"i haven't had a good night's sleep in five years. my mother-in-law left and i was exhausted."becoming a caregiver to someone with alzheimer's disease is an unplanned experience for many. when her son was in his second year of high school, haixia's mother-in-law was diagnosed with alzheimer's disease, which was moderate to severe. with the doctor's diagnosis in hand, haixia and her husband's emotions did not fluctuate much.
"in our town, it's not surprising for elderly people in their 70s to have dementia, and they are all taken home to take care of them." haixia said that when her mother-in-law was first diagnosed, she could basically take care of herself, but she just couldn't remember things. "my most important task is to take care of myself." her, don’t let anything happen to her.”
◎the brain is like putting an eraser, erasing the patient’s memory. / picture: ruijing vision
as a world-class problem with "the cause of the disease is unclear and difficult to reverse",alzheimer's diseasepatient'sthe brain memory is like being eaten by bugs. in addition, after being sick, people like to move around alone, which means that the chance of getting lost increases.
but i didn't expect that what was more difficult than preventing the child from getting lost was taking care of her daily food, drink, toilet, and sleep.
"take care of her as you would a one- or two-year-old child, butsheafter getting sick, the temperament changes drastically and becomes irritable and irritable., i helped her bathe, but she often refused to cooperate. she would scold me, hit me, and splash me with water. it would take at least an hour to give her a bath. "hai xia originally had a bad lumbar spine, and her mother-in-law weighed more than 130 kilograms. she broke down on her waist while helping her mother-in-law take a bath, and had to ask a nurse for help.
however, the arrival of the nurse did not make haixia relax."on the third day, i went out to buy groceries. as soon as i walked down the corridor, i heard my mother-in-law arguing with the nurse. 'you stole my money, give it back to me.' the nurse argued, 'i didn't take it. grandma, please don't wrong a good person. '." when haixia found out the truth was that her mother-in-law was wrong, the nurse was unwilling to continue working.
after the nurse left,my mother-in-law still always fantasizes about someone stealing things.，haixia and her son became the new targets of the old man's suspicion.calling mother and son "bad wives and bad grandsons". at first, haixia explained patiently and led her mother-in-law to "pretend" to find money. later, as the caregiving time got longer, her patience became less and less. after she lost control, she regretted and blamed herself for getting angry at the demented old man.
when professor hu yong mentioned that the most difficult thing in caring for patients is defecation, haixia nodded in agreement frequently. she said: "one time my mother-in-law was incontinent and i didn't clean her in time. as a result, she played with the feces with her fingers like a baby and smeared it on the walls, tables and cabinets. from then on, i had to put diapers on her."
although haixia pays great attention to the elderly's hygiene and mops the floor with disinfectant every day, the air at home is still full of unpleasant odors.
doctors say that one of the characteristics of alzheimer's disease patients is that black and white are reversed, and they have no concept of time or space.haixia was deeply affected by this, "caring for her at night is a hundred times harder than during the day!"
◎the patient’s day and night reversal makes the family members very depressed / picture: 123rf
"the old man ignores people during the day and can fall asleep just sitting down. however, he is very energetic at night. he is either rummaging through boxes or cabinets, gets up frequently (not really peeing), or makes strange noises like 'wuwuhuhu', and sometimes makes a lot of noise." "hai xia has taken care of her mother-in-law for five years, and her biological clock has also been disrupted, and she has never had a solid night's sleep.
"my husband is my mother-in-law's only son. he works in dongguan and can only come back to help me on weekends. my husband's other sisters married far away and there is no one to share the burden." recalling the days of taking care of her mother-in-law, haixia sighed, "it is impossible to take care of dementia for a long time. it’s really hard for the elderly to take care of themselves!”
"now that my mother-in-law has passed away, my body is exhausted." haixia often suffers from splitting headaches, palpitation, chest tightness, dizziness and nausea, and swollen face and hands. the doctor said that she wascoronary heart disease, severe migraine, lumbar disc herniation, sleep disorderswaiting for many illnesses.
now she looks 10 years older than her peers.she was afraid that one day she would become a burden to her children.
according to the country's first "survey report on living conditions of families of alzheimer's disease patients", 68.6% of caregivers do not get enough sleep, and 65.43% of caregivers feel that there is no hope of treatment and are under great psychological pressure. experts warn that emotional and financial stress can have serious repercussions and may even lead to premature death for caregivers.
liu guimei, who has had the same personal experience of serving two elderly people for 10 years, described it this way:"if someone in the family has alzheimer's disease, it means one life is exchanged for another."
what can be done to save caregivers?
in our country, letting elderly people with alzheimer's disease take care of themselves at home is the choice of most ordinary families. the responsibility of care naturally falls on the children or grandchildren.
industry analysts pointed out thatthe caregiver’s dilemma is caused by many factors。alzheimer's diseasediagnosis and treatment are delayed and treatment costs are high.a survey of 81 "participating research centers" across the country shows that the average annual cost of alzheimer's disease patients in my country is as high as 132,000 yuan, resulting in caregivers bearing a heavy financial, psychological and emotional burden.
more importantly, the current construction of supporting facilities for elderly care is lagging behind.domestic professional nursing institutions generally have high fees, lack of professional nursing resources, uneven service quality in nursing homes, and insufficient training for home nursing staff.other problems have exacerbated this dilemma.xie huiling, head nurse of the geriatric rheumatology and rheumatology department of zhujiang hospital, who has been engaged in geriatric care for many years, said that the family memberscaregiving pressure increases as the patient's condition worsens.during hospitalization, we will provide nursing training to family members and teach them relevant knowledge about non-drug therapies including music therapy and board games.。”◎xie huiling suggested that family members place some old objects and old photo albums at home so that the elderly can see and touch them, and are more willing to recall, communicate and express. this is good for delaying the progression of the disease. / picture: photographed by the author
at present, zhujiang hospital has established a memory and cognitive impairment center, covering multi-disciplinary experts, integrating prevention, screening, diagnosis, research, nursing and rehabilitation. it has also established an effective linkage between hospital-community-family to cover early stage the "alzheimer's disease full chain support system" of screening, non-drug treatment, and disease rehabilitation hopes to solve the problems of patients and their families.most of the patients admitted to this center are patients with moderate to advanced alzheimer's disease. these patients usually have mental abnormalities, but their families may not be aware of them.xie huiling discovered during the nursing process thatfamily members are very confused and most lack the professional knowledge to deal with patients’ mental symptoms.。“last week, an 80-year-old man was admitted to the ward. he kept saying that there were cockroaches and ants crawling on the bed. in fact, it was a hallucination. the patient kept asking for the sheets and quilts to be changed, and his family members collapsed at that time. "“as soon as we learned about it, we taught the family members to calm down, patiently listen to the patient’s thoughts, and try to meet the patient’s needs.” xie huiling said, you must let the patient see your actions, “after we changed the quilts and sheets three times in front of the patient, , the patient finally felt clean and stopped making trouble.”◎nurses popularize knowledge about care, diet and communication of ad patients. / picture: provided by the hospital
some family members believe that the intelligence and living abilities of alzheimer's patients have regressed to that of a 3-year-old child, and they treat the other person completely as a child."but the patient only has a decline in cognitive function, not a mental rejuvenation." wei juan, head nurse and nurse in charge of the department of neurology at zhujiang hospital, said that the most important thing in communicating with patients is to maintain patience and stable emotions, and not to quarrel. never rebuke, use short language to communicate, "when addressing the elderly, it is best to use the occupation they held when they were young, such as teacher zhang, dr. li, and accountant wang, so as to give them a greater sense of value and gain;don't use coaxing tones and words such as "eat a meal" or "sleep" when speaking., respect them."39 take a deep breath and learned that zhujiang hospital and the community are cooperating to explore"home bed" management model for patients with moderate to severe dementia and other disabilities, the joint medical team regularly conducts ward rounds at the patient's home, provides them with personalized diagnosis and treatment suggestions and rehabilitation guidance, and provides health education and psychological counseling to the family members to help them better take care of the patient.◎the medical expert team of the cognition center of zhujiang hospital goes deep into the patient’s home to conduct ward rounds. / picture: provided by the hospital
in addition to long-term medical support provided by medical staff, alzheimer's patients and caregivers also need necessary social support.for example, the help of social workers provides psychological support, policy consultation, rehabilitation activities, etc. to patients and their families, helping mild patients reintegrate into society, and caregivers can also get a short rest.under the heavy pressure of long-term care, many families have turned to elderly care institutions for help. however, the current construction of domestic elderly care institutions cannot fully meet the demand. taking guangzhou as an example, most nursing homes mix patients with dementia with ordinary elderly people, making it difficult for patients to receive effective care. even though some nursing homes have special areas for dementia, the cost is generally 7,000-10,000 yuan, which is much higher than the charges in ordinary nursing homes.for this reason, many caregivers hope that local communities can provide affordable day care services or in-home care services.it is reported that,shenzhen, taiyuan and other cities took the lead in piloting the integrated model of "shared care for the elderly and young", allowing both old and young generations to share services; some in jining, shandong and other placeskindergarten on the verge of bankruptcy begins to transform into elderly care services, many preschool teachers have also switched careers to join. this is actually an effective approach.the cost of caring for a disabled elderly person, whether it is hiring a caregiver or a family member resigning to take care of him, is unavoidable. if it involves sending him to a nursing home or day care, the cost will be even greater.the introduction of a long-term care insurance system to help families share costs has become a mainstream solution.so far, 49 cities across the country have piloted long-term care insurance systems, covering more than 100 million people.。◎ guangzhou long-term care insurance application process and treatment standards. / picture: guangzhou medical insurance official accountof course, these measures are far from enough in the face of the growing number of alzheimer’s patients.early screening and early treatment allow patients to maintain their ability to take care of themselves longer."i didn't know it before. after taking care of two elderly people, i learned that alzheimer's disease may show symptoms very early. the doctor said that if it is detected and intervened early, the ability to live may not be lost so quickly." as a person who has experienced this, liu guimei she often kindly reminds friends around her to take her parents for check-ups. she looks forward to the communitymore dementia-related screenings can be carried out.
moving the prevention and treatment barrier forward, seizing the golden window period of the disease, treating it early, delaying the deterioration of the disease, and helping patients maintain self-care for a longer period of time can effectively reduce the cost of post-care for families, which also means early screening for alzheimer's disease. investigation, early diagnosis and treatment are of great significance.
◎ zhujiang hospital’s free alzheimer’s disease science clinic. / picture: photographed by the author
domestic and foreign studies have shown that there is actually a "latency period" of 10 to 20 years before alzheimer's disease progresses to dementia. the incubation period is also a golden window for intervention.
li yang, an expert at the memory and cognitive impairment center of zhujiang hospital and deputy chief physician of the geriatrics department, said,when the elders in the family reach the age of 55, it is time to take them for screening，generally, it is assessed by using an assessment scale, but it can also be assessed through pet-ct or cerebrospinal fluid examination.to discover markers of early dementia.
◎you can self-test your cognitive function through the above 8 questions. / picture: photographed by the author
in recent years, artificial intelligence technology has shown great potential in the diagnosis and treatment of alzheimer's disease. professor guo hongbo, president of zhujiang hospitalled the team to independently develop the smart interactive ai cognitive early screening system and device, which can achieve accurate identification of ad high-risk groups., has been put into use free of charge in many community health centers, nursing homes and nursing homes in haizhu district and liwan district of guangzhou.
for a long time, alzheimer's disease has lacked specific drugs that can truly delay or even reverse the disease. on january 9 this year, the new drug lencanezumab injection was approved for marketing in china, allowingalzheimer's diseasethe patient's family saw hope.li yang introduced that lencanezumab is mainly suitable for mild cognitive impairment and mild dementia caused by alzheimer's disease. it has limited efficacy for patients in the middle and late stages and can cause side effects such as cerebral edema and microbleeds."since june, 10 patients have used this new drug. the patients are generally adaptable and only experience temporary fever, abdominal pain, diarrhea, dizziness, and headache. basically every family member reports that the patient's emotions and emotions have been significantly improved. later, some family members of patients with moderate dementia strongly requested medication.”
however, the current price of lencanezumab is relatively expensive. taking a patient weighing 60 kg as an example, the annual drug cost is as high as 180,000 yuan, which is a considerable expense for an ordinary family. li yang called for lencanezumab to be included in medical insurance as soon as possible so that more patients can receive timely treatment.effective drug treatment support can also help reduce the later care burden on family members.
under the influence of professor hu yong, ordinary nursing stations have come under the spotlight. a caregiver named "yimei" from sichuan revealed that she has been caring for her severely disabled mother 24 hours a day for 14 years, and both parties are currently in good physical and mental health."difficulties are real, but they must be overcome. we can be more proactive in learning and understanding." then she shared her personal care experience:
1.if the patient’s city is covered by “long-term care insurance”(long-term care insurance)pilot cities, apply for them,disability and dementia are all acceptable. in the past, it was only severe, but now it is moderate. please consult your local community for specific conditions. the national policy is good and there are financial subsidies, door-to-door care services, and subsidies for purchasing and renting assistive devices.
2.apply for a disability certificate for a patient, there are levels of disability in limbs, vision, hearing, etc., and you can enjoy the benefits of the disabled persons' federation and the civil affairs department according to different types and levels. you should boldly go to the community for consultation and seek help if you have difficulties. i believe there will be better and better policies.3.investigate and contact medical and nursing institutions near your home, to prepare for the temporary care of patients, caregivers need to rest and occasionally give themselves annual leave to go out for a walk in order to go further in the future.4.use multiple assistive devices to liberate yourself, patients are also more comfortable. air mattresses on beds, inflatable cushions on wheelchairs, bathing chairs, commode chairs, diapers... if the patient is a beneficiary of the national long-term care insurance, or the disabled persons' federation has assessed the corresponding disability level, the purchase of assistive devices is subsidized, and the personal financial pressure is very high. small.5.caregivers need to study, socialize, and exercise, reserve good physical and mental conditions for yourself, your state determines the atmosphere of the entire family. you are seen, release the love in your heart and let people see the light in your eyes.
do you have concerns about caring for your parents? what would you do if it were you? welcome to talk in the message area.
(at the request of the interviewee, the names in the article are pseudonyms except for experts)
correspondent｜correspondent wu xiaodan han yuroufirst picture| panoramic vision
