Spontaneous concerns about risk and abuse reported by people with dementia and their carers
| DOI | https://doi.org/10.1108/JAP-12-2016-0030 |
| Date | 10 April 2017 |
| Published date | 10 April 2017 |
| Pages | 92-99 |
| Author | Susan M. Benbow,Paul Kingston |
| Subject Matter | Health & social care,Vulnerable groups,Adult protection,Safeguarding,Sociology,Sociology of the family,Abuse |
Spontaneous concerns about risk and
abuse reported by people with dementia
and their carers
Susan M. Benbow and Paul Kingston
Abstract
Purpose –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.
Design/methodology/approach –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 mentionthoughts on
risk and abuse in their narratives. A secondary analysis of the theme of risk/abuse is reported here.
Findings –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.
Research limitations/implications –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.
Practical implications –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.
Originality/value –The narratives offer unique insights into the concerns of PwD and family carers.
Keywords Safety, Risk, Dementia, Financial abuse, Vulnerability, Driving
Paper type Research paper
Introduction
This paper reports the findings from a study funded by the British Medical Association
Dawkins and Strutt grant. The aim of the study was to test whether the process of narrative
production would be beneficial to people with dementia (PwD) and carers. The study utilised a
grand-tour question:
I would like you to tell me the story of your life with dementia. The bestway to do this is to start from the
time that you first became aware that you (or your relative) might have dementia. Tell me all the things
that happened one after the other until today. Please take your time and give details. Everything is of
interest that is important to you.
The studywas not thereforespecificallydesigned to elucidateinsights intoparticipants’construction
of risk/abuse, nonetheless participants themselves either alluded to risk, or s pecifically mentioned
thoughts on risk and abuse. Journey with dementia was a shorthand term we used to describe
an individual’s experience of dementia (“thestoryofyourlifewithdementia”) and did not/does not
imply that there is one journey with dementia; each person’sexperienceisunique.
In this paper we have taken a broad dictionary definition of risk:
Risk –a chanceor possibilityof danger, loss,injury, or other adverseconsequences(Fowler et al., 1990).
Received 7 December 2016
Revised 15 January 2017
8 February 2017
Accepted 13 February 2017
This work was funded by the
British Medical Association
Dawkins Strutt grant 2009. The
authors thank Accord Housing, the
Alzheimer’s Society, Approach and
all the PwD and carers who took
part in this study.
Susan M. Benbow is a Visiting
Professor of Mental Health and
Ageing and Paul Kingston is the
Director, both at the Centre for
Ageing Studies, University of
Chester, Chester, UK.
PAG E 92
j
THE JOURNAL OF ADULT PROTECTION
j
VOL. 19 NO. 2 2017, pp. 92-99, © Emerald Publishing Limited, ISSN 1466-8203 DOI 10.1108/JAP-12-2016-0030
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