Spontaneous concerns about risk and abuse reported by people with dementia and their carers

The purpose of this paper is to look at concerns about risk/abuse expressed spontaneously by people with dementia (PwD) and their carers in narratives describing their journeys with dementia.

A total of 35 narratives were elicited from PwD, carers of PwD and couples where one partner was living with dementia as part of a study on the impact of producing narratives on PwD and their carers. Participants were found to allude to risk/abuse, or specifically mention thoughts on risk and abuse in their narratives. A secondary analysis of the theme of risk/abuse is reported here.

Concerns about risk/exploitation were often expressed in the narratives, and covered a range of areas including driving, safety in the home, safety outdoors, falls, finances, risk to PwD from others, risk to others from PwD, potential or actual police incidents and neglect.

The narratives were elicited as part of another project and participants were not asked directly about risk; themes reported here were brought up spontaneously by participants.

In relation to dementia a wide range of risk/abuse issues is of concern to PwD and their carers, including driving and financial vulnerabilities. PwD and carers are prepared to talk about risk/abuse when given an opportunity. It is important to investigate and understand experiences and concerns about risk/abuse if they are to be addressed in health and social care practice.

The narratives offer unique insights into the concerns of PwD and family carers.