Background: Alzheimer’s disease affects 5.7 million individuals and ranks as the 6th leading cause of death in the United states. The UCLA Alzheimer’s and Dementia Care (ADC) program has proven to reduce caregiver strain, burden, depression, and lower Medicare costs. However, some caregivers and patients do not benefit from the program. To further develop the intervention and guide modifications, the present research describes participants who did not benefit, identifies the recommendations received, and interviews caregivers to obtain information about what could have been more helpful.
Methods: The study cohort includes the first 1091 participants in the UCLA ADC program. Participants and caregiver who did not show benefit from the program (n= 134) were the focus of this study. Recommendations made on initial assessment care plans for 5 categories: medical, advanced care planning, safety, caregiver education/training, and support and services were ascertained by medical record review. Stage of dementia was determined by Mini-Mental State Examination (MMSE) scores. Descriptive statistics were conducted to determine if recommendations varied by stage of dementia and caregiver burden measured by the Dementia Burden Scale Caregiver (DBS-CG).
Results: Drawn from the larger ADC population (n=1091) the mean age of patients enrolled in the program was 82.0 ± 8.8, 66% of enrollees were female, 27% were racial or ethnic minorities. The highest percentages of recommendations were made for weight management (0.16), starting memory medications (0.16), POLST (0.85), ID bracelets (0.69), in-home caregiver training/education (1.44), and in-person support groups (1.47). There was no difference in the frequency of recommendations across different stages of dementia and caregiver DBS scores, with the exception of mild stage and low DBS-CG that showed the highest frequency of recommendations in safety (0.28) and lowest in support and services (0.20).
Conclusions: Recommendations for persons who did not benefit from the UCLA ADC included those for both medical and social services and were similar regardless of dementia stage and DBS-CG score. Identifying the recommendations with the highest frequency will now guide telephone cognitive interviews with 50 caregiver who did not benefit from the program to determine their insight on the quality of the recommendations made and what additional services might have been more helpful.