Half of family carers of people with dementia report some abusive behaviour 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).
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 behaviour 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 per cent) of the carers reported some abusive behaviour, such as very occasionally screaming or yelling, and 74 (33.6 per cent) reported significant levels of abuse, such as more frequent insulting or swearing at the person for whom they care. Only 1.4 per cent 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 behaviour 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 behaviour. We found few cases of physical or frequent abuse, although those with the most abusive behaviour 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 behaviours rather than an "all or nothing" phenomenon could help professionals to ask about it and therefore offer assistance."
Notes for Editors
1.) * No secrets: guidance on developing and implementing multi-agency policies and procedures to protect vulnerable adults from abuse. March 2000, 1-42. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4008486
2.) For further information, or to arrange an interview with the researchers quoted, please contact Ruth Metcalfe in the UCL Media Relations Office on tel: +44 (0)20 7679 9739, mobile: +44 (0)7990 675 947, out of hours: +44 (0)7917 271 364, e-mail: firstname.lastname@example.org
3.) Interviews and case studies are available by contacting Alzheimer's Society Press Office on 020 7423 3595
4.) The paper 'The CARD study – abuse of people with dementia by family carers' is published online ahead of print in the British Medical Journal at 00.01 on Friday 23 January. Advance copies can be obtained by journalists from the UCL Media Relations office using the contact details above.
5.) This research was funded by a research training fellowship awarded to Dr Cooper by the Medical Research Council. The author's work was carried out independently of the funders.
Founded in 1826, UCL was the first English university established after Oxford and Cambridge, the first to admit students regardless of race, class, religion or gender, and the first to provide systematic teaching of law, architecture and medicine. UCL is the seventh-ranked university in the 2008 THES-QS World University Rankings, and the third-ranked UK university in the 2008 league table of the top 500 world universities produced by the Shanghai Jiao Tong University. UCL alumni include Marie Stopes, Jonathan Dimbleby, Lord Woolf, Alexander Graham Bell, and members of the band Coldplay. UCL currently has over 12,000 undergraduate and 8,000 postgraduate students. Its annual income is over £600 million.
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