Dementia Centred

By Lesley Carcary

September 15th, 2016

Elder abuse and dementia

Although the shameful blight of elder abuse is an issue across the world, it is still very much an invisible problem.

Many victims are often reluctant or unable to speak up or report it, while members of the public and practitioners are often simply unable to accept that it happens or appreciate the extent and wide-ranging nature of the problem. It’s been widely documented by various studies that people with dementia are at a higher risk of elder abuse, and that in most cases, the abuser is well known to the victim.  But given the difficulties in identifying the signs of abuse among older people with dementia, how can it be detected and the risk of abuse minimised? 

Action on Elder Abuse defines elder abuse as:

‘a single or repeated act or lack of appropriate action, occurring within any relationship where there is an expectation of trust, which causes harm or distress to an older person’. 

This might include physical, psychological or sexual, as well as financial abuse and neglect.  It can take place anywhere, including the older person’s own home, a care home, hospital or community setting. While any act of violence or mistreatment of an older person is unacceptable, elder abuse (as we define it) is particularly appalling as its key focus relates to situations where the opportunity exists for one person to abuse the relationship of trust.  Perpetrators might therefore be family members, paid or unpaid carers, practitioners, or neighbours or friends. However, we do appreciate that sometimes abuse is not intentional. Often it can be ‘passive’ because someone lacks the skills or support they need to adequately care for another person. 

While it is difficult to determine the actual extent of elder abuse due to under-reporting, the World Health Organisation estimates that around 1 in 10 older people across the world experience abuse every month. In the UK, Action on Elder Abuse estimate that 4% of older people experience abuse in their own homes, with the figure rising to 8.6% when taking into account abuse in any environment.

It’s widely accepted that the effects of dementia can make older people particularly susceptible to harmful behaviour and exploitation by others.  Not only are they likely to be less able to articulate their feelings and experiences, but they may also be unable to remember or understand what has happened to them.  People with dementia may also be less likely to seek help, advocate for themselves or have the mental or physical capacity to remove themselves from potentially abusive situations.  

Given that the presence of dementia can make it particularly difficult to detect abuse as the symptoms of both can often be similar (e.g. withdrawal, reluctance to communicate, anxiety, etc), elder abuse can therefore be incredibly difficult to identify among those with dementia. Various international studies have measured the prevalence of elder abuse among people with dementia, ranging from 28% to 55%. Of the types of elder abuse examined, psychological abuse was consistently the most prevalent form of abuse of people with dementia, ranging from 28% to 62%. However, most studies have found that concurrent abuse is common, with perpetrators engaging in more than one form of abuse.

As older people are often dependent on others and may have limited social contact, it’s perhaps unsurprising that family caregivers are often the perpetrators of elder abuse. At least three international studies found overall rates of abuse of people with dementia by their caregivers ranging from 34% to 62%, with some authors pointing to the unique challenges, demands, stresses and burdens associated with caregiving in dementia which can increase the risk of abuse.  Having dementia of course doesn’t automatically increase an older person’s risk of abuse from their caregiver, but there are additional risk factors. An American study in 2010 (Wiglesworth, et al)  found that various characteristics of both the caregiver and care recipient can contribute to abusive behaviour, including:

  • the caregiver’s anxiety, depressive symptoms, social contacts, perceived burden, emotional status, and role limitations due to emotional problems; and 
  • the care recipient’s functional capacity, severity and stage of the dementia, their aggressive and physical assault behaviours, depressive symptoms, and their social contacts; and
  • the income and education of the care giver and care receiver.

This study suggested that these characteristics could be used as the basis of an effective screening tool for predicting whether the caregiver is mistreating the care recipient. This could indeed be a useful means of detecting possible indicators of abuse at an early stage, as well as having potential for putting in place an effective package of support for family carers of those with dementia.

But how can abuse perpetrated by others be detected and minimised? What about other family members who do not have a caring role, health and social care staff, or other people known to the older person who may try to exploit their vulnerability? We’re fortunate in Scotland to be the only country in the UK with dedicated adult safeguarding legislation (the Adult Support and Protection Act) which puts in place duties for various public bodies to report actual or suspected cases of abuse of vulnerable adults.  The Act also requires councils to make enquiries and take action to support and/or protect the victim where necessary.  For those with dementia, the framework is generally effective, but relies upon victims and/or their families having the capacity and confidence to speak up, and professionals’ awareness and understanding of the complexities of dementia as a risk factor.

In conclusion, there’s probably no one-size-fits-all solution to the problem of tackling elder abuse among people with dementia, but there are steps that can be taken to minimise the risk. Screening tools, support for carers, and effective legal protection are likely to be valuable, but there’s also a general need for us all to increase awareness of the issue to encourage victims and those concerned about them to speak up and seek support. All older people deserve dignity, respect and support when they need it – let’s end elder abuse together.  

If you are concerned about an older person who you think may be experiencing any form of harm, abuse or neglect, you can call Action on Elder Abuse’s freephone confidential Helpline on 080 8808 8141.


[1] ‘Screening for abuse and neglect of people with dementia’, A. Wiglesworth, L. Mosqeueda, R. Mulnard, S. Liao, L. Gibbs, W. Fitzgerald. The American Geriatrics Society (2010), 58: 493-500.


Lesley Carcary is the Director of Action on Elder Abuse Scotland

 

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