Who Cares People with Dementia? A Study on the Service Use of Dementia Family Caregivers

Dementia has become a policy issue worldwide in recent decades. Dementia is a syndrome cause by the cognitive impairment of the brain, of a progressive nature. Its prevalence is highly age-associated, and therefore shows a significant impact on the fast ageing society. By far, no treatments are available, while the need for care has troubled the family caregivers for a long time. Under the Neoliberalism and community care ideology , the government reinforced the responsibility of caring towards family; moreover, with the traditional value of familism along with the stigmatization of dementia, the care needs of people with dementia are left to family caregivers. Due to the notorious difficulties in dementia care, caregivers are facing tremendous care burdens and are in urgent need of support from the government. This study is based on qualitative research method with semi-structured depth-interview as a means of data collecting. It includes 7 dementia family caregivers and 5 senior professionals , with an aim to explore the caregivers’ experience about the using of services provided by the government, and their viewpoints on how the government should do to provide better support them. Services investigated in this study includes 8 services from the government: home care, day care, long-term care institution, respite care, group home, Family of Wisdom, School of Wisdom, supporting service for family caregivers. The result shows that the service use of dementia family caregivers varies. It depends on the phases of the disease and the severity of Behavioral and Psychological Symptoms of Dementia (BPSD) of the people with dementia, and the family caregiver’s employment status, social economic background, perceptions on service use. As to the access of the service system, caregivers enter the system from various entries and therefore facilitate the use of service. The existing problems of the service system are: discontinuity and fragmentation, inaccessibility, unaccountability, lack of user participation, insufficient concerns about diversity, and the malfunction of care management. This study indicates that the service use of the dementia family caregivers is associated with the service provision of dementia care and the ethical values derived from social and cultural context. The triadic interactions show: (1)the government provides inadequate support for the desperate need of family caregivers; (2)caregivers are confronted with “double stigmatization” of tradition family value and dementia; (3)the service system are facing problems in expanding its capacity under the ideology of familism and community care. Based on the findings, this study brings up some suggestions. Firstly, in the policy field, dementia care should be recognized as social right; the government as well as the family is responsible for the care of people with dementia; division of labor among government departments in dementia care should be reorganized. Secondly, in the practical field, it’s important to put more emphasize on the unique need of dementia care, to reinforce the implementation of care management, to build a dementia care network, to advocate the rights of people with dementia and their caregivers and promote user participation, and to recognize the value of caring.