Good days and bad days: the lived experience and perceived impact of treatment with cholinesterase inhibitors for Alzheimer's disease in the United Kingdom

Although heralded as a major breakthrough in the treatment of Alzheimer’s disease the experience and impact of using cholinesterase inhibitors (CHEIs) from the perspective of people with Alzheimer’s disease has not been widely reported. This qualitative study reports the lived experience of CHEI users and the perceived impact of the treatment. The views and experiences of 12 older people referred for memory problems or receiving treatment and 11 associated family carers were obtained using a combination of semi-structured interviews and focus groups. A key theme that emerged from the qualitative analysis was the belief that any new treatment ‘is worth a try’. For some participants the benefits of using CHEIs were ‘difficult to say’. Others reported seeing ‘a difference’, ‘getting no worse’ or no improvement in their symptoms. The study highlights the importance of listening to the voices of people with dementia and their family carers in the management of pharmaceutical treatments and the need to involve (potential) treatment users in defining quality-of-life outcomes in cost-effectiveness studies.