Care Partner Dynamics: Unraveling the Complex Factors Contributing to Abuse
Abuse in older adults is a complex and multifaceted issue that can be better understood from two distinct viewpoints. On one hand, elder abuse encompasses the mistreatment of vulnerable older adults who often suffer from physical, emotional, and financial abuse at the hands of those meant to care for them. This issue spans a wide spectrum of mistreatment, including various forms of harm inflicted ranging from neglect to financial exploitation. What makes this issue even more challenging is that many abusive behaviors are less apparent and go unnoticed by others, including physicians, evading and complicating detection entirely. Alternatively, it’s also necessary to understand the context and circumstances of family members or friends caring for someone with Alzheimer’s Disease and Related Dementias (ADRD), particularly with regard to the challenges and strains that can arise as the care role grows in intensity and demand with the progression of the disease. Here, we hope to shed much-needed light on the overlooked issue of abuse targeting older adults inflicted by and sometimes upon family caregivers from the people who they care for by exploring the stigmas surrounding this topic to increase awareness and sharing steps that you can take to protect yourself and others.
Abuse Towards Individuals with Dementia
In their report titled Elder Mistreatment: Abuse, Neglect and Exploitation in an Aging America, the National Research Council (NCR) defines this mistreatment as “(a) intentional actions that cause harm or create a serious risk of harm, whether or not intended, to a vulnerable elder by a caregiver or other person who stands in a trust relationship to the elder or (b) failure by a caregiver to satisfy the elder’s basic needs or protect the elder from harm” (p. 40). However, in the lives of caregivers and their care-recipients, conceptualizing and/or recognizing abuse is not so straightforward, and it’s even more difficult to ask for help when needed.
Current estimates indicate that at least 10% of adults aged 65 and older will, at some point in their lives, experience any of the multiple forms of abuse in a given year, including neglect, financial exploitation, psychological abuse, and/or physical abuse. Additionally, one in six people over the age of 60, as reported by the World Health Organization (WHO), experienced any of the aforementioned forms of abuse in 2022. Generally, abuse of older adults is discussed in the context of long term care facilities where the estimated rate of abuse significantly increases for residents, with two in three staff members self-reporting that they have engaged in acts of abuse within the past year. That makes up 64.2% of staff members in long-term care facilities admitting that they perpetrated some form of abuse; psychological abuse being the most prevalent at 32.5%, followed by neglect and physical abuse. While there are more reports from residential care facilities, family caregivers can also be perpetrators of abuse. In a community setting, around 66% of family caregivers have admitted to engaging in at least one abusive episode toward the care recipient within the past year. To break it down, 63.5% reported psychological abuse, 9.4% reported physical abuse, 3.9% reported financial abuse, 2.4% reported sexual abuse, and 6.5% reported neglect. This 2022 study conducted among home-dwelling caregivers of persons with ADRD in Norway, uncovered that when family caregivers were tending to individuals with dementia, the likelihood of abusive episodes was higher if the caregiver was the spouse or partner of the individual with dementia and had experienced forms of aggression from them in the past.
Despite these staggering statistics, only around 15% of older adults who are victims of abuse receive formal support services annually However, this statistic is generated by data that can only be derived from reported cases. Due to reporting bias, the overall prevalence estimates are significantly underestimated due to factors such as fear of losing the support of the caregiver (financial or otherwise), a fear of not having control of the situation after disclosure, or cultural and family dynamics. These fears, along with the cognitive and personality changes that are often associated with dementia, such as heightened aggressive tendencies, make it that much more complex to comprehensively identify, assess, and address potential cases of abuse. Dementia related behavioral symptoms also make abuse more likely to transpire as the disease progresses with increasing physical and cognitive debilitation. Individuals diagnosed with dementia are 5% more likely to display aggressive behavior than healthy controls. Furthermore, a substantial 96% of those suffering from dementia will display severe aggression at least once during the progression of their disease. Dementia-related aggression is often exhibited with tasks involving personal care or discomfort, including resisting assistance from the caregiver and can result in heightened violent behavior from the person with dementia. These personality changes can be sudden and extreme- making it increasingly difficult for the caregiver to assist with even the most basic care tasks.
Abuse Experienced by Caregivers
Providing care for individuals with ADRD is a substantial undertaking, marked by dedication and compassion, and often caregivers are left with very little choice in taking on the role. Considerable demands are placed on family caregivers, often leading to emotional and physical exhaustion. The issue of abuse toward these caregivers by the very people who they are meant to care for, is often shrouded in silence. Violence directed by older adults with chronic diseases towards their caregivers is strongly correlated with caregiver burden and depression, particularly those family caregivers providing care for their ADRD patients. Many studies have discussed the connection between exposure to aggressive or violent behaviors by care-recipients and poor mental health outcomes among family caregivers. This can also lead to many negative feelings and emotions, such as anger, guilt, or even lack of preparedness for caregiving demands. Not only does this negatively affect the caregiver and their perception of their own abilities to effectively provide care, but it also directly affects the relationship between the caregiver and care recipient, which compromises care quality. As it becomes harder to stop violence entirely, a small step we can take to keep caregiver-care recipient relationships strong is to dedicate time to address both parties involved. Recognizing these unique challenges is essential to offer support for the caregivers’ and their care recipients’ physical and mental well-being.
Regardless of the specific scenario and who the affected individual may be,
In closing, here are a few tips for dealing with aggression from a person with ADRD:
Recognize that this is not uncommon, and you are not alone.
Recognize that this behavior is not personal, and look at it in the context of the disease while keeping in mind that you still deserve to be treated respectfully and to feel safe.
Try to identify what might be the underlying cause of the behavior. A new medication or change in routine can cause distress in patients, leading to agitation.
Lastly, try to find a solution that will be best for everyone involved. This might mean finding calming activities, finding respite care to take a break from caregiving responsibilities, speaking to a therapist, or other solutions. The safety of the patient and yourself are of the utmost importance.
If ever faced with a situation in which you are experiencing abuse or know someone who is being abused, there is always something you can do and someone you can call. The following are a few resources that you can use at any time:
Elder Abuse Hotline by State: https://elderprotectioncenter.com/state-elder-abuse-hotlines/
NIA Alzheimer's and related Dementias Education and Referral Center: www.nia.nih.gov/alzheimers
Information and Helpline from the Alzheimer’s Association: https://www.alz.org/help-support/caregiving/stages-behaviors/agression-anger?gad=1&gclid=Cj0KCQjwoeemBhCfARIsADR2QCtu3Z9jopVQchBaj9QkAgK4WB5nzu8cFWEhmPurJLGRs1YT1oDdr5caArsTEALw_wcB