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        Characterizing the symptom of misplacing objects in people with dementia: findings from an online tracking tool
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        Characterizing the symptom of misplacing objects in people with dementia: findings from an online tracking tool
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Abstract

Objectives:

Misplacing objects is often reported as a clinically important symptom in dementia. Here we explored misplacing objects in relation to dementia type and stage in an online sample of individuals with dementia and their caregivers.

Methods:

Participants were recruited from www.dementiaguide.com, a web-based tracker for common dementia symptoms. Users provided information about symptoms that they selected as important for monitoring. We analysed cross-sectional data from respondents who tracked at least three symptoms, which allowed for staging dementia severity.

Results:

Of 2,775 users with three-plus symptoms, 787 (28%) identified misplacing objects for symptom tracking. Misplacing objects was monitored by users across all stages of dementia, but was more prevalent in mild and severe dementia. Three common clinical subtypes of misplacing were investigated: lost & found (forgetting the location of items), hidden away (hiding items so others would not find them), and odd places (putting items in usual spots). Of the 787, 96% targeted lost & found, the most frequent type. Odd places (targeted in 56%) significantly increased with dementia severity (p < 0.001). Misplacing objects was most strongly associated with the symptoms of interaction with strangers (OR 4.60, 95% CI: 3.20-6.62), reading (3.68: 2.86-4.73), shopping (3.55: 2.73-4.61) and travel/vacationing (3.31: 2.54-4.31).

Conclusions:

Misplacing objects was most often selected for tracking in mild and severe stages of dementia. As disease advances, misplacing more often reflects odd placement of objects rather than their simple loss. Misplacing objects may be a clinically important therapeutic target for improving patients’ quality of life and lessening caregiver burden.

Introduction

Online health trackers or health-tracking smartphone applications (apps) can allow greater understanding of the disease experience of people with dementia and those around them. Such technologies enjoy common use: two thirds of American adults monitor at least one health indicator (e.g. diet, weight, physical activity, or symptom) for themselves or others, and one in five use technology for tracking health data (Fox and Duggan, 2013). The percentage of older adults accessing the internet is increasing substantially, especially amongst those with functional limitations (Gell et al., 2015). For diseases like dementia, which can affect many aspects of health and behaviour, easily accessible online tools can offer insight into the lived experience. Compared to the standardized measures typically administered in clinics and surveys, individualized online tools can enhance patient-centred care planning by their focus on symptoms that are most relevant to the individual (Jennings et al., 2017; Kurz et al., 2011; Rockwood, 2010).

Misplacing objects and being unable to retrace their location is held out both as a potentially early indicator of Alzheimer disease (AD) and one that commonly worsens over time (Alzheimer’s Association, 2015). Glasses, keys, cellphones, wallets, television controllers, and canes are among the everyday items commonly lost or misplaced (Boudet et al., 2014). In an earlier AD clinical trial from our group, misplacing objects was reported as a problem in approximately three quarters of the 130 community-dwelling participants with mild to moderate dementia, and almost half of these established treatment goals to manage this problem (Hamilton et al., 2009). Most participants expressed difficulty recalling the location of commonly used items; only a smaller proportion putting items in incorrect or unusual places. The impact of misplacing objects on everyday life is reflected in how frequently people with dementia and their caregivers request aids designed to find lost items (Faucounaua et al., 2009; Lauriks et al., 2007). Recurring difficulty with misplacing objects may also lead to a strain or source of conflict between individuals with dementia and those who provide care for them (Lopes et al., 2016). Nevertheless, the symptom remains under-investigated; little is known about the everyday expression of misplacing objects in the lives of those with dementia and its association with dementia type and stage.

Patient-centred measures allow the identification of symptoms that are most relevant to people with dementia. Web-based tools such as the SymptomGuide™ for dementia (SG), an online inventory of dementia symptoms developed by our group (Rockwood, 2010) and available through www.dementiaguide.com, place the focus on individualized goal setting and monitoring of symptoms that users (chiefly caregivers, but sometimes people living with mild cognitive impairment or with mild dementia) define as important to them. Experience with Goal Attainment Scaling (GAS) (Kiresuk and Sherman, 1968) motivated the development of the SG inventory. This individualized measurement tool has been used as an outcome measure and rehabilitation approach for complex conditions like dementia, in which heterogeneity in symptom presentation is common (Hindle et al., 2018; Khan et al., 2008; Leroi et al., 2014; Rockwood et al., 2002). The SG tool provides online, plain-language descriptions of symptoms frequently experienced by individuals with mild to severe dementia, and can facilitate goal setting and attainment (Rockwood, 2010). Here, we used SG data to explore the common symptom of misplacing objects. Our objectives were: 1) to characterize misplacing objects in relation to dementia type and stage; (2) to evaluate sub-types of misplacing objects in relation to dementia type and stage; and (3) to examine how misplacing objects related to other co-reported SG symptoms.

Methods

Sample and instrument

Participant recruitment and data collection for this cross-sectional study came from www.DementiaGuide.com. The site allows individuals to learn more about the disease and to track related symptoms. The website’s content has been independently evaluated according to the DISCERN instrument and deemed recommendable by health-care professionals (Dillon et al., 2013). Users of the website are chiefly caregivers (e.g. spouses, children, or other care providers). The website was launched in 2006, and we examined data collected between May 2006 and March 2017. In addition to educational information, the DementiaGuide website also contains the SG tool, which allows users to create a profile of symptoms for monitoring troublesome symptoms. The SG symptom library contains 61 symptoms related to dementia and provides approximately a dozen descriptions for each symptom. The symptom is defined on the site as “Misplacing or Losing Objects” and has 14 descriptions (see appendix A1 published as supplementary material attached to the electronic version of this paper). In clinical use, they are commonly grouped into three categories: lost & found (not being able to remember where an item was put down), hidden away (putting items away to prevent people from finding them), and odd places (putting items in odd locations). In addition to a standardized symptom inventory and their corresponding descriptions, users also had the option to enter and/or personalize their own symptoms or descriptions in SG. As only a small number opted to add personalized descriptions for misplacing objects (n = 15), and the majority of these descriptions could be mapped to an existing category of misplacing, these data were not included in analyses.

For every symptom targeted for monitoring, the SG records descriptions, frequency, and rank of importance as reported by the users. The construct validity of SG has been clinically evaluated in relation to the Dependence Scale (Rockwood et al., 2012). For SG users who selected three or more symptoms, the severity of cognitive impairment could be determined using a validated symptom-derived staging algorithm developed using an artificial neural network, and cross-validated against memory clinic assessments (Rockwood et al., 2013). The stages of impairment included mild cognitive impairment (MCI), and mild, moderate, and severe dementia.

Data analysis

Descriptive statistics were used to summarize the data. Student’s t-test and Pearson’s chi-square (χ2) test were executed to test for significant differences between groups for continuous and categorical data, respectively. Odds ratios (OR) and 95% confidence intervals (CI) were determined to test the association between misplacing objects and other symptoms reported by SG users. To guard against spurious associations, we examine only those symptoms that were co-reported for tracking in which the lower-bound 95% CI of the OR was greater than 2.5. The median and interquartile range were reported. All analyses were conducted using the R statistical software (v3.2). Statistical significance was indicated with a p-value < 0.05.

Ethics

The Nova Scotia Health Authority Research Ethics Board granted ethical approval for this study (File # 1020385). The SG users agreed to terms of use and consented for disclosure of their answers for the purpose of advancing dementia research. Respondents were assured that research results would be presented in a manner that would not reveal individual identities or personalized information. The data were also not linked to any other information from any source outside the site, or to other site users.

Results

Sample description

Of the 4,121 SG users, 2,775 completed a symptom profile targeting three or more symptoms, and were included in the analysis. Overall, misplacing objects (n = 787; 28%) was the fourth most common symptom selected for monitoring after memory of recent events (n = 1,162; 42%), repetitive questions (n = 1,040; 37%), and irritability or frustration (n = 917; 33%). Users were asked to rank their symptoms in order of importance. Of the 82% who selected this symptom and provided rankings, misplacing objects was ranked as the most important symptom in 8% and among the top three symptoms in 31% of users. Respondents for whom misplacing objects was targeted were significantly younger than those in whom it was not targeted (p < 0.001; Table 1). Those who targeted misplacing objects also differed with respect to sex (more often women, p = 0.014), highest level of education attained (having more than a high school education, p = 0.022), and living arrangements (more often living at home with help, p = 0.002) (Table 1).

Table 1. Subject characteristics

Misplacing objects in relation to dementia type and stage

Information on the type of dementia was available for 787 SG users (data were missing for 1,988). The frequency with which misplacing objects was reported did not differ significantly between those with AD and those with other dementias (AD:142/467, 30%; Other: 77/320, 24%; χ2 = 3.5, p = 0.06) (Table 1). Misplacing objects was monitored across all stages of impairment/dementia, but was tracked significantly more often in the mild (Mild: 344/1071; 32% vs. Other: 443/1704; 26%; χ2 = 11.8, p = 0.001) and in the severe stages (Severe: 181/430; 42% vs. Other: 606/2345; 26%; χ2 = 46.4, p < 0.001) (Figure 1). The median frequency of misplacing objects was 2 episodes/day (interquartile range 0.7 - 4.0) with no statistical difference across the dementia stages.

Figure 1. Proportion of individuals who targeted misplacing objects (Misplacing Objects+) and individuals who did not (Misplacing Objects−) by stage from Mild Cognitive Impairment (MCI) to severe dementia. Misplacing objects was tracked significantly more often in mild (χ2 = 11.8, p = 0.001) and severe (χ2 = 46.4, p < 0.001) stages of dementia.

Of the 219 users who tracked misplacing objects and also identified a specific cause of dementia, no association was found between any of the misplacing subtypes and dementia type (see appendix B published as supplementary material attached to the electronic version of this paper). For those who targeted misplacing objects, lost & found was the most prevalent across all stages of dementia (96%). Hidden away and odd places were also frequently reported across stages (89% and 56% of those who targeted misplacing, respectively) (Table 2). “Frequently misplaces common items” was the description selected most often to describe misplacing objects. Apart from odd places being targeted more frequently in moderate/severe stages (MCI/mild vs. moderate/severe; p < 0.001), the occurrence of the other misplacing subtypes did not differ significantly based on the dementia stage.

Table 2. Categories of misplacing identified as a target for tracking, by dementia stage (% (n) of patients by stage)

Associated symptoms

Among the 61 dementia symptoms listed in the SG library (see appendix C published as supplementary material attached to the electronic version of this paper), misplacing objects was most strongly associated with difficulties interacting with strangers (OR 4.60, 95% CI: 3.20-6.62), difficulty reading (OR 3.68, 95% CI: 2.86-4.73), problems related to shopping (OR 3.55, 95% CI: 2.73-4.61), and issues with planning and/or participating in travel/vacationing activities (OR 3.31, 95% CI: 2.54-4.31).

Discussion

This study explored the symptom of misplacing objects in people with dementia and their caregivers who used the online SG symptom-tracking tool. Of the 2,775 SG users, 787 (28%) selected misplacing objects for monitoring. This proportion is smaller than that found in the VISTA trial (45/96; 47%), which investigated misplacing objects in people living with mild to moderate AD (Hamilton et al., 2009). This may reflect methodological differences, as VISTA participants established treatment goals using GAS (Kiresuk and Sherman, 1968), whereby trained facilitators assisted patients and caregivers in identifying symptoms that were important to them. Here, SG users independently selected symptoms to monitor without assistance or the formal setting of treatment goals. Consistent with findings from the VISTA study, the present results demonstrate that misplacing objects was more likely to be reported in those of younger age and in women (Hamilton et al., 2009).

Individuals from all stages of dementia tracked misplacing objects, but in general, the misplacing category is more common in mild (344/727; 32%) and in severe (181/249; 42%) dementia. Qualitatively however, the type of misplacing is distinct between the two, with putting objects in odd places becoming more common with severe dementia. In the mild stage, misplacing frequently involved that of common items (326/344; 95%) and did not generally involve putting things away in odd places (77/344; 22%). The prevalence of odd places significantly increased with severity of the disease. Although the presence of misplacing objects has been reported previously in groups with various degrees of cognitive impairment (Garand et al., 2007; Hamilton et al., 2009; Lu and Haase, 2009), to our knowledge no other study has examined the frequency of misplacing objects from MCI to severe dementia within the same sample. The frequency with which misplacing objects was reported did not differ significantly based on dementia type and no association was found between misplacing subtypes and dementia type. As information on the type of dementia was only available for a subsample of SG users and was self-reported, this finding should be interpreted with caution and subject to further research on the nature of the relationship between misplacing and dementia type.

Of the number of people who selected misplacing objects as a symptom to track and ranked their symptoms, misplacing objects placed in the top three about a third of the time. Although not directly measured in our study, this finding suggests that misplacing objects is a burden for persons with dementia and their caregivers. Similar observations have been described in older adults living with a spouse with MCI. There, misplacing or losing items received one of the highest ratings relative to other MCI-related behaviours for its frequency of occurrence and the ensuing distress (Garand et al., 2007). Likewise, misplacing objects was named among the list of troublesome behaviours during open-ended interviews with 11 spouse caregivers of persons with MCI (Lu and Haase, 2009). In the aforementioned VISTA study on misplacing objects in mild to moderate AD, misplacing was reportedly a cause of distress for 24%, conjuring emotions of fear, frustration, anxiety, annoyance, and/or embarrassment (Hamilton et al., 2009). These examples demonstrate the negative impact of misplacing objects on caregivers and people with mild to moderate cognitive impairment, but little has been documented on its manifestation during the later stages of dementia.

Misplacing objects typically involves episodic memory failure, but it is less clear if the issue is predominantly an encoding or recall problem (Hamilton et al., 2009). It is likely that both are implicated, as executive functions like planning and monitoring are impaired in individuals with dementia (Boxer et al., 2003; Possin et al., 2013), and this may particularly impact inappropriate placement of objects. In our team’s previous analysis of the VISTA trial, individuals who reported misplacing as a problem did not possess significant differences in Alzheimer’s Disease Assessment Scale-cognitive and Mini Mental State Examination scores compared with people in whom it was not reported (Hamilton et al., 2009). Several other SG symptoms were strongly associated with misplacing objects, which may provide insight into its underlying pathophysiology. The top four symptoms (e.g. interacting with strangers, reading, shopping, and travel/vacationing) revealed no clear common theme. However, they may be indicative of problems with planning and attention as a result of executive function deficits, thus emphasising the potential usefulness of monitoring real-world activities as a means of understanding underlying pathophysiology (Burgess et al., 2006; Reeve et al., 2017).

Taking advantage of the Internet’s global reach, we were able to easily access a large sample of people with dementia and their caregivers. When it pertains to sensitive topics, the collection of information via an online format may also provide respondents with the sense of greater anonymity and privacy that encourages disclosure. This study builds on our earlier work (Reeve et al., 2017; Rockwood et al., 2012, 2015) in that it demonstrates the potential of an online symptom-tracking tool to be an important resource for users as well as a valuable data source for researchers.

Nevertheless, our study is not without its limitations. First, all data collected was self-reported by the SG user, including information about each subject’s characteristics, diagnosis, and symptoms. Secondly, the SG only tracks symptoms deemed important by the user and does not record a comprehensive list of all symptoms present. Third, the validated staging algorithm requires users to report a minimum of three symptoms, which led to the exclusion of respondents who selected fewer symptoms. Lastly, this was a cross-sectional study analysing only data from first entries that were collected over the span of more than 10 years. During this timeframe, there may have been advances and changes in the care of people with dementia. However, as the content of the SG tool remained unchanged, we believe our analysis remains valid. Understanding whether a delay in onset of misplacing objects might reflect clinically important disease modification after intervention is motivating further inquiries by our group. For individuals who already struggle with misplacing objects, we are interested in learning more about how symptom severity and frequency impact one’s quality of life and caregiver burden.

Increasingly, dementia research places the emphasis on biomarkers, but it is also important to understand symptom expression across dementia type and stage. Greater clarity in this area can inform future interventions designed to target symptoms considered important by patients and caregivers. We demonstrated that the symptom of misplacing objects was monitored in our online tool across all stages of dementia, but most commonly in persons with mild and severe disease. As dementia progressed, misplacing more often reflected odd placement of objects rather than simple loss. Future investigations are required to gauge the clinical meaningfulness of misplacing objects as a target for medical treatments as well as its bearing on patients’ quality of life and caregiver burden.

Conflict of interest

KR is the founder, president, chief science officer, and majority shareholder of DGI Clinical Inc., a company that has contractual agreements with several pharmaceutical companies for individualized outcome measurement and advanced data analytics in Alzheimer disease, Parkinson disease, and other disorders. Data from this study were provided by DGI Clinical Inc. through its SymptomGuide™ website. SEH has a consulting contract with DGI Clinical, and HW was an employee of DGI Clinical, as is JS now.

Description of author’s roles

LM and HW were involved in writing the manuscript and interpreting the results. JS analyzed the data and interpreted results. SEH and KR conceived and designed the study, contributed to interpreting the results, and critically reviewed the manuscript. All authors contributed to the drafting of this manuscript, have given final approval of the submitted manuscript, and are accountable for the work.

Acknowledgments

LM received a fellowship from the Mitacs Elevate program (Ref: IT09427). The Mitacs industrial co-sponsor is DGI Clinical, Halifax, Nova Scotia, Canada. KR receives career support from the Dalhousie Medical Research Foundation as the Kathryn Allen Weldon Professor of Alzheimer Research at Dalhousie University Halifax, Nova Scotia, Canada.

Supplementary material

To view supplementary material for this article, please visit https://doi.org/10.1017/S104161021800220X.

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