Victimization of Individuals with Disabilities Linked with Dementia
By Guest Writer Diana Spore, PhD, MGS
This is the third in a series of blogs from Dr. Spore about the importance of the Adult Advocacy Centers’ work.
Allegations of abuse are unlikely to be made directly by individuals living with moderate to severe cognitive impairment or progressive dementia. The National Center on Elder Abuse reports that rates of abuse among dementia survivors range from 34% to 62%, with psychological or emotional abusive behaviors being most prevalent. Examples include belittling comments, threats, keeping victims isolated and not allowed to visit with others. Seniors with dementia are more likely to be targeted when criminal behavior occurs. If suspected neglect and abuse are reported – most likely based on information provided by mandated reporters and others – subsequent efforts to investigate and prosecute are complicated. Acts of financial exploitation are more clear-cut to determine. Related investigation and prosecution efforts will be driven, at least in part, by “concrete” documents (e.g., bank records) that cannot be challenged easily.
The Adult Advocacy Centers’ Model is person-centered (the individual who is suspected of being victimized) for investigation as well as treatment plans. This becomes more challenging when the victimized individual has dementia, particularly if they cannot speak for themselves or who may be viewed as incompetent. As far as keeping individuals with dementia at the center, the Adult Advocacy Centers’ Model is protective, provides education and training, and uses multidisciplinary teams. The agency’s plan to strengthen relationships with agencies and providers will be critical when intervening with this disability-specific group.
The Challenges of Reporting Abuse
A community-dwelling dementia survivor is unlikely to report abuse, in light of the fact that she may not be well enough to report or to even ask for help, may be unaware that behaviors are abusive, and may be isolated and very dependent on the perpetrator. The victim and perpetrator may live in the same home, with the latter providing some form of elder care and being dependent as well (e.g., relying on the elder’s financial income, assets or medication prescriptions). The one being victimized may fear reporting any type of abuse. She may fear being hurt more, fear being placed in a nursing home and losing the façade of independence or fear being left totally alone. As is the case with mental illnesses, individuals with dementia may not be believed (e.g., too confused, incompetent, delusional or out of touch with reality). “Red flags” for suspected abuse may look a lot like the exacerbation of dementia – including changes in behavior and mood, social withdrawal or decreased attention to personal appearance.
Abuse in a nursing home setting will be addressed further in an upcoming blog. In short, nursing home residents with dementia may have similar fears about reporting. They may fear retaliation, fear that they will be hurt more or fear that no one will respond to their call lights. Residents living with dementia may lash out in response to abusive behaviors (from staff or other residents) verbally or physically, may become combative or may demonstrate marked agitation and aggression. However, these behaviors reflect attempts to express what cannot be verbalized – pain, fear of being hurt, fear of other residents coming into their rooms, feeling unsafe and being terrified and traumatized. Causes for escalating aggressive behaviors must be determined. It is paramount to avoid trying to “control” perceived “disruptive” behaviors, such as through the use of antipsychotic agents. These behaviors may be in response to elder abuse.
Reports of abusive behaviors among community-dwelling seniors – if they are to be believed and acted upon – may need to be provided by mandated reporters (e.g., medical staff in emergency rooms) and others. These “others” might include (1) neighbors who can only observe what is going on outside of the house of the one being victimized; (2) friends who may have been pushed away as abusive behaviors progressed; (3) meals-on-wheels drivers, assuming that they are trained to be aware of risk factors, red flags, and how to report and when. Family members who suspect that a family caregiver is being abusive may close their eyes, refuse to provide help with caregiving tasks, financial matters, and finding alternative housing options and care. At the risk of appearing to be cynical, other family members may act only if financial exploitation is occurring, and inheritances are at risk.
Systems Must Prepare for Increasing Numbers of Older Adults
As the aging population in the United States grows, as increasing numbers of older adults live with dementia and Alzheimer’s disease, the ramifications will be extensive. This will go beyond just serving a larger number of individuals who are at risk of or who have been victimized. Costs will be financial at the national and individual levels, linked with increased need for costly hospitalizations, emergency room visits, long-term care and overall medical costs. Expenses will increase for prosecution, prison use, and rehabilitation of perpetrators. There are also challenges associated with strengthening partnerships with state- and local-level agencies/providers. Collaboration will be a necessity if individuals with dementia are to remain at the center of investigation, prosecution and treatment plans.
For the aging segment of our population, in general, who are at risk of being victimized or who have been traumatized: it will be increasingly important to provide training in how to maximize resilience, moderate intense emotions, build strong support networks and avoid social isolation, and bounce back from adversity. Across the board, agencies will need to promote awareness of elder abuse, provide education and training, avoid re-traumatization and offer trauma-informed care.
As the Adult Advocacy Centers’ Model is implemented, it will help us tremendously as we serve an increasingly older population, many with moderate to severe cognitive impairment and progressive decline. It will be critical to form strong partnerships between agencies and providers as we keep individuals with dementia at the center of plans affecting their lives, overall well-being and safety.
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.