Abstract
BackgroundThere are about 9.5 million people with dementia in China. Up to 99% of them are cared for by their family caregivers. Family caregivers are confronted with considerable difficulties and challenges while providing care. They often experience high levels of emotional, physical, financial, and social burdens. Caregivers in rural areas experience an even higher level of burden compared to their counterparts in urban areas due to fewer health resources for dementia care. However, so far, no intervention study has been conducted to support family caregivers in rural areas of China. The aim of this proposed study is to adapt and evaluate an evidence-based and culturally-tailored individualized telephone-based care support (ITBCS) program for family caregivers of people with dementia in rural China.MethodsA cluster randomized controlled trial (RCT) will be conducted to evaluate the effectiveness of the ITBCS compared with usual care for Chinese rural family caregivers of people with dementia. A total sample of 168 rural family caregivers will be recruited. The intervention components consist of a 3-month intensive telephone-based care support intervention followed by telephone-based follow-up consultations for 6 months. The control group will receive usual care services available for them. Outcome measures include carers’ subjective burden, depressive symptoms, health-related quality of life, social support, caregiving self-efficacy, and care recipients’ difficult behaviours and competence in activities of daily living at 3, 9 and 15 months after baseline. The potential cost-effectiveness of the ITBCS compared with usual care will be assessed as well.DiscussionIf effective, the ITBCS program can be adapted and used in rural areas of China as a blueprint to improve the quality of home-based care for people with dementia. Findings from the present study are significant for developing evidence-based dementia care policy in rural China.Trial registrationChinese Clinical Trial Registry, ChiCTR2000038821, Registered 4 April 2020, http://www.chictr.org.cn/showprojen.aspx?proj=62268.
Highlights
There are about 9.5 million people with dementia in China
This is especially true in China where dementia care services are underdeveloped, and the Chinese mainstream culture, traditional Confucianism, emphasizes that the care and support of the elderly is the responsibility of their family [4, 5]
Based on a comprehensive literature review, we found that telephone-based multi-component caregiver support interventions have shown positive effects on care burden, social support, depressive symptoms, and caregiving selfefficacy of family caregivers of people with dementia [15, 23, 24]
Summary
Study design A cluster randomized controlled trial (RCT) design will be used to conduct the ITBCS program. Setting The study will be conducted in Hanshou County of Hunan Province, Central South of China. It has a population density of 382.6 people per square kilometer. Participants Eligible participants are defined as: 1) the primary family caregivers of a people diagnosed with dementia living at home; 2) aged 18 years or above; 3) having access to a reliable telephone; 4) having cared for people with dementia for no less than 6 months; 5) able to communicate in Mandarin, and 6) able to provide informed consent to participate in this study. Intensive ITBCS intervention Each family caregiver will receive 12 telephone contacts distributed over 3 months that focus on five care support themes. P-1: Initial orientation talk; P-2: Education booklet delivery; P-3: Theme 1 introduction; P-4: Theme 1 evaluation; P-5: Theme 2 introduction; P-6: Theme 2 evaluation; P-7: Theme 3 introduction; P-8: Theme 3 evaluation; P-9: Theme 4 introduction; P-10: Theme 4 evaluation; P-11: Theme 5 introduction; P-12: Theme 5 evaluation F-1 to F-6: Monthly follow-up consultations C-1 to C-3: Telephone-based follow-up to improve compliance T-0 to T-3: Data collection
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