Quality of Life of People with Dementia and their Informal Caregivers - A Clinical and Economic Analysis in New Zealand
Thesis DisciplineHealth Sciences
Degree GrantorUniversity of Canterbury
Degree NameDoctor of Philosophy
Background: Multivariate analyses of quality of life (QoL) in dementia are relatively rare. This study was the first aiming to measure QoL 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.
Methods: In this prospective cohort study, questionnaires (including the Quality of Life-Alzheimer’s Disease Scale and the Neuropsychiatric Inventory) investigating various QoL-domains were administered to 53 outpatients of a memory clinic recently diagnosed with dementia, and their caregivers at baseline and 12-month follow-up. Time and resource utilisation were assessed in order to identify direct and indirect costs using questionnaires and diaries (over 12 months).
Results: Cognition scores of persons with dementia (PWDs) ranged from 49 to 91 on the Modified-Mini-Mental State Examination (3MS); scores on the Clinical Dementia Rating Scale (CDR) ranged from 0.5 to 3, with 83% of PWDs being in the early stages of the illness at baseline (CDR ≤ 1). Most PWD measurements confirmed the predicted correlations including a strong link between PWDs’ and caregivers’ QoL. Many correlations remained stable over 12 months. Combined information and support interventions achieved significantly better PWD and caregiver QoL than single interventions. Direct costs (including costs of informal caregiving time) increased with an increase in dementia severity, neuropsychiatric and behavioural symptoms and functional limitations. There was a clear trend that caregivers were more distressed if patients received less in-home support. Direct non-medical costs of PWDs living at home did not increase with the severity of PWDs’ cognitive impairment. In 2008/09, there were an estimated 1,896 persons in Canterbury providing a total of 5.47 million hours of care for PWDs. This unpaid care had a value of NZ $135.8 million. Caregivers were much more likely to be depressed if they had a low income. More than one-third of family-caregivers (39.5%) thought that 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 PWDs’ and caregivers’ QoL calls for a systemic approach in dementia care. QoL can be sustained over 1 year in a cohort of mainly early dementia patients and their informal caregivers. Developing psychosocial and financial incentives could be a key factor to support PWDs and their informal caregivers in New Zealand, consequently enabling them to live in the community for longer. These outcomes also have implications for health professionals and social policy makers which must be addressed as health practitioners and the wider community strive both for best practice and for cost-effective care of our increasingly ageing population.