Patients’ and carers’ experiences and perspectives of the management of anxiety and depression in people with dementia

Introduction
Many people with dementia (PwD) are affected by anxiety and depression, leading to significant changes in patient behaviour, carer burden and negative patient outcomes. Anxiolytics and antidepressants are commonly prescribed for PwD and may contribute to potentially inappropriate prescribing. This study aims to explore patients’ and carers’ experiences and perspectives of the management of depression and anxiety in PwD.

Methods
An online discussion forum, Talking Point, hosted by the Alzheimer’s Society, was searched for relevant archived threads and posts. These were identified using 64 search terms such as “depression” and “SSRI”. Data were extracted into Microsoft Word and inductive thematic analysis is ongoing to code the data and identify pertinent key themes.

Results
In total, 3539 posts were identified from 931 registered forum users. Initial findings have highlighted that anxiety and depression were commonly experienced by PwD and many described the difficulties in differentiating depression from dementia during the early stages of dementia. “Initially my wife was treated for depression and anxiety but that soon changed to MCI [mild cognitive impairment], then dementia…” [TP019]. Forum users described the use of anxiolytic and antidepressant medications as a process of trial and error: “The GP gave her sertraline but that didn’t work so now on mirtazapine. Only been 10 days and really makes her sleep just with half a tablet but now crying again” [TP022]. Frank accounts of the symptoms that PwD experienced were shared, highlighting the impact depression and anxiety has on both patients and their carers.

Conclusion
This online discussion forum is a source of rich and valuable data, which may not be accessible through traditional qualitative methods. This study will provide authentic insights on patients’ and carers’ lived experiences of managing anxiety and depression in PwD and will inform further qualitative work with key stakeholders.