Good Days and Bad Days in Dementia: Variability in Symptom Expression

People with Alzheimer's disease (AD) and their carers often refer to "good days" when their condition seems better than usual and "bad days" when it seems worse. Sometimes they describe periods of clearer thinking or improved function that challenge how we understand the relentless progression of dementia. Other times, a single action can generate the feeling of it having been a good day -for example, when a person suffering language loss suddenly speaks a whole sentence in a correct context. Symptoms of AD are not traditionally thought to have fluctuations (a common feature of other dementias); so what makes for a good or bad day (GDBD) in AD has been little studied. We began investigating symptom fluctuations in AD attributed to GDBD by looking at interview data from the VISTA study and found that 32/130 (25%) of mild-moderate patients were described as having GDBD. More recently, in a review of memory clinic charts over two years, notations about GDBD were found for 16% (35/221) of AD patients. To deepen our understanding of this phenomenon, we will survey and interview informal caregivers of patients with mild-moderate AD in a way that will help us characterize what they are describing when they talk about experiencing GDBD. A mixed methods approach will be used to analyse the data qualitatively (to understand what it means to have GDBD) and quantitatively (to gather statistics about GDBD in relation to clinical factors, social factors and personal traits). We hope this research will help us see patterns that can tell us something new about what's happening in the brains of people with AD, or that could be translated into better ways of measuring or helping with fluctuations that are characteristic of AD -for example, to maximize the number and quality of "good" days or reduce the number and severity of "bad" days.