How can families of people with dementia be counseled?

  At present, there are many studies on dementia in China, but less attention has been paid to their families. In China, the majority of dementia patients receive care and attention at home, and their families are burdened with heavy financial and mental loads for a long time, but their psychological status directly affects the effectiveness of family care and the recovery and prognosis of patients. Therefore, general practitioners should understand and pay attention to the difficulties and psychological pressure faced by the families of patients with dementia, give them timely help, and jointly care for the lives of patients with dementia in old age to improve the quality of life of patients and their families.  Burden and pressure Family caregivers of dementia patients face pressure from physical, psychological, social and financial aspects. The longer the patient’s illness and the more severe the condition, the greater the psychological burden on family members.  Caregiving Burden Caring for a person with dementia for years and years is a heavy, menial task that often in turn affects the caregiver’s own health status.  Mental load In a sense, when a person suffers from dementia in old age, it is not the patient himself or herself who suffers most, but the patient’s family. As the disease progresses, the patient’s thinking becomes simpler and more naive, he or she lacks emotional experience of external stimuli and is unable to communicate with family members on a deeper level.  Some family members painfully stated, “My husband has dementia and cannot speak, and there is no communication between the two of us. I cry and talk to him and he doesn’t respond.” Such situations are very common among family members of people with dementia.  Interpersonal and Social Stress Family members are busy caring for the patient for long periods of time, and opportunities for communication with others are greatly reduced. The lack of recreational activities leaves their spiritual needs unmet, and their quality of life is reduced.  Financial Stress Dementia is the 3rd most financially burdensome disease, after cancer and heart disease. According to statistics, the monthly cost of medication for a patient with dementia is close to $2,000; in addition, the family has to bear the cost of living, care and babysitting. Many family members take care of the patient full-time. This all places a heavy burden on the patient’s family, especially for those without medical coverage.  Improvements Studies show that more than 80% of family members caring for patients with dementia experience varying degrees of emotional and psychological problems. Family members may become invisible victims under the weight of stress, or even turn into patients. In addition, the status of family members directly affects the effectiveness of home care and the patient’s recovery and prognosis. Therefore, it is important to provide appropriate psychological support and intervention for family members of patients with dementia, which includes the following aspects.  First, the caregiver must have adequate psychological and physical preparation. During the process of caregiving, the caregiver should make reasonable arrangements for his or her life, ensure a nutritious diet and good sleep, and have at least one hour of free time each day to relax and relieve psychological stress through activities such as going for a walk, talking and listening to music. If conditions allow, it is best to ensure that you do not care for the patient one day a week to fully relax and rest.  In addition, confiding is an effective way to prevent emotional problems in family members. The general practitioner can guide and encourage the patient’s family members to vent their bad emotions through appropriate ways.  Correct misconceptions about dementia through health education Most patients and their families have certain misconceptions about dementia in old age. When patients are diagnosed with dementia, some family members think that it is a normal aging process of the elderly and deny that the patient has the disease; or they refuse to treat dementia because they think it cannot be cured, so they lose the valuable time for early treatment; they do not bring the patient to the clinic until the middle or late stage of the disease, when the patient has abnormal mental behavior and cannot be cared for. Therefore, it is important to inform patients’ families about dementia and provide them with relevant psychological education to correct their misconceptions about treatment.  Although the cause of dementia in old age is unknown and cannot be cured, early diagnosis, early treatment and rehabilitation measures can improve the quality of life of patients, delay the decline of their functions, reduce the burden on caregivers, and benefit patients and their families at an early stage.  Training in dementia caregiving skills Some family members feel helpless because they lack the knowledge and skills to care for patients with dementia. Therefore, it is important for physicians to guide the patient’s family members to establish the correct concept of caregiving, emphasizing the person-centered approach and the goal of improving the patient’s quality of life.  Accept the reality of the patient’s illness and adjust expectations for treatment There is no cure for dementia, and the most difficult thing for families to do is to accept the reality. Therefore, the family’s expectations regarding treatment, recovery and prognosis must be revised. Patients cannot be completely cured, but as long as the progression of their disease is delayed, the quality of life is improved or even not decreased, and the social function is improved or even not reduced, this is the progress of treatment and the result of the family’s efforts.  On this basis, family members can be guided to explore positive coping strategies and do what they can to enhance the caregiver’s sense of control and autonomy according to the patient’s condition and the family’s reality.  Building a social support system While caring for patients, they can communicate more with family members, relatives and friends, and not close themselves off.  In addition, caregivers should be encouraged to participate in mutual support groups for dementia caregivers or community agencies and organizations that serve family caregivers, to share their positive and negative feelings during the caregiving process, and to exchange their caregiving experiences and shortcomings. If possible, they can also participate in group counseling sessions with a psychotherapist. Through these activities, families can enhance their sense of belonging and relieve their psychological stress.  If necessary, seek professional help or even medication. Doctors should instruct family caregivers to regularly assess their own health and psychological status.  If a recent caregiver experiences any of the following, he or she should seek professional help: symptoms of lowered immunity such as fatigue, headaches or frequent colds; lack of motivation and interest in life; feelings of helplessness, frustration and powerlessness; inability to regulate and manage his or her emotions; inability to concentrate; feelings of hopelessness or even lightness of life, which he or she cannot regulate.