revealed.
Once the diagnosis of dementia has been confirmed and other mental disorders have been ruled out, the doctor then proceeds with diagnostic tests, such as a positron emission tomography (PET) scan and a lumbar puncture to analyze the cerebrospinal fluid (CSF).
If these tests detect low levels of beta-amyloid (in the CSF) and deposits of amyloid or tau in the brain, the most likely diagnosis is Alzheimer’s disease.
The only way to truly confirm the presence of the disease is, however, by examining a sample of brain tissue under a microscope, obtained only after the patient’s death, in an autopsy environment. Only at that moment can one unequivocally observe the loss of nerve cells, neurofibrillary tangles and senile plaques that contain beta-amyloid, with a special focus on the temporal lobe that promotes the formation of new memories.
As a cure for Alzheimer’s disease is not yet known, as the destruction of brain cells is irreversible, patients and caregivers need to rely on existing treatment therapies.
The treatment of Alzheimer’s disease should therefore be seen as a strategy of combination of therapies, which help to attenuate the evolution of the disease and promote improvements in the quality of life of the patient and those around him.
- Pharmacological therapy
One of the strategies to be adopted is to take medications specifically designed to reduce the symptoms of disease progression, such as memory failure, but which do not affect the progression of the disease itself.
The so-called anti-dementia drugs are a class of cholinesterase initiating drugs that increase the level of acetylcholine in the brain (Acetylcholine is a neurotransmitter that is often found in low levels in Alzheimer’s patients and that if increased promotes improvements in the level of concentration and memory).
Patients may also be prescribed drugs to treat psychiatric problems that may have developed as a result of Alzheimer’s disease, such as depression, psychotic breaks, mood swings or sleep problems;
- Cognitive therapy
This strategy tends to be more effective in the early stages of Alzheimer’s disease, when functions that the patient had already acquired prior to the disease are stimulated. However, the practice of these mind exercises aims to stimulate and exercise memory, concentration and other cognitive functions that are lost as the disease progresses;
- Occupational therapy
In the early stages of the disease, it is important to prepare the patient and caregiver for the inevitable progression of the disease, so the role of occupational therapy depends a lot on the information provided to the patient and caregiver about the difficulties that may arise, by adapting the patient’s personal environment (home or other places) in order to reduce the risk of accidents and falls, and by promoting the patient’s ability to maintain activities of daily living (feeding training, hygiene or use of the telephone, among others).
As the disease progresses, the therapy adapts to the needs of the patient and caregiver, with changes in the adaptation of the space and personal environment of the patient (who in the end is often bedridden) so that he can perform the greatest number of activities.
- Control of concomitant pathologies
In Alzheimer’s disease, pathologies that coexist with the disease can develop, such as urinary tract infections, pain control, pneumonia or even colds that affect the patient’s well-being and must be properly addressed, as these are sometimes responsible for the end of life of patients with Alzheimer’s.
- Physical exercise
As in most pathologies, the regular practice of physical exercise should be implemented, since in addition to influencing the patient’s mood levels and general well-being, they can also be important for the rehabilitation of muscles and prevention of falls.
- Implementation of security and support measures
Alzheimer’s patients need a safe environment in which they feel supported. As such, over-stimulation should be avoided. The environment should be bright, positive, happy and safe, always designed to facilitate patient orientation and reduce the risk of anxiety and falls.
Routine and structure strategies should be implemented, whether in terms of food, visits and outings, always with the aim of promoting a sense of security and stability. Maintaining personal and daily hygiene, eating and exercise routines is a way to promote emotional stability and reduce memory loss, as well as helping to set a positive sleep pattern.
Any changes must be explained clearly and openly to patients.
The greatest measure of security and support is the role of the caregiver. This person or persons assigned to care for the patient play a key role in their well-being and even in delaying the progression of the disease. These are the people responsible for supervising the administration of medications, since a plan must be drawn up to monitor their intake in order to avoid confusion, as well as to help with all tasks that the patient cannot perform or has difficulties.
Possibly the role with the greatest physical and emotional stress in Alzheimer’s disease is that of the caregiver. It is a highly stressful and demanding job that often affects the health of the caregiver, as they end up neglecting their physical and mental well-being to the detriment of the well-being of the patient they care for.
The caregiver must then adopt some measures in order to reduce the impact that this task will have on his/her life.
The main measure is to obtain all the necessary information regarding the disease, what it represents, its stages and symptom development, as well as the needs of a patient with Alzheimer’s. This information must be made available by the various doctors who should accompany the patient (Neurology, Psychiatry, Physiatry, Nutrition, Primary Care, Palliative Care and Psychology), as well as by nurses, social workers, organizations and support groups, and through websites or publications. In this way, they will be able to respond to the demands of the needs of people with Alzheimer’s.
It is important for caregivers to understand that they do not need to do everything alone. Caregivers can and should seek help whenever needed. This help can come from social workers, from doctors or nurses who can travel home, from support group counseling or home maintenance assistance programmes.
Finally, it is important to remind all caregivers that they must take care of themselves. They must not neglect their personal needs and desires. They must maintain friendly relationships, practice their favorite activities and hobbies and essentially not put their lives on hold.
A useful tool for caregivers is the Caregiver Support Consultation with a specialist in Neurology or Neuropsychology, which aims to provide the caregiver with strategies, skills and specific knowledge to deal with the symptoms of the patient’s pathology, but also to create a safe space. and dedicated to the caregiver, where he can express his anguish, frustrations and difficulties in the task of caring for a person suffering from Alzheimer’s.