JMIR Publications

ABSTRACT

Background:

People with dementia and their caregivers experience significant psychological distress and may be at risk of trauma when coping mechanisms are overwhelmed. Specialist dementia helplines play a vital role by offering immediate support and information, however, little is known about how call handlers account for potential trauma in their responses. This study explored the extent to which trauma-informed principles are evident in the responses provided by call handlers on the UK’s only 24-hour dementia helpline.

Objective:

To explore the type and nature of calls to the only UK 24-hour dementia helpline and the extent to which trauma-informed principles are evident within helpline staff responses to carers and people with dementia.

Methods:

A retrospective analysis was conducted on 200 anonymised call-logs from Alzheimer Scotland’s 24-hour helpline. Data from call-logs were analysed using framework analysis informed by trauma-informed principles (safety, trustworthiness & transparency, choice, collaboration, and empowerment). Data is also reported by theme frequency and theme strength: theme frequency captured how often each theme appeared across the dataset (expressed as a percentage), while theme strength represented the researcher’s subjective assessment of the theme’s intensity within each call-log, measured on a Likert scale.

Results:

Most calls (86%) were made during daytime hours by a ‘carer/family member/friend,’ with 'emotional support' and 'carer stress' being the primary reasons for contact. Call-log responses aligned with several trauma-informed principles, with ‘collaboration’ being the most frequent response for daytime calls (69.5%) and 'safety' for night-time calls (79.4%). Across all responses, 'empowerment' emerged as the strongest theme, characterised by empathetic, non-judgmental responses that acknowledged caller strengths. Overall, 'collaboration' (27%) was the most frequently observed theme, reflecting efforts to share knowledge and engage callers with relevant resources. Call handlers tailored their approach based on the caller’s identity, with responses to ‘carers/family/friends’ most frequently displaying collaboration (70.4%). Analysis of calls from individuals seeking information for themselves revealed collaboration and empowerment were the most frequent themes (73.7%).

Conclusions:

The findings highlight the helpline's role as a critical resource for emotional support for individuals experiencing stress. They also contribute to understanding how a trauma-informed approach can be effectively applied in such interactions. Implications for developing a trauma-informed framework to guide helpline responses, particularly for high-risk groups such as dementia family carers, are explored. Clinical Trial: N/A