Half of family caregivers of people with dementia report some abusive behavior toward the person they are caring for and one-third report “significant” levels of abuse.
Researchers believe this is unsurprising, as most people with dementia are being cared for by dedicated family or friends, often with little support.
“Many people think about elder abuse in terms of “lashing out” and other similar acts, but abuse as defined by government guidelines (UK) can be as simple as shouting or swearing at the person being cared for,” noted Dr. Claudia Cooper from the University College London and lead author of the study.
The UK government is currently studying a revision of their policy for safeguarding vulnerable adults.
This focuses entirely on preventing abuse by paid caregivers, but in light of their clinical experience the authors wanted to find out how common abusive behavior occurs. They comment that a policy on abuse will be ineffective unless it is realistic about the problems that family caregivers are facing.
The researchers conducted a survey of 220 family caregivers of people with dementia newly referred to psychiatric services and living at home.
115 (52.3 percent) of the caregivers 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). Caregivers 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 (never) to 4 (all the time). A score of more than two on one question is defined by this scale as ‘significant’ abuse.
Dr. Cooper added: “This is the first representative survey to ask family caregivers about abuse. It shows that abusive behavior toward people with dementia from family caregivers 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 toward families who provide the majority of care for older people, rather than exclusively at paid caregivers.
“The UK government is currently revising its policy in this area, but unfortunately their review is entirely focused on preventing abuse by paid caregivers, suggesting that abuse is confined to the formal care system whereas our research suggests this is not the case.
“The vast majority of family caregivers 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.
“Health care professionals can be reluctant to ask about abuse by family caregivers, but this attitude can be very unhelpful to caregivers 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.”
The study is published in the British Medical Journal (BMJ).
Source: University College of London