Tools to evaluate medication management for caregivers of people living with dementia: A systematic review

Abstract Background Caregivers often undertake medication management for people living with dementia without formal training. There is a need to evaluate caregiver medication management practices for people living with dementia to identify and address the key issues that contribute to caregiver burden. Objectives This study aimed to identify and summarize approaches that evaluate medication management for caregivers of people living with dementia and appraise caregiver's involvement in aspects of medication management. Search Strategy A systematic search was undertaken in five databases: Medline, Embase, PsycINFO, Scopus and International Pharmaceutical Abstracts. Studies written in English that contained tools and surveys that evaluated aspects of medication management for caregivers of PWD were included. Results A total of 10 studies were included. Medication selection was assessed in six studies, supply and monitoring/review was captured in seven studies, with administration assessed in nine studies. Caregivers were commonly involved in decision‐making for medication changes (77.1%–86.8%) and in the ordering (55.9%–86.0%) and collection (87.0%–92.4%) of medications. Reported caregiver involvement in medication administration showed a wide range (44%–94.7%) between the studies. Challenges in administration were commonly related to polypharmacy and dosage regimen complexity. Conclusions Current tools capture specific aspects of medication management, with medication administration the most evaluated aspect of medication management. Future research is needed to develop a tool to holistically evaluate the complexities of medication management for caregivers of people living with dementia to minimize adverse events at transitions of care. Public Contribution From the authors' previous research, caregivers highlighted the need to address key issues in medication management for people living with dementia.

givers selecting medications for the person living with dementia, supplying medications by obtaining new supplies of medications, preparing and administering medications and monitoring for adverse effects for the person living with dementia. 9,10 The complexities of managing medications increase with the progression of their care recipient's dementia diagnosis 11 and at transitions of care, with communication failures and delayed, poorly timed discharges contributing to preventable medication-related problems. [12][13][14] Medication changes are not always communicated to people living with dementia, their caregivers or their primary healthcare providers. 15 This can lead to inappropriate medication management, which is particularly common during transitions of care. 15 Tailored medication management guidance provided to caregivers of persons with dementia is important to reduce the risks of medicationrelated problems and adverse events, including hospitalization. 6,10 A priority of the World Health Organization in their global patient safety challenge 'Medication Without Harm' is vulnerable patients, which includes people living with dementia. 16 Given that medication management is a key role for caregivers of people with dementia, it is important to evaluate the medication management aspects that caregivers are involved in, to identify the support and education that caregivers need to ensure that medications are managed safely. 17 At present, there is limited research on available tools and surveys that measure caregiver medication management for people living with dementia. The aim of this systematic review is to identify and summarize approaches that evaluate medication management in caregivers of people living with dementia and appraise caregivers' involvement in aspects of medication management.

| METHODS
This systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA). 18 The review has not been registered, nor was a protocol prepared, as per PRISMA guidelines.

| Search strategy
A systematic search of five electronic databases for relevant articles was undertaken on Medline, Embase, PsycINFO, Scopus and International Pharmaceutical Abstracts from inception to April 2020.
Identification of approaches used to evaluate medication management for caregivers of people living with dementia was the primary outcome. The following search terms, and their variations, were split into three themes for database searching: (dementia* OR alzheimer* OR frontotemporal lobar degeneration or lewy body) AND (caregiv* or care giver* or carer* or caretaker* or family involvement) AND ([medicat* OR drug* OR prescription* OR medical*] adj4 [manag* OR treat* OR administ* OR adher* OR monitor* OR knowledge* OR storage OR appointment* OR therap* OR use*]). The same keywords were used throughout all database searches, with minor variations using the relevant database thesaurus-MeSH or Emtree terms.
Following deduplication, articles were screened for relevance by title and abstract by two reviewers (Melissa Gench and Aili Langford). The remaining full-text articles were assessed for eligibility independently by two reviewers (Melissa Gench and Aili Langford). Where there was disagreement between reviewers, discrepancies were resolved by a third reviewer (Melissa Gench).

| Eligibility criteria
Studies were included if they were (1) original studies of quantitative design, (2) studies of tools and/or surveys identifying any aspect of medication management for caregivers of people living with dementia, (3) informal caregivers of people living with dementia, (4) conducted in any setting, (5) written in English and (6) in any time frame. For the purpose of this review, caregivers were defined as informal providers of care, such as familial relatives or friends, who are primarily responsible for caring for the person with dementia, and of which medication management comprises an aspect of caregiving. 19 Medication management was defined as the ways in which caregivers select, supply, administer and monitor (including review) medications to provide optimal health outcomes for the person with dementia. 9,10 Studies were excluded if caregivers were not of people living with dementia, were formal, paid caregivers (e.g., nurses) or if tools and surveys did not evaluate caregiver medication management. | 1571 management; and (6) key findings in relation to caregiver medication management. A content analysis of the tools and surveys within the included studies was undertaken to extract reliability and validity information. 20 3 | RESULTS

| Search results and study characteristics
In total, 8843 studies were identified through the database search.
After duplicate removal, 4704 studies were screened for eligibility based on article title and abstracts. The process resulted in 116 studies for full-text screening. Inclusion and exclusion criteria were applied, which led to 10 studies for inclusion in this review (see Figure 1). All studies were conducted in the United States of America 5,21-29 ; however, one study was a multicountry study. 22 All studies were conducted in a community setting, 5,[21][22][23][24][25][26][27][28][29] with the addition of one study that was also conducted in a long-term care setting. 22 Study designs included cross-sectional studies (n = 8), unblinded randomized-controlled trials (n = 1) and mixed-methods studies (n = 1), with sample size ranging from 53 to 1369 participants (Table 1). Only 1 22 out of the 10 included studies reported the stage of dementia diagnosis for their participants. 5,21-29 Medication selection was an aspect of medication management reported in 6 out of 10 studies, 21,23,26-29 supply 5,21,23,24,26-28 and monitoring/ review 5,22,23,[25][26][27]29 was captured in seven studies and administration was reported in nine studies. 5,[21][22][23][24][25][26][27][28] 21,23,[25][26][27]29 The Hassles scale was used to measure caregiver burden in all aspects of medication management. 21 The Caregiver Confidence in Sign/Symptom Management scale appraised caregiver confidence in selecting, administering, monitoring and reviewing medications for people living with dementia. 25 The Medication Risk Questionnaire identified challenges in medication administration, supply and review. 23

| Medication administration
Medication administration was an aspect of medication management that was reported in 9 out of 10 studies 5,21-28 ( -Caregivers administered on average seven prescription medications (mean = 6.82, SD = 3.9) and three over-thecounter medications (mean = 3.0, SD = 1.9) -CGs managed four or more changes to medications within the last year by physicians (44%) FCMAHS: More than 70% directly administered medications, organized medications (e.g., into pill planners) (87%)

Review:
MRQ8: Designed to identify older adults high risk for experiencing medication-related problems, hence those who may benefit from medication evaluation (Continues) Author  (Table 1). 5,[22][23][24][25][26][27]29 The Hassles scale contained a subscale that evaluated caregiver burden in medication review. 27 These items included being comfortable in speaking with physicians about medications for the person with dementia, knowing if the medication is having the desired effect and adverse effects to monitor for. 27 The Caregiver Confidence in Sign/Symptom Management scale used a subscale to evaluate the confidence and responsiveness of the caregiver, with an item relating to caregivers' decision-making for when to contact medical providers regarding general medication management for the person with dementia. 25,29 The Medication Risk Questionnaire can identify individuals living with dementia who are high risk for developing medication-related problems, 23 such as individuals exposed to polypharmacy (more than five prescription medications) and those taking high-risk medications for medication-related problems. 23 Kurz et al. 22 reported that more than 90% of caregivers believed that it was very important within their role to discuss the condition and treatment of the person with dementia with the physician.
Caregivers were risk-averse to administering medications that can produce adverse effects (79%-96%), believing that better control of dementia symptoms (94%-100%) and having less bothersome side effects (84%-100%) were also important issues in medication management. 22 Two studies observed that caregivers with greater medical training were more confident in evaluating and managing side effects for people with dementia in community settings, and knowing when and how to review medications with medical providers. 25,29 Lingler et al. 24 found that interventions that educated caregivers on medication side effect monitoring and administration routes improved caregiver knowledge (p < .01).

| Medication selection
A total of 6 out of 10 studies identified selecting medications as an aspect of caregiver medication management, using the Medication Risk Questionnaire and Hassles scale tools, with one study also having used a survey 21,23,[26][27][28][29] (Table 1). The Hassles scale and a survey specifically evaluated all aspects of medication selectioninitiating and ceasing medicines, or changing doses. 26 The Caregiver Confidence in Sign/Symptom Management scale was unique by evaluating caregivers' decision-making and confidence to select medicines for the person with dementia, depending on the development of cognitive and medication-related symptoms. 25,29 Most caregivers were involved in decision-making regarding medication changes for the person with dementia (77.1%-86.8%). 21 Hassles Caregiver Strain Index, r = .44, p = .01). 27 Caregiver confidence improved after an educational intervention on medication-related problems, evaluating vital observations and managing medications for pain (mean caregiver confidence at baseline (3.8 ± 0.6 SD), 3 months (4.1 ± 0.7, p < .001) and 6 months (4.2 ± 0.5, p < .001) ( Table 1). 29 Increased caregiver confidence was negatively correlated with a small decrease in caregiver burden over time, but this was not statistically significant (mean caregiver burden at baseline (22.8 ± 7.2), 3 months (22.4 ± 8.6, p = .6) and 6 months (21.9 ± 7.8, p = .6) ( Table 1). 29

| Medication supply
Supply was a subcomponent of medication management in seven studies 5,21,23,24,[26][27][28] (Table 1). The Medication Risk Questionnaire identified caregiver management of medication supply with an item relating to whether caregivers manage prescriptions prescribed by multiple physicians (60%). 23 The Hassles scale and Medication Complexity Index evaluated the implications of complexity in supply due to obtaining new prescriptions and managing multiple prescriptions on caregiver burden in medication management. 27 Interestingly, the Medication Risk Questionnaire was the only tool to explore medication supply with an item that asked if prescriptions are procured from multiple pharmacies (26%) and whether an individual besides caregivers is responsible for medication collection and delivery to home (42%). 23 It is plausible that having a third party collect medications from multiple pharmacies can be a risk factor for medication-related problems, due to miscommunication or lack of continuity of care from pharmacist to caregiver/person with dementia.
Five studies reported that the majority of caregivers were involved in ordering medications (55.9%-86.0%). 5,23,24,26,28 Four of these studies, including Noureldin and Plake, found that most caregivers were responsible for collecting medications from pharmacies (87%-92.4%). 21,23,24,26,28 Three studies identified that caregiver management of medication supply involved managing prescription supplies, often from multiple physicians (60%). 5,23,24 Increasing complexity in medication supply increased caregiver burden in medication management. 27 Lingler et al. 24 found that education on medication management resulted in a statistically significant improvement in caregivers' ability to identify prescription repeats, collect and obtain new prescriptions (p < .01). Our findings suggest that up to 95% of caregivers reported that they were involved in medication administration. 5,21-28 Administration of medications was highlighted as a challenging aspect for caregivers due to concerns in managing multiple medications whilst avoiding medication errors that might compromise the safety of the person with dementia. 5,30 However, very few tools and surveys evaluated factors that contribute to complexities in medication management. The Medication Risk Questionnaire was one of the more unique tools as it evaluated administration challenges due to polypharmacy and more complex dosing regimens. 23 This was demonstrated by 70% of caregivers administering medications to people living with dementia taking five or more prescription medications, and 40% of caregivers administering 12 or more doses daily. 23 Managing polypharmacy is a common issue contributing to administration burden in caregivers. 31 Qualitative studies highlight that other factors contribute to complexities in medication management, such as limited medication information provided at transitions of care, limited caregiver involvement in shared decision-making and feeling unsupported. 15,32-34 Therefore, a tool that evaluates these factors is needed to identify areas for improvement to reduce medication-related adverse effects in people living with dementia. 35 The Hassles scale evaluated errors in administration with items on the degree of caregiver burden in relation to caregivers admitting to physicians when they have made medication errors and knowing how to safely administer medication. 27 The Medication Deficiency

| Reliability and validity of tools and surveys
Checklist identified that the most common errors in medication administration by caregivers are forgetting to administer medication, losing/dropping medication or administering the wrong dose. 24 However, the included studies did not explore the reasons for administration errors. Vision and dexterity issues and decline in cognitive function may contribute to medication errors. 19,[36][37][38] Other factors include polypharmacy, lack of medical training and feeling overwhelmed from medication burden. 32,34 Horne et al. 1 reported that caregivers lacked awareness of medication aids that could improve adherence, and interventions that raised awareness were seen as beneficial in reducing medication management burden. Therefore, a tool that assesses caregiver knowledge and utilization of medication aids is needed to identify solutions to improve medication management. This will inform understanding of the guidance that caregivers require from healthcare professionals, such as providing advice on using reminders for medication administration times or the use of medication aids to overcome dexterity issues for caregivers.
A recent systematic review found that multidisciplinary interventions that extend beyond hospital discharge to guide caregivers in medication management for individuals with dementia are GENCH ET AL.

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important. 34 However, none of the included studies have explored using different primary healthcare professionals as sources of medication information. Caregivers often seek medication information from physicians, but limited appointment timeframes 32 or lack of involvement in decisions and discussions have been cited as barriers that contribute to increased caregiver burden. 19 used the tools and surveys as a subcomponent of an analysis into an intervention, whereas for some, it was the study focus. Consequently, these studies did not report all findings from the tool, instead focusing on certain aspects of the tool and its respective results. Two studies-Levy and Steffen 23 and Schmidt et al. 26 -both used the Medication Risk Questionnaire; however, the latter study did not present the questionnaire results, as it was a subcomponent tool to evaluate the validity and reliability of another screening tool, which was the study focus. 26 This created challenges in comparing and supporting results on aspects of medication management between different studies using the same tools. It also impaired the ability to ascertain the data needed to appraise caregiver involvement in medication management.

| CONCLUSIONS
This systematic review identified and summarized tools to evaluate medication management for caregivers of people living with dementia, and appraised caregiver involvement in aspects of medication management. The findings suggest that there is limited knowledge on the medication management provided by caregivers of people living with dementia across countries, with most studies identified in this review being conducted in the United States of America. Of the available tools identified in this review, the Hassles scale appears to be best suited to evaluate the medication management provided by caregivers of people living with dementia. Administration emerged as the most appraised aspect of medication management in the literature, with challenges in administration contributing to caregiver burden. It is evident that a tool is needed to holistically evaluate medication management and its complexities for caregivers of people living with dementia, which can be used across different settings and at transitions of care. This will aid in the development of strategies to address these complexities in medication management, which will help to ensure that people living with dementia receive safe and effective care. In so doing, it will help uphold optimal health outcomes and quality of life, standardize medication management across transitions of care and decrease caregiver burden in medication management.