Expert Consensus on the Care and Management of Patients with Cognitive Impairment in China

Abstract

The cognitive disease consensus was prepared by panels of health and public representatives based on actual clinical practice in Geriatric Departments in Chinese hospitals and a systematic literature review. This consensus reflects the medical knowledge accumulated by those experts and provides information about professional medical care and advice. A multidisciplinary panel of specialists (neurologists, psychiatrists, and nursing specialists) reports an expert consensus on the medical knowledge accumulated from those experts and provides information about professional medical care and advice. The recommendations focus on the care and management of older adults with mild cognitive impairment, the objectives and methods of maintaining cognition and training, the assessments and measures of daily care for patients at different stages of dementia, the assessments and coping strategies for the behavioral and psychological symptoms of dementia, principles and suggestions for an appropriate living environment, arrangements for recreational activities, the care and management of patients with end-stage dementia, and suggestions for addressing stress in caregivers.

Electronic supplementary material

The online version of this article (10.1007/s12264-019-00444-y) contains supplementary material, which is available to authorized users.

Cognition is the process by which the brain receives and processes external information to actively understand the world. Cognitive functions involve multiple areas, such as memory, attention, language, execution, reasoning, calculation, and orientation. Cognitive impairment refers to a dysfunction in one or more of these areas and affects the social function and quality of life of patients to different extents. Severe cognitive impairment may even lead to death. Cognitive impairment may be caused by multiple factors, including neurodegenerative diseases, cardiovascular and cerebrovascular diseases, nutritional and metabolic disorders, infections, trauma, tumors, and drug abuse. Cognitive impairment is divided into two stages based on severity: mild cognitive impairment (MCI) and dementia. MCI is a transitional state when the cognitive function lies between normal function and dementia. The incidence of MCI among the elderly population aged ≥65 years is 10%–20%, and >50% of patients with MCI progress to dementia within 5 years [1–4]. The percentage of individuals with MCI who develop dementia is 10 times greater than healthy elderly individuals [5]. Therefore, MCI interventions are critical to delay the occurrence and development of dementia.

Dementia is defined as a group of diseases characterized by cognitive impairment and accompanied by psychological and behavioral symptoms, leading to reduced daily living abilities. Based on the etiology, dementia is categorized into several types, including Alzheimer’s disease (AD), vascular dementia, frontotemporal dementia, dementia with Lewy bodies, among which AD is the most common, accounting for 30%–50% of all dementia cases [6]. In 2018, approximately 50 million people worldwide were living with dementia. Approximately 152 million people are estimated to be diagnosed with dementia by 2050 [7]. In China, 14% of the population aged 60 years or older had dementia in 2015, and this value will reach ~33% by 2050. The number of individuals with dementia in China ranked first in the world in 2015, imposing heavy burdens on families and society [8]. Therefore, dementia care has become an integral part of treatment. The majority of dementia caregivers include direct caregivers for individuals with dementia and their partners, such as spouses, children, home-service personnel, physicians, nurses, care providers for the elderly, community service personnel, and social workers. Appropriate care and management can delay disease progression in patients with dementia and improve their quality of life, leading to an extended life span and alleviating the stress on caregivers. Developed countries have established relatively complete dementia care models. The promotion of a dementia care and management model that is suitable for China is an important problem that demands a prompt solution.

Dementia care and management models are of two main types: home care and residential care. Home care includes day care centers, part-time nanny care services, full-time nanny care services, and on-site health care services. Residential care includes senior citizen homes, dementia care institutions, assisted living facilities for the elderly, nursing homes, and dementia units. In China, the majority of patients with dementia use the home care model, and caregivers are mainly family members and close relatives [9]. However, because of changes in the family structure and an incomplete dementia care system, the establishment of a consensus cognitive impairment care and management plan that is suitable for the national conditions in China is urgently needed.

We have systematically reviewed the literature in related fields published in the last 10 years, combined with the most recent research progress, and formulated the expert consensus described below after a collective discussion among the members of the expert group (see supplementary material). This consensus is based on the current status of dementia care in China and takes advantage of care and management experiences from other countries to offer guidance and suggestions for dementia caregivers in China, including the following: (1) MCI care and management; (2) cognitive maintenance and training; (3) daily care; (4) care and management of psychological behaviors; (5) living environment setting; (6) arrangements for recreational activities; (7) care and management of patients with end-stage dementia; and (8) suggestions for addressing stress in caregivers.

MCI Care and Management

Informing a Patient of an MCI Diagnosis

MCI is a common problem among the elderly population. The outcomes of MCI are stabilization, reversal to normal functions, or progression to dementia, so some patients with MCI have a poor prognosis. Informing a patient about an MCI diagnosis often involves legal and ethical issues. The key to communication is reasonable informed consent. Certain techniques and procedures are required when determining whether to directly inform and how to inform the patient and family members about the diagnosis. Studies conducted in various countries suggest that the majority of patients would like to know the diagnosis of MCI, and common reasons include “can plan for the future”, “have the right to know” and “can select treatment options”, while the reasons for not wanting to know include “will feel sad and depressed” and “knowing the truth does not help” [10]. According to recent research conducted in China, most patients would like to be informed about the true status of their diagnosis and would like family members to know, but they would like to be notified in neutral terms, such as “cognitive impairment”, “memory loss”, “brain degeneration” and “Alzheimer’s disease” [11]. In general, both options have pros and cons. Currently, after confirmation of an MCI diagnosis, the recommended practice is that physicians should first sufficiently communicate with the patient’s family members and then, depending on the circumstances, directly communicate with the patient. The content of the communication includes assessments of treatable risk factors, the risk ratio of conversion from MCI to dementia, whether a biomarker examination is needed to determine the possibility of a progression towards dementia, and possible interventions. The content of the communication should be beneficial for follow-up and management and minimize potential harm to the patient.

Care and Management of Patients with MCI

Both clinical physicians and patients hope to begin interventions early during the MCI stage to delay or prevent the development and progression of dementia. Therefore, a comprehensive and detailed memory profile should be established at a patient’s first visit and archived as the baseline condition; the reversible risk factors that cause further cognitive impairment are also assessed in detail [12]. Moreover, a cognitive assessment should be performed every six months. During the assessment, the patient should be accompanied by a family member, friend, or close associate. Importantly, the assessment results are only used as a diagnostic reference, and not as a diagnostic conclusion. After the assessment, the patient should be informed of the importance of early diagnosis and interventions, and they should be notified that an approved drug for the treatment of MCI is currently unavailable. Notably, joint interventions, including the comprehensive management of risk factors, cognitive training, exercise therapy and family care, social interactions, and treatment of depression, are beneficial for preventing or delaying dementia. The follow-up management should be voluntary on the part of the patient, and from the perspective of protecting the patient’s interests, the patient’s choice of included family members should be completely respected. During follow-up, methods to achieve the continuous management of the patient must be discussed, with the aim of establishing effective, rigorous, practical, and smooth communication and to provide the patient with integral and continuous medical services. Using the current diagnostic criteria, some misdiagnosis of MCI occurs [13], and the MCI misdiagnosis rate can be reduced through regular follow-up visits. Regular health education sessions are recommended, including methods to identify cognitive impairment at an early stage, methods to perform visits and follow-ups, methods to correct unhealthy living habits and control risk factors, and methods to improve self-care [14]. A survey of five cities in China indicated that the majority of the population has a poor awareness of AD [15] and a high demand exists for skilled care [16], which can be learned from the health education of Chinese communities in other countries [17]. The management of a population with chronic diseases should be strengthened, and medical personnel in the community should be regularly trained. Health care workers in community health service institutions should receive systematic training, including the early identification and timely referral of individuals with a high risk of cognitive impairment. Patients and caregivers should also receive regular health education. Therefore, the care and management of patients with MCI should be based on the establishment of memory profiles, regular follow-up visits, and health education.

Maintenance of the Personal Rights of Patients with MCI

For patients with a confirmed diagnosis of MCI, physicians should inform the patients and their family members of the uncertainty of the diagnosis and prognosis. Physicians should suggest that the patients and their family members discuss long-term plans together, such as the establishment of living wills, safe driving, financial and property planning, decisions regarding medical and research participation, and entrusting specific individuals to represent their legal interests (financial and medical affairs) [12, 18], which are beneficial for the maintenance of the personal rights of patients with MCI. In addition, many countries have regulations on the regular review or cancellation of motor vehicle driver licenses of elderly individuals or patients with dementia. In China, the Regulations of the Motor Vehicle Driver License Application and Use also stipulates that individuals with dementia are not allowed to drive motor vehicles. However, these regulations do not provide a detailed explanation of MCI. Relevant information should be provided to patients with MCI and relatives.

Cognitive Maintenance and Training

The Objective of Cognitive Maintenance and Training

A patient’s cognitive dysfunction and the severity of the condition should be assessed. Individualized cognitive training should be provided based on the assessment results, possible etiology, and the patient’s circumstances to help maintain the current cognitive status and restore or partially restore impaired cognitive function as much as possible, thereby delaying the clinical progression of the disease and improving the patient’s quality of life.

Methods for Cognitive Maintenance and Training

Management of Relevant Factors, such as the Etiology and Causes

The patient’s diet, exercise level, mentality, social support and past medical history, and current status should be comprehensively understood, and the relevant etiology and causes should be confirmed together with specialists. Based on the assessment results, the caregivers should implement a nutritional and drug treatment plan in daily life, observe the effects and adverse reactions of all drugs, and provide regular feedback.

Cognitive Function Training

Training should combine individualized and standardized aspects, including a combination of individual and group training, traditional and modern medicine, family and societal elements, specialized treatment, and daily life activities, and should include assessments. Five to six 1-hour cognitive training sessions are recommended weekly, with an individualized duration and intensity that is focused on the patient’s needs. 1. Assessment of cognitive functions: Detailed training plans should be created and executed according to the range and severity of cognitive impairment, the patient’s condition, and the available medical and social resources near the family and in the surrounding area. Novel and complex cognitive stimulations are believed to be more effective [19]. 2. Common training methods: (1) Memory training: This type of training helps maintain a patient’s long-term memory by allowing them to look at old photographs and recall past events and by encouraging the patient to tell their personal stories. This type of training improves the patient’s logical reasoning by guiding them to classify and recall pictures, phrases, or objects. Short-term memory can be improved by having the patient recall numbers and dates, repeat phone numbers, and recall the names of previously presented objects, such as pens, glasses, and keys. The patient’s delayed memory ability can be trained by showing him/her several items encountered in their daily activities, such as pens, glasses, and keys, and asking the patient to recall the names of the previously presented objects 5 min later or by guiding the patient to recall a piece of information, repeating the information and repeating the process with extended durations. In addition, other specific therapeutic techniques, such as vanishing cues, errorless learning, and internal versus external memory strategies, would be useful, but they are limited to the transfer of memory training to daily functions. (2) Orientation training: We recommend that orientation training is incorporated into daily life. This can yield two results with half the effort by choosing memories for training and strengthening times, locations, and figures to which the patient is emotionally attached and shows interest. (3) Verbal communication skill training: Methods for communication and interaction that are acceptable to the patient are recommended to help maintain their verbal communication skills. During this process, the patient should be encouraged and praised. The ability to express oneself can be trained by prompting the patient to name and describe picture cards, starting with easy tasks and progressing to more difficult tasks. Writing skills can be strengthened through transcription, dictation, writing based on pictures, and keeping a diary. The corresponding brain functions can also be activated by reading and singing. (4) Visual space and executive ability training: The patient should undergo targeted training on the items related to daily living activities, such as getting dressed, going to the restroom, bathing, identifying coins, making and receiving phone calls, and turning the TV on and off. More complicated items can also be included, such as using the washer and withdrawing money from the bank. If the patient makes mistakes during training, they should be taught in an encouraging way and should not be blamed or forced to make choices or recall things. (5) Calculation training: The difficulty of the training should be incrementally increased according to disease status. Simple arithmetic calculations are more beneficial. If a patient is unable to complete all the above training sessions, they are still beneficial for producing a comprehensive cognitive improvement by training a single cognitive area [20]. Better effects can be achieved using computer-assisted cognitive training [21, 22].

Daily Care

Individualized daily care that is centered on the patient and takes the maximum advantage of the patient’s remaining functions is recommended. A patient’s independence can be promoted and maintained by allowing autonomous behaviors. Patients should also be encouraged to participate in meaningful and interesting activities, eat a healthy and balanced diet, and engage in regular exercise.

Assessments

The daily living activities that can be assessed through communication with the patient/caregiver and physical examinations include vision, hearing, oral hygiene, physical ability, nutrition, function, and family environment. The assessment of daily living activities includes two aspects: basic activities of daily living, such as eating, getting dressed and taking a shower, and instrumental activities of daily living, such as managing money, shopping, driving and taking medications. Common scales for activity assessments include the Alzheimer’s Disease Assessment Scale–Activities of Daily Living, the Instrumental Activities of Daily Living (IADL) scale and the Disability Assessment for Dementia scale [23]. The Mini Nutritional Assessment Short-Form is recommended as a regular assessment of the patient’s nutritional status. If the patient is at an advanced stage of cognitive impairment and has an active eating disorder or behavioral symptoms, their nutritional status can be assessed using the Aversive Feeding Behaviors Inventory scale, the Edinburgh Feeding Evaluation in Dementia questionnaire, and the Eating Behavior Scale to improve eating and nutrition issues [12, 24]. Physical ability is typically assessed by measuring grip strength, pace, and the Short Physical Performance Battery scale.

Suggestions for Stratified Care

Mild Dementia

The daily living activities of patients at this stage of the disease are partially impaired, and require assistance to improve and maintain their instrumental activities of daily living, such as managing money, taking public transportation, performing housework, and using appliances. Caregivers should not provide excessive care but instead urge patients to take care of themselves. Patients should have regular lives; pay attention to their diets, nutrition, and cleaning; exercise appropriately; and participate in social activities they enjoy to ensure that they are able to maintain independent living activities at a high level for as long as possible.

Moderate Dementia

At this stage, cognitive functions gradually decline and the patient’s daily living ability decreases. Caregivers must assist patients with many types of obstacles encountered in daily life. Patients should perform simple and regular self-care tasks with the help of caregivers. Caregivers should cultivate patients’ confidence and security.

Severe Dementia

At this stage, patients generally have lost their ability to take care of themselves. Caregivers should particularly focus on oral hygiene, nutritional status, and excretion to avoid complications such as aspiration pneumonia, pressure sores, and deep vein thrombosis.

Daily Care Measures

Basic Daily Living Activities

(1) Eating: For patients with any stage of cognitive impairment, caregivers should provide a pleasant dining environment, reasonable meals, and colorful, aromatic and tasty dishes according to the patient’s preference. An attempt to improve cognitive functions with nutritional supplements is not recommended for patients without a nutrient deficiency [18, 24]. Patients should be encouraged to take food orally and avoid diet restrictions. If oral food intake is <50% of the expected amount for >10 days due to disease progression or irritation, the patient should undergo tube feeding to provide enteral nutritional supplements through an indwelling nasogastric tube or gastrostomy. If contraindications exist or the patient is intolerant of tube feeding, parenteral nutrition can be administered for a short period of time [18]. Patients with dysphagia or who are fed nasally should receive focused care to prevent aspiration and choking risks. However, invasive treatments aiming to “keep the patient alive at all costs” do not extend the lifespan or improve the quality of life [25]. (2) Dressing: The choice of clothing should be simplified, and patients should be encouraged to dress and undress themselves. Assistance should be provided to patients who experience difficulty getting dressed. Patients should be informed, and their privacy should be protected during this process [26]. (3) Cleaning and grooming: Patients should be encouraged and guided to complete cleaning and grooming processes, such as hair combing, tooth brushing, shaving, and nail clipping. Patients who are unable to complete oral care procedures should be assisted in maintaining oral hygiene. Patients’ teeth and dentures should be examined regularly. (4) Outdoor activities and exercise: Exercise should be based on long-term regular aerobic exercise and resistance training. The form of exercise can be determined individually according to the past preferences of the patient [27]. Walking, jogging, aerobics, dancing, tai chi, and progressive resistance exercises are all appropriate. During exercise, patients should perform the exercises they are capable of completing and move carefully to prevent injuries. When patients with end-stage dementia have difficulties in completing exercises, caregivers should help the patients move their muscles and joints to prevent complications such as joint deformation and muscle atrophy. (5) Bathing and skin cleansing: Caregivers should create a comfortable bathing environment and respect patients’ habits. Patients should take baths regularly. The bathing process should be simplified, and scentless, low or neutral pH, and fat-containing soaps should be used. The skin should be moisturized with body lotion to prevent itching caused by dryness. Caregivers should also pay attention to skin damage. For patients who refuse to take baths, caregivers should look for reasons, such as fear of water, fear of being undressed, or the lack of privacy, and address these fears in an appropriate manner. (6) Using the bathroom and incontinence: Patients with mild or moderate cognitive impairment should be encouraged to use the bathroom independently. Assistance should be provided to patients with difficulties, such as ensuring that the patient knows where the bathroom is located and renovating the bathroom if needed [28]. In cases of incontinence, caregivers should consider potential causes and seek treatment. Patients with unknown causes of incontinence should use the bathroom regularly and change their lifestyle to accommodate this condition. Diapers or a waterproof mattress should be used when necessary. Bedding should be changed and cleaned regularly.

Instrumental Living Activities

(1) Shopping: Patients should be encouraged to shop with a shopping list. Caregivers should help patients find shopping locations, and patients should choose the right products themselves. Caregivers can help the patients with payment [29]. (2) Driving and taking public transportation: When patients have basically normal cognitive functions, they should be accompanied by caregivers when driving. If a patient has a score >1 on the clinical dementia rating scale, they should stop driving [30–32]. When patients travel by public transportation, caregivers should accompany them and help them find stations and routes. (3) Cooking: Caregivers should know a patient’s cooking habits and guide them in preparing cooking materials. The patient can then complete the cooking steps according to the recipe. When necessary, caregivers should remind the patient about appropriate techniques and help ensure a safe cooking process. (4) Housekeeping: Caregivers should encourage and assist patients to participate in as many housework activities as possible, such as washing dishes and clothes, making the bed, and sweeping. (5) Telephone use: Caregivers should know the patient’s past ability to use a phone, remind them to search for phone numbers, and encourage and guide them to make independent phone calls. (6) Medication management: Caregivers should supervise patients in taking medications, observe adverse reactions, and prevent excessive use or misuse of medications. If patients refuse to take their medications, caregivers should identify the causes and seek professional help when necessary. (7) Financial management: Caregivers should know their patient’s financial management capability and remind or assist them in paying bills, such as water, power, gas, and phone bills. Caregivers should assist legal guardians in helping patients with financial issues.

Care and Management of Psychological Behaviors

Behavioral and psychological symptoms of dementia (BPSD) are defined as abnormalities or disruptions of perceptions, mood, and thoughts during the development and progression of cognitive impairment, including hallucinations, illusions, delusions, anxiety, depression, indifference, irritability, impulsive behaviors, and behavioral disinhibition [33]. BPSD is very stressful for patients but also imposes a substantial burden on caregivers.

BPSD Care Principles

1. Combine professional care and family care. 2. Understand the patient’s characteristics, including personality, hobbies, remaining abilities, and previous experiences, and identify patient-centered care approaches. 3. Regularly assess the effects of care and continuously improve them. Care for the behavioral and psychological symptoms should cover the entire disease course. 4. Non-pharmacological care interventions are preferred for BPSD care, and drug treatments should also be combined with non-medication interventions. The intervention methods should be administered incrementally and assessed prior to and after the intervention to ensure that the care methods are continuously improved. 5. Protect the safety of patients and keep them away from dangerous items.

BPSD Identification and Assessment

A prerequisite for alleviating BPSD is their correct identification and assessment. The predisposing factors, manifestations, duration, frequency, and intensity of the symptoms and their effects on the patient and caregiver should be recorded in detail. Assessment has been performed using instruments such as the Narcissistic Personality Inventory Questionnaire and the Global Deterioration Scale [34, 35].

BPSD Interventions

(1) Delusion: Delusion is often a source of a patient’s insecurity. Delusions of being robbed or persecuted are common symptoms. Caregivers should provide support to the patient through their speech and behavior, such as giving the patient the “banking deposit book” or “stolen money”. Delusions can also be addressed through non-pharmacological methods, such as music, art, and cognitive therapies [36]. (2) Hallucination: Careful observation and recording can help caregivers discover the triggers of hallucinations. Gentle treatment of the patient, providing distractions and reducing hostility and distrust are all helpful in alleviating symptoms. Glasses and hearing aids should be used for patients with visual and hearing impairments. Dangerous items such as knives, scissors, and ropes should be stored in safe places. Patients should be kept away from gas, and the doors and windows should be closed to prevent accidents. (3) Agitation/aggression: The causes and precipitating factors for agitation/aggression should first be determined. Methods such as persuasion, explanation, or distraction can help calm the patient. Safety measures should be implemented without restricting a patient’s movements. The agitation symptoms and aggressive behavior can be alleviated by providing ample opportunities to participate in games, music therapy [37], touch therapy [38], aromatherapy [39], and daylight exposure therapy [40]. (4) Depression/dysthymia: The patient should remain in a safe and quiet environment. Exposure to a sufficient amount of natural sunshine and music and verbal communication can effectively prevent and alleviate depression [41, 42]. Suicide and self-injury should be prevented in patients with severe depression. Patients should be treated by specialists in a timely manner. (5) Anxiety: For patients with mild to moderate symptoms, group reminiscence therapy, touch therapy, and play therapy can provide opportunities to increase social interactions, enhance their pleasure, and enrich their daily life, which subsequently helps to alleviate anxiety [43]. (6) Elation/euphoria: This symptom is manifested by excessive happiness, satisfaction, increased talking, and patient’s facial expressions of a naïve and uncoordinated impression. The caregiver should respect the patient and should not force them to stop but instead listen patiently, gently comfort and persuade them to ensure that their elation/euphoria does not affect the safety of the patient or surrounding people. The caregiver can adjust the environment as needed, shift the patient’s attention, and avoid irritating language and behavior. The caregiver can also increase the patient’s activity and arrange for them to listen to music, watch TV, play chess, read newspapers, or engage in other activities according to their hobbies and interests to maintain a good state. (7) Apathy/indifference: Apathy and indifference are common symptoms experienced by patients with dementia. Caregivers must improve the patient’s care in daily life [44], including the diet, daily life, personal hygiene and assistance with performing moderate physical exercise. (8) Disinhibition: For patients who are impulsive, speak rudely, swear, or are sexually hyper-excited, caregivers should prevent violent impulsive behavior without arguing, correcting, or engaging face-to-face conflict. The caregivers can distract a patient’s attention and let them perform active exercises to minimize the symptoms. Patients should be treated in a timely manner if they have severe disinhibited behavior [45]. (9) Irritability/emotional instability: The cause, triggers and characteristics of this behavior must be identified, and stimuli that easily trigger emotional fluctuations should be avoided. A patient’s fluctuating emotions can also be alleviated or calmed through non-drug treatments, such as soothing music therapy, physical activities, or sunbathing. (10) Abnormal activities: Patients with repetitive language or other abnormal behaviors can be comforted, neglected, or distracted. For patients with a tendency to leave safe areas, the incidence of becoming lost can be reduced by setting up an appropriate environment or arranging numerous daytime activities [46]. (11) Sleeping/night behavior: Patients with this type of symptom should avoid becoming too hungry or too full before going to sleep, and their daytime activities and physical exercise levels should be increased. Night-time sounds and light stimulation should be reduced and potentially accompanied by individualized music therapy [47]. Patients with daytime rhythm disorders and “sunset syndromes” can receive phototherapy [48, 49]. (12) Appetite and eating disorders: For patients with a reduced appetite, causes should be actively sought and treated in a timely manner. In addition, timely interventions should be provided for patients with eating disorders. Caregivers should help feed patients with end-stage dementia. (13) Medications that improve the cognitive function of patients with moderate to severe BPSD are the basic treatment for dementia. Currently, commonly used medications include cholinesterase inhibitors and N-methyl-D-aspartate receptor antagonists, among which memantine is highly effective in alleviating hallucinations, agitation, aggressiveness, and severe stereotypic behaviors [50]. Non-drug therapy is the primary option for BPSD. If non-drug interventions are ineffective, a combination of drug treatments and non-drug interventions is recommended [41, 42]. Antipsychotics, antidepressants, and benzodiazepines may be used for a short period, when necessary.

Living Environment Setting

Principles in Establishing the Living Environment

Along with decreasing cognitive function, patients often exhibit a decreased ability to orient and adapt to the environment. Patients are more prone to falls and becoming lost, and an unfamiliar environment and inappropriate environmental stimulation can increase a patient’s insecurity, which may induce agitation [51]. Therefore, friendly living environments should be established for patients with cognitive impairment according to the following principles: (1) ensure the safety of the environment to prevent accidental injuries and getting lost or falling, (2) maintain the stability and familiarity of the environment and avoid sudden changes, (3) design time and orientation clues to facilitate time and location orientation, and (4) provide proper sensory stimuli.

Suggestions for Establishing the Living Environment Setting

Ensure Environmental Safety

(1) Prevent falls: Furniture should be as simple as possible, and clutter and sharp corners should be minimized. Non-slip materials should be used for the floor, and the floor should be quickly dried in the event of a spill. Stairs should not be located in the active area, and small carpets should be avoided to prevent tripping [52]. Handrails should be installed next to the toilet and bath, and automatic night-lights should be installed in the bedroom, hallway, and bathroom [53]. (2) Prevent getting lost: Locks that the patient is unable to open easily should be installed. Curtains and pictures can be used to hide exits. Modern electronics such as door and window sensing devices, remote alarm systems, and electronic positioning devices should be used [54, 55]. Caregivers should inform neighbors and relevant personnel in the community about the condition of the patient so they can receive timely assistance. Care institutions can use circular or ring-shaped architectural designs. (3) Manage hazardous items: Toxic, harmful, sharp, or fragile items, such as medications, knives, scissors, glass containers, detergents, expired food, chopsticks, and toothbrushes, should be locked up. Gas and power safety and alarm devices should be installed. We recommend that the gas valve is shut off [56] and that seasonings are stored properly in the kitchen to prevent the patient from mistakenly eating them. The power sources of small appliances such as ovens, microwaves, and electric kettles should be turned off, and the temperature of the water heater should be decreased. Mirrors should be removed for patients with end-stage dementia.

Ensure that the Environment is Stable and Familiar

(1) Patients with cognitive impairment should live in an environment with which they are as familiar as possible and avoid sudden changes in the residence (such as moving, intermittently staying at children’s homes, or moving to care institutions), layout, and items in the living space [51]. (2) If the patient must change their residence, items with which they are familiar or like, such as small pieces of furniture, photos, pictures, and souvenirs, should be placed in the living area to help them identify their new environment [52]. (3) Institutions that treat patients with cognitive impairment should create small units and home-like environments, such as letting the patients have their own rooms and providing a living room, small kitchen, and dining room resembling a home. Some of the patient’s own furniture, photos, and items should be included in their room, and frequent room changes should be avoided [51, 57].

Design Orientation Clues

(1) Time and direction clues: Large clocks and calendars should be placed in prominent locations in the active areas, including the bedroom, living room, and dining room. Pictures showing the current season and upcoming holidays should be designed to help patients identify time [58]. (2) Directional guidance signs: Photos or pictures that the patient is able to recognize should be attached to the door to help them identify their own room. Simply designed direction signs, such as words or patterns, to guide patients in locating the bathroom, kitchen, or dining room, should be used. Daily supplies should be placed in stable and prominent locations, and the outsides of cabinets and drawers should be labelled [59].

Provide Proper Sensory Stimulation

(1) Light stimulation: The active areas should maintain bright and uniform natural or artificial light and avoid glare or dim light. The mirror should be placed in a location that will not easily produce reflections. Strong sunlight should be blocked with curtains [52, 60]. (2) Color stimulation: The walls, curtains and sheets should have warm and bright colors. Brightly colored photos, pictures, decorations, flowers, and plants should be hung or placed in the living space. (3) Sound stimulation: Noises and excessive quiet should be avoided. Appropriate sound stimulation should be maintained based on the patient’s preference, such as playing songs, music, plays, and comic dialogues the patient likes [61]. For patients who are bedridden and unable to leave their room/residence, the use of recording or projection technology to allow the patient to listen to sounds from nature, such as birds or ocean sounds, is recommended [62]. (4) Tactile stimulation: Items evoking different tactile sensations, such as sponges and sand, should be placed in the living area [52]. Simulation dolls or pets that the elderly patient likes should be provided [63, 64]. (5) Olfactory stimulation: The windows should be opened regularly for ventilation, to remove odors from the room and maintain a supply of fresh air. (6) If possible, care facilities should establish a multi-sensory stimulation room that uses light, music, aroma, and various objects to provide multiple sensory stimuli for patients with cognitive impairment [65].

Maintain Privacy and Sociality

(1) Privacy: A private environment can provide physical and psychological safety for the patient. The patient should be provided with their own space according to past living habits [66]. Curtains are recommended for care facilities or 2-person or multi-person rooms. (2) Sociality: Spaces should be set up for group activities such as activity rooms, living rooms, dining rooms, and reading rooms [67].

Arrangements for Recreational Activities

Principles of Recreational Activity Arrangements

Active participation in recreational activities can provide patients with cognitive impairment opportunities for self-expression and social interaction, which is beneficial for maintaining personal abilities and provides pleasant experiences. The arrangement of recreational activities should follow the principles described below. (1) Activities should have a proper level of difficulty that matches the patient’s existing physical function and cognitive ability. Activities that are too difficult are frustrating and activities that are too easy may be boring. (2) The activities should combine a patient’s interests and preferences and make them happy. Caregivers should note the patient’s reactions during and after the activity, as well as the completion status, to draw conclusions and help the patient find appropriate activities in which to participate. (3) The difficulty and participation mode of the activities should be flexibly adjusted. Turning the activities into tasks and forcing the patients to participate should be avoided. Patients should be encouraged and guided during the activities. (4) The duration of each activity should not be too long, and the patients should not be too “busy” [68].

Suggestions for Recreational Activity Arrangements

(1) Physical exercise: Physical exercise helps strengthen the physique and maintain social functions. Caregivers should guide patients with cognitive impairment in performing regular activities [69] such as walking, strolling around a park, hiking, performing tai chi, and other health exercises. Caregivers can also lead the patients in limb and finger activities, such as swinging the upper limbs and performing finger exercises [52, 70]. (2) Family activities: Family members are the most important social support system for patients with cognitive impairment. Activities performed with family members are the most familiar and safest experiences for patients [71]. Therefore, caregivers should create opportunities for patients and family members to dine, chat, take walks, go shopping, and perform simple household tasks, such as picking and washing vegetables, cooking, dishwashing, cleaning the desk, stuffing and addressing envelopes, and gardening. For patients who are housed in care institutions, caregivers should create more opportunities for family members to visit [72]. The establishment of a simulated supermarket that allows patients to buy their preferred daily necessities with tokens is recommended. (3) Reminiscence activities: If patients with cognitive impairment still have some memory function, activities that stimulate their memories of past events or experiences, such as looking through and talking about old photos, listening to old songs, watching old movies, talking about past events, and revisiting old places, are recommended [42, 73]. (4) Sensory and cognitive stimulation: Suitable sensory and cognitively stimulating activities based on the patient’s preferences and existing abilities are recommended, such as singing, listening to music, following the beat of music, touching flowers, smelling the scents of flowers or perfume [74], receiving a massage or emotional touch [75], and interacting with pets [42]. Patients can perform some manual activities, such as origami, paper-cutting, flower-arranging, weaving, beading, jigsaw puzzles, interacting with building blocks, playing pick-up sticks, writing, drawing, and coloring. Caregivers can also perform some activities together with the patients such as simple calculations, labelling and classifying items, and playing chess and cards; however, patients should not be forced to perform difficult calculations [71, 76].

Care and Management of Patients with End-Stage Dementia

End-stage dementia is defined as the state at which the dementia has progressed to the most severe stage. Memory and other cognitive functions are severely impaired. Patients have no autonomous needs, have lost the ability to complete daily living activities, and have urinary and fecal incontinence. Common complications include dysphagia, fever, and lung infections [26]. At this stage, the clinical dementia rating scale score is 3 and patients have a score of 7 on the Global Deterioration Scale. Patients with end-stage dementia require complete care from others. Palliative and soothing care is typically provided to these patients.

Deciding on Care and Medical Treatment Plans

Soothing therapy and hospice care are usually administered to patients with end-stage dementia. Both physicians and guardians must coordinate to determine care and medical treatment plans. The decision can be made through an open family interview. The physician informs the patient’s guardian of the prognosis, options, and medical principles to be followed and answers any of the guardian’s questions. The guardian can decide on a care and medical treatment plan that is suitable for the patient based on the patient’s will and family customs.

If soothing therapy and hospice care are determined to be the appropriate management, these treatments can be provided at home or in a retirement home, nursing home, hospice site, or other institution.

Suggestions for End-Stage Care

Under current Chinese law, if the guardian decides to actively extend the patient’s life, the patient should be sent to a medical institution that is able to provide nasal feeding, gastrostomy, or parenteral nutrition as needed [77]. In the presence of an infection or organ failure, necessary treatments and rescue measures should be administered to extend the patient’s life in an appropriate manner.

The adoption of soothing therapy and hospice care does not mean that the patient is allowed to die, but instead, this care is provided under the principles of reducing pain and maintaining patient dignity [78]. If the guardian decides on this option, the patient typically receives care through one of the following methods:

1. Eating difficulty: The patient should be fed small amounts of food multiple times per day.

2. Respiratory tract infection: The physician’s advice should be followed. Caregivers should let the patient inhale oxygen, turn him/her over, pat his/her back, aspirate sputum, and administer the appropriate medication.

3. Urinary tract infection: The urethra, vulva, and perineum must be cleaned regularly. The patient should be replenished with a sufficient amount of water. The patient’s bladder is flushed when necessary.

4. Pressure sores: The patient’s position must be shifted regularly and the patient should be assisted with some mild activities on the bed. The patient’s clothes are changed regularly and the skin is kept clean and dry to prevent pressure sores. If conditions allow, the patient can use an air bed.

5. Pain: Analgesic medication should be provided according to the doctor’s advice.

6. Oral care: The patient’s mouth should be kept clean and moist.

7. Other: It should be determined whether the patient is comfortable and peaceful. The patient’s dignity should be maintained. The patient should be continuously assessed and the care measures updated when needed. Touch, music, and other means should be used to pacify the patient.

Suggestions for Addressing Stress in Caregivers

Definition and Classification of the Stress Experienced by Caregivers of Patients with Cognitive Impairment

Caregiver stress, also known as caregiver burden, refers to various adverse effects on the emotions, economics, health, and mentality of caregivers while caring for patients [79]. The main burdens on caregivers of patients with dementia include psychological (including social psychology), physical, and economic burdens, among which the psychological burden is the most important. Caregiver stress affects the caregiver’s physical and mental health. Fifty-nine percent of home-based caregivers of patients with dementia have very high levels of psychological stress and 40% have depression; only 5%–17% of caregivers of patients with other disorders experience depression [80]. The ratio of caregivers with depression increases as dementia progresses [81]. For many caregivers, the care provided often affects their own health. Caregivers are more susceptible to other diseases or complications when caring for patients with dementia [82]. For example, caregivers have a higher risk of hypertension and cardiovascular diseases [83, 84].

The Manifestation of Stress in Caregivers of Patients with Cognitive Impairment

Although financial burdens are included in the stress experienced by the caregivers of patients with cognitive impairment, the most prominent manifestations are physical and psychological stress. Detailed manifestations include an attitude of denial, anxiety, irritability, frustration, emotional instability, insomnia, social difficulties, distraction, exhaustion, and fatigue. For example, caregivers may deny the dementia diagnosis of their family member. They are anxious about the future. They are angry with the patient, themselves and others. Their beliefs are shaken after a series of setbacks. They often wake in the middle of the night or have nightmares. They are lonely but are not willing to interact with friends. They have difficulty in focusing their attention and cannot complete complicated tasks. These stresses gradually cause mental and physical damage, leading to weight loss or gain, and caregivers often suffer from chronic diseases.

Factors Affecting the Stress Experienced by Caregivers of Patients with Cognitive Impairment

Factors affecting the stress experienced by caregivers of patients with dementia are complicated and related to the characteristics of the caregiver, the disease status of the patient, and the care environment (family status). These factors mainly include the closeness of the relationship between caregiver and patient, the gender of the caregiver, how they cope with stress, ethnic, and cultural differences, the patient’s dementia symptoms and BPSD, and encouragement and support from other family members.

Addressing Caregiver Stress

Stress Assessment

According to the Basic Activities of Daily Living questionnaire and the IADL questionnaire, the time spent each day providing care for a patient with dementia is an important metric when studying the indirect financial burden of dementia [85]. The Zarit Burden Interview (ZBI) scale is used to assess the stress of caregivers [69]. The short form or filtered version of this scale has also been used to assess caregiver stress. In addition, caregiver stress has been assessed using the Cardio Stress Index, the Screen for Caregiver Burden, the Simplified ZBI scale, the Positive Aspects of Caregiving scale and the Coping with Stress Scale.

Methods of Addressing Caregiver Stress

The burden of the caregivers of patients with dementia can be alleviated by providing effective and targeted interventions and follow-up, which then conserve comprehensive health resources (by delaying the time for which patients visit a professional care institution) to achieve the eventual goal of alleviating the financial burden and pressure of dementia on society. The main methods for alleviating caregiver stress are described below. (I) Adjusting psychological and social stress: (1) Caregivers’ mental stress, and physical and psychological status should be assessed regularly by specialists. Medical personnel can become involved in caring for the patient with dementia and provide professional guidance, proactive health education and psychosocial support to alleviate the care burden [86, 87]. (2) Caregivers should adjust their attitude and understanding and learn to effectively cope with stress. Caregivers should block out some time for themselves and perform activities that make them happy and fulfilled. (3) Trust should be established between the caregiver, patient, friends, and family members. The caregivers should not blame themselves when the patient experiences a difficulty, and they should understand that difficulties arise with disease progression. The caregivers should also establish a communication mechanism to ensure that they can seek help in a timely manner when they are unable to cope with the psychological pressure. (4) A professional team of nurses, physiotherapists, and doctors should provide online counselling services and support for the caregivers, while caregivers can communicate with each other on a website. (5) A complete social support system should be established to reduce the burden on caregivers. Through social gatherings or regular family meetings, caregivers can share and discuss the difficulties they face and their experiences. They can also seek help from social support agencies to allow them some time to relax and take a break. (6) A psychological education plan should be developed, and cognitive behavioral therapy should be used to encourage caregivers to learn psychological relaxation techniques, which are beneficial to both the patients and caregivers [88, 89]. (II) Addressing physical stress: (1) The caregivers should be encouraged to pay attention to and maintain their own health. (2) Physicians should anticipate potential problems during patient care and interview the caregivers during patient visits to assess the caregiver’s health status and potential problems. Physicians can then provide appropriate medical suggestions based on the caregiver’s health status. (3) Attendance at some pleasant leisure recreational activities is beneficial for the caregiver’s physical and mental health. Caregivers should also choose nutritious and preferred food. (4) Caregiver knowledge of dementia should be improved, and they should be provided care plans and coping techniques, such as training in proper patient transportation methods. (5) The use of new technologies can improve patient function and reduce dependence on caregivers. For example, the use of equipment to assist caregivers with moving patients who are unable to move can reduce the physical burden on caregivers. (6) Regular day and holiday care should be arranged. Caregivers require vacations, rest, and recreation time to ensure that they are physically and mentally rested. (III) Addressing financial burdens: (1) The financial burden and relevant factors related to the care of patients with dementia should be assessed to provide a reference for the development of proper medical care plans, new health care policies, social resource support plans, and medical insurance plans [90, 91]. (2) According to previous studies, anti-dementia medication can reduce medical costs, which then reduces the caregiver’s financial burden [92]. (3) Improving the care abilities and financial status of caregivers might also alleviate their financial burden.

In the process of caring for patients with dementia, medical staff should establish a communication mechanism with caregivers and family members to jointly evaluate and address various problems. Non-drug interventions should be implemented as the main measure, and the principle of individualization should be emphasized. In addition, while focusing on patients, medical professionals should also monitor the pressure and response of caregivers.

Electronic supplementary material

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