Implementing global positioning system trackers for people with dementia who are at risk of wandering

Abstract

Objective

The main aim of this study was to evaluate the feasibility and acceptability of using a GPS tracker to mitigate the risks associated with wandering for people with dementia and those caring for them and further evaluate the impact of trackers in delaying 24-hour care and the potential for reducing the involvement of support services, such as the police, in locating patients.

Methods

We recruited forty-five wearers-carers dyads, and a GPS tracker was issued to each participant. Dyads completed pre-and post-outcome questionnaires after six months, and a use-log of experiences was maintained through monthly monitoring calls. At six months, focus groups were conducted with 14 dyads where they shared ideas and learning. Data analyses were performed on outcome questionnaires, use-log analysis, and focus groups discussion.

Results

A 24% (N = 14) attrition rate was recorded, with 76% (N = 34) of the participants completing pre- and post-outcome questionnaires, of which 41% (N = 14) attended four focus group meetings. Participants reported enhanced independence for wearers as fewer restrictions were placed on their movements, peace of mind and reduced burden for the carers with less need to involve police or social services, and delays in 24-hour care.

Conclusion

The results supported the feasibility of routine implementation of GPS trackers in dementia care with clear guidance, monitoring and support to family carers on safe use. This could delay admission into 24-hour care as wearers and carers have a greater sense of safety and are better connected should help be required. Studies with larger sample sizes, diverse participants and health economic analysis are needed to develop the evidence base further ahead of the routine implementation of GPS trackers in health and social care services.

Introduction

Maximising the time people with dementia can live independently has become a public health imperative (Department of Health, 2016). Dementia is the leading cause of death in women in the UK and one of the most significant causes of disability and dependency among older people globally (WHO, 2022). Over 55 million people estimated to live with dementia worldwide and forecast to rise to 139 million by 2050 (Alzheimer’s Disease International, 2022). It is estimated that 60% of people diagnosed with dementia will get lost at some point, with many doing so repeatedly (Alzheimer’s Association, 2023). Bantry-White and Montgomery (2015) found the risk of getting lost partly account for the placing restrictions on people with dementia. Incidences of wandering in the community often lead to admission into 24-hour care (Bartlett et al., 2019), Carers might be embarrassed and guilty reporting family to the police, with a negative reaction by people with dementia (Shalev Greene, et al., 2019). When people with dementia are missing, the consequences can result in severe injury and death with the attendant emotional trauma for carers (Lindeza et al., 2020), and a considerable financial burden for the services that may be called to find or rescue them. Carers cohabiting with people with dementia will experience a significantly greater burden and poorer psychological well-being than those who dn not (Brini et al., 2022), due to a restricted social life for the carer (Biggs et al., 2019), a feeling of captivity in their role and/or the tension arising from concerns for the health and safety of their loved ones (Dreyfus et al., 2018). In the geographical area covered in this study, it is estimated about a third of missing persons reported to the police relate to persons living with dementia. ¹ Aside from the cost to police, health and social services, family members suffer anxiety and distress while police search for the person, is being searched for, increasing the likelihood of residential care. This can have a huge cost implication (for example, in Barnsley, this costs nearly £37,000 per year at an average of £708.65 per week ² ) and the associated emotional stress of the move to a nursing home (Hähnel et al., 2022; Johansson et al., 2014).

There is a need for an intervention that suits a domestic setting and enables access to a good support network, improves capabilities and enhances social wellbeing for people with dementia and people caring for them, supported by Assistive Technology (AT) (Alzheimers Society, 2023). Many AT interventions have been proposed for use with dementia to reduce falls risk, teleprompting, telepresence, coping and self-management (Brims & Oliver, 2019; Evans et al., 2021; Moyle et al., 2019; Pappadà et al., 2021; Øksnebjerg et al., 2020). GPS trackers may reduce emotional distress and risk of physical harm by assisting family members to find relatives much quicker, reducing the burden on themselves, the police, rescue services and health and social care services (Bartlett & Brannelly, 2019). Recent systematic reviews of the use of GPS systems in dementia care concluded that the application of GPS methodologies in dementia care show promise for increased safety to users, reduced burden for carers and increased activity and improved health for both, although the consensus remains that evidence of the beneficial effects of GPS remains insufficient (Ehn et al., 2021; Firouraghi et al., 2022; Megges et al., 2018; Rohne et al., 2017). Further research is required to evaluate the efficacy of GPS tracking on enhancing the independence and well-being of people with dementia and reducing the burden on carers. However, the feasibility of conducting a research trial of GPS tracking in dementia care is unclear and feasibility studies are required to explore feasibility to conduct a research trial and acceptability of GPS to support a more definitive study (Milne et al., 2014).

Therefore, this was a feasibility study in preparation for a larger, that evaluated the feasibility of a GPS intervention and methodology in terms of recruitment, adherence, attrition, assessments, safety and follow-up, We also evaluated the overall acceptability of a GPS tracking device for people with dementia at risk of wandering and their carers. ³ The main objective was to evaluate whether wearers and carers found the tracker usable and practical, while acceptable in terms of independence for the wearer and reduced burden for the carer. The study also considered whether the GPS trackers reduce the risk of harm, prolong independence at home, reduce the use of service response and delay the need for 24hr care. This study was conducted in Barnsley and Wakefield in Yorkshire, England.

Method

The study used a mixed-method approach combining qualitative interviews and focus groups with pre and post questionnaire data. Wearer-carer dyads, consisting of people with a diagnosis of dementia or significant cognitive impairment who had a history or were adjudged to be at risk from wandering, and their nominated carers. A range of questionnaires were conducted at baseline and then at six months follow-up. The research team contacted wearer-carer dyads monthly on the phone or at home during the six-month follow-up. This allowed monitoring of the device’s usability and ensures participants’ circumstances are documented consistently throughout the follow-up period. We conducted follow-up assessments at six months (or as soon as dyads exited the study for any reason) to understand the device’s actual use, acceptability and impact using exit questionnaires previously used successfully in a similar study by Liu et al. (2017). Four focus group meetings were conducted with a sample of wearer-carer dyads (n = 14) and stakeholders (n = 3).

Ethical issues

The study was approved by the Health Research Authority (IRAS 297216) and the host University Research Ethics and Integrity Committee. It was also registered with a clinical trial Web site (Doyle et al., 2022). The carers and wearers provided informed consent. Where the person with dementia lacked capacity and could not consent, their wishes were considered through liaison with their nearest legal relatives, weighing the benefits and proportionality of the intervention balanced against the risks. GPS tracking is, by nature, intrusive and in this study only the wearer and their relative had access to the tracking software.

Inclusion/exclusion criteria

The individual given the GPS tracker (wearer) was included in this study if he/she: (a) lived within Barnsley and Wakefield district, (b) deemed to be at risk of wandering by the carer or referrer and/or if a record of going missing on the police’s missing persons database (c) had cognitive impairment (e.g., dementia) confirmed through memory services, (d) lived alone, or with family members, (e) had a designated family member/close friend (as a carer) to supervise the use of the GPS tracking device. Participants who lived in a 24-hour care setting were excluded.

Interventions

Wearers were issued a GPS tracker, and their carers monitored them for six months. Carers received instructions on how to use the device and had the GPS app downloaded on their phones. The GPS tracker used had a proven track record as a lone worker device for healthcare staff. All costs for the tracker and mobile data were covered by the project and there was no external/third party monitoring using the tracker. The tracker was worn with a lanyard, on a keyring, or inserted in a handbag or pocket. The wearer can speak to their caregiver by pushing a button. A loudspeaker function allows the carer to contact the wearer directly. The trackers have a geofencing function, which allows carers to receive real-time location updates through an app and be alerted when the wearer leaves a predefined perimeter. Carers can monitor the real-time movement of the wearer on the map and access location history, allowing for alternative locations search in the event the wearer gets lost without the tracker. The trackers also send fall alerts to registered numbers and can inform carers when the battery needs charging. The trackers can register up to five mobile numbers and send alerts in turns until call is taken.

The research assistant contacted the dyads monthly and logged participants’ experiences. Once a dyad stopped using the tracker, a research assistant met them face-to-face to complete exit interviews. A multi-agency steering group sat monthly to review and address issues arising from the study.

Outcome measures

The primary outcome was the feasibility and acceptability of the intervention. This included uptake and use of the GPS for six months period, and considered adherence, attrition, viability of assessments and follow-up. Feasibility was also assessed on whether the person with dementia came to any harm through wandering whilst wearing the trackers and how quick it was to retrieve them when they get lost without needing to contact the police. Acceptability of the intervention was also assessed through focus group discussions using a topic guide (see later) Responses recorded in a use-log database were combined with focus group data at the end of the study for overall analysis.

Further outcome measures included quality of life for both the person with dementia and the carer. Quality of life for the person with dementia was evaluated through focus group feedback and extent to which they were able to continue living and socialising independently. Carer burden assessed by asking whether they felt anxious about their loved ones getting lost despite the tracker, though monthly contacts and focus group feedback. The following measures were completed at baseline, then at follow-up:

• (a) Zarit Burden Interview - a 22-item scale measuring how carers perceive their burden due to caring for a person with dementia (Stagg & Larner, 2015; Zarit et al., 1980).

• (b) Cornel-Brown’s Quality of Life Scale - a self-reported tool to measure a person’s perceived quality of life (Ready et al., 2002).

• (c) Revised Algase Wandering Scale - a 28-point questionnaire based on five dimensions of wandering designed to measure wandering behaviours in persons living with dementia (Algase et al., 2001).

• (d) The University of Alberta useability questionnaire - evaluated the degree to which participants believed the GPS was helpful, the degree of ease associated with using the trackers, their actual behaviour, and their future willingness to pay for it (Liu et al., 2017). Completed at six months or when a participant exited the study.

Data analysis

Demographic and diagnostic information was recorded at baseline and summarised. We reported participant flow in accordance with the CONSORT statement (Eldridge et al., 2016; Figure 1). We compared the mean of pre-post assessment using a paired-sample t-test (Table 4) and used descriptive statistics to summarise after-action review ranks based on the exit interview questionnaire. We used the median scores as a benchmark for accessing high and low scores in performance and ease-of-use experiences. For example, a median score of four for the carer and two for the wearer would indicate a positive impact and acceptance.

Figure 1.

CONSORT diagram to demonstrate participant flow.

Table 4.

Pre and post measures of carer burden, RAWs and CB_QoL.

Scale name	Mean (SD)		Mean df	t	df	p
	Pre-test	Post-test
Zarit burden	40.35 (12.000)	35.35 (15.503)	5.00000	2.641	33	.006
RAWS	80.21 (22.162)	86.17 (27.532)	−5.97059	−1.934	33	.031
CB_QOLs	12.32 (17.131)	13.61 (17.527)	−1.29412	−0.670	33	.254

RAWS: revised algase wandering scale; CB_QOLs: cornell brown quality of life scale.

The use-log database and focus group data were analysed using a general inductive approach (Thomas, 2003) based on study objective and themes emerging from the study data. Use-log analysis was analysed separately and highlighted themes included in the focus group guide based on three main topics: (1) experience and outcome of using the GPS tracker, (2) experience and impact of the GPS tracker on the person with dementia and the carer, and (3) challenges and key improvements for the device. The focus group discussion was recorded and moderated by the Chief Investigator, The recordings were transcribed verbatim and coded by researcher. Themes from the dataset were reviewed by the research team for consistency and validity.

Results

Participants

Seventy-one (71) potentially eligible participants were referred from NHS and voluntary services. Forty-five dyads gave consent to participate in the study and were issued a GPS tracker. Of the 26 referred who did not participate 14 (19.8%) refused to participate and four (5.6%) did not respond to invitation. to participate. In total consent rate was 75%. Five were ineligible as taken into 24-hour care (Figure 1).

Demographic and diagnostic data

Of the 45 dyads included in this study, 57.8% male and 42.2% female (mean age = 78.76 - min = 64, max = 91 years, Range = 32, SD = 6.813). Participants were primarily White British (93.3%), with almost half of them having Alzheimer’s disease (48.8%) (Table 1).

Table 1.

Demographic and diagnostic data (n = 45).

Wearers demographic	Mean (SD)
Age	78.76 (6.813)
Age group	n (%)
60–70	4 (8.9)
71–80	24 (53.3)
81–90	15 (33.3)
91+	2 (4.4)
Gender	n (%)
Male	26 (57.8)
Female	19 (42.2)
Ethnicity	n (%)
White british	42 (93.3)
White other	3 (6.7)
Location	n (%)
Barnsley	13 (28.9)
Wakefield	42 (71.1)
Diagnosis	n (%)
Alzheimer’s disease	22 (48.8)
Vascular dementia	8 (17.8)
Mixed dementia	12 (26.7)
Not known	3 (6.7)

Thirty-four carers (77%) and 33 wearers (75%) completed the exit questionnaire. Figure 1 shows participant flow throughout the study. Table 2 shows how long participants spent in the study (Months completed - Mean = 5.11. SD 1.543). Of 45 dyads recruited in the study, fifteen dropped out (33%) before six months for different reasons, including deterioration in health, admission into care home, a refusal from the wearer, death of carer or carer stress (Figure 1). Of 15 who left the study early, seven still completed exit questionnaires to report the usefulness of the tracker. One individual dyad was lost to follow-up, so data for 44 participants were analysed in the use-log database.

Table 2.

Participants’ duration in the study (n = 45).

Number of month in the study	Number of participants	Percentage(%)
Participants who completed 6-months	30	67
Participants who completed 5-months	4	9
Participants who were up to 4-months	2	4
Participants who were up to 3-months	3	7
Participants who completed only 2-months	3	7
Participants who dropped out after one month	2	4
Lost to follow-up	1	2
Mean number of months adherence	5.11 (S.D. 1.543)	85.17

The feasibility measures (use-log database)

Practical and usable

In all the 45 dyads that were followed up, only four (9%) carers reported the tracker was not practicable for their relatives because the person with dementia refused to wear them. Nearly all, 91% of the wearers either wore the tracker in a lanyard or on a key ring; others reported inserting it in the wearer’s handbag or pockets.

Four main circumstances for use were identified: 1) The person with dementia lives independently and is routinely being monitored by a carer through the GPS app (22%, n = 10)). Two incidents were logged where the tracker sent an alert to the carer when the person with dementia fell from bed and couldn’t get up. The carer travelled to the wearer’s residence to help. (2) The person with dementia lives with the carer and is allowed some independence within the neighbourhood while being monitored by the carer (44%, n = 20) (some individuals have the cognitive ability to operate the device while some don’t). (3) The person with dementia lives with the carer and only wears a tracker when being left alone in the house (13%, n = 6). The carer monitors the wearer’s activities in the house and uses the loudspeaker phone function to communicate. (4) the person with dementia lives with family and wears the GPS when travelling with the carer or family, so if missing in a busy environment, they could be easily located (18%, n = (8) (Table 2).

Carers reported the ability to track and speak to the wearer as the best thing about the trackers. Table 3 shows that 91% of participants have used one or two GPS features, with tracking and two-way calling features topping the most used functions (58%). Only seven per cent did not use any feature or did not need to use the functions but used the tracker as a safeguard that provided assurance. No serious untoward incidents reported.

Table 3.

Evaluation of most used features of the GPS trackers by carer-wearer dyad and use circumstances (n = 44).

Functions	No of participant	Percentage
Tracking only	6	13
Tracking, two-way calling only	26	58
Tracking, two-way calling, fall detection alert, geofencing	7	16
Tracking and geofencing only	1	2
Fall detection and tracking only	1	2
None	3	7
Missing	1	2
Total	45	100
Living/use circumstances
Wearer living alone	10	22
Wearer living with family but independent	20	44
Wearer lives with carer, wears tracker when alone	6	13
Wearer lives with carer, wears tracker when out with family	8	18
Missing, lost to follow-up	1	2
Total	45	100

Source: Use-log database.

Quality of life, useability (exit interviews)

The pre-post-test for the Zarit Burden Scale measuring carer burden indicated that the mean weight differed between baseline (M = 40.35, SD = 12.000) and follow-up (M = 35.3529, SD = 15.5044) at 0.001 level of significance, t (33) = 2.641, n = 34, p < .001, 95% CI for mean difference = 1.14801 to 8.5199, r = 0.705. On average, the weight of reduction was 5.000 less than the baseline, which suggests that the GPS had good effects on reducing carers’ burden (Table 4). It is noteworthy that the Revised Wandering Scale outcome had an increased difference between pre-post results, which is likely due to more opportunity to wander safely when using the tracker. There was no significant difference for the QoL scale from the pre-post-test. However, post measures were taken as an overall indication of QoL and it is likely QoL would diminish anyway given the circumstances, regardless of intervention

Exit interview results show that more than half of the people with dementia (54.5%) reported improved independence in the neighbourhood, with almost half (45.5%) indicating the device helped them with daily activities outside of the house (e.g., shopping, transportation). Ninety-seven per cent of the wearers and 71.1% of carers (Table 5) reported the tracker was useful for establishing a connection between wearer and carer, with more than half of the carers (64.7%) reporting an increased frequency and quality of wearers’ daily activities.

Table 5.

Evaluation of the performance and ease-of-use experiences of the GPS trackers by wearers (N = 33) and carers (N = 34).

Feasibility & acceptability	Agree	Neither agree or disagree	Disagree	Median score
Wearer (n = 33)	%	%	%
Increased independence	54.5	24.2	21.2	3
Increased daily activities outside the house (e.g., shopping, transportation)	45.5	39.4	15.2	2
GPS useful to inform my caregiver where I am	97.0	—	3.0	3
Learning to operate device was easy for me	30.3	9.1	60.6	1
I Found the system flexible to use	21.2	30.3	48.5	2
Carer (34)
My relative had increased independence	73.5	14.7	11.8	4
Using the GPS increased the quantity and quality of my relative’s daily activities (e.g., shopping, transportation)	64.7	20.6	14.7	4
The GPS was useful to inform me where my relative was	94	3	3	5
Learning to operate the GPS was easy for my relative	44.1	11.8	44.1	3
My relative found the GPS easy to understand	32	18	50	2.5
I found the app easy to use	82.4	5.9	11.8	4.5
I found the app fast to get into	76.5	17.6	5.9	4

Note. One person with dementia was too unwell to contribute to the exit interviews hence 33 wearers’ data recorded here.

Table 5 shows, carers appear to find the tracker app easy to use (82.4%) or fast to get into (76.5%). However, learning to operate the device was not easy for the majority of people with dementia (60.6%). Carers reported they would continue to support the person with dementia to use the tracker if they are able to do so, and a majority (94.1%) were happy to use it at their own expense.

Focus Group Analysis

Four focus groups of 60 minutes were held virtually via Microsoft Teams in accordance with best practice guidance (Kreuger & Casey, 2014), with a range of three to four dyads in each group. A total of 14 wearer-carer dyads and three stakeholders attended the focus groups. Most carers were spouses and children of the wearer. Other stakeholders participating were representative of the police and NHS memory services. Figure 2 illustrates how theme number three (Device features) had an impact on theme one (Experience of carers) and theme two (Experience of the person with dementia).

Figure 2.

Thematic structure of focus group analysis.

In summary, all 14 dyad participants found the GPS trackers acceptable, safe, and feasible for managing people with dementia and they felt the tracker enhanced social connectedness/assurance, wearer independence, safety for the wearer and reduced need to contact police and risk of 24-hour care (Table 6).

Table 6.

Case examples to support benefits identified from focus group discussions.

Social connection/reassurance	Improved independence	Prevention of harm	Less need to involve police
C1 - “when my husband first got the tracker, it was beneficial as he would go out and walk locally on his own, and I could track or contact him if I was concerned about his whereabouts, or he could call me if he had any concerns”	C1 –“ my grandad used to ‘feel like a ‘prisoned’. But with the tracker, he is allowed to walk. I Put the app on and get it to update his location every 30 seconds and watch his movement; he seems to have calmed down when he gets home”	C1 – “on one occasion, my mum hadn’t arrived home when she was due, and I could locate the tracker and see that she had gotten on the wrong bus. I made my way to a bus stop en route and waited till the bus arrived. I could then board the bus and take my mum off it”	C1 – The tracker showed me he was seven miles away from home. I came home thinking I must call the police. But I rang a couple of neighbours instead, and we located him and brought him back, whereas before, I’d contact the police immediately
C2 – “I look at my tracker, and I can see she is still at home, and I feel more comfortable going out for a walk while she is alone”	C2 – “neighbours always call the police to report mum is seen wandering. The tracker gave me the confidence to say look: she is perfectly safe. She is not wandering; she is going for a walk”	C2 – “I left him in the house to pick something in the neighbourhood, and before I came back, he disappeared. It was the day the temperature went more than 40°. The tracker showed me he was down by M1, which was about seven miles away from our house. I couldn’t have known where to look for him if not for the tracker.’	C2 – “…police were about to send the drone out when we got him speaking to us on the tracker”

Participants described different experiences for the person with dementia. Some persons tend to put on the device by themselves with regular reminders. For others, ‘My wife keeps her handbag all the time, and I pop in the tracker in her handbag’ or ‘he seems very proud of it, so; fortunately, he just keeps it in his chest pocket all the time but would forever take it off if put round the neck’. Many carers indicated their loved ones initially rejected the device but eventually accepted using it routinely. Some people with dementia felt it was bulky to wear around the neck and used a key fob as a ‘safety blanket’ for reassurance instead. As Figure 2 depicts, the impact of the GPS features show they benefitted the person with dementia and their carers. Participants liked the ‘tracking function’, especially the ability to save a history of wearers’ movement, as they could use this history when searching if wearers went missing without the tracker. Others included ‘the loudspeaker function’, geofencing, fall detection and live update functions and low battery warning. Examples of benefits of the tracker summarised in Table 6.

However, there were some challenges and room for improvement. For example, the accuracy of location and absence of sound when it rings may prove finding the tracker difficult if misplaced. Other issues included supervisory commitment required. Some participants described what they did to locate the device when misplaced, including attaching ‘a tile – a tiny square tracker used for keys’– or ‘Chipolo’ to the GPS. One participant suggested fitting in ‘What3word app (a separate location mapping-search app) for better tracking accuracy.

The results show that the intervention was feasible and acceptable for wearers and carers. The refusal rate of 25%, attrition over six months of 33% and adherence to full duration of the study follow-up of 85% are satisfactory in terms of feasibility for future implementation studies and trials. The independence of the person with dementia was greatly enhanced, with the burden on carers much reduced as they felt more comfortable leaving wearers alone. Additionally, police involvement was significantly reduced, suggesting possible economic savings, and no untoward incidents. The intervention could delay admission of the person with dementia into more restrictive care. GPS trackers may be provided to people with dementia earlier in the course of their illness to build their confidence and improve their mobility behaviour in the long term.

Discussion

This findings suggest that GPS trackers can be implemented safely and practically for people living with dementia and their carers. The intervention could be delivered with minimal risk of harm, with satisfactory recruitment, consent, adherence and attrition rates, suggesting the methods employed in this study are feasible, safe, and acceptable for future roll-out in a larger implementation study or trial. Safety and psychological well-being were significant elements of carers’ acceptability of the device. Knowing you could be found when lost was one of the reassuring experiences of the person living with dementia in this study. This is consistent with previous studies that prioritised physical safety over privacy concerns, with the perception of safety as the biggest driver of uptake (Dreyfus et al., 2018; Gibson et al., 2015) and for wider benefits related to independence, safety, reduced burden and activity (Ehn et al., 2021; Firouraghi et al., 2022; Rohne et al., 2017). As with previous studies, some improvements in optimising the methodology and interventions would be useful (Megges et al., 2018), and further thought required on how to make it easier for wearers and carers to provide reliable feedback sooner and more frequently ahead of future research (Milne et al., 2014), and issuing earlier before person starts to get lost. Unlike previous studies, which suggested that GPS technology is only feasible for people in the early stages of dementia (Pot et al., 2012), our study shows that people at more advanced stages of dementia can benefit from the trackers, either living independently or with family members. Carers had different perspectives on independence for the people with dementia. This included physical and emotional independence, which accounts for those who are mobile and those who can no longer wander, while others could still engage in activities of daily living and socialise in the neighbourhood. The emotional independence is described as the feeling of reassurance, a sense of safety and social connectedness for dyads, increasing their social wellbeing. Carers reported concerns about neighbours who were unaware of the benefits of the GPS tracker and in one case a neighbour called the police when they saw the wearer out alone. This suggests the need for greater public awareness of the potential benefits and resonates with Spilker et al. (2019) who suggest a ‘techno-organisational network’ where the implementation of GPS technology involves human and non-human actors. The safety and well-being of the person with dementia is a function of the supervisory commitment of different actors. This means that GPS itself cannot produce the desired result alone without a carefully designed delegation of supervisory roles and responsibilities and ‘a fine-tuned interplay between the technical and organisational elements’ (p.294) involving different sets of carers, healthcare staff, community members, network providers, and especially the police tasked with searching for missing persons. This is consistent with previous studies emphasising the potential impact and benefits for the wider community and stakeholders (Firouraghi et al., 2022; Rohne et al., 2017) and GPS tracker implementation must consider the role of significant others (Ehn et al., 2021; Liu et al., 2017; Milne et al., 2014), particularly as carers’ social norms and the ability to overcome psychological barriers could influence GPS uptake and evaluation.

Optimising the care of the people with dementia within their homes is not only a public health imperative (Samus et al., 2018) but also preferred by people with dementia (Scocco et al., 2006); it costs less and guarantees greater quality of life (Olsen et al., 2016). Our study suggests family members also relied on neighbours and wider social network in addition to the GPS trackers to find the person with dementia when lost, while there was a reduction in the police interventions. The impact of the trackers varied according to carers’ perceived ability of the wearer to interact with it. As the cognition of the wearer begins to wane such that he/she cannot operate the tracker, some carers stopped the wearer from going out alone. People in their early diagnosis may benefit more than those who have progressed with the disease, initially as a proactive safeguard should the person start getting lost. Any intervention that alleviates carers’ burden when managing wandering behaviour is desired. Consistent with this, the study demonstrated that tracking and communicating with the person with dementia offered carers peace of mind. Carers showed confidence in dealing with loved ones getting lost without needing to contact the police despite the severity of the incidents. Such confidence and social connection indicate that people with dementia could remain in the community for longer. Although we did not measure the health economics of using the device specifically, the outcome of this study suggests the technology may mitigate the cost of finding a person with dementia when lost and reducing the need for 24-hour care.

Overall, both the exit questionnaire, the use-log analysis, and the focus group results confirm the GPS technology’s impact and show that participants have used the device for its intended purpose effectively, efficiently, and with a feeling of satisfaction (Lewis, 2014).

Limitations and study implications

The study had some limitations. Aside from the relatively small sample size, most people with dementia in this study have progressed in their dementia illness, making the reliability of responses variable (Milne, et al., 2014). Our results suggest that cognitive ability had an impact on the degree of independence of the wearer and the confidence of the carer to continue use of the device. We did not measure the severity of the dementia on the wearer at baseline or follow-up, but future studies will need to do so to determine the relative impact at different stages of dementia. Wearers were generally unable to complete quality of life questionnaires, and a similar study has recommended carers as a proxy for the responses of dementia clients in GPS studies (Liu et al., 2018). There was no control group in this study making it difficult to draw any firm conclusions about the effectiveness of trackers, but the feedback was overwhelmingly positive. A larger randomised trial or implementation study with a matched control group would be useful. Most dyads in this study are of white ethnic backgrounds, which may limit generalisability. Future studies should recruit a culturally diverse population. Future studies should aim to recruit people with early-stage dementia and evaluate the health economics of GPS technology in dementia care in relation to reducing costs of rescue, admission into health and social care settings and quality of life.

Conclusion

The GPS trackers used in this study were acceptable, safe, and feasible for the dyads and in terms of feasibility for future research when implemented with clear guidance and support from the research team. Wearers and carers had a greater sense of safety, were better connected should help be required, and participants were willing to continue using the trackers at their own expense. The confidence, ‘peace of mind', and the ability to locate the person with dementia quickly and safely with less need to involve the police support the conclusion that the technology can potentially delay admission into a 24-hours care setting. Based on the findings in terms of recruitment, retention, adherence, safety and acceptability, future larger trials of GPS trackers should be feasible, although need to consider mixed methods for data collection. The study also highlighted possible challenges and limitations of the technology, including carer supervisory commitments, rapid deterioration of the wearer, location accuracy and ability to keep up with technical procedures. Future studies should prioritise regular technical support and, provide an easy reference guide for carers. There is also a need to simplify data collection instruments for a better participant experience and improved reliability of data in future research studies.

Biography

Michael Doyle is Professor of Mental Health at the University of Huddersfield, a joint appointment with the NHS and an Honorary Clinical Chair, at the University of Manchester. He is a registered mental health nurse, and he has published widely for over 20 years on mental health, psychosocial risk assessment, formulation and interventions, forensic mental health and related studies, and he was the lead for the GPS tracker feasibility study.

Emmanuel S Nwofe is a Research Fellow at the Centre for Applied Dementia Studies (CfADS) at the University of Bradford. His research interest is ageing and dementia, particularly in dementia prevention, modifiable risk factors, and brain health among Minority Ethnic (ME) communities. Emmanuel is also interested in health communications and implementation science. He was the main researcher on the research team.

Clementinah Rooke is a Senior Lecturer in Mental Health Nursing Department of Nursing and Midwifery, School of Human and Health Sciences, University of Huddersfield, United Kingdom. Her research interests are person-centred dementia care, public and service user involvement and salutogenic health design. She provided insights into the views of experts by experience and advised on research design.

Kalyan Seelam is a consultant psychiatrist in Memory Assessment and Support Service in Barnsley. He has a special interest in the use of assistive technology in supporting people with dementia. He provided senior expert clinical advice and support to the study and helped with recruitment of dyads.

John Porter is a Police officer within South Yorkshire Police, having served 23 years with the force. He has been a Police search advisor for 13 years and is now the Police search coordinator for the force. He is responsible for the training of all licenced police searchers and the force lead for the GPS tracker project for people living with Dementia.

David Bishop is a higher trainee in older adult and general adult psychiatry in the South Yorkshire area. He has an interest in the interface between psychiatry and neurology and in medical education. He is an honorary clinical teacher at the University of Sheffield. He provided support and clinical advice to the research team when designing this study and recruiting dyads.

Ethical statement

Ethical approval

This study was approved by the Health Research Authority, England, and Health and Care Research Wales (HCRW) on 7^th December 2021, IRAS reference 297216 REC reference: 21/NW/0290.

ORCID iDs

Michael Doyle https://orcid.org/0000-0002-3560-3966

Emmanuel S Nwofe https://orcid.org/0000-0001-7620-6978

Clementinah Rooke https://orcid.org/0000-0002-6694-7067