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Using Tracking Device on Patients with Dementia: A Systematic Review
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Background
Electronic tracking devices, also known as locators, monitors, or surveillance devices, are increasingly being used to manage dementia-related wandering and, subsequently, raising various ethical questions. Despite the known importance technology design has on the ethics of technologies, little research has focused on the companies responsible for the design and development of electronic tracking devices. This paper is the first to perform a qualitative analysis of the ethically related content of the websites of companies that design and develop electronic tracking devices.
Objective
The aim of this study was to understand how companies that design, develop, and market electronic tracking devices for dementia care frame, through textual marketing content, the vulnerabilities and needs of persons with dementia and caregivers, the way in which electronic tracking devices respond to these vulnerabilities and needs, and the ethical issues and values at stake.
Methods
Electronic tracking device company websites were identified via a Google search, 2 device recommendation lists (Alzheimer’s Los Angeles and the Canadian Agency for Drugs and Technologies in Health), and the 2 recent reviews of wander management technology by Neubauer et al and Ray et al. To be included, websites must be official representations of companies (not market or third-party websites) developing and selling electronic tracking devices for use in dementia care. The search was conducted on December 22, 2020, returning 199 websites excluding duplicates. Data synthesis and analysis were conducted on the textual content of the included websites using a modified form of the Qualitative Analysis Guide of Leuven.
Results
In total, 29 websites met the inclusion criteria. Most (15/29, 52%) companies were in the United States. The target audience of the websites was largely caregivers. A range of intertwined vulnerabilities facing persons with dementia and their caregivers were identified, and the companies addressed these via care tools that centered on certain values such as providing information while preserving privacy. Life after device implementation was characterized as a world aspired to that sees increased safety for persons with dementia and peace of mind for caregivers.
Conclusions
The way electronic tracking device content is currently conveyed excludes persons with dementia as a target audience. In presenting their products as a response to vulnerabilities, particular values are linked to design elements. A limitation of the results is the opaque nature of website content origins. How or when values arise in the process of design, development, and marketing is unknown. Therefore, further research should explore the process companies use to identify vulnerabilities, how values are decided upon and integrated into the design of products, and the perceptions of developers regarding the ethics of electronic tracking devices.
Background:
Stay-at-home orders and other public health measures designed to mitigate the spread of COVID-19 have increased isolation among persons with memory concerns (PWMC; individuals diagnosed with cognitive impairment or Alzheimer's disease or related dementias). The pandemic has also exacerbated challenges for family members who care for PWMC. Although technology has demonstrated the potential to improve the social connections and mental health of PWMC and their family caregivers, previous research shows that older adults may be reluctant to adopt new technologies.
Objective:
We aimed to understand why and how some PWMC and their caregivers altered their use of mainstream technology, like smartphones and fitness trackers, and assistive technology to adapt to lifestyle changes (e.g. increased isolation) during the COVID-19 pandemic.
Methods:
Using data collected in 20 qualitative interviews from June to August 2020 with 20 PWMC and family caregiver dyads, we assessed changes in and barriers to everyday technology use following the implementation of COVID-19 mitigation strategies in the United States. Zoom video conferencing was utilized to conduct the interviews to protect the health of the participants who were primarily older adults.
Results:
Using qualitative thematic analysis we identified three themes which explained motivations for using technology during a pandemic: 1) maintaining social connection, 2) alleviating boredom, and 3) increasing caregiver respite. Results further revealed lingering barriers to PWMC and caregiver adoption of technologies, including: 1) PWMC dependence upon caregivers, 2) low technological literacy, and 3) limitations of existing technology.
Conclusions:
This in-depth investigation suggests that technology can provide PWMC with more independence and offer caregivers relief from caregiver burden during periods of prolonged isolation.
Clinicaltrial:
Information on strategies and practices in the search of missing persons with dementia is inconsistent which creates challenges for first responders, such as police, when they choose appropriate search and rescue approaches. The purpose of this study was to describe current strategies among police services in Ontario. Telephone interviews with police were conducted. Questions included what strategies were used for locating missing persons living with dementia, and what gaps exist in search practices. Participants described they used high- and low-tech solutions in search and rescue. They identified gaps in education and awareness, proactive strategies, resources, and funding. Information collected from the interviews was used to develop a practice guideline for police in partnership with the Alzheimer Society of Ontario.
We use data from the UK Household Longitudinal Study (UKHLS) to compare measures of socioeconomic inequality in psychological distress, measured by the General Health Questionnaire (GHQ), before (Waves 9 and the Interim 2019 Wave) and during the first wave of the COVID‐19 pandemic (April to July 2020). Based on a caseness measure, the prevalence of psychological distress increased from 18.5% to 27.7% between the 2019 Wave and April 2020 with some reversion to earlier levels in subsequent months. Also, there was a systematic increase in total inequality in the Likert GHQ‐12 score. However, measures of relative socioeconomic inequality have not increased. A Shapley‐Shorrocks decomposition analysis shows that during the peak of the first wave of the pandemic (April 2020) other socioeconomic factors declined in their share of socioeconomic inequality, while age and gender account for a larger share. The most notable increase is evident for younger women. The contribution of working in an industry related to the COVID‐19 response played a small role at Wave 9 and the Interim 2019 Wave, but more than tripled its share in April 2020. As the first wave of COVID‐19 progressed, the contribution of demographics declined from their peak level in April and chronic health conditions, housing conditions, and neighbourhood characteristics increased their contributions to socioeconomic inequality.
Objective:
In recent years numerous studies have achieved promising results in Alzheimer's Disease (AD) detection using automatic language processing. We systematically review these articles to understand the effectiveness of this approach, identify any issues and report the main findings that can guide further research.
Materials and methods:
We searched PubMed, Ovid, and Web of Science for articles published in English between 2013 and 2019. We performed a systematic literature review to answer 5 key questions: (1) What were the characteristics of participant groups? (2) What language data were collected? (3) What features of speech and language were the most informative? (4) What methods were used to classify between groups? (5) What classification performance was achieved?
Results and discussion:
We identified 33 eligible studies and 5 main findings: participants' demographic variables (especially age ) were often unbalanced between AD and control group; spontaneous speech data were collected most often; informative language features were related to word retrieval and semantic, syntactic, and acoustic impairment; neural nets, support vector machines, and decision trees performed well in AD detection, and support vector machines and decision trees performed well in decline detection; and average classification accuracy was 89% in AD and 82% in mild cognitive impairment detection versus healthy control groups.
Conclusion:
The systematic literature review supported the argument that language and speech could successfully be used to detect dementia automatically. Future studies should aim for larger and more balanced datasets, combine data collection methods and the type of information analyzed, focus on the early stages of the disease, and report performance using standardized metrics.
Background:
Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients' homes. In particular, we know little about how family carers experience patient safety of older people with dementia in the community.
Methods:
This was an explorative study, with qualitative in-depth interviews of 23 family carers of older people with suspected or diagnosed dementia. Family carers participated after receiving information primarily through health professionals working in dementia care. A semi-structured topic guide was used in a flexible way to capture participants' experiences. A four-step inductive analysis of the transcripts was informed by hermeneutic-phenomenological analysis.
Results:
The ways our participants sought to address risk and safety issues can be understood to constitute protective practices that aimed to prevent or reduce the risk of harm and/or alleviate damage from harm that occurs. The protective practices relate to four areas: physical harm, economic harm, emotional harm, and relational harm. The protective practices are interlinked, and family carers sometimes prioritize one over another, and as they form part of family practice, they are not always visible to service providers. As a result, the practices may complicate interactions with health professionals and even inadvertently conceal symptoms or care needs.
Conclusions:
When family caregivers prevent harm and meet needs, some needs may be concealed or invisible to health professionals. To recognize all needs and provide effective, safe and person-centered care, health professionals need to recognize these preventive practices and seek to build a solid partnership with family carers.
Background:
GPS tracking is increasingly used in health and aging research to objectively and unobtrusively assess individuals' daily-life mobility. However, mobility is a complex concept and its thorough description based on GPS-derived mobility indicators remains challenging.
Methods:
With the aim of reflecting the breadth of aspects incorporated in daily mobility, we propose a conceptual framework to classify GPS-derived mobility indicators based on their characteristic and analytical properties for application in health and aging research. In order to demonstrate how the classification framework can be applied, existing mobility indicators as used in existing studies are classified according to the proposed framework. Then, we propose and compute a set of selected mobility indicators based on real-life GPS data of 95 older adults that reflects diverse aspects of individuals' daily mobility. To explore latent dimensions that underlie the mobility indicators, we conduct a factor analysis.
Results:
The proposed framework enables a conceptual classification of mobility indicators based on the characteristic and analytical aspects they reflect. Characteristic aspects inform about the content of the mobility indicator and comprise categories related to space, time, movement scope, and attribute. Analytical aspects inform how a mobility indicator is aggregated with respect to temporal scale and statistical property. The proposed categories complement existing studies that often underrepresent mobility indicators involving timing, temporal distributions, and stop-move segmentations of movements. The factor analysis uncovers the following six dimensions required to obtain a comprehensive view of an older adult's daily mobility: extent of life space, quantity of out-of-home activities, time spent in active transport modes, stability of life space, elongation of life space, and timing of mobility.
Conclusion:
This research advocates incorporating GPS-based mobility indicators that reflect the multi-dimensional nature of individuals' daily mobility in future health- and aging-related research. This will foster a better understanding of what aspects of mobility are key to healthy aging.
INTRODUCTION: Although biomarker studies of late-onset Alzheimer's disease suggest pathology to be present decades before diagnosis, little is known about cognitive performance at this stage. METHODS: A sample of 210 adults (aged 40–59) of whom 103 have a parent diagnosed with dementia (family history subgroup) underwent computerized cognitive testing. Apolipoprotein E (apoE) status was determined, and 193 subjects had magnetic resonance imaging. Distance from dementia onset was estimated in relation to age of parental diagnosis, and Cardiovascular Risk Factors, Aging, and Incidence of Dementia Risk Scores were calculated. RESULTS: Lower hippocampal volumes (P = .04) were associated with poorer spatial location recall and higher Dementia Risk Scores with poorer visual recognition (P = .0005), and lower brain and hippocampal volume (P < .0001, P = .04, respectively). Family history subgroup participants closer to dementia onset had lower scores on visual working memory (P = .05), whereas those with an APOE ε4 allele performed better on form perception (P = .005). DISCUSSION: Middle-aged adults at risk of dementia show evidence of poorer cognitive performance, principally in visuospatial functions.
Introduction:
Although biomarker studies of late-onset Alzheimer's disease suggest pathology to be present decades before diagnosis, little is known about cognitive performance at this stage.
Methods:
A sample of 210 adults (aged 40-59) of whom 103 have a parent diagnosed with dementia (family history subgroup) underwent computerized cognitive testing. Apolipoprotein E (apoE) status was determined, and 193 subjects had magnetic resonance imaging. Distance from dementia onset was estimated in relation to age of parental diagnosis, and Cardiovascular Risk Factors, Aging, and Incidence of Dementia Risk Scores were calculated.
Results:
Lower hippocampal volumes (P = .04) were associated with poorer spatial location recall and higher Dementia Risk Scores with poorer visual recognition (P = .0005), and lower brain and hippocampal volume (P < .0001, P = .04, respectively). Family history subgroup participants closer to dementia onset had lower scores on visual working memory (P = .05), whereas those with an APOE ε4 allele performed better on form perception (P = .005).
Discussion:
Middle-aged adults at risk of dementia show evidence of poorer cognitive performance, principally in visuospatial functions.
Background
To provide an optimal care for persons with dementia (PWD), their individual unmet needs have to be identified and comprehensively addressed.
Objectives
Present analyses aim to describe the number and types of unmet needs of German primary care patients screened positive for dementia and factors associated with the number of unmet needs.
Methods
DelpHi-MV (Dementia: life- and person-centered help in Mecklenburg-Western Pomerania) is a general practitioner-based, cluster-randomized controlled intervention trial. Analyses are based on the baseline data of 227 PWD (≥70 years, living at home) of the intervention group who had screened positive for dementia (DemTect<9) and received a standardized computer-assisted needs assessment.
Results
PWD had on average 8.77±5.04 unmet needs (Range = 0–31). More than 90% of the PWD had three or more unmet needs. Unmet needs were identified across all predefined 26 subcategories. The majority of unmet needs occurred in the domains “nursing treatment and care” (38%), “social counseling and legal support” (20%), and “pharmacological treatment and care” (15%). More impairment in the activities of daily living was the only factor that was significantly associated with a higher number of unmet needs, independent of age, gender, living situation, presence of an informal caregiver, cognitive impairment, and depression.
Conclusions
Present results demonstrate that community-dwelling PWD had a broad range of varying unmet needs. These findings emphasize the importance of a comprehensive needs assessment that allows the identification of individual needs as the basis for a tailored intervention— such as Dementia Care Management— that can address these needs.
Objectives:
To investigate the effects of using tracking technology on independent outdoor activities and psychological well-being in 3 persons with dementia (PwDs) and their spouses.
Methods:
Three experimental single-case studies with an A1B1A2B2 design. The intervention entailed access to a passive positioning alarm and technical support. Continual daily measures of independent outdoor activities among PwDs' and spouses' worries about these activities were made during all phases.
Results:
Access to a tracking technology consistently increased the independent outdoor activities of 2 PwDs. One of the spouses consistently reported decreased worry during B phases, another's worry decreased only in B2, and the third showed little variability in worrying across all phases.
Conclusion:
Tracking technology may support PwDs to engage in independent outdoor activities and decrease spouses' worries; however, randomized controlled group studies are needed to investigate whether these results can be replicated on a group level.
Electronic tracking through GPS (global positioning system) is being used to monitor and locate people with dementia who are vulnerable to becoming lost. Through a review of the literature and an original study, this article examined ethical issues associated with use in a domestic setting. The qualitative study consisted of in-depth interviews with 10 carers who were using electronic tracking. The study explored the values, beliefs and contextual factors that motivated carers to use electronic tracking. It examined the extent of involvement of the person with dementia in decision-making and it explored the various ethical dilemmas encountered by carers when introducing the tracking system. As an issue that emerged from the interviews, specific attention was paid to exploring covert usage. From the study findings, recommendations have been made for research and practice about the use of electronic tracking in dementia care.
Alzheimer disease (AD) is the most common cause of dementia in the elderly. Clinicopathological studies support the presence of a long preclinical phase of the disease, with the initial deposition of AD pathology estimated to begin approximately 10-15 years prior to the onset of clinical symptoms. The hallmark clinical phenotype of AD is a gradual and progressive decline in two or more cognitive domains, most commonly involving episodic memory and executive functions, that is sufficient to cause social or occupational impairment. Current diagnostic criteria can accurately identify AD in the majority of cases. As disease-modifying therapies are being developed, there is growing interest in the identification of individuals in the earliest symptomatic, as well as presymptomatic, stages of disease, because it is in this population that such therapies may have the greatest chance of success. The use of informant-based methods to establish cognitive and functional decline of an individual from previously attained levels of performance best allows for the identification of individuals in the very mildest stages of cognitive impairment.
Problems with out-of-home mobility are among the more common behavioral disturbances in dementia. Today people with dementia can be aided by easily accessible assistive technologies, such as tracking devices using Global Positioning Systems (GPS). Attitudes toward these technologies are still inconclusive and their use with people with dementia raises ethical concerns. The lack of ethical consensus on the use of GPS for people with dementia underlines the need for clearer policies and practical guidelines.
Here we summarize qualitative and quantitative findings from a larger research project on the ethical aspects of using GPS for tracking people with dementia.
The findings are formulated in a list of recommendations for policy-makers as well as for professional and family caregivers. Among other points, the recommendations indicate that the preferences and best interests of the people with dementia should be central to the difficult decisions required in dementia care. Further, no-one should be coerced into using tracking technology and, where possible, people with dementia must be involved in the decision-making and their consent sought.
The decision whether, when and how to use GPS for tracking people with dementia should be made at the time of diagnosis jointly by the person with dementia, his/her family and professional caregivers. This decision should be made in formal structured meetings facilitated by a professional team.
Caregivers and clinicians may be confronted with the dilemma whether to allow people in early stages of dementia to go outside independently with the risk of getting lost, or to limit their autonomy and mobility. Newly available technology may offer a solution. This pilot study is focused on the feasibility, acceptability, and effectiveness of a three-month use of Global Positioning System (GPS) by care receivers and caregivers.
Numbers and percentages of participants with positive responses to self-report questions were calculated. Differences between the pre- and post-test scores of role-overload and worry were tested with paired t-tests and effect-sizes were calculated.
Of the 33 dyads of care receivers and caregivers, 28 remained in the study (dropout rate 15%). The majority of the caregivers was able to use the technology and integrate the use into their daily routines and would recommend the use of GPS. Almost half of the participants with dementia experienced more freedom and were less worried when they were outside unaccompanied, a quarter mentioned that they were more outside independently and a fifth that they had less conflicts with their caregiver after three months. Caregivers showed a trend to feel less worried, especially caregivers who could reach their relative using the telephone connection. No changes in caregivers' feelings of role-overload were found.
The GPS device used in this study seems to be promising for people in early stages of dementia and their informal caregivers. A next step is to carry out a randomized controlled trial.
To identify what patient and carer characteristics influence transition into residential care for people with dementia.
Longitudinal study of a cohort of people with dementia and their carers in contact with old age psychiatric services in south London.
100 people with dementia and their main family carer were recruited. At six month follow up 22 were in residential care, 63 in the community, 8 had died, and for 7 there were missing data. Between six and 12 months, 7 of the 63 in the community went into residential care, 4 died, and 12 were lost to follow up. The most striking finding is the 20-fold protective effect of having a co-resident carer (odds ratio 0.05, 95% confidence intervals 0.01 to 0.42, p=0.006). Higher ratings of behavioural problems in the person with dementia were also statistically significantly associated with transition into residential care as was the psychological domain of quality of life of the carer.
These findings powerfully illustrate the pivotal role carried out by carers of people with dementia; interventions directly targeted at helping them to maintain this role would be supported by these data. These data also suggest that strategies directed at improving carer quality of life and at the resolution of behavioural disorder in the person with dementia may also have particular value.
In this study, we explore the idea of digital technologies as truth-bearers in health care and argue that devices like SenseCam, which facilitate reflection and memory recall, have a potentially vital role in healthcare situations when questions of veracity are at stake (e.g., when best interest decisions are being made). We discuss the role of digital technologies as truth-bearers in the context of nursing people with dementia, as this is one area of health care in which the topic of truth-telling has been hotly debated. People with dementia have been excluded from research studies and decisions that affect their lives because they are not regarded as truth-bearers—that is, as being capable of giving truthful accounts of their experiences. Also, considerable research has focused on the ethics of lying to and deceiving people with dementia. Given their increasing prominence in healthcare settings, there has been surprisingly little discussion of what role digital technologies might play in relation to these questions of truth and deception. Drawing on theories from science and technology studies (STS), we explore their possible future role in some of the truth-making processes of health care. In particular, we discuss the potential value of constraints on use of SenseCam to support the accounts of people with dementia as part of their care.
In this work we present a user-centered development process for a GPS-based monitoring system to be used in dementia care. Our research covers a full design process including a qualitative-empirical pre-study, the prototyping process and the investigation of long-term appropriation processes of the stable prototypes in three different practice environments. Specifically, we deal with the problem of 'wandering' by persons suffering from late-phase dementia. Although GPS tracking is not a novel technological objective, the usage of those systems in dementia care remains very low. The paper therefore takes a socio-technical stance on development and appropriation of GPS technology in dementia care and assesses the practical and ideological issues surrounding care to understand why. We additionally provide design research in two different settings, familial and institutional care, and report on the design of a GPS-based tracking system reflecting these considerations. What comes to the fore is the need for ICT to reflect complex organizational, ideological and practical issues that form part of a moral universe where sensitivity is crucial.
The aging population is a major concern of human society in the 21st century. Elders who suffer physical or cognitive impairments often have difficulties in navigational tasks and remembering landmarks. As such, disorientation (i.e., getting lost) becomes common for people with dementia in unfamiliar or even in familiar environments. In order to provide appropriate real-time assistive services to these elders, such as reminders and alerts, we propose a disorientation detection method that detects outliers in one’s GPS trajectories. In particular, we first model an individual’s movement trajectories as a graph based on her historical GPS traces. We then identify outlying trajectories that have a defined wandering or deviating pattern as potential instances of disorientation. We develop a method called iBDD that is able to detect two categories of outlying trajectories in a uniform framework in real-time. Using ten individuals’ real-world GPS datasets, we demonstrate that iBDD can achieve 95% detection rate of disorientation with less than 3% of false positives, based on properly chosen parameters.
Using GPS Technologies with People with Dementia
- R Bartlett
- P Brannelly
- Topo
Electronic tracking for people with dementia: an exploratory study of the ethical issues experienced by carers in making decisions about usage
- P Eb White
- Montgomery