Experiences of anxiety in dementia: exploring the perspectives of persons with dementia, caregivers, and healthcare professionals through qualitative interviews

Anxiety is a prevalent issue among individuals with dementia, yet there is a scarcity of qualitative research on this subject. In this paper, we aimed to explore the following questions: (1) How do persons with dementia experience and express their anxiety? (2) What is experienced or observed as helpful regarding anxiety in persons with dementia? We recruited three participants with mild to moderately severe dementia or amnestic mild cognitive impairment, their close caregivers, and nine healthcare professionals working with home-dwelling persons with dementia. Semi-structured interviews with the participants were conducted and analysed with a team-based thematic analysis informed by consensual qualitative research. Anxiety manifested as a latent uneasiness that could escalate into a distressing and paralysing state when triggered. We identified common triggers of anxiety, leading individuals to restrict their environment to what felt safe. Emotional support, safety, and predictability were crucial factors in helping persons cope with anxiety. A fundamental dilemma highlighted by healthcare professionals was to what extent the person with dementia should be exposed to or shielded from anxiety triggers. Anxiety is a natural response to feeling threatened or losing capabilities, suggesting that environmental support may help in managing anxiety. Gradually transforming unfamiliar or distressing situations into ones that feel safe and manageable was described by participants as helpful.