Abstract
Background
People living with dementia face a risk of going missing, which can result in injury or death and distress for care partners. Although it is believed that alert systems can help locate missing persons and reduce risk through community engagement, little is known about implementation and user experiences.
Objective
This study explored experiences with alert systems and related policies for missing persons with dementia, drawing on stories and insights from individuals who went missing, care partners, and those involved in search efforts.
Methods
A multiple case study was conducted. Data were collected through interviews and focus groups with 40 individuals, including people with lived experience, first responders, service providers, policymakers from Canada, Scotland, and the United States and analyzed thematically.
Results
Three key themes were identified: 1) implementing alert systems and policies, 2) experiences of going missing, and 3) factors that help or delay locating missing persons. Participants emphasized the importance of interest holder involvement, community buy-in, and legislative support for implementation. Challenges included sustainable funding and limited evaluation. The emotional impact of missing incidents highlighted the need for prompt police reporting, coordinated search efforts, tailored mobile alerts, and public education.
Conclusion
According to participants, effective alert systems require geographic-specific mobile notifications and coordinated planning. Strong partnerships among first responders, health care and service providers, and community organizations, supported by training and public education, would improve preparedness and support for people living with dementia and their care partners.
Background
With over 57 million people worldwide living with dementia (World Health Organization, 2025), the effort to keep people safe from going missing is an increasing challenge. People living with dementia, particularly those with Alzheimer's disease, are at risk of going missing due to cognitive impairments such as memory loss, confusion, disorientation, and difficulty navigating new or unfamiliar environments (Davis & Veltkamp, 2020; Ward et al., 2022).
The concept of going “missing” is complex—it can be intentional, such as a deliberate disappearance, or unintentional, associated with factors such as accidents, dementia, or forced separation (Taylor et al., 2019). Missingness is defined from the perspective of the reporting person, that is, a person may not think of oneself as missing. This happens, for example, when plans change without informing others. Conversely, a person may feel lost—such as getting separated in a crowd or struggling to find the way home—without being deemed missing until the person fails to reach the expected destination within an accepted time (Shalev Greene et al., 2019).
People living with dementia may go missing while engaged in routine activities with limited supervision (Miguel-Cruz et al., 2024), become separated from care partners during outings, or leave home independently to complete familiar tasks (Taylor et al., 2019). Managing dementia-related missing incidents is one of the most challenging aspects of dementia care, impacting both individuals and their care partners. Missing persons with dementia face serious risks of injury or even death (Kikuchi et al., 2019). Missing incidents are particularly distressing for care partners, who can experience anxiety, stress, guilt, and emotional strain while balancing safety concerns with their relative's autonomy (Li et al., 2024; Shalev Greene et al., 2019).
To reduce the risk of going missing, care partners may use technologies such as Global Positioning Systems (GPS) devices to monitor the movements of their relatives (Neubauer et al., 2021b). Some organizations, including police services, have implemented strategies such as missing person registries, hotlines, and educational resources to support individuals and their families (Morewitz, 2016). Long-term care homes and hospitals often adopt safety measures, including door alarms and secured exits, to prevent people living with dementia from leaving a facility unnoticed (Adekoya & Guse, 2019; Morewitz, 2016). Many municipal police services in Canada support vulnerable person registries through programs such as MedicAlert®, which allow care partners to share essential personal information with police to support the quick location of a missing person with dementia (Halton Regional Police, n.d.; Toronto Police Service, 2025).
One of the strategies for locating missing persons with dementia through community engagement is an alert system (Neubauer et al., 2021b). Alert systems notify the public about missing persons by sharing their personal information through media, emergency networks, traffic signs, and apps (Gergerich & Davis, 2017). Various types of alert systems for people living with dementia exist. For example, Scotland's community-based Purple Alert app enabled care partners to notify the community about missing relatives and operated for seven years before it was discontinued (Alzheimer Scotland, n.d.). In the United States (US), legislated state-wide Silver Alert systems allow police to share information about missing persons with dementia, using highway signs and media (Gergerich & Davis, 2017).
In Canada, calls for a national Silver Alert system have led to petitions (Parliament of Canada, 2018, 2025) and amendments to Missing Persons Acts in Ontario, Manitoba, and Alberta (Legislative Assembly of Alberta, 2023; Legislative Assembly of Manitoba., 2017; Legislative Assembly of Ontario, 2023). British Columbia (BC) has a community-led Silver Alert which notifies subscribers about missing persons with dementia or autism via social media or a Short Message Service) (BC Silver Alert, n.d.). In Canada, “Silver Alert” is typically associated with police service's use of public and social media platforms (Adekoya et al., 2025; Neubauer et al., 2021a).
However, little is known about alert system implementation and the experiences of interest holders (Adekoya et al., 2025; Gergerich & Davis, 2017; Neubauer et al., 2021a). Unfortunately, many missing incidents are not reported to police, leading to underreporting, as care partners often view contacting the police as a last resort (Larsson et al., 2025). This study is part of a broader project examining the development and implementation of alert systems in Canada, Scotland, and the US (Adekoya et al., 2025). This paper reports on user experiences with alert systems and related policies for missing persons with dementia, drawing on stories and insights from individuals who went missing, their care partners, and those involved in search efforts from Canada, Scotland, and the United States.
Methods
A multiple case study approach (Yin & Campbell, 2018) was used to examine the implementation of alert systems, specifically Canada's BC Silver Alert, Scotland's Purple Alert, and the US Silver Alert, and related policies for locating missing persons with dementia. This method supports an in-depth exploration of complex, real-world issues, especially where program implementation is not yet well understood (Yin & Campbell, 2018). The study received ethics clearance from the University of Waterloo Research Ethics Board (44542), University of Edinburgh (23-24CNST001), and the Winnipeg Regional Police. No additional ethics approval was required from other organizations, including Alzheimer Scotland and the US National Association for Search and Rescue.
Participants and Recruitment
Participants from Canada, Scotland, and the US were recruited using purposive sampling (Polit & Beck, 2017) through professional networks of Alzheimer Societies, police and search and rescue organizations, as well as advertisements shared on social media platforms. Eligibility criteria required that participants had relevant experience or interest in the implementation and use of alert systems and the ability to communicate in English.
A total of 41 individuals were recruited for the study using purposive sampling, representing a range of groups: people living with dementia, care partners, first responders, service providers, policymakers, a technology developer, and a researcher (see Table 1).
Participant Demographics.
One participant was excluded due to concerns about inconsistencies in self-reported information. Although the participant indicated familiarity with alert systems, the person was unable to answer related questions or describe relevant experiences with alert systems, which raised concerns about the reliability of self-reported information.
All participants provided informed consent and were informed of their right to withdraw at any stage. Individuals living with dementia were recruited through our professional networks and were able to independently provide consent without requiring legal guardians. These individuals and their care partners received a $25 or £25 Amazon e-gift card as a gesture of appreciation for their time and contribution to the study (AGE-WELL, n.d.).
Data Collection and Analysis
Data collection took place between November 2023 and December 2024 and included semi-structured individual interviews conducted either via Zoom or in person, such as at a participant's workplace. Interviews ranged from 36 to 130 min and were guided by questions aligned with the study objective such as participants’ experiences of going missing and being found and implementing or using alert systems and related policies (e.g., bills and legislation) to locate missing persons. The interview guide was not pilot tested but was reviewed by the research team to ensure alignment with the study objectives. Participants were emailed the interview guide and consent form in advance, and interviews were conducted after consent was obtained, either on the same day or within a few days or weeks of signing the consent form.
To validate the interview findings, four online focus groups were conducted with 25 of the 40 participants, each group ranged from five to eight participants. Each focus group lasted between 53 to 94 min. Participants who could not attend the focus groups shared their feedback via email or Google Forms. All interviews and focus groups were conducted by AA, a female registered nurse with qualitative research experience, and no one else was present aside from the researcher and participants during interviews and focus groups.
Although this is a multiple case study, an inductive thematic analysis approach (Braun & Clarke, 2006) was used to analyze the data. The first author reviewed interview recordings and transcripts to become familiar with the data and gain initial insights into participants’ experiences. The second author also reviewed the transcripts, and the other co-authors provided additional feedback to support the analysis. Data were coded inductively using descriptive words or phrases, with codes reviewed and refined throughout the process to develop key themes and sub-themes. Analysis continued iteratively until saturation was reached (Braun & Clarke, 2006).
Study Rigour
Rigour was ensured through credibility, transferability, dependability, and confirmability (Ahmed, 2024; Lincoln & Guba, 1985). Credibility was supported through member checking, peer debriefing, data triangulation, prolonged engagement, and the use of participant quotes. The use of triangulation, which involves integrating multiple data sources, including interviews and focus groups, helped validate the findings and enhance credibility (Ahmed, 2024). Transferability was enhanced by providing detailed descriptions of the study design, participants, and research process (Ahmed, 2024; Lincoln & Guba, 1985). Dependability was ensured through clear documentation of research methods. Confirmability was established through reflexive journaling and member checking to verify the accuracy and interpretations of findings (Ahmed, 2024; Lincoln & Guba, 1985).
Results
An overview of the cases (Canada, Scotland, and the US) discussed in this study and findings, is presented in Figure 1.
Alert systems for missing persons with dementia (Canada, Scotland, and the US).
Findings from participants’ experiences with missing incidents and implementing or using alert systems and related policies are presented under three key themes: 1) Implementing alert systems and policies, 2) Experiences of going missing, and 3) Factors that help or delay locating missing persons. In this section, we present each theme using a case-based structure. Specifically, we first conduct a within-case analysis for each country (Scotland, Canada, and the US), examining how the theme is reflected within each context. We then conclude the section with an across-case analysis that synthesizes similarities and differences across the three cases.
Implementing Alert Systems and Policies
In this theme, participants present feedback on what worked and what did not work when implementing alert systems.
Involving the Right People
Participants, especially from Scotland emphasized that the implementation of Purple Alert starts with involving the right people early, a small, focused group with shared goals, to minimize conflicts, along with securing funding from government and non-governmental organizations. Community buy-in and funding were particularly crucial for implementing community-based alert systems such as the Purple Alert and BC Silver Alert, though sustainable funding remained a significant challenge. Other participants reflected on the complexity of implementation of app-based community alert systems such as Scotland's Purple Alert. A service provider from Scotland, P2, involved in implementing Purple Alert described the process as “quite complex”, taking over two years for development and several months of iteration and monitoring. P2 further discussed the importance of gaining support from the community but also from key leadership, including the Scottish Government, Police Scotland, and service managers: “If the community [doesn't] buy in, then you don't have a community alert system…You can't impose anything on a community, you need to work with them from the outset, you need to go ask them, would you like to do this? And you need to buy in from the top, without funding, you'll find that really difficult to develop the actual thing. You need buy in from top and from the bottom.” (P2)
Grassroots Approaches and Other Challenges
While some participants shared positive experiences with implementation of alert systems, others reported that they encountered both successes and challenges, especially with the use of grassroot approaches. A care partner and health care provider (P14) from Canada who was involved with BC Silver Alert described the implementation as “very grassroots” but also shared that efforts to secure government support were unsuccessful following a leadership change. The participant further mentioned that the upcoming elections created uncertainty, requiring renewed efforts to secure funding for the day-to-day running of the BC Silver Alert: “They [government] made a commitment that they would be supporting the Silver Alert. That premier resigned, and we have a new premier, and now there's an election session coming up in October.” (P14)
Legislative Support
Another participant, a search and rescue volunteer from the US, emphasized that the US Silver Alert implementation would not operate without legislative support and adequate funding: “We have good experiences and bad. Sometimes we worked through it and sometimes we don't. The thing that made it successful is the commitment of the legislator, the political person that that we connected with, that always drives whether we're going to successfully get an alert system or not…It's the legislator believing that there is going to be some positive political value to them, which is important. It's finding the right legislator, I think, is the most important part that makes them successful.” (P23)
Prioritizing Lived Experience
Participants also emphasized that effective policy and alert system development and implementation, whether national or local, must prioritize lived experience—listening to those directly affected, their care partners, and support organizations. A policymaker from Scotland, P6, involved in implementing Purple Alert emphasized the importance of including people with lived experience in the development and implementation process. Reflecting on a key meeting, the participant shared: “So, there was somebody talking about why we should do this and that. One of the women with dementia said, that'll never work. So that was cut off.”
Limited Evaluation
As reported by participants, engaging diverse voices and truly listening, rather than making assumptions, is crucial for implementation. However, alert system implementation often lacked a formal evaluation process. A search and rescue volunteer from the US discussed the need for clearer metrics to evaluate the impact of alert systems in locating missing persons with dementia: “How do you evaluate success? I guess the bottom line is, we found the missing [person]. The other part could be we've exhausted all efforts to locate the missing [person] because some never get found. But is that successful?” (P29)
In summary, participants from Canada, Scotland, and the US shared mixed experiences with implementing alert systems and related policies. Involving the right people early, including community support, grassroot approaches, legislative support, prioritizing lived experience, and funding supported implementation, while challenges included sustainability, leadership changes, and limited evaluation processes.
Experiences of Going Missing
This theme presents the lived experiences of participants who went missing, cared for someone who went missing, or were involved in search efforts. Participants described missing incidents as distressing, terrifying, and emotionally overwhelming. Eight stories are featured, each offering a unique perspective on how the incident unfolded and the strategies used to locate the missing person, including alert systems. Outcomes range from safe returns to unresolved or tragic endings. Each story is titled to reflect its emotional tone, with pseudonyms used to protect identities and support reader connection.
The first three stories describe experiences of people living with dementia going missing.
Story 1: Joe Lives with Dementia and Uses an Alert app to Assist in Missing Persons Searches
Joe lives with dementia in Scotland and receives missing person notifications through the community-based Purple Alert app. He shared that he has participated in search efforts for people living with dementia who went missing in his community: “[The alert] comes off on our phones when someone goes missing in the area. If I happen to be going for a walk, I will keep my eyes open. I know the locals, so if there's some out of place, I'd be wondering what they're doing. If the person looks lost and I’m going out and I could help, for instance.”
Joe actively engages with the app to help locate missing individuals living with dementia and emphasizes the critical role community involvement in search efforts.
Story 2: Stanley Lives with Dementia and got Lost While Walking to the Grocery Store
Stanley from Canada recalled his experience of getting lost when walking, after missing a turn on the way to the grocery store. He expressed disappointment that no one noticed he was lost or stopped to offer help: “It was a nice sunny day; I have a specific route that I follow to my grocery store or pharmacy. And I don't know why, but on this particular day, I decided to turn down the street. And after a couple of minutes, I stopped. And I realized I didn't recognize the area. And I walked a little more, turned down another street. And then I was confused. And I basically sat down on the sidewalk to get my bearings and try and figure out what I'm going to do. And I was there for a couple of hours, actually. And the unfortunate thing is that people walked by me and did not stop and ask if I needed help, or if I was okay. They just went about their business.”
A neighbour eventually found Stanley and helped him find his way back home. Although he had a GPS device on his phone, he forgot to bring his phone with him: “After a couple of hours, my neighbour came up and asked me why I was sitting on the sidewalk. And I told her that I wanted to go home. So, it turns out, I was only three blocks away from home, and I never made it to the pharmacy or to grocery store that day. But it was very upsetting. The helplessness I felt was overwhelming. I didn't have my phone with me. And the only identification is like the MedicAlert® thing. If I had had my phone, I would be okay with that and use Google Maps to get on. So, from that day forward, I've never left home without my phone. It's like the American Express card, don't leave home without it.”
Stanley now advocates for Silver Alert in Canada and promotes the use of additional strategies, such as wearable GPS devices, to help mitigate the risks of going missing.
Story 3: Janet Lives with Dementia and Went Missing While Driving
Janet lives in Canada and recounted getting lost while driving to a familiar location. She described this as a frightening and unsettling ordeal: “I was driving somewhere and had a location in mind. All of a sudden, I couldn't recognize my environment. I didn't know what street I was on. I looked all around me, and I couldn't figure out what city I was in, so I was afraid. What I did for myself was I pulled over off the road into a parking lot. And I sat there, and I looked around and after a number of minutes of looking, I got out of my car and looked around me for indicators. And after about, I don't know, five minutes, something clicked in my head. And I knew why I was there. At first, I didn't know where I was going, or why I was there. Or even which direction like north, east south or west that I was going… It was really scary and that was the first time that had ever happened to me.”
Janet found her way by using the destination address in her car and the map on her phone. She credited her hiking safety training for helping her stay calm and navigate the situation: “So, I searched for clues in my car. Do I have a pamphlet of something? But the reason I was there came back, the city came back. But I still didn't recognize my immediate environment. So, I found the address and turned on my phone and looked at a map. Then I saw a street name that I recognized, and then everything else clicked back together. It was quite scary, but I recovered from it. I go hiking and we have to learn safety things. I think all that, about keeping ourselves safe, and what to do if we do get lost while we're hiking, the training I think was really helpful. But it was the absolute sheer fright of the fact that number one, I didn't know where I was. And number two, it wasn't coming back to me. And it was really scary.”
Janet expressed that having Silver Alert would help locate missing persons with dementia quickly.
The remaining stories describe experiences of missing incidents from the perspectives of care partners and first responders.
Story 4: Sam's Husband, Eric, Lives with Dementia and Went Missing
Sam, a care partner from Canada, recounted the terrifying experience of her husband, Eric, going missing during her afternoon nap. She described the fear of not knowing where Eric was or if he could keep himself safe: “When my husband went missing, he was still in the early stages of dementia. So, we had been lying down for an afternoon nap. And when I woke up, he was gone. He had recently lost his driver's license. And he had decided on his own that he wanted a bus pass because he didn't like the idea of being dependent on me to drive him places. He was annoyed that he could no longer drive himself places. And he decided he was going to go and walk to the local Shoppers Drug Mart and buy himself a bus pass. And he was capable enough to do that. He had to keep asking people, “Where's the Shoppers Drug Mart?”. But then once he got there, and he got the bus pass, he couldn't figure out how to get home again. And that's how he got lost. I was in full panic mode, worrying about where he could be and what could happen to him.”
Sam contacted the police. However, no Silver Alert was activated for Eric, as it was not available in that part of Canada. She stated that Eric was embarrassed to be brought home in a police car, but described the police as calm and gentle: “I finally had to call the police because it was getting dark. I was driving around; I wasn't able to find him. The police called me back and they said: “We found him and we're bringing him back.” The police were great. They really handled it well. They clearly had some training about dealing with people with dementia. And they were really calm and gentle with him. I was very impressed with how well they handled it. The first thing they did was contact the bus service, and the bus drivers all have radios, and they said, “We're looking for a person who's in this part of town, he might be on your bus.” And sure enough, my husband was on the bus. So, the driver stopped the bus. And he went over and asked him, “Are you [Eric]?” And my husband said yes. And he said, okay, we're just going to wait for a few minutes. Then the police came and met the bus and brought him home. But he was really annoyed with me and really embarrassed that he had had to be brought home and wasn't capable of getting home alone. I think in terms of the neighbours, like he was embarrassed that he was brought home in a police car. Some of our immediate neighbours knew that he had Alzheimer's, but not all of them.”
Sam shared that Eric lost his driver's license before the going missing incident and continued to be very upset about this. She was always worried about his well-being: “I began to worry because he was already upset as many men do get when they lose their driver's license due to dementia. You know, sometimes they tend to get paranoid, like, are you responsible for me losing my driver's license? And he could be aggressive at times. So, I was worried he was going to be angry. And he was angry. He was really upset that I had called the police. And you can't argue with someone with dementia, right? So, I went from being extremely worried about him to being worried about if he was going to be difficult, because my husband was a very tall man. And when he was upset, he could be scary, because he just wasn't himself. It probably took a good couple of weeks before fortunately, people with Alzheimer's, they forget. What he said he had forgotten, which was fine. But for those two weeks, he was just really, really upset with me, he didn't trust me.”
Sam raised concerns about the lack of support following Eric's dementia diagnosis, particularly in preparing for the possibility of him going missing. She stated, “Nobody had said to me, you should be prepared that he might go missing one day”. Most of the information about dementia she received came from an Alzheimer Society support group rather than from healthcare or community services. She felt abandoned after Eric's diagnosis, stating, “It was like, sorry, you’ve got Alzheimer's, goodbye, and good luck,” with no follow-up or guidance on what to expect or how to prepare. After Eric went missing, Sam got him a soft silicone ID bracelet used by cyclists. Once Eric started wearing it, she said he never tried to remove it, giving her peace of mind.
Story 5: Maricel's father, Alex, went missing during an unsupervised walk and has never been found
Maricel is from Canada and shared that her father Alex, who had dementia and needed 24-h supervision, went missing about one and a half years ago and was never found. Alex lived with his wife, a part-time teacher, and son, who worked from home. Despite cognitive decline, Alex remained active and took daily hour-long walks. On the day he went missing, he received his first home care services. After the home care staff left, Alex's wife went to work while the son was at home working. Maricel recounted the incident: “On the day [Alex] went missing, someone from homecare came over from 11 AM until 3 PM. The homecare [staff] sat with him, talked to him, and they left. My mom left shortly after to go [teach]. My dad tried calling my uncle just before 4 PM, saying he needed to get to school or something like that. And my uncle not really knowing that this is my dad saying “I'm gonna go wander”. This would have been important to be part of a [care] plan to say, like whenever my dad talks about “I need to go to school, I need to go do something”, he's going to take off. So, my uncle just said, okay, call your wife. Unfortunately, my dad didn't repeat that to my mom because she would know that meant he was going to wander. [Alex] just called [my mom] and she said, “I'm going to teach a class right now, I'm going to be back at 5:30 PM.” [My mom] would always write [the planning of the day and work] on [Alex's] board, so [Alex] could look at it because there's no way he could retain it. Then [my mom] comes home, and he's gone at 5:30 PM. [My mom] would have chosen to have the homecare [services] come when she was going to be out of the home to teach the class, but there's no choice in that. And there was no safety plan in place.”
Maricel stated that her mom, brother, and the police actively searched for Alex that evening and over the course of many weeks, but he was never found. She also mentioned that even though a Silver Alert was issued through public or social media channels, it was not sent to people's mobile phones, therefore, many individuals did not see the alert: “[My mom and police] go out and try to look for him. By this time, my brother's calling [Alex], he couldn't reach him. And by the time [my brother] reaches [Alex] after 6 [PM] at this point, my dad isn't able to really say where he is, but my dad could read, and he said he was by… [name of street]. And my brother, unfortunately, didn't really clue into where that was specifically. This is also where maybe some more education for the family would have helped. My brother then had a call from [Alex] and said he'd be back, but my dad has short-term memory. [When my brother] comes back to [the phone], my dad stops responding. But it sounds like the phone is in [my dad's] pocket or something; he probably just put it in his pocket. My brother hears [Alex] walking. Then my brother tries to call [Alex] again around 6:30 PM, and he doesn't answer the phone. Sometime around 8:30 PM, [Alex] attempted to call my uncle who lives in [name of city] and unfortunately, my uncle missed the call. And that is the last thing.” “I think drones, helicopters came in and there was a canine unit involved. A Silver Alert was issued for [Alex] in the media. He hasn't been found, and he is presumed to be deceased. I think a Silver Alert that went out, if it had been able to go to mobile phones, I think that [Alex] might still be alive. I think that Silver Alerts can be lifesaving as they are, and that there can be improvements to that by having them actually go to mobile devices.”
Maricel believed that a mobile notification could have alerted the public and potentially helped locate Alex. She discussed the need to educate care partners on dementia-related missing incidents and strategies to mitigate associated risks.
Story 6: Kate's Grandfather, Tom, Went Missing from a Long-Term Care Home
Kate, a policymaker and an experienced search and rescue volunteer from the US, recounted her experience when her grandfather, Tom, went missing from a long-term care home several years ago: “When my grandfather went missing from his care [home], he had pretty severe Alzheimer's. At the time, I remember thinking, oh, well, he couldn't have gone far. He's on foot. But the fact of the matter is, he was in a care [home] in the middle of a residential neighbourhood.”
Kate stated that despite the availability of Silver Alert in the state, it was not activated for her grandfather. Police were not involved because Tom was found quickly by the staff or family: “He didn't go far. We found him safe, but he could have walked to any one of the houses, and it's time consuming, and it's a labor intensive process for law enforcement to do a neighbourhood campus and to knock on all the doors and so the missing person might be in, you know, 102 Main Street, but you're only searching 10 Main Street, and you've got all of those houses in between. And in the interim, he decides to go back to 9 Main Street, but you've already gone there. So, you hope then that at that point, they will call you and say, “Hey, he's here now”, but that's what's difficult.”
Kate shared that Tom would leave the long-term care home unsupervised daily, prompting the staff to eventually place a monitor on him to alert them whenever he exited the building. Drawing from her search and rescue experience, Kate highlighted that dementia-related missing incidents are time-consuming and labour-intensive, requiring police to canvass neighbourhoods and knock on doors—often while the missing person may still be nearby.
Story 7: Kristel's Father, Ben, Lives with Dementia and Went Missing
Kristel from Canada, shared two instances of her father, Ben, going missing. The first incident happened when Ben was driving to pick up pizza. Following this, his driver's license was revoked due to safety concerns: “I wasn't living at home at the time. But I was informed that my father did go missing at one point. He got lost. In fact, he was actually in the car, he had his driver's license still at that time, his driver's license has since been taken away. But he had gone out. My mother had sent him to pick up some pizza, and to bring it back to the location where she was at, and he didn't return.”
Kristel explained that their small town was familiar to her parents, with navigation more like muscle memory, making Ben's missing incident surprising. Police did not get involved and no alert system was implemented in their town, and her father eventually found his way home: “[My mother] did find him at home eventually. And part of what we deducted was because it was at dusk, and oftentimes with dementia, that dusk time seems to be where the confusion starts to set in. So anyways, thankfully, he did make it home that day, he never made it to the location where mom was at. And so at least he was able to find his way home, thankfully, but it really brought home this aspect that, what if he didn't make it home? Where could he have ended up? We have no idea. And we'd like to think that in a small town, somebody else would recognize him and help him. But you don't always have the luxury of being in a small town or people knowing who you are to help you get back to where you need to be so. So that was kind of a lost but return situation.”
Kristel also shared Ben's second missing incident stating that he went missing during a walk and was later found by her mother, who drove around searching for him: “I was told more recently where he had gone for a walk, and he never came back. So, mom was left driving around and trying to look for him. And thankfully, he doesn't move too fast. So, he didn't get too far.”
Concerned for his safety, Kristel's family is now considering an ID bracelet: “We are looking at something that was more like…a MedicAlert® bracelet. So, if the MedicAlert® bracelet said he had dementia and I put my mom's phone contact on it so that if somebody found him, they would at least understand that he does have dementia. And this is a phone number he can contact to reach my mother. She was looking into some other kind of medical alert type program. But I didn't quite understand how it worked. And it sounded like she was going to have to subscribe and pay on a monthly basis. But I told her, before she signed up to make sure that she knows that law enforcement in your area is buying into that program too before you start contributing to this organization that says they're going to keep your family member safe.”
Story 8: Peter is Involved in a Search for a Person with Suspected Dementia
Peter, a first responder from Canada, with search and rescue experience shared the case of a person with suspected dementia who went missing and has never been found. Peter was involved in the search and stated that a language barrier, as English was not the individual's first language, may have complicated efforts to locate the individual: “There's one that stands out, an elderly gentleman of Iranian descent. So, English was a second language, a bit challenging. He went for a walk, every single night, seven o'clock ish. And one night, it was just pouring rain and off, he went, dressed for it, and never returned.”
Peter mentioned that although there was no Silver Alert system in their city, the media helped publicize the case. Extensive resources, including a cadaver dog, were used in the search, but despite these efforts, the person was never found: “And so, we spent the next week or so searching. We did grid searches. We got the media involved. This one is a tough one because there was no official Silver Alert, but we got enough media involved and it was a big news story. And his picture was in the news for several days. We talked to the family members individually…the police did their investigation to make sure there's no strife within the family. Is it depression or not? He was never formally diagnosed with dementia. But when you talk to the family, you kind of start asking questions and you go, okay, forgetful, had wandered away a couple of times, and they found him confused. And you kind of start to think he's not depressed, might be dementia and because he's from Iran, that was really challenging, because usually you ask questions about where were they born? Where did they live? Because they might be trying to get back there? Well, I don't think he's flying back to Iran. And we even brought out a cadaver dog, searched the areas. Never ever found. That's in the middle of a city.”
In summary, participants shared missing incidents involving individuals living with dementia, some of whom found their way home using GPS devices or were located by care partners, police, or Good Samaritans, while others were never found despite the use of alert systems, leaving families without closure. These stories underscored the emotional toll on all involved and the need for raising awareness and effective strategies to mitigate risks.
The third and last theme describes factors that help or delay locating missing persons with dementia as identified by participants.
Factors That Help or Delay Locating Missing Persons
Participants shared what they think helped or delayed efforts to locate missing persons with dementia.
Delay in Reporting Missing Persons
Participants discussed the importance of promptly notifying police and providing key information about missing persons such as name, age, recent photo, dementia diagnosis, clothing, and transit use. Postponement of reporting to the police delays search efforts and alert system activation. An experienced search and rescue volunteer from Canada shared the common misconception that one must wait 24 h before reporting someone missing: “One of the biggest challenges is people not calling the police early on. We recently had a case where people were falsely believing that you have to wait 24 h before you could call the police. So that delay in getting help started is problematic.” (P19)
Planning and Investigation
According to participants, thorough initial planning and investigation by first responders are required to determine eligibility for alert system activation and were seen as key to effective searches. Participants also emphasized the value of notifying the public and transportation services, as most missing persons with dementia are found by the public. A participant living with dementia from BC shared the value: “If I was driving on a highway and saw the highway sign, I would be able to get on my phone and say, “I just saw that truck and license plate, and I could phone the police or text them.” (P18)
While public involvement is vital, first responders stressed that inaccurate tips could overwhelm police and hinder search efforts. A search and rescue volunteer from the US shared this further: “Every time you get a sighting, it [must] be investigated, and followed up on. And if it has nothing to do with the [person], that's going to chew up some resources”. (P28)
Training for Police and Search and Rescue Volunteers
Participants discussed the need for trained search and rescue volunteers and proper police training, particularly in communicating with individuals living with dementia and using alert systems. They also highlighted the importance for public education on recognizing and interacting with missing persons with dementia. A police officer from Scotland (P8) described the initial challenges related to the use of the Herbert Protocol, a tool used by police and other agencies to collect personal information about people living with dementia such as name, age, medical history, places of interest to help locate them quickly and safely (Police Scotland, 2025): “There are thousands of officers that need training as to what Herbert protocol is and how to use it. So yeah, we're now in a good place with it and it now comes at the very early stages of an officer's career. So we managed to negate that.”
While some police services have introduced internal dementia training, others reported ongoing gaps. One police officer from Canada elaborated on this concern: “There's not a lot of specific training out there for police specific to missing persons [with dementia]. And I've been advocating to make that change. Because I think it's a very specific skill set that's needed.” P21
In summary, participants stated that timely reporting, accurate information, planning and coordination among first responders help locate missing persons with dementia, while delaying report and unreliable tips can hinder efforts. There is a need for improved dementia training for first responders and public education to improve search efforts.
Summary of Key Themes
We categorized findings in three key themes: 1) Implementing alert systems and policies, 2) experiences of going missing, and 3) factors that help or delay locating missing persons. Participants from Canada, Scotland, and the US had both positive and negative experiences with implementing alert systems and related policies. They highlighted what worked well, including early involvement of the right individuals and prioritizing lived experience. Legislative support and funding were important for implementing both community-based and state-wide alert systems, while grassroots approaches and community buy-in were especially critical for Canada's BC Silver Alert and Scotland's Purple Alert. Challenges included sustainability and limited evaluation. Stories of missing incidents highlighted significant emotional impacts on individuals and care partners across the three countries, with outcomes ranging from safe returns to unresolved cases, underscoring the urgent need for more effective strategies. Timely reporting, planning and investigation, and coordinated responses among first responders help locate missing persons with dementia, while delaying report and unreliable tips can hinder efforts. There is a need for improved dementia training for police and first responders and public education to improve search efforts.
Discussion
This study explored participants’ experiences with missing incidents and implementing or using alert systems and related policies to locate missing persons Canada, Scotland, and the US. Findings revealed both positive and negative experiences with implementation, the emotional impact of going missing, and factors that help or delay efforts to locate missing persons with dementia.
Consistent with existing literature (Neubauer et al., 2021a), our study found that alert system implementation required collaboration among diverse interest holders with shared goals—including those with lived experience—with strong community buy-in emphasized for community-based alert systems such as BC Silver Alert and Purple Alert. While many participants described positive experiences with implementing alert systems, evidence of their impact in locating missing persons remains limited, with most accounts being anecdotal. This underscores the need for more research focused on impact evaluation (Adekoya, Daum et al., 2025; Gier et al., 2017).
Funding from governmental or non-governmental organizations was viewed as critical, yet sustainable funding and political support remained ongoing challenges. Although police-led alert systems are often recommended, this model may not suit all contexts (Neubauer et al., 2021a). For example, BC Silver Alert is citizen-led, but promotes collaboration with police (BC Silver Alert, n.d.), and Purple Alert allowed families to initiate alerts via a mobile app (Adekoya, Daum et al., 2025) before its discontinuation (Alzheimer Scotland, n.d.). Implementing similar alert systems should consider local police and community capacities to ensure appropriate system design and fit (Neubauer et al., 2021a).
As revealed in this study, dementia-related missing incidents have an emotional impact on individuals, care partners, and first responders. In line with previous studies (Miguel-Cruz et al., 2024; Taylor et al., 2019), missing incidents occurred unexpectedly during routine or familiar activities, such as walking or driving, especially when supervision was limited. These events were described as traumatic, evoking feelings of helplessness and deep worry. Many individuals living with dementia and their care partners were unaware of the risk of going missing until an incident occurred. This often led to a reactive response, with families turning to preventive strategies such as locating technologies or ID programs such as MedicAlert®. The pattern suggests a gap in awareness, early education and support at the time of the dementia diagnosis, highlighting the need for timely resources for newly diagnosed individuals and their care partners.
Participants also raised concerns about driving cessation due to safety risks. While revoking a driver's license may be necessary, it can have significant emotional impacts, resulting in feelings of sadness, grief, frustration, and resentment, especially for individuals living with dementia. Ultimately, the loss of one's license to drive can lead to a reduced sense of autonomy for the person living with dementia (Holden & Pusey, 2021).
Alert systems have the potential of quickly locating missing persons with dementia by notifying the public and offering support to individuals and their care partners, while also supporting a sense of independence (Adekoya, Daum et al., 2025; Neubauer et al., 2021a). However, participants in this study shared stories where alert systems were either unavailable, not activated, or ineffective in locating a missing person. They emphasized the need to improve alert system effectiveness—for example, by enabling notifications on mobile phones—and to ensure such systems are consistently in place. Research has highlighted the importance of localized alerts (Neubauer et al., 2021a), as most missing persons with dementia are typically found close to their last known location (Miguel-Cruz et al., 2024). The findings from this study indicate there is limited empirical evidence on the effectiveness of alert systems and point to the need for greater public education about alert systems and their potential to support timely searches and enhance safety.
Participants shared factors that help or delay locating missing persons with dementia. Promptly reporting missing persons to the police is critical and can enable timely activation of alert systems, yet misconceptions—such as the belief that one must wait 24 h—can delay searches and reduce effectiveness. Although there is no required waiting period, care partners may hesitate to report missing relatives to police (Larsson et al., 2025) due to embarrassment, guilt, or fear of judgment (Shalev Greene et al., 2019). Collaboration between police and community organizations, such as Alzheimer Societies and health care professionals, can help address misconceptions, raise awareness of missing incidents, and connect people living with dementia and care partners families with appropriate resources (Adekoya, Daum et al., 2025; Neubauer et al., 2021a).
While public sharing of personal information can aid in searches (Adekoya, Daum et al., 2025; Gergerich & Davis, 2017), it is only effective when individuals can accurately recognize the missing person (Gier et al., 2017), underscoring the risk of misinformation and false leads. To improve outcomes, participants identified the need for dementia-specific training for first responders and the effective use of alert systems.
Recommendations for Policy and Practice
These findings provide key recommendations for policy and practice. The implementation of alert systems and related policies calls for a partnership-based approach that involves early engagement of key interest holders, such as people with lived experience, police, community organizations, and policymakers, to align shared goals and secure sustainable funding. A structured evaluation process is necessary for assessing the effectiveness and overall impact of alert systems. Alert systems can allow users to receive mobile notifications tailored to geographic areas, paired with public education to increase awareness of their value in supporting timely searches and enhancing safety.
Given the emotional impact of missing incidents on individuals and care partners and the reality that such events occur both in the community and nursing homes, proactive support is needed before, during, and after incidents. Training for primary care providers, service providers, and health care professionals needs to emphasize early awareness and education about the risk of going missing, proactive safety strategies, including existing alert systems and connection to community resources, especially at the time of diagnosis.
Clear policies and standardized training for first responders, including police and search and rescue teams, are essential to promote appropriate, compassionate responses to missing persons with dementia. These efforts can include guidance on how to collaborate with care partners and interact with people living with dementia. Partnerships between first responders and community organizations can foster public trust, raise awareness of the risks, and promote timely reporting—ultimately supporting more effective and coordinated search efforts.
Strengths and Limitations
The strengths of this study lie in its use of multiple case studies and integration of interest holders’ stories to capture the social and cultural contexts surrounding missing incidents and individual experiences of going missing. By preserving narrative detail and meaning, the study offers rich insights into how these events are experienced and interpreted. Inclusion of diverse interest holders across three countries further enhances the applicability of findings beyond a single context. However, the use of purposive sampling technique may have led to the recruitment of participants who were particularly eager to share their experiences, as well as those more inclined to support alert systems. Consequently, this approach could have resulted in a sample comprised of individuals who are more willing and invested in the study.
Additionally, as most participants were White, the study may not fully reflect the perspectives of racialized groups. While the sample comprised service providers, including some health care providers, we did not specifically recruit from home care or long-term care, potentially limiting valuable perspectives. Future studies could benefit from targeted recruitment to improve diversity and representation.
Conclusion
This study explored user experiences with implementing alert systems and related policies for missing persons with dementia across Canada, Scotland, and the US, drawing on stories and insights from individuals who went missing, care partners, and those involved in search efforts. Participants emphasized the need for early interest holder involvement, along with community buy-in, legislative support, funding, and inter-agency collaboration and discussed challenges such as limited evaluation, and sustainable funding. Emotional impacts of missing incidents were profound, highlighting the urgent need for effective strategies, including alert systems to support prompt search efforts. Effective alert systems require timely reporting, tailored mobile notifications, coordinated planning, and public education to reduce misinformation. The findings highlight the importance of understanding user experiences with missing incidents and implementing alert systems and related policies, as a key step in addressing dementia-related missing incidents and enhancing the safety of individuals at risk of going missing.
Footnotes
Acknowledgments
We thank the study participants for contributing their time to this study.
Ethical Considerations
The study received ethics clearance from the University of Waterloo Research Ethics Board (44447), University of Edinburgh (CNST149), and the Waterloo Regional Police.
Consent to Participate
The researcher obtained either written or verbal informed consent from all participants after providing information about the study, including the purpose both orally and in writing. Participants were informed of their right to withdraw consent at any time.
Consent for Publication
Informed consent for publication was provided by study participants.
Author Contributions
Conceptualization: AA, LL, VB, JH. Methodology: AA, LL, VB, JH. Data collection: AA. Data analysis: AA, LL, VB, JH. First draft: AA. Review and editing: AA, LL, VB, JH. All authors approved the manuscript.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The first author was funded by the Alzheimer Society Research Program/AGE-WELL Doctoral Award, and Canadian Nurses Foundation Kathleen Rowat Graduate Student Award.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability
Data generated or analyzed during this study are included in this published article. To preserve the privacy and confidentiality of the study participants, audio-video records are not made available on open access.