John bowled in a Friday night league for 20 years. It was often the highlight of his week – a chance to spend time with friends, blow off some steam, and enjoy some friendly competition. Now 75 and living with dementia, John has tried more than once to walk to a bowling alley that no longer exists. Each time, his adult children have located him unharmed. With his continued dementia and wandering, they are growing increasingly concerned about the "next time".
Like so many people impacted by dementia, John’s family – and his community – are faced with questions about how to help him stay safe. When is he at greatest risk of wandering? What programs and products effectively address wandering? Are there solutions for someone like John who lives alone? (In fact, the majority of people with dementia live in the community, often alone.) How can his family, healthcare providers, law enforcement, and the larger community collaborate for his safety?
Nearly 5 million Americans live with dementia, and Alzheimer’s disease is the most common cause. Experts project millions more diagnoses over the next few decades as Baby Boomers age. Wandering can be one of the most challenging behaviors associated with dementia. It happens when someone becomes lost or disoriented, or leaves their home or caregiver unexpectedly. This creates additional risk for falls, accidents, exposure to the elements, and other life-threatening outcomes.
Despite the prevalence of dementia, the research on wandering is limited. Many programs and technologies claim to prevent or address wandering, but there are virtually no high-quality studies confirming or comparing their effectiveness. We need to know more about wandering. And we need to test possible solutions to successfully address this growing problem.
How many people with dementia wander and who is at greatest risk?
Dementia and wandering are common and can be quite dangerous, as families and professionals can attest. Yet we know little about its prevalence. One small study found that over the course of a year, almost half of people with dementia wandered at least once. The risk of wandering typically increases as dementia progresses. That changes in the late stage, when movement often becomes limited or impossible. But even in the early stages, people with dementia can have episodes of confusion or disorientation that cause them to become lost. The unpredictability of these incidents makes them a cause for concern.
We need to better understand risk factors for and possible triggers of wandering events. Are they more common when there is a change in routine or another stressor such as a noisy environment? Do behavioral symptoms or conditions such as depression exacerbate it? What groups are more vulnerable than others? One study found wandering behaviors are more common for people with dementia who are Latino or Black. We also do not know how wandering risk varies based on the underlying disease, such as Alzheimer's, Lewy body dementia or Frontotemporal dementia. These topics deserve further exploration.
What are some potential solutions to keeping people with dementia safe?
In the past, health care and long-term care facilities often relied upon medication and restraints to prevent wandering. But these approaches are now widely viewed as both unsafe and inhumane and have been limited by CMS regulations.
Families and communities have since tried many non-pharmacological approaches to help prevent wandering and to locate people who have gone missing. These range from simple, such as hiding the person with dementia’s keys, to high tech wearable GPS devices that can help locate a wandering person.
Educating the people who care for, and encounter, patients with dementia plays an important role. For example, health care providers can tell families about the risk of wandering when caring for someone with dementia. Law enforcement officers can learn dementia basics to help them identify people with possible dementia (e.g., an older driver who appears disoriented) and know how best to respond.
In recent years, many law enforcement agencies and other first responders have participated in training offered by dementia providers. The Administration on Community Living funds many projects that build partnerships between dementia service organizations and first responders. Several of these efforts are highlighted in a guide developed by the National Alzheimer’s and Dementia Resource Center. Some law enforcement agencies have spearheaded their own efforts to address wandering. They have, for example, developed policies on best search practices and distributed location devices to people in the community.
Technology is playing a bigger role in addressing wandering
There is a growing number of technologies, including home alarms and wearable devices, that can notify family members if their loved one has traveled beyond a specific perimeter. Or they can provide real-time information about a person’s movement and location. But will people who need them accept and adopt them? There is some evidence that even families that have obtained identification devices do not use them regularly. We need to understand the usage barriers better to make and promote technologies that are acceptable. Dementia is a financially costly disease, so it is also important to understand which technologies are worth the investment.
Technology also raises significant ethical questions. Does enhanced safety outweigh the loss of privacy to the person with dementia wearing a tracking device to which they may not have the cognitive capacity to consent?
Some states have enacted “Silver Alert” systems (similar to Amber Alerts) that help notify law enforcement and the public when a person with cognitive impairment is missing. Other communities have developed registries where families can provide law enforcement with critical identifying information to assist in a search. This sometimes includes an identification bracelet or other item. Many wandering incidents resolve without the assistance of law enforcement. But when their help is needed, it can take many hours and personnel. The costs are likely to grow along with the number of dementia diagnoses. And law enforcement is taking note.
We need more research on dementia and wandering
There are many approaches to preventing and responding to wandering. But a recent review of wandering interventions concluded that "the level of scientific evidence" is low. Experience suggests that many approaches have at least some merit, and the right option may depend on the situation.
It’s possible that low-tech and low-cost practices such as hiding keys or writing a name and phone number on clothing labels help more than a GPS tracker that gets left in a drawer – we just don’t know. Given the growing population of older adults with dementia, these questions are becoming more urgent.
Dementia experts, first responders, healthcare providers, and families working together have the potential to tackle the problem of wandering. By investing in research, we can maximize their success and use limited resources more effectively. This research can help fill in the major gaps in what know about dementia and wandering.
Learn more about our expertise in Alzheimer’s and other dementias.This post originally appeared on Medical Care Blog.