Objective: In order to rationally allocate resources and to improve the quality of life of people with dementia, it is necessary to assess their current health services status.
Methods: A population-based door-to-door caregiver survey was conducted in Beijing, Xi'an, Shanghai and Chengdu in 1998. Totally 1 141 individuals with dementia were found among 34 807 residents aged 55 years and over on the basis of national prevalence study of dementia. Then 428 families with demented patients were randomly selected for questionare interview. Interviews were completed in 405 but refused by 23 families. Measurements included demographic characteristics of patients and their caregivers, perspective of the victim of the disease, current awareness of the disease and medical and welfare services provided.
Results: Among 405 cases of dementia (including 298 cases of AD and 81 cases of VaD), mean MMSE scores were 16.3 +/- 5.3 for 157 mild cases, 12.7 +/- 5.4 for 135 moderate cases, and 6.2 +/- 5.8 for 110 severe cases. Most patients (96%) were cared for at home by family members. Among caregivers, 189 (48.8%) considered the impairment of cognition, behavior and daily living activity in demented persons as a result of normal aging. Half of the caregivers spend over 8 hours each day looking after the patient. Whether the caregivers brought their relatives with dementia to a doctor was determined by disease severity, i.e. 8.3% for mild, 13.5% for moderate, and 19.4% for severe in 1996 to approximately 1997 and 14.4%, 25.6% and 33.6%, respectively in 1998-1999. Of those, only 26.9% reported receiving a dementia diagnosis, and only 21.3% received a recommedation to take medication. However, there was no established standard treatment and only 2% patient's used Ache-I.
Conclusions: General education is needed to increase the public awareness of dementia. For patients with dementia, early diagnosis, early treatment and optimal care are important to improve their quality of life.