Abuse of People with Dementia by Family Carers Common

Author: University College London
Published: 2009/01/23 - Updated: 2025/06/23
Publication Details: Peer-Reviewed, Paper, Essay
Category Topic: Carers - Caregivers - Academic Publications

Page Content: Synopsis - Introduction - Main - Insights, Updates

Synopsis: This article examines the troubling prevalence of abuse against people with dementia by family caregivers, drawing on a British study that highlights how emotional mistreatment and neglect are more common than many realize. It discusses the types of abuse encountered, the challenges caregivers face, and the reasons such incidents often go unreported. The information is useful for seniors, individuals with disabilities, caregivers, and healthcare professionals, offering valuable insight into a rarely discussed but critical issue that can inform better care strategies and interventions. By shedding light on the emotional toll dementia can take on both caregivers and those they care for, the article emphasizes the urgent need for better support systems and awareness - Disabled World (DW).

Introduction

Half of family carers of people with dementia report some abusive behavior towards the person they are caring for and one third report 'significant' levels of abuse, according to new research from UCL (University College London) published today in the British Medical Journal (BMJ).

Main Content

The paper authors feel that this is unsurprising, as most people with dementia are being cared for by dedicated family or friends, often with little support.

Dr Claudia Cooper, UCL Department of Mental Health Sciences and lead author of the study, said:

"Many people think about elder abuse in terms of "lashing out" and other similar acts, but abuse as defined by government guidelines can be as simple as shouting or swearing at the person being cared for."

The UK government is currently consulting about a revision of their policy for safeguarding vulnerable adults. This focuses entirely on preventing abuse by paid carers, but in light of their clinical experience the authors wanted to find out how common abusive behavior is and highlight that policy on abuse will be ineffective unless it is realistic about the problems that family carers are facing.

The researchers conducted a survey of 220 family carers of people with dementia newly referred to psychiatric services and living at home. 115 (52.3 percent) of the carers reported some abusive behavior, such as very occasionally screaming or yelling, and 74 (33.6 percent) reported significant levels of abuse, such as more frequent insulting or swearing at the person for whom they care. Only 1.4 percent reported significant physical abuse.

The measure used by the researchers in the study is known as the Modified Conflict Tactics Scale (MCTS). Carers answered questions about how often in the last three months they had acted in five psychologically and five physically abusive ways on a scale of 0-4 (never - all the time). A score of more then two on one question is defined by this scale as 'significant' abuse.

Dr Cooper added:

"This is the first representative survey to ask family carers about abuse. It shows that abusive behavior towards people with dementia from family carers is common according to the scale used, with a third reporting 'significant' levels of abuse, and half some abusive behavior. We found few cases of physical or frequent abuse, although those with the most abusive behavior may have been reluctant to report it, or take part in the study in the first place."

Co-author Professor Gill Livingston added:

"Our findings suggest that any strategy for safeguarding vulnerable adults must be directed towards families who provide the majority of care for older people, rather than exclusively at paid carers. The UK government is currently revising its policy in this area, but unfortunately their review is entirely focused on preventing abuse by paid carers, suggesting that abuse is confined to the formal care system whereas our research suggests this is not the case."

"The vast majority of family carers do a fantastic job under very difficult circumstances and although levels of minor abuse seem high according to the scale used, there may need to be a redefinition. Healthcare professionals can be reluctant to ask about abuse by family carers, but this attitude can be very unhelpful to carers who are worried about their own actions and want to talk about them and get help. Considering elder abuse as a spectrum of behaviors rather than an "all or nothing" phenomenon could help professionals to ask about it and therefore offer assistance."

*No secrets: guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse. March 2000, 1-42.

Insights, Analysis, and Developments

Attribution/Source(s): This peer reviewed publication was selected for publishing by the editors of Disabled World (DW) due to its relevance to the disability community. Originally authored by University College London and published on 2009/01/23, this content may have been edited for style, clarity, or brevity.