The TV shows make it look dramatic. A hoarder, someone who has accumulated so many piles of junk and possessions he can barely move in his own home, is nearly buried alive. But the problem is no scripted drama. Real people across the country hoard to the extent they can endanger themselves and public health, but there is no standard approach to help these individuals.
Researchers at the University of Kansas have published a series of articles examining hoarding, multidisciplinary teams that address incidents and ethical ways to approach the problem. Terry Koenig and Richard N. Spano, associate professors; and Rosemary Chapin, professor of social welfare, have published articles in the Journal of Gerontological Social Work and the Journal of Elder Abuse and Neglect and are completing another.
"There's no official agreement on what hoarding is," Koenig said. "Some argue it's a facet of obsessive compulsive disorder. Others believe it is a cognitive process problem, and some say it is tied to a traumatic event in a person's life."
Spano and Koenig looked at cases in which older adults accumulated so many possessions they could not use their living spaces for their intended purposes, or animal cases in which subjects accumulated so many animals they were unable to provide for their basic care. A recent trend has seen communities form multidisciplinary teams to address reported cases of hoarding. The researchers interviewed 15 members of four Kansas teams about their experiences. They often consist of police officers, public health officials, animal control officers, building safety inspectors and others. Mental health officials are often not included.
"The funding mechanism doesn't allow for mental health to be part of it," Spano said. "We heard a lot about the need of support in all areas to create these teams."
The researchers found there is often not emphasis on helping the individual, and the focus is on controlling the undesirable behavior. All too often there are reports of using coercion such as threatening to burn or condemn a property or place an individual in a nursing home, because other options are not evident, they said. In cases of animal hoarding, some animals may be rescued, but like other cases, they don't treat the root of the problem, and hoarding behaviors will almost certainly happen again.
"If you don't address the problem, the recidivism rate is 99 percent or better," Koenig said. "We have to rethink the way we deal with this."
No matter how team members address a case of hoarding, they are sure to face ethical questions. Namely, how are individuals' right to live as they choose balanced with the right of the public to be safe? The authors cite cases in which an elderly individual collected so many possessions and garbage in her home the resulting insect infestation caused a neighbor to call police to check on her.
"It's not a problem until it becomes public," Spano said. "But when it becomes a problem, how can you deal with it without infringing on someone's rights?"
Perhaps the greatest ethical challenge those dealing with hoarding face is the fact that people often do not want help. The researchers argue that the first step in these cases should be dealing respectfully with the person and addressing such resistance first. Once trust and respect are earned, then they can move on to address the issue of hoarding. Such an approach is almost never taken in hoarding cases, the researchers argue, but is used effectively in other situations, such as instances of child abuse.
Even when resistance to help is not an issue or can be effectively dealt with, hoarding teams need to be able to work together. In their interviews the researchers found teams are largely made up of people with different areas of expertise and concern. Police, animal control officers and area agency on aging personnel all have their own concerns in protecting the public. Koenig and Spano recommend forming training sessions to help team members effectively communicate with each other and work together. They can also face trust issues when working with people they are unfamiliar with and share no common boundaries among agencies and unequal distribution of power among team members.
"If you're going to have a team you have to have a common language and understanding, and that's no easy matter," Spano said.
The researchers are working on developing training for multidisciplinary hoarding teams as part of ongoing research. For teams already addressing hoarding cases, they present an ethical framework as a guide to handling difficult situations. They recommend, when dealing with a case of hoarding, to ask who the client is, what is the nature of the problem, why it poses a problem, how it can be addressed ethically, what might be the foreseeable effects and what the existing viable alternatives might be.
"Task forces that provide a multidisciplinary approach to the problem of hoarding can potentially offer a more coordinated approach to intervention. However, members from widely differing backgrounds will need to find common ground in dealing with the difficult ethical dilemmas that are often present in hoarding cases," the authors wrote. "Social work members can contribute tools, such as our proposed ethical decision making framework, that help build a common understanding of the varying perspectives of team members. This tool can be helpful in crafting interventions that successfully balance values of safety and autonomy and that result in positive outcomes for both the older adult and the wider community."