Establish a social support system for family caregivers of disabled elderly people

Under the background of the increasing life expectancy of the population, the rapid increase of the elderly population with disability and dementia, and the gradual decline of family nursing function, the establishment and improvement of long-term care service system is the fundamental way to deal with the future care crisis of the elderly population in China. The long term care service system does not exclude informal family care, on the contrary, family members are the key care providers and care arrangement coordinators in the long term care resource system. The 14th Five-Year Plan for National Economic and Social Development of the People's Republic of China and the Outline of the 2035 Vision Goals emphasize that in improving the elderly care service system, "support families to assume the function of elderly care." Family caregivers are the main force in the family to provide daily care and spiritual comfort for the elderly. Supporting family caregivers, making full use of family care resources, and improving family care ability are the contents that cannot be ignored in improving China's pension service system and long-term care service system.

The practical need to support family caregivers of disabled older persons

The results of the fourth sample survey on the living conditions of the elderly in urban and rural China show that there are more than 40 million disabled and semi-disabled elderly people in China. Under the circumstances of insufficient supply of socialized long-term care services, obvious cultural preference for family care and limited family purchasing ability, it is a common reality in China that disabled elderly people are mainly cared for by family members at home.

Family caregivers of the elderly with disabilities at home are a very large group. The survey results of Beijing's "precise help" demand show that the family caregivers of disabled elderly people are mainly the children and spouses of the elderly, mainly middle-aged and elderly people aged 50-69 years old, and nearly 30% of the family caregivers are employed. The survey also showed that family caregivers of disabled elderly people took care of the elderly for an average of 11.5 hours per day, and half of them took care of the elderly for more than 8 hours per day, with an average care period of nearly 12 years. The care provided by family carers is very extensive, involving daily life care, housework, medical and other activities such as going out and hospitalization, etc. Many family carers also need to do some basic care work, such as monitoring the vital signs of the elderly, injecting drugs, wound care and emergency injury management. However, most family caregivers have not received education or training in caring for disabled older persons, and caregivers generally lack certain caregiving knowledge and skills.

Due to the long-term intensive care of disabled elderly people, family caregivers are very prone to physical exhaustion, increased negative emotions, social restrictions, and economic difficulties, and employed family caregivers have conflicts between family care and work. Data from a survey on the demand for "precise help" in Beijing show that nearly 70% of family caregivers feel pressure to take care of disabled elderly people. Among them, half of the family caregivers have physical pressure, 45% have economic pressure and social communication restrictions, more than 30% of the family caregivers have psychological pressure, and nearly 30% of the working family caregivers have caring and work conflicts.

Being under heavy caregiver pressure for a long time will damage the physical and mental health of caregivers, and easily lead to elder abuse behavior, and reduce the quality of family care for disabled elderly people. At present, China's elderly population cohort is basically not affected by the family planning policy, and family care resources are relatively rich. However, in the future, as the parents of the only child gradually enter the age and disability period, family caregivers will face the dilemma of lack of daily assistance from family members, and even no temporary emergency substitute caregivers, and the pressure of care can be imagined.

Family caregiver support policies and practices are still in the exploratory stage

Affected by the traditional family nursing culture, the family caregivers of the elderly have always been a group that has not received enough attention in the public sphere. In recent years, there have been scattered support for family caregivers in national and local policies related to elderly care services, and some pilot services to support family caregivers have been launched in some urban areas. On the whole, the policy and practice of family caregiver support for the elderly in China is still in the exploratory stage, and there are still many deficiencies.

First, there is no legal basis for supporting family carers, nor has there been a unified policy provision at the national level, resulting in insufficient authority and impetus for policies. At present, most of the policies related to family caregiver support are local policies, and authoritative and stable policies and regulations are urgently needed to promote the change of social concepts and the development of family caregiver support practice.

Second, the systematic inadequacy of family caregiver support policies and the limited content and form of support. The negative impact of long-term care of disabled elderly people on family caregivers is multifaceted. According to international experience, although different countries implement different family caregiver support policies, they generally include five aspects: breathing support, economic support, psychological support, information support, and alleviating caregiver care-work conflicts. At present, there have been some explorations in the aspects of family caregiver respite service, caregiving skills training and child care leave in China, but there are few other aspects of support, and the forms of existing support services are very limited.

Third, the family caregiver support service covers a limited number of objects, the characteristics of compensation-type welfare are obvious, and there are inaccurate service supply problems. Taking domestic caregiver respite service as an example, local governments promote the pilot of respite service by purchasing services, but due to the limitation of local financial payment capacity, the scope of service objects is very limited, giving priority to families with extreme poverty, subsistence allowances, and low income, and the characteristics of supplementary welfare are obvious, and only the unilateral characteristics of the elderly such as the degree of disability are used as the qualification for caregivers to obtain respite service. In the pilot family caregiver training service, many caregivers who need caregiving skills training cannot go out to participate in the training because they are busy taking care of the elderly or the frequency of participation is very low, and some really urgent training needs have not been effectively met.

Fourth, family caregiver support lacks sufficient and stable funding sources, and the practical landing and sustainability of policy support lack financial guarantee. In the future, all aspects of support for family caregivers will continue to develop in the direction of normalization and universal benefits. If only relying on the financial support of the government, the financial pressure of the government will continue to increase, resulting in the support policy is difficult to sustain or the actual effect is greatly reduced.

We will improve policy support for family caregivers

In many countries where population ageing is well advanced, long-term care policies for older persons include not only policy support for disabled older persons, but also focus on supporting their family caregivers. Based on our national conditions, we should draw on some international experience to construct and improve our support policy system for disabled elderly family caregivers.

First, to coordinate and standardize family caregiver support practice with national policies and regulations. Introduce a special family caregiver act or rely on existing laws (such as the Law on the Protection of the Rights and Interests of the Elderly) to include family caregivers in the scope of legislative protection. Formulate unified family caregiver support policies and regulations at the national level to promote the orderly development of family caregiver support practices. At the same time, the interpretation and publicity of caregiver support policies and regulations should be strengthened to enhance the public's understanding of family caregiver groups, create a good social atmosphere to care for and support family caregivers, and enhance the awareness of family caregivers' right to seek social support.

Second, adopt a diverse mix of policy instruments to enhance the comprehensiveness and comprehensiveness of caregiver support. Drawing on the experience of developed countries, comprehensive social support for family carers is provided through the comprehensive use of economic subsidies (caregiver allowances, caregiver training subsidies), tax deductions, social support services (breathing services, support hotlines, psychological counseling, caregiver support groups), legal holidays and other policy means. During the formation of the policy system, attention should be paid to the dependencies between different types of support, for example, supporting caregivers to participate in skills training may require supporting respite services. At the same time, attention is paid to the construction of various types of caregiver support information and the integration platform of welfare policy information for caregivers, so that caregivers can obtain all relevant support information in a one-stop and convenient way.

Third, establish scientific and operational needs assessment standards to improve the fairness and accuracy of caregiver support. The degree of support needs of family carers is affected by many aspects, such as the carers themselves, the elderly people being cared for and the family situation, which makes the assessment of caregiver support needs very complicated. With reference to foreign experience and national conditions, the object of economic subsidies for caregiving is determined according to factors such as the economic status of caregivers and disabled elderly people, and the intensity of caregiving by caregivers, and the standard of caregiver subsidies is formulated according to local conditions. In terms of other support services, factors such as the degree of disability of the caregiver, the intensity of care of the caregiver, family support, caregiver care pressure, etc. are comprehensively considered to identify key support objects, and the required service content and appropriate service delivery forms are clearly defined.

Fourth, strengthen financial security to ensure the continuity of caregiver support. Breathing services will be included in the payment scope of long-term care insurance, realizing the shared responsibility of the government, enterprises and individuals, and referring to the payment standards of other long-term care services, differentiated payment levels will be set according to the family income of the insured objects. Governments at all levels have incorporated the funds and expenses needed to support the work of family caregivers into their fiscal budgets, and established multi-channel fund-raising mechanisms. At the same time, social organizations and elderly care service institutions are encouraged to actively provide family caregivers with free counseling hotlines, psychological counseling, group training, temporary respite and other support services.

Fifth, we should continuously strengthen and improve the basic guarantee of caregiver support policies. First, conduct large-scale surveys on a regular basis. The main family caregiver information module can be included in the large sample survey of the elderly population in China, so as to understand the basic situation and social support needs of family caregivers, and provide strong data support for the formulation of relevant policies. The second is to strengthen the evaluation of the effect of caregiver support policies, comprehensively investigate the feedback and evaluation of disabled elderly people, family caregivers and support service providers, so as to find problems, summarize experience and make timely adjustments in the pilot stage. The third is to encourage people to set up more social organizations representing the interests of family carers, pay attention to family carers, innovate caregiver support service programs, and actively speak for family carers.