Understanding and managing dementia-related sleep problems : community-based research with older New Zealanders : a thesis presented in partial fulfilment of the requirements for the degree of Doctor of Philosophy at Massey University, Sleep/Wake Research Centre, Wellington, New Zealand

Abstract

Sleep changes with ageing and people with dementia and their carers often have disturbed sleep, but information on the sleep of older New Zealanders is lacking. Four studies were conducted in order to address these factors. The first two used pre-existing survey data to understand the sleep health of older people, and to explore the relationship between caregiving and sleep. Sleep problems were reported by 20-32% of participants, prevalence decreased with increasing age. In those aged at least 79 years, sleep problems were associated more with health status rather than demographic factors. Older carers were more likely to report feeling tired than non-carers. Dementia-related sleep problems are challenging for individuals and their carers, and poor sleep may exacerbate waking dementia symptoms. However, there is limited research with community-dwelling dyads of people with dementia (PWD) and their carers. Studies 3 and 4 were conducted to understand and treat dementia-related sleep problems. Focus groups with 12 dyads revealed the multifaceted nature of their sleep problems. Normalisation of sleep problems was common. In the final study, a five-week trial was piloted involving sleep education, light therapy and an exercise programme. Sleep of the dyads was monitored using actigraphy and standardised questionnaires. Questionnaires also measured cognitive functioning, quality of life, and dementia-related disruption, as well as carers’ mental health and coping. Fifteen pairs participated, of whom nine completed the trial. Case studies revealed that five PWD had improvements to their subjective sleep ratings. These PWD also showed some improvements in wake time at night, cognitive functioning, and carer-rated quality of life. These changes did not always translate into improved sleep or mental health for carers. Many PWD’s health deteriorated across the trial, masking the effects of the intervention. Overall, these studies illustrate the importance and diverse nature of sleep with ageing, dementia, and caregiving. Non-pharmacological interventions can be used successfully by some community-dwelling dyads. It is recommended that these low-risk interventions are considered by healthcare professionals. Increased knowledge and options could empower individuals to manage their own symptoms, providing hope for improving the sleeping and waking experience of older people affected by dementia.