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[Special topic on dementia care]Find support at the right time and speak out if you are suffering

[Special topic on dementia care]Find support at the right time and speak out if you are suffering

Text: Chen Xiaoquan Compiled by: Liang Yingxiu

(KUALA LUMPUR) BPSD is very common among people with dementia, and it is also very distressing for caregivers. The emotions of dementia patients, such as anxiety, depression, irritability and other negative emotions, put a lot of pressure on caregivers.

Caregivers should seek help from others and accept help from others appropriately, participate in more support groups, talk about their difficulties, and receive counseling from professionals, so that a win-win situation can be achieved for both parties.

The International Psychogeriatric Association defines BPSD as Behavioral and Psychological Symptoms in Dementia (BPSD).

There are four types of BPSD in patients with dementia, which are perception, thinking, emotion and behavior disorders. These symptoms are present in 56% to 98% of people with dementia. Clinically, 62% to 84% of people with dementia have at least one type of BPSD. Duration of illness, age, education level, population, and severity of cognitive impairment also affect the prevalence of BPSD.

The manifestations of BPSD include agitation or irritability or emotional instability, anxiety, apathy, delusions, depression, reduced inhibition, high mood, hallucinations, loss of appetite, sleep disorders, and stereotyped behaviors (such as wandering, rummaging, picking up, etc.).

doctor benedict

More than 50% of people with dementia have pain

Dr Benedict Francis from the Department of Psychiatry at the University of Malaya Medical Center revealed that before diagnosing whether a patient has BPSD, it is necessary to conduct an assessment with the Confusion Assessment Methods (CAM) to rule out delirium. possibility. CAM uses four criteria as a diagnosis of delirium, namely acute onset and fluctuating course, inattention, disorganized thinking, and altered level of consciousness.

Physiologically, patients with dementia often experience pain. In the community, more than 50% of people with dementia suffer from pain, and in nursing homes, this number rises to 60% to 80%. Pain in people with dementia can come from musculoskeletal disorders, gastrointestinal problems, urinary tract infections, trauma or heart disease.

There are three assessment methods to assess pain in patients with dementia, namely the discomfort indicator scale, the Pain Behavior Assessment Scale (FLACC), and the Pain Assessment IN Advanced Dementia (PAINAD).

The Advanced Dementia Pain Assessment Scale (Figure 1) evaluates 5 groups of performance, namely breathing, negative vocalization, facial expression, body language and soothability. The score for each performance ranges from 0 to 2, and the five groups of performance scores are summed to give a total score of 0 to 10. The other is the Pain Behavior Assessment Scale (FLACC, Figure 2), which uses 5 groups of performance as evaluation, namely facial expression, feet, energy, crying and soothing. The score for each performance ranges from 0 to 2, and the five groups of performance scores are summed to give a total score of 0 to 10. The higher the score, the more severe the pain.

Caregivers will use the PIECES model to care for patients with dementia to prevent and solve problems and challenges arising from BPSD in patients with dementia, which are physical cause of behavior, intelligence, emotion, Caregivers, Environment and Social activity.

Behavior caused by physical conditions means that the patient with dementia suddenly behaves abnormally, and even yells. At this time, the caregiver needs to check whether the patient with dementia has any trauma and did not receive timely treatment, which caused the patient to behave abnormally.

Need to know if the patient has 7A

Due to the impact of dementia on the brain, patients may develop various intellectual disabilities, including Anosognosia, Amnesia, Altered Perception, Aphasia, Apathy, and Apathy. (Agnosia) and apraxia (Apraxia). Caregivers also need to know whether the patient has any of the 7A’s.

Caregivers also need to understand the reasons for the patient’s negative emotions such as depression, anxiety, and restlessness. For patients, their perceptions are disconnected, and they start to fear the world, which also exacerbates their anxiety state.

He said that the caregiver’s emotions and knowledge are also extremely important, because sometimes the caregiver’s stress may be directly reflected on the patient with dementia. Therefore, the caregiver also needs to have a certain ability to withstand stress and have the ability to evaluate dementia. What mentally ill people can and cannot do.

In terms of environment, whether the living environment is suitable for patients with dementia, such as too bright, too dark, too many people, too much noise, etc. These factors can aggravate the fear, anxiety and uneasiness of patients with dementia. Most patients with dementia no longer want to participate in any social activities and just want to stay at home alone or watch TV. Therefore, they seriously lack interaction with others. However, caregivers can help patients with dementia find themselves again through interaction.

The behavior of patients with dementia can be divided into three major patterns, namely unmet needs, learning, and stress threshold. He may have unsatisfied needs such as pain somewhere, too cold environment, or hunger, so he wanted to do something to satisfy the needs at that time; behavior will also be learned from the antecedents and consequences, which can also be called the ABC model: Antecedent (Antecedent) ), behavior (Behaviour) and consequences (Consequences).

For example, patients with dementia always walk out of the road without permission, causing frequent accidents. Therefore, caregivers need to repeatedly remind patients of the consequences of going out without permission, such as falls, accidents, etc.

“In addition, caregivers need to lock the door and understand why the patient is out, rather than throwing tantrums and blaming the patient.”

Unusual behavior reduces insecurity

The process of dementia gradually degrades their brain functions and lowers their stress thresholds, making patients more vulnerable to their surroundings. Therefore, they have certain behaviors to reduce their sense of insecurity.

“In addition, doctors need to obtain various historical records of the patient, such as disease history, family history, medication records, pre-morbid personality, cognitive ability, physical function status, etc. Therefore, when diagnosing BPSD, they also need to make a complete diagnosis for the patient. Physical examinations, such as blood tests, STD screenings, neurological scans, physical examinations, etc., to rule out underlying diseases or neurological disorders, coupled with various evaluations, can diagnose whether a patient has BPSD.”

Paired with non-pharmacological intervention

Reduce caregiver burden

For patients with dementia, BPSD is actually very common and very distressing for their families.

The patient’s emotions, such as anxiety, depression, irritability and other negative emotions, cause caregivers to be under great pressure, which is why family members eventually send the patient to a nursing home.

Professor Luo Zijian

Professor Andrew Law Chi Kin, director of the Department of Psychiatry at Perdana University, pointed out that there are two major factors in BPSD: the patient and the environment. Patient factors include unmet needs, pain, acute illness problems, complications, type of dementia, stage of dementia, brain changes, neurotransmitter changes, genes, personality and life history; environmental factors include knowledge of the disease, caregiver’s pain, overstimulation, number of caregivers, quality of care, caregiver knowledge, care infrastructure, life events, and family dynamics.

Medication has limited effectiveness

The tool currently commonly used to assess BPSD is the Neuropsychiatric Inventory (NPI). NPI is another scale designed by Cummings in 2006 to evaluate BPSD. It is also widely used in BPSD research reports. It includes 12 mental behavioral symptom items, namely delusions, hallucinations, and agitation. or aggression, depression or restlessness, anxiety, euphoria or elation, apathy, uncontrolled behavior, angry outbursts, aimless wandering activities, nocturnal behavior, and changes in appetite or diet.

“Currently, the effectiveness of medical treatment for people with dementia is limited, and non-pharmacological intervention is needed to reduce the burden on caregivers. Non-pharmacological methods have 5 criteria, namely anticipate. Caregivers need to predict the occurrence of accidents. In order to prevent it; biopsychosocial understanding (biopsychosocial understanding), caregivers need to understand the past of the patient with dementia to understand the reasons for the patient’s behavior; communication (communicate), this is a crucial part.

Communicate in a lower tone of voice

Although the patient may not understand what we are saying, the caregiver still needs to express it patiently; de-escalate, the caregiver needs to lower his tone and tone when communicating with the patient with dementia, and use simple words to express; Education (educate), caregivers need to make the family members of dementia patients understand dementia so that both parties can easily communicate and understand. “

Non-drug treatments for dementia include:

1/music therapy

2/Relaxation training

3/Massage therapy

4/Simulated presence therapy

5/Group nostalgia therapy (reminiscence group)

6/behavioral therapy


8/bright light therapy

9/Environment optimization

10/Start medication with a low dose

As for the drugs that can be taken for dementia, they include cholinesterase inhibitors (AChE inhibitors), N-methyl-d-aspartate receptor antagonists (NMDAR antagonists), antidepressants and antipsychotics. Drugs (antipsychotics). Patients with dementia should start taking medication at a low dose and increase the dose depending on symptoms.

Living under the same roof

Carers must have living space

Caregivers are under tremendous pressure when caring for patients with dementia for a long time, but many times people only focus on the patients and no one cares about the caregivers.

Most of the caregivers are family members of the patients with dementia, so they need to be cared for under the same roof. Naturally, they do not have their own living space. In addition, the caregivers spend most of their time and energy on the patients, thus alienating themselves from their own. social circle.

Or use tobacco or alcohol to numb yourself

When caring for patients with dementia for a long time, caregivers may also face financial difficulties, which naturally puts them under tremendous psychological pressure, and negative emotions will follow, such as hesitation, fatigue, insomnia, lethargy, weight loss, irritability, and loss of consciousness. Anhedonia, etc., which leads to a red flag for mental health, and caregivers may even use smoking, alcohol or drugs to anesthetize themselves.

Therefore, caregivers need to be aware of the limits of their personal abilities and set realistic care goals for themselves. At the same time, they need to contact their social circles to ask for support and accept help from others when appropriate.

Get guidance from professionals

In addition, caregivers should pay attention to their physical and psychological conditions, participate in support groups, talk about their difficulties, and receive counseling from professionals. If the caregivers themselves are not healthy, how can they care for the person with dementia?

Her father suffers from schizophrenia and her mother is a writer with dementia, Zhang Manjuan.

What I learned after taking care of my parents alone for 7 years

Seven years ago, writer Zhang Manjuan’s 88-year-old father was found to be suffering from schizophrenia. Her mother was diagnosed with dementia a year and a half later and has since become a sole caregiver. Over the past seven years, I have experienced panic, setbacks and other emotional ups and downs. I still often question myself, “Is this enough? Right?”

She said that for caregivers, you never know what will happen tomorrow or even today. You can only learn to live in the present and seize every moment of daily beauty, reminding yourself: “This is good!”

On this day, Wanfang Hospital separated an area in the bustling hall, where the hospital held the “Launching Ceremony of Expanded Services for the Dementia Care Center”. Officials from the central and local governments came, as did the district chiefs. The hospital introduced them one by one, and the last person to appear was the writer Zhang Manjuan, who represented the patient’s family.

She was arranged to give a speech at the end, and her soft voice instantly warmed the rainy autumn day. Zhang Manjuan said as soon as she opened her mouth: “I am a frequent visitor to this hospital. Coming here is almost like going home.”

She smiled and talked about her daily life as a caregiver. It is hard to imagine that she only experienced a caregiving storm in September last year when her father broke his leg.

Zhang Manjuan takes a photo with her parents.

Caring for parents is exhausting

Seven years ago, Zhang Manjuan sent her father to the emergency room for the first time. An exclusive interview with the media described it this way: My mother called that day and said that my father could not walk or stand up. His blood pressure had soared and he had been sent to the hospital. She rushed to the emergency room, and her father seemed to be explaining the aftermath. Xu Xu said no need for first aid or intubation…

My father, who was originally healthy, developed heart disease and other symptoms. He was hospitalized twice for rigorous examinations, and finally came to the conclusion that no one wanted to hear – my father suffered from schizophrenia, which is the so-called “schizophrenia.”

“From that moment on, my family fell into a storm of schizophrenia. My father was taking and weaning off medication. He had a very strong emotional reaction and turned into a person we didn’t recognize at all.”

That year, Zhang Manjuan’s father was 88 years old and her mother was 79 years old. The originally healthy mother suddenly forgot her way home and didn’t recognize who she was a year and a half after her father suffered from mental disorder.

After careful diagnosis, the doctor finally confirmed that her mother had dementia. Before that, she had had a stroke that no one knew about, which may have led to vascular dementia. This made Zhang Manjuan feel extremely guilty, “I didn’t even realize that my mother had a stroke!”

“During the care process, I felt a great sense of powerlessness. I felt like there was a big hourglass that was constantly leaking away my parents’ health and will. I was exhausted every day trying to pick them up, but couldn’t catch anything… It was probably… It feels like this.”

Learn to look at changes with humor

Zhang Manjuan said frankly that as a caregiver, you never know what will happen tomorrow or even today. You need someone to guide you when you are lost, and the caregiver’s mood is often ups and downs. Even though she has been a caregiver for seven years, she still often questions: “Am I doing this right? Is this enough? Is this good for my parents?”

In September last year, my father broke his left leg at home and went to the emergency room again. Since he had already suffered a fracture of his right leg before, the 95-year-old father doubted whether he could recover. He felt that he might be paralyzed in bed for the rest of his life. His temper changed. He became irritable and suffered from schizophrenia again, which also plunged the whole family into an abyss of pain and inability to sleep.

Zhang Manjuan smiled bitterly. She, her mother, and Indonesian caregiver Ani even “hated sleep” because of this: “Why can mom hate Ani to sleep? Why can Ani hate me to sleep? It becomes a cycle of terror; in the cycle, I feel that caring is really a A painful trip to hell!”

“If we continue, maybe my parents are still alive, but I’m dead?” Although 61-year-old Zhang Manjuan lives a regular life, she has three high problems due to huge pressure. She worries: “What if I leave first?” ?”

After her father fell and was hospitalized, her mother often clamored to see her father. However, during the epidemic, only one person could accompany him. Zhang Manjuan often took her mother out for walks to distract her from her restlessness.

She said quietly that although she was not an only child, she was a sole caregiver. Therefore, she had to learn to coexist peacefully with dementia, schizophrenia, and the “aging, illness, and emotional anger” of the elderly, and she gradually developed A self-soothing philosophy for caregivers, learn to look at things from a humorous perspective: “That’s good!”

When Zhang Manjuan mentioned that her father was seriously ill, her mother was very agitated by the change in environment, so she had to coax her to take a walk on the river embankment near her home. That day was the fourteenth day of the lunar calendar, and my mother suddenly pointed to the moon in the sky and said, “Look, the moon is very beautiful today!” Although the moon phase was not full, you could walk with your mother by the river embankment and look at the sky and the water. of the moon, “Isn’t this a very happy moment?”

Remembering the deceased relatives and forgetting the daughter

Being a close family member of a person with dementia often involves many emotional shocks. Zhang Manjuan recalled that when her mother packed her things in the living room for the first time and said she wanted to “go home”, she couldn’t help but go crazy: “What home are you going to? This is obviously your home!”

But her mother was still paranoid about leaving and refused to acknowledge that this was the home she had lived in for 30 years.

Another time, during the meal, my mother suddenly asked: “Are our father and mother still there?” My mother followed her eldest brother to Taiwan in 1949, which meant that she didn’t recognize who the person in front of her was at this moment. “I am the one who has been taking care of you, how can you not know who I am?” She felt angry, her emotions exploded in an instant, and asked: “Who am I? Who am I? You don’t know who I am?”

I saw my mother’s eyes flashing, a little panicked, a little embarrassed and confused, and then asked: “What about my sister? Where is my brother?” She then went all out to tell these relatives that they had passed away, causing the elderly people to cry in shock. When she calmed down afterwards, she realized that she was angry because the people her mother remembered were no longer in the world, but the daughter who was still alive and took care of her was forgotten by her mother…

Those difficult-to-adjust emotional conflicts have now faded away. When my mother encounters confused questions again, she will take the time to answer them:

“Mom, I am your daughter. Your parents, my grandparents have passed away, and my uncle and aunt have also passed away. Now I am by your side. I will accompany you and take care of you. Don’t worry.”

“What? When did they pass away? Why don’t I remember or know at all?”

“Mom, they’ve been dead for 10 years, and you’ve cried a lot.”

“Oh, that’s it! Well, let’s continue eating.”

The conversation between a mother with dementia and her carer’s daughter was originally heart-wrenching, but she said it turned into a hilarious stand-up comedy.

Zhang Manjuan laughed at herself: “How could I become like this and so naughty? That’s all because after accumulating too much, too much experience, the caregiver gradually understood more and more that one must first control one’s emotions well before they can take care of themselves properly. Take care of those who need care.”

Feeling guilty and struggling with caregiving

On the day of the launch ceremony, Zhang Manjuan finally accepted the advice of doctors and friends and took her mother to the Rizhao Center. She explained that her mother had worked as a nurse in a hospital for many years. She liked group life and was willing to serve. She always felt lonely at home, so she decided to let her go to the Rizhao Center to interact with people.

Recently, the epidemic has subsided, and I was finally informed that I could take my mother to a trial reading. At the moment, she felt happier than winning the first prize, but after agreeing, she fell into deep self-blame and guilt. “Does this mean that I want to shirk responsibility and blame? Is sending her there to make my life easier and avoid the responsibility of taking care of my mother?”

She kept talking to herself, “If she were my friend, how would she advise me?” Of course she knew that her mother liked people, and it would be better to participate in group life than to do nothing at home… “I know all this, but I can’t overcome it. A caregiver’s guilt and struggle.” Zhang Manjuan said.

That day, I sent my mother to the sunshine center. She was unable to accompany her due to epidemic prevention, so she had to pick her up an hour later. “To be honest, that was the longest hour in my life.”

She kept thinking about various scenarios: What if my mother can’t find me? What if mom can’t find the toilet? What if mom gets impatient and wants to leave? What if she doesn’t like her classmates? What if her classmates don’t like her?

Thousands of thoughts were tangled in her head, and when it was finally time to pick up her mother, Zhang Manjuan was like a parent sending her child to kindergarten on the first day, “wait at the door three minutes early and ring the bell when the time is up.”

Unexpectedly, all her worries were in vain. She was relieved when her mother laughed and joked with the social worker and wanted to go to the Rizhao Center again.

“These are the various stages that caregivers will go through.” Zhang Manjuan said that perhaps the establishment of the Dementia Care Center can allow many caregivers to express and understand their inner ups and downs, struggles, and conflicts. As a person who has experienced it, she hopes that every caregiver can find the best way to live with dementia, “Keeping the life you want, and also making the people under care happier because of our care. “

Zhang Manjuan takes a photo with Song Jiaying (right), director of the Department of Neurology of Wanfang Hospital.

Caregivers should not strive for perfection

When Zhang Manjuan’s mother first developed dementia, her family was in chaos, and her friends had no relevant experience, so she felt she had no way to seek help.

Fortunately, Dr. Song Jiaying, who treated my mother, provided a lot of help. “Dr. Song has become my mother-in-law. Every time I ask her: How is my mother, what should I do? She answers every request!” Zhang Manjuan said with a smile.

“Just like taking a plane, you must buckle your own seat belt first, and then buckle your child’s; you must take good care of yourself, and then take care of the elderly around you. No matter what decision you make, it is the best decision you make after careful consideration. It’s a good decision, don’t regret it, or think that you could have known better…” said Song Jiaying, director of the Department of Neurology at Wanfang Hospital, known as “Mazu”.

Even I have been like this

Song Jiaying pointed out that when faced with caring for family members with physical or mental disabilities or dementia, the pressure on family members is definitely greater than that of patients. Many people regret why they did not leave all their work to take care of their sick family members, even herself.

In her second year as a resident doctor, her 90-year-old grandmother underwent a tracheotomy. Since her mother had passed away, she could not hire any foreign helpers to help her. She resolutely resigned from her job as she lived with her grandmother, saying, “I want to go home and take care of her.” !” Unexpectedly, the chief refused and told her: “You must maintain your own life to be able to take care of grandma.”

She said that when many people are in panic, they often neglect to take care of themselves first. Nowadays, there are different long-term care resources and residential staff who can share the care burden. “Stabilize yourself first, have a stable mood and a stable economy.” , to take good care of your family; what you can give is the best, don’t think about how perfect it must be.”

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