With the rising prevalence of dementia and the relative shortage of professional medical resources, dementia-related health services should be increasingly provided by primary care institutions. Currently, China lacks community-based guidelines for dementia management, and post-diagnosis care lacks standardized guidance.
This study aims to evaluate domestic and international guidelines on post-diagnosis management of dementia using the Appraisal of Guidelines for Research & Evaluation InstrumentⅡ(AGREEⅡ), to analyze and summarize their recommendations, and to provide a reference for clinical practice.
A systematic search was conducted across major Chinese and English databases, including PubMed, Medline, Elsevier, CNKI, Wanfang Data and Yiigle, as well as websites such as Google Scholar, the Guidelines International Network (GIN), the National Institute for Health and Care Excellence (NICE), the New Zealand Guidelines Group (NZGG), the CMA Infobase, and the Scottish Intercollegiate Guidelines Network (SIGN), to identify guidelines related to community-based post-diagnosis management of dementia published in the past decade. The search was conducted up to October 2024. The AGREE Ⅱ instrument was used for quality assessment, and recommendations from guidelines graded as A and B were analyzed and summarized.
Eighteen guidelines were included in the study, comprising three from China, five from the United Kingdom, two from the United States, two from Canada, two from Europe, and one each from Japan, Australia, Malaysia, and India. According to the AGREE Ⅱ evaluation, only two guidelines were rated as Grade A, 10 as Grade B, and the remaining six as Grade C. The intraclass correlation coefficient (ICC) values between two researchers were all >0.75 (P<0.001). In terms of AGREE Ⅱ domain scores, Chinese guidelines scored lower than international guidelines in the "Scope and Purpose" domain (P<0.05). Recommendations from the 12 Grade A and B guidelines were synthesized and categorized into six themes: general principles, regular assessment, pharmacological management, non-pharmacological management, comorbidity management, and caregiver support.
The methodological quality of existing guidelines on post-diagnosis management of dementia requires improvement, and some recommendations lack applicability to the local context. Chinese scholars should strictly adhere to the scientific and normative principles of guideline development and promptly establish a localized post-diagnosis management guideline of dementia to better guide clinical practice.
People with dementia typically require ongoing care and comprehensive management following diagnosis. However, current long-term management strategies exhibit significant shortcomings, and the importance of family caregivers in their long-term care is often overlooked.
This study aims to develop a post-diagnostic management program tailored to the community context in Beijing, encompassing both patients with dementia and their family caregivers.
The research team constructed a draft of the management program using literature analysis and stakeholder interviews, and conducted an expert meeting in June 2025 to validate the draft. A total of 10 experts were invited to attend the meeting, and their basic information and authority levels were collected via the meeting invitation letter. Within three days after the meeting, the modified management program was sent back to the experts for verification, and they were asked to rate the importance of each item.
The expert authority coefficient was 0.86. The mean importance scores for all items ranged from 4.3 to 5.0, with coefficients of variation ranging from 0 to 0.22. The Kendall's coefficient of concordance for the importance scores of all items were 0.140 (P<0.05). The final program comprises five domains: follow-up assessment, medication management, non-pharmacological interventions, management of coexisting health problems, and caregiver support, as well as the corresponding division of responsibilities, and the corresponding management process has been formulated.
The program is scientifically sound, reliable, comprehensive, and considers practical implementation within primary care settings. It provides a feasible and evidence-informed framework for care of people with dementia and their caregivers in Beijing.
