Previously in my series on dementia, we have focused on improving the quality of life for people living with dementia by giving them greater autonomy. In this fourth article, I want to focus on one main challenge of that approach: the risk of physical harm.
Many of us know from personal experience that when a person’s cognitive abilities decline significantly, those around them often step in and take control away from the person living with dementia in an attempt to protect their loved one from harm.
When a grandparent with dementia begins to experience greater and greater memory loss, their children and grandchildren may question whether it’s too great a fire hazard to allow that person to continue cooking for themselves. Similarly, friends and family of a younger person diagnosed may question whether that person should still be allowed to drive themselves to work, for fear of what could happen to other drivers around them.
Dr. Allen Power is a clinical associate professor of medicine at the University of Rochester and an international educator on transformational models of care for older adults, particularly those living with changing cognitive abilities. In his interview for Voices in Dementia Care, Dr. Power explores the conflicting dynamics of safety, security, and high quality dementia care.
“We tend to view the idea of safety and security from a narrow lens,” says Dr. Power. “It is a lens of physical safety. It is the litigious lens of preventing the worst case scenario.” While not minimizing the idea of any person being physically hurt, Dr. Power suggests that security involves more than just physical safety. It also includes “supporting both emotional and psychological security.”
In some traditional long term care facilities and even in some homes with a family member living with dementia, attempts to protect physical safety come at the detriment of emotional and psychological security. A family may lock a loved one in their bedroom at night, to prevent them from wandering or falling down the stairs. A care facility may use restraints on a patient to prevent them from ripping out an IV or falling out bed. While these efforts may indeed reduce physical risk of harm, they actually make people with dementia feel far less secure and precipitate the overall decline in their health.
“They make people [living with dementia] much less secure because they cannot get out and cannot move freely. They feel trapped and often also feel that they need to get away from something that is there,” notes Dr. Power. “There is no way to enable quality of life and eliminate all risk. We have to continually negotiate risk. We have to understand that, for every person who wanders from their home, there are hundreds of people who are being put on antipsychotics, who are distressed and traumatized every single day behind a locked door. They are withdrawing and giving up on life. That never makes the news. We have to balance those two.”
One solution to this challenge, though somewhat controversial, is to create safe environments that promote autonomy and freedom of choice while protecting the safety of residences. One dementia care complex in the Netherlands, De Hogeweyk village, is probably the most widely known example of this approach. Dubbed the Dementia Village by CNN, De Hogeweyk allows residents to roam a four acre complex freely. There are supermarkets, hair salons, theaters, and post offices, just like any other village. The shops are staffed by caretakers who act like other residents of the community but who are actually long term care staff members and providers. In my next article in this series, we will closely explore the De Hogeweyk center and learn more about the impact of the approach on residents.
