Free and Safe

Categories: At Home, Need to Know, Research|By |Published On: |

Available as an audio article. LISTEN HERE

Proactive strategies help maintain independence.

The right to move about freely in our homes and communities is important to everyone. For people living with dementia who may have challenges to wayfinding, balancing freedom with safety requires both preparation and planning to prevent a missing incident.

Toolkit cover + contents

New Resource

A new (and free!) toolkit from the University of Waterloo supports the autonomy and independence of persons living with dementia by offering evidence-informed strategies that can be used to create a comprehensive safety plan to help manage the risk of getting lost and going missing.

The whole purpose of creating the toolkit was not to reinvent the wheel, but to consider all of the factors that might impact wayfinding for a person with dementia, including unmet physical and emotional needs, and to bring helpful resources and strategies together into one comprehensive package.

– Dr. Noelannah Neubauer

Together with the Alzheimer’s Societies across Canada, and lead by Dr. Lili Liu, Dr. Noelannah Neubauer and Isabella Chawrun at the University of Waterloo, a team of persons with lived experience of dementia, community organizations and researchers spent three years reviewing Canadian and international wayfinding research and tools. The work of the team brought together select strategies and information resources shown to reduce risks of getting lost and going missing into a comprehensive, interactive e-book toolkit designed for persons with dementia, their family members and friends. Clinicians and others involved in the health and social care of people living with dementia will also find the new toolkit helpful.

“The whole purpose of creating the toolkit was not to reinvent the wheel” says Neubauer, an Occupational Therapist with Alberta Health Services and research associate at the University of Waterloo, “but to consider all of the factors that might impact wayfinding for a person with dementia, including unmet physical and emotional needs, and to bring helpful resources and strategies together into one comprehensive package”.

Topics covered in the toolkit include preparing for an emergency, preventing a missing incident, and improving wayfinding in the home. The toolkit e-book is interactive - readers can access a variety of curated information resources with just one click. Printable pages make it easy to share the information and strategies with those not online. Case studies are incorporated throughout the toolkit to support readers to understand how strategies can help in a variety of scenarios. The comprehensive toolkit is available in both English and French, along with videos that describe how the toolkit can be used to support independence and safety for people living with dementia.

Responding in an emergency

What to do if a person living with dementia has become lost or is missing

  • Call the police of emergency services in your area immediately after determining that the person is lost or missing. Be sure to state that the person is living with dementia.
  • Do a scan of the immediate area inside and outside while waiting for emergency services to arrive.
  • You may be asked to provide documentation such as: the missing person’s health card, driver’s licence or government issued photo ID, technology you use such as door cameras, locator devices and the missing person’s cell phone number.

Source: Toolkit to Manage the Risk of Getting Lost and Going Missing for People Living with Dementia. (University of Waterloo, 2024)

Be Proactive

While not everyone living with dementia will become lost while navigating alone, it is an emergency when a person living with dementia becomes lost or is missing. A key aim of the toolkit is to get people with dementia and their care partners talking about risks to prevent getting lost rather than waiting until an incident occurs. People are encouraged to take a proactive approach and create a safety plan that includes strategies to increase safety now, and strategies to implement if an incident does occur.

Not one strategy will prevent a person living with dementia from becoming lost or missing. Multiple strategies are recommended to reduce the risks.

While technology, like GPS trackers or door cameras, can be helpful to support independence or reduce risk, “Solutions don’t have to be high tech.  There are so many other things you can do that don’t involve technology” says Neubauer.

Proactive Strategies for a person living with dementia

  • Let a family member or friend know where you are going, and what time you expect to be back.
  • Have a family member or friend check in with you daily if you live alone.
  • Consider different strategies to help with navigation if wayfinding becomes a challenge.

Source: Toolkit to Manage the Risk of Getting Lost and Going Missing for People Living with Dementia. (University of Waterloo, 2024)

Next Steps

In the short term, individuals at the University of Waterloo are in the process of applying for funding to support translation and cultural adaptation of the toolkit so the strategies and resources can become accessible to more Canadians.

Over the longer term, Neubauer aims to integrate the new toolkit with related resources she’s developed including the Canadian Guidelines for Safe Wandering, to create a complete collection of resources that help reduce the risk of getting lost for people with dementia and improve response during a missing incident.

GET MORE INFORMATION

Download the toolkit in English and French: Managing risks of disappearance in persons living with dementia.

Learn more about the project at UWaterloo/MRDPD and in a brief overview video on YouTube

Questions about accessing or sharing the Toolkit? Contact: noelannah.neubauer@uwaterloo.ca

QR codes for toolkit

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