The Hidden Cycle of Violence: Family Caregiver and Elderly Care Recipient Abuse
By Guest Writer Diana Spore, PhD, MGS
This is the second in a series of blogs from Dr. Spore about the importance of the Adult Advocacy Centers’ work.
The National Center on Elder Abuse (NCEA) reports that one in ten seniors are victims of abuse, neglect, and exploitation. Estimated prevalence rates for elder abuse among individuals living with dementia range from 34% to 62% (NCEA). Advanced age and a diagnosis of dementia are not synonymous with “disabled” status. However, having a physical or mental impairment that markedly limits functioning in at least one area of major life activities is referred to as having a “disability,” using the Americans with Disabilities Act’s criteria. Individuals with progressive dementia face challenges with attending to activities of daily living and personal needs (e.g., bathing, grooming, routine “as ordered” medication use). They experience difficulties with reasoning, judgment, memory, concentration and comprehension as well as with handling financial matters.
Elder abuse most frequently occurs at the hands of family members, when perpetrators are known, particularly by those who are providing elder care. A reciprocal and “hidden” dynamic may exist or emerge between family caregivers (spouses as well as adult children) and elderly care recipients, one in which both parties are at high risk of or who are actually engaging in abusive behaviors. Both caregivers and care recipients may have disabilities, may have mental illnesses and/or dementia, and may be victims AND perpetrators of abuse.
Risk factors for abuse by caregivers include (1) caregiver burden (which may include intense feelings of resentment and anger); (2) caregiver mental health issues; (3) problematic dyadic relationships in the past (low quality, antagonism, narcissism, codependence, abuse of a power differential); and (4) being psychologically or physically abused by care recipients.
Individuals with disabilities who are seniors — at risk of abuse and victimization — are not all the same. Likewise, family members who engage in abuse, particularly those who are caregivers, do not fit in the same box. However, both groups have some similar risk factors: (1) having mental health issues (including problems with drug addiction); (2) having a history of being victimized or abused (e.g., by spouses and other family members); and (3) being codependent.
The cycle of violence may almost seem “normal” within families, cycling from child abuse, animal abuse, spousal abuse, and elder abuse. Caregivers and care recipients may have similar reasons for not reporting what is going on, including fear of retaliation, feelings of shame and fear of losing support. Caregivers who report abuse by care recipients may not be believed or may be perceived to be guilty; however, abuse of caregivers happens. While no form of abuse can be justified or viewed as acceptable, it may make a difference in the minds of caregivers if the relationship has long been abusive or if the current abuse is related to “symptoms” associated with dementia. For example, dementia can be related to violent outbursts (not limited to verbal abuse) and combativeness. Caregivers may be tempted to respond in kind or may fear that they might hurt individuals who are loved.
Caregivers have been found to be at risk of developing mental health issues (particularly depression) and physical health problems. While they may feel they have responsibilities to this person as their family member, the caregiver burden may be too much for some caregivers to handle. They may find themselves neglecting care recipients, and may feel they have no choice but to walk away, turning to actual abandonment, placing elders in nursing homes, or relying on the legal system, hoping that guardianship by other parties will occur. They may feel that the only option open to them is to call the paramedics or police when they are at risk of being seriously harmed, when absolutely necessary.
So what needs to be in place to prevent or stop reciprocal abusive behaviors or the cycle of violence? The Adult Advocacy Centers’ Model underscores the importance of coordinating services (investigation, prosecution, and treatment), training, education, multidisciplinary teams, and trauma-informed care. The Adult Advocacy Centers aim to provide support to individuals with disabilities who have been victimized and to strengthen partnerships with agencies and providers. Relationships need to be strengthened between criminal justice, aging organizations, Adult Protective Services, the Ohio Department of Mental Health and Addiction Services, the Ohio Department of Developmental Disabilities, and local mental health agencies (e.g., engaging in longer-term efforts to help build resilience among survivors of trauma and abuse) as well as physicians. State-level AND local-level service provision issues need to be addressed. This blog has focused on seniors with disabilities who live in the community. However, abuse between professional caregivers and residents of nursing homes as well as resident-to-resident abuse necessitate that alliances also need to be strengthened with long-term care ombudsmen and the Ohio Department of Health.
Diana Spore is an advocate for individuals facing mental health challenges and those who are living with dementia, a writer/editor, and a mental health consumer in recovery. Spore received her Master’s degree in Gerontological Studies from Miami University (Ohio), and earned a PhD in Human Development and Family Studies, with a concentration in aging, from Penn State. She completed postdoctoral training at Brown University. Spore’s areas of expertise include mental health and aging, mental health recovery and trauma-informed care, medication optimization, long-term care, caregiving, and psychotropic drug use and inappropriate drug use among older adults. She is a former Board member of the Mental Health and Recovery Board of Ashland County (Ohio; MHRB). She was Editor-of-Chief of TAPESTRY OF OUR LIVES, an anthology of works created by individuals in recovery, a project that was done under the auspices of the MHRB. Spore served as Project Lead for a “Writing for Recovery” initiative, MHRB, and engaged in all aspects of the project, which has resulted in sustained spin-off efforts. Currently, she is a consultant at the MHRB, and serves as a facilitator of a “writing for recovery” writing group, which is under the auspices of Catholic Charities’ Pathways Peer Support Program, Ashland. Diana Spore has expertise in creative writing, writing for recovery, journaling for caregivers, legacy writing, and advocacy writing.