Quality of life in dementia: Formal care and costs in New Zealand

Background: Multivariate analyses of quality of life (QoL) in dementia are relatively rare. This study was the first aiming to measure quality of life of persons with dementia and their informal caregivers in New Zealand. To date, it is also the only study examining what interventions from primary and secondary care in New Zealand are helpful for enhancing QoL and what these interventions cost. Participants/ Methods: In this prospective cohort study, questionnaires investigating various QoL-domains were administered to 53 outpatients, recently diagnosed with dementia, and their caregivers at baseline and 12 months follow-up. Time and resource utilization were assessed for identifying direct medical and non-medical and indirect costs using questionnaires and diaries over 12 months. Results: A strong link between patients’ and caregivers’ QoL was found. The data suggested that combined information and supports are related to better QoL outcomes than single interventions. Direct costs increased with an increase in dementia severity, neuropsychiatric and behavioral symptoms and functional limitations. Direct non-medical costs of PWDs living at home did not increase with the severity of patients’ cognitive impairment. An estimated 1,896 persons in Canterbury provided a total of 5.47 million hours of care for PWDs in 2008/9. This unpaid care had a value of NZ $135.8 million. Caregivers were more likely to become depressed if they had a low income (NZ$<=25,000). More than one-third of caregivers (39.5%) thought financial compensation for their time spent caring would enable them to look after the PWD at home for longer. Conclusions: A mix of different clinical and non-clinical (including economic) factors can predict QoL in dementia. The strong link between patients’ and caregivers’ QoL calls for a systemic approach in dementia care. Developing psychosocial and financial incentives could be a key factor to support persons with dementia and their caregivers in New Zealand.

Alzheimer - cost - dementia - formal care - predictor - quality of life