Violence against family caregivers: Symptom of the disease or abuse?
- Illness and caregiving challenges can lead to a cumulative and prolonged state of stress, referred to as "caregiver burden".
- Illness sometimes explains violent and abusive behaviours, but their effects on caregivers should not be minimized.
- Violent and abusive behaviours towards family caregivers is a sensitive subject. Studies have shown that family caregivers are reluctant to denounce the violence they experience, for fear of looking bad or appearing incompetent, or even for fear that their loved one will be taken into State care.
One of the most prevalent and disabling diseases affecting older adults is dementia. It is estimated that by 2030, nearly one million Canadians will be living with dementia.(1) About 6 in 10 older adults with dementia live at home.(2) These people will increasingly rely on others to do so. It is often a family member, such as a partner or an adult child, who takes on the role of caregiver. Caring for an older adults with dementia can present some challenges. Indeed, a quarter of them display symptoms of depression and sometimes show complex behaviours (including violence) and resistance to care.
We often hear about cases of older adults being victims of poor care, being neglected or being financially abused by their family caregivers. But sometimes, it is the family caregiver who is a victim. In fact, it is estimated that up to 4 in 10 family caregivers experience violence from their loved one living with dementia.
But how can we determine if this is the symptoms of a disease or an act of abuse?
What research tells us
A recent evidence synthesis of 18 studies examined what is known about violent and abusive behaviours of older adults towards their family caregivers.(3) Little research has been done on this phenomenon and terms and definitions vary from article to article. However, it is clear that some caregivers experience extreme and regular violence.
Factors contributing to caregiver abuse
There is a link between violent behaviour and dementia-type illnesses: some older adults living with dementia may use physical and verbal violence as a way to communicate their needs or frustrations. In addition, family caregivers may be unable to recognize the signs of distress among older adults living with dementia, which can also lead to aggressive behaviours.
Studies have shown that there is more violence against the family caregiver when:
– levels of cognitive and physical impairments are high
– caregivers and older adults both have symptoms of depression
– relationships are bad or dysfunctional
– caregivers have already experienced violence from the older adult, even before the diagnosis of dementia.
Effect of past family experiences
Studies revealed that the nature, quality, and trajectory of family relationships influence the dynamics of violence. Moreover, the disease can aggravate the dysfunctional dynamics already present. Thus, caregivers who have experienced abuse in childhood or adulthood may act less caringly and even violently in revenge.
Furthermore, many caregivers, especially female caregivers, believe that power relations and abusive behaviours are normal in caregiving relationships (as well as in love). Therefore, they do not consider themselves to be experiencing violence or abuse. In some cases, in some dysfunctional couples, the disease makes it possible to come together and minimize past violence to build a new relationship based on love and care.
Strategies for family caregivers facing violence
You may feel stuck between your sense of duty, a sense of guilt, and concerns about your own well-being. If you are a victim of violent behaviours and abuse, here are some suggestions:
– Talk about it with family members you trust.
– Consult a mental-health professional for advice on how to deal with aggressive behaviours.
– Participate in training offered to family caregivers on stress management, effective communication and strategies for managing complex behaviours.
– Look for support programs and respite services to take time for you.
– If the situation becomes unsustainable and dangerous, it is essential to guarantee the safety of all family members. This may include seeking medical assistance or referral to specialized facilities for the care of the older adult living with dementia.
References
- Alzheimer Society of Canada. Dementia numbers in Canada. 2023.
- Canadian Institute for Health Information. Dementia in home and community care. Toronto: Canada, 2023.
- Isham L, Hewison A, Bradbury-Jones C. When older people are violent or abusive toward their family caregiver: A review of mixed-methods research. Trauma, Violence, and Abuse. 2019 Dec;20(5):626-637. doi: 10.1177/1524838017726425. Epub 2017 Aug 23. PMID: 29333998.
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