Text ◇ Edited by Yang Qianni ◇ Liang Yingxiu
(Penang News) Before distinguishing between dementia and Alzheimer’s disease, first think about if one day your loved one develops dementia, should you tell him or her? If he is told that he has dementia, will he be depressed and not actively treated? What if it were you?
A survey conducted by Alzheimer’s Disease International (ADI) a few years ago showed that more than 90% of patients want to be informed of their diagnosis. According to the observation of Dr Teh Ewe Eow, Consultant of Geriatric Psychiatry at Penang General Hospital, the same is true for local patients with dementia, but there are also many cases that are diagnosed in the middle or late stages of the disease, and they may no longer have understanding at this time. or the ability to discuss a condition. Even so, the doctor will first understand the individual situation, including asking the patient and family members for their informed consent.
In order to avoid causing too much irritation, will doctors be scrupulous about the words they use when announcing their condition?
Think that “occasional forgetfulness” is due to old age
He pointed out that when talking about dementia, many people will think of the old name “Alzheimer’s disease”, and what often comes to their minds are pictures of more serious conditions, such as being completely unable to recognize people or being unable to take care of themselves, etc. Such an impact It’s huge.
“I think what’s more important is not just the rectification of the name, but also the further explanation after the results are announced.”
He said that dementia is not a single disease, but a combination of symptoms that can be caused by multiple causes. Due to the degeneration of brain cells, the patient’s cognitive functions, including memory, thinking, behavior and ability to carry out daily life are affected. Although their condition usually regresses over time, there are individual differences in the rate. According to existing data, it takes an average of 8 to 10 years to progress from the early stage of dementia to the final stage.
“Some cases will regress rapidly within 2 years, but there are also some patients whose condition lasts for more than 20 years. It is difficult for us to predict this. Currently, clinical drug and non-drug treatments for dementia can achieve a delay The effect of worsening the condition, while strengthening self-care ability, improving quality of life and self-esteem. We hope that through these explanations, the impact on patients or family members can be reduced, and if the patient can accept the condition, the degree of cooperation with the treatment plan will be higher.”
In fact, it is quite common for patients not to listen to explanations or admit that they have dementia. They usually think that it is unnecessary for their children to take them to the hospital for examination, that their memory is fine, and that “occasional forgetfulness” is just because they are old. In this case, it becomes twice as difficult for the patient to cooperate in taking the medicine. What should the family members do?
He explained that some elders will resist diagnosis, and family members can try to persuade the elders to accept the examination “for peace of mind.” Doctors do not need to force patients to accept the diagnosis, but on the premise that treatment is emphasized to help the elder’s memory function, patients will usually change their attitude and accept it. treatment.
“It is very important to respect patients’ autonomy in medical treatment and maintain a good doctor-patient relationship, which helps encourage patients to actively treat or take preventive measures.
Increased risk of suicide upon initial diagnosis
“Only when the cognitive function has deteriorated to the point that it affects the ability to live, it is defined as dementia. Sometimes, the patient just does not reach the full score on the intellectual function test, or there are some signs of cognitive function degradation, which may only be a mild cognitive impairment. Because the future may If they are at risk of dementia, they need regular follow-up visits. Some cases with a more positive attitude will also be happy to discuss what they can do in daily life to reduce the risk of dementia.”
“In fact, non-drug treatment is an important part of disease control. Family members can start from this aspect, including controlling the risk factors of cardiovascular disease, the ‘three highs’ and healthy diet.”
He pointed out that, however, if a patient with dementia shows behavioral and psychiatric symptoms, such as paranoia or depression, or even has a tendency to violence or self-harm, the family may consider forcing the patient to receive medical treatment.
“Reminiscent of the fact that people with dementia may feel hopeless and helpless due to the gradual decline in cognitive function, judgment, or daily living functions. Has the suicide rate also increased?”
Zheng Youyao said that overall the suicide rate of patients with dementia is not higher than that of the same age group; however, the risk of suicide does increase for those newly diagnosed or younger.
He noted that there is still a gap between having suicidal thoughts and acting on them. The suicide rate for people with dementia in the middle and later stages of dementia is actually lower, perhaps because they have lost the ability to act on suicidal thoughts. In addition, their increased dependence in daily life and the constant presence of caregivers are also one of the factors that reduce the risk of suicide.
“When patients feel depressed and hopeless, they can reduce strong suicidal thoughts through drug treatment such as drugs or electroconvulsive therapy.”
long term psychological stress
Carers need to be supported with empathy
When the public focuses on the physical and mental health of patients, the physical and psychological pressures placed on caregivers cannot be ignored. Sometimes they are even more stressful than the patients, but they have nowhere to express themselves and no one to share them.
“The long-term psychological pressure of caregivers will affect their mental health and even lead to suicidal thoughts. Caregivers need to be empathized with and need substantial sharing and support.” Zheng Youyao said.
3 steps to help caregivers
Caring for patients with dementia is not easy, and the accompanying financial pressure and mental burden can easily cause caregivers to suffer from depression, anxiety and stress. There is nothing shameful about having these negative emotions, which can be improved through psychological counseling or medical treatment. Caregivers should give priority to taking care of their own physical and mental health.
He shared that if people around him notice signs of depression or suicide in the caregiver, they can help them through three major steps: 1. Ask, 2. Respond, and 3. Refer.
He also mentioned that when caring for an elder with dementia, family members should divide the work and cooperate so that the primary or direct caregiver can have breathing space.
“We have been advocating the concepts of care managers and caregivers. The former is mainly responsible for work arrangement and resource search, while the latter is the direct caregiver. The ideal role is to have more than one person to take turns to rest. . However, what is common in real life is that patients are usually responsible for children of lower socioeconomic status or unemployed, and having the most money often equals the most say, which is a very unhealthy phenomenon.”
The job of a caregiver is not one that can be clocked out and left alone. If only one person is responsible, not only will time be tied up and there will be no chance to have a good rest, but it may also affect family relationships. He took a daughter as an example. Taking care of her mother with dementia for a long time affected the relationship between the couple. She performed her filial duty but at the same time felt guilty towards her husband. However, her siblings complained that they had not taken good care of their mother. The psychological pressure was so great. big.
Care managers play a big role
“Not only that, direct caregivers don’t have time to find resources, and what they need is not only emotional care, but also substantive support such as shifts, financial support, and knowledge-based learning. At this time, the care manager plays the role It is very useful in allowing people around you to share responsibilities and find resources to share, such as dementia support groups, information and care skills, etc.”
He emphasized that everyone should understand that no matter how good the caregiver is, the patient’s condition or problem cannot be 100% avoided. Sufficient support, trust and tolerance are very important. Caregivers should also take good care of themselves and try not to neglect other responsibilities, such as relationships between husband and wife, parent-child, etc., to avoid deepening their inner sense of self-blame.
Dementia caregivers may have thoughts of suicide because they are overwhelmed, but sometimes they gain value from caring for their patients as their own responsibility. This will be a positive factor in preventing them from going down a dead end. Zheng Youyao suggested that caregivers can rethink why they shoulder the responsibility of care and try to gain positive values from it.
“When a person decides to become a caregiver, it is worthy of reflection. Of course, there is no right or wrong answer. The ideal answer is out of love for so-and-so’s family members, ‘Although I feel pressure, this is a voluntary choice’. There are positive The value of ‘blessing’ is very helpful.”
He added that this kind of love between relatives cannot be forced. If both parties do not have this kind of affection, or the relationship has not been good from the past, the pressure on the caregiver will be even greater, because this responsibility is forced. Involuntary. If the answer is that you have no choice but to consider whether there are other options, such as entrusting it to a nursing home?
Strengthen the voluntary or loving component
He explained that this is not to conclude that “in order to avoid the hardship of the caregiver, we should not take care of relatives with dementia”, but to change the perspective and consider multiple options to try to reduce the stress and psychological burden. If the element of “voluntariness” or “love” can be strengthened, it will be easier to face this responsibility with a positive attitude, because this value will always be strengthened during the care process. “
The above statement is ideal, but in real life, we cannot ask a person to love someone.
“At this time, religious belief also plays a certain role, because some people regard taking care of their parents with dementia as an opportunity to practice spiritual practice or gain blessings, which is not a bad idea. In addition, I recently met a patient in his 60s. She still takes good care of her mother with dementia who is over 80 years old. She said that her children’s behavior is ‘obvious to everyone’, so they have become more filial. Therefore, in addition to the sacrifice and burden, caregivers also have other meanings.”
Assessment takes 6 months
Question 1: My father has had symptoms such as changes in temperament and memory loss for two or three months, and he has also been diagnosed with brain atrophy. Why does the doctor need to observe him for 6 months before diagnosing dementia? Will I miss the golden treatment period?
Answer 1:First of all, dementia is a chronic disease. If the patient’s memory deteriorates rapidly within a few months, it needs to be checked whether it is caused by a serious problem, such as stroke, brain tumor or meningitis, or thyroid enlargement, vitamin B12 deficiency, etc. cause. Therefore, doctors generally order blood or brain imaging scans primarily to rule out these problems.
As for brain atrophy, it is not the same as dementia. Research shows that brain atrophy is not associated with cognitive or functional impairment of the brain. A person may be found to have brain atrophy, but he can still work and make decisions; some people’s brains seem to be fine, but they have severe dementia and cannot take care of themselves. Brain imaging scans can indeed help diagnose Alzheimer’s or vascular dementia by looking at specific areas of the brain, but not all types of dementia.
Therefore, the clinical diagnosis of dementia is still based on symptoms, and the evaluation time is generally 6 months. Regarding the “best time for treatment”, since the effect of drugs is not very satisfactory, the primary treatment for dementia is not drug treatment, nor is it as urgent as acute diseases.
Encourage the elderly to develop hobbies and learn new things
Question 2: My father’s dementia has worsened significantly since he was locked up at home during the Movement Control Order (MCO). Is lack of movement the main reason?
Answer 2:Preventing dementia should start from an early age, and using your brain more is one of the keys. Because learning creates “cognitive reserve,” reserve function helps the brain retain memories for longer periods of time than in people with less education.
It’s like having more money in the bank, and you won’t become poor as quickly if you lose it. We also understand that many elders may not have had the opportunity to receive higher education back then. However, this kind of learning does not necessarily have to be in the classroom. The main thing is to maintain enthusiasm when facing new things. I often encourage the elders to develop new hobbies, learn a musical instrument, song or dance. Very good too.
In addition, people in middle age should also reduce the risk factors of stroke, such as avoiding smoking, controlling the “three highs”, weight and exercising more. In your later years, you should pay attention to avoid frailty, take in adequate nutrition, exercise more and maintain a social circle.
Many elderly people also degenerate quickly when they are unable to go out due to inability to drive, financial factors or physical problems. Therefore, even if you retire, remember to keep retiring, learn new things, and maintain or pursue your dreams!
Vaccination reduces risk of hospital death
Question 3: Why do people with dementia often get lung or urinary tract infections? How to prevent it?
Answer 3:Regardless of whether there is dementia or not, vaccination is encouraged to reduce the risk of hospitalization, complications or death in accordance with the recommendations of the Malaysian Immunization Guidelines for Adults. For the elderly, the most important vaccines are influenza vaccine, shingles vaccine and pneumococcal vaccine. As for urinary tract infections, you need to drink enough fluids (unless there are disease restrictions), pay attention to cleaning after going to the toilet, etc.
Due to affected cognitive functions, it is sometimes difficult for people with dementia to express or notice their discomfort. At this time, they are particularly dependent on the care and vigilance of their caregivers.
They need to understand the patient’s daily behavior. If he suddenly becomes restless, has a bad temper, or refuses to eat, he may need to pay close attention or go for an examination. Sometimes blood tests and urine tests may not be able to find the cause, such as constipation, so the frequency of defecation and urination also needs to be paid attention to.
Understand symptom triggers and find solutions
Question 4: Is dementia not memory loss? How could there be hallucinations first?
Answer 4:The human brain has many functions, not just memory, but most people are not aware of it. There are more than ten cognitive functions of the brain, including insight, executive ability, language ability (listening, reading and writing), concentration, information processing, spatial awareness, pain perception, etc. For example, getting lost in familiar areas, not being able to understand others, being unable to respond appropriately, being unable to plan your itinerary, and missing appointments are all manifestations of cognitive impairment in dementia.
At the same time, patients may also experience behavioral and psychiatric symptoms, such as being unable to handle stress and becoming angry when pushed. The average person will understand what behavior is appropriate in public, such as not taking off your clothes or yelling, but they may not understand.
Visual hallucinations, auditory hallucinations, and delusions are also included among the behavioral and psychiatric symptoms, which are often the cause of family discord. For example, patients may be very suspicious, suspecting others of stealing or cheating on their partner, and they firmly believe this. This is also the main reason why family members bring the patient to see a doctor.
Because of this, people with dementia all have unique symptoms, with some having a greater impact on their language skills and others on their spatial awareness. Generally speaking, memory will be the first to be discovered or affected.
Resistance to taking medication without first taking medication
Question 5: What should I do if a person with dementia refuses to take medicine? Can I not receive medication?
Answer 5:Frankly speaking, existing dementia drugs are not very effective, so the primary treatment patients need is non-pharmacological treatments. Although there is not yet sufficient medical evidence for non-pharmacological treatment of patients, it is usually recommended to improve the condition through environmental adjustment, activity arrangement, communication style change, cognitive training, massage and aromatherapy, pet therapy or art therapy, etc. their psycho-behavioral symptoms and improve their cognitive functioning. It should be noted that family members do not recommend requiring patients to engage in certain activities. For example, they have not been particularly fond of Sudoku or puzzles in the past. Forcing them will be counterproductive, so the method needs to vary from person to person.
There are currently 4 drugs clinically approved for the treatment of dementia. Although they are not ineffective, family members and patients cannot have high expectations. Medications can help patients with daily life, relieve symptoms, become more stable, and may slow down the progression of the disease, but that is all and will not reverse the condition.
The side effects of these drugs are also considered safe. However, when a patient’s mental and behavioral symptoms become severe, threatening the safety of themselves and those around them, or affecting the caregiver’s ability to provide basic care, some mental illness drugs need to be given for control, and the side effects of these drugs are relatively low. big.
If the patient really refuses to take medication, I would suggest not taking medication at first. It is worth mentioning that some pharmaceutical companies know that patients may have difficulty taking medicine or swallowing pills, and have also introduced water-soluble agents or body patches, which can help overcome patients’ resistance to taking medicine.
(Answer◇Dr. Luo Zongming, consultant in geriatric medicine)