Abstract
Background:
Managing medications for Alzheimer’s disease and related dementias is challenging for caregivers. Information about caregivers’ strategies to manage these challenges is needed to inform intervention development.
Objective:
This study aimed to understand caregivers’ medication management experiences by analyzing online community discussions.
Methods:
Posts were extracted from the ALZConnected® Forum using keywords “medication” and “drug” via web scraping. The researchers applied thematic analysis.
Results:
Four major themes emerged: (1) role transition of medication management responsibilities, (2) caregivers’ uncertainty about medication purpose and values, (3) conflicts between the care recipients and caregivers, and (4) difficulty accessing and affording medications.
Conclusions:
The experiences shared on a non-moderated, unstructured online forum indicate that medication management is challenging and overwhelming for caregivers of people living with Alzheimer’s disease and related dementias. Since this is a progressive disease with various stages and changing needs, caregivers’ strategies vary and are often limited by available resources and support. Health care providers should offer training and support for caregivers to navigate the transfer of medication management responsibilities and changing care needs as the disease progresses.
More than 6.2 million Americans aged 65 and older live with Alzheimer’s disease and related dementia (ADRD), and the prevalence is projected to reach 12.7 million by 2025. 1 People living with ADRD are 2.7 times more likely to have 4 or more chronic conditions, such as coronary artery disease (CAD), chronic kidney disease (CKD), and diabetes, than those without ADRD. 1 Due to changes in cognitive functioning, people living with ADRD, on average, have staggeringly low medication adherence rates, ranging from 17% to 42%. 2 Low medication adherence exacerbates chronic comorbidities, hastens cognitive decline, compromises the quality of life, increases the risk of institutionalization, and contributes to the high cost of care to society.2,3 Recognizing the significance of medication management for individuals with ADRD, it is noteworthy that about 54% of caregivers are involved in this responsibility, a rate that escalates to 90% during the later stages of the condition. 4 A combination of cognitive impairment and sensory deficits, including vision and hearing loss, makes it difficult for individuals with ADRD to read medication labels and comprehend dosage instructions. In addition, older adults may struggle with fine motor skills, hindering their ability to open medication containers. These challenges can compound the complexity of medication management, necessitating greater involvement from informal caregivers to ensure the proper and safe administration of medications. 2
Why Is Medication Management So Challenging?
Medication management for people living with ADRD is one of the most challenging parts of caregiving.2,5,6 Individuals with ADRD frequently face a decline in self-awareness regarding their cognitive impairment, which in turn hampers their capacity to manage their medications independently.5-10 The complications posed by these deficits are especially apparent when medication-related tasks are transferred from them to their caregivers, including administering various schedules; monitoring effectiveness, side effects, and symptoms; and updating regimens.8,9,11 Over 50% of caregivers manage more than 5 different prescription medications daily. 12 The complexity of medication routines contributes to caregivers’ burden, stress, and adverse physical health outcomes. 13 The effects of medication regimen complexity are especially apparent when multiple medications need to be taken on different schedules and when transferring medication management responsibilities during care transitions, as this transition necessitates caregivers to adapt quickly, understand new prescriptions, and ensure seamless continuation of medication administration—all while juggling an already demanding caregiving role.5,8-10 In a recent review, various additional responsibilities were identified that caregivers undertake as part of their role in medication management. These include preventing medication errors and managing potential drug interactions, exercising judgment on adjusting medication dosages (withholding, increasing, decreasing, or discontinuing), maintaining medication supplies, facilitating communication with health care professionals, and offering active support. 5 These complexities in medication management underscore the importance of providing caregivers with the necessary knowledge, skills, and abilities to effectively manage medications.
Another significant challenge in managing medication for individuals with ADRD is the transition of medication management responsibilities from the care recipient to the caregiver. This transition is marked by uncertainty, particularly for caregivers who frequently assume this role with minimal preparation or guidance. 14 Medications requiring “as needed” administration, such as pain medications, or regular adjustment, such as insulin, are noted to be particularly challenging to manage. 15 Another source of uncertainty is caregivers not understanding the purpose or benefit of a medication, especially when caregivers observe adverse side effects that might offset other benefits.16,17 This may particularly apply to medications meant to slow the symptom progression of dementia. In a study that also drew upon comments collected from an online caregiver forum, participants described how they were not convinced of ongoing benefits. 18 This could cause caregivers to experiment with modifying medications independently, potentially to the detriment of care recipients’ health and safety. 16 Such changes done without consultation from a health care provider could be deleterious because symptoms would further exacerbate absent medication. 7
The challenges and difficulties informal caregivers face in managing medications for care recipients are somewhat reported in the literature but remain not fully understood. This knowledge is particularly needed to inform how to best support caregivers who manage medications. Only a limited number of studies have investigated the causes and risk factors contributing to suboptimal medication management by caregivers of people living with ADRD.11,14 Twenty-eight percent of caregivers for older adults with any condition report fear of making mistakes while managing medications, and 54% report they learned how to do this task independently. 19 Caregivers are often frustrated in seeking information and support about medication management, 5 reporting lack of access to health professionals,8-10 unclear explanations about treatment and medications, 8 complex and unfamiliar terminologies used by health professionals, 9 and being excluded from decision-making and education during care transitions. 11 The complexity and difficulties of the medication management role are the foremost contributors to caregivers’ stress and burden. 8 There is limited understanding of the specific solutions and strategies caregivers employ to address these challenges. This knowledge gap hampers the ability to develop intervention strategies that address caregivers’ preferences and needs, emphasizing the need for further research in this area. 20
Purpose
This study aimed to explore the medication management experiences of the caregivers of people living with ADRD, focusing on challenges caregivers met and strategies used to overcome barriers. We conducted an analysis of online posts from the ALZConnected® caregiver forum. Utilizing social media as a data source is increasingly acknowledg-ed as an ecologically valid method of data capture. This approach is advantageous because data gathered in this manner may be less influenced by social desirability bias compared with primary data collected solely for research purposes. 21 This method holds particular appeal for investigating the topic of medication adherence. Caregivers might hesitate to admit or may not have the opportunity to share with clinicians and researchers the challenges they face in their daily caregiving responsibilities. Furthermore, given the opportunity to receive peer support in this naturalistic setting, we anticipated that there might be shared strategies to overcome barriers to medication management. Results from this study will inform the development of proper medication management interventions for caregivers of people living with ADRD.
Methods
Setting and Study Population
In this qualitative descriptive study, we collected posts from the ALZConnected® caregivers forum. This online platform was developed by the US Alzheimer’s Association, aiming to establish a supportive and free online community for caregivers impacted by ADRD. The forum provides caregivers a space to share their experiences and seek support from one another. 22 The primary users of the forum are family caregivers, often spouses or children of the care recipients, hence termed informal caregivers. 23 Users can navigate to a discussion board where participants can review all the topics created by the initial poster and the replies and threads of the communication relating to the specific topic, or they can create a new topic on their own. Participants must register to view other participants’ profiles and create new threads. The posts published on the forum are publicly available and accessible. The institutional review board of the University of Texas Health Science Center at San Antonio determined this study as non-human research and did not require approval.
Data Collection
The ALZConnected® CAREGIVERs forum received its first post on December 1, 2011. In May 2019, 32 665 posts, posted from December 1, 2011, to April 30, 2019, were extracted from the forum using keywords “medication” and “drug” via web scraping, an affordable and legal technique used to retrieve publicly available data from a webpage. 24 To protect the privacy of the data, we only collected the data necessary for the analysis of interest and excluded identifiers. 25 We imported all the extracted posts into a password-protected Microsoft Excel® file for preliminary analysis. 23 Two trained qualitative researchers independently reviewed the posts chronologically and verified the validity of the keywords used for data extraction by evaluating the relevance of the first 100 extracted posts. We randomly selected 300 posts for analysis due to the overwhelmingly large quantity of extracted posts that exceeded the researchers’ review capacity. We previously published the procedures in another study. 23
Complete threads of a specific topic, rather than random posts across different topics, were included to ensure that the context of the discussion remained intact. Codes, notes, and comments were documented and discussed to reconcile disagreements and reach a consensus. Code saturation, meaning no new codes emerged, was reached once 105 posts had been coded and analyzed.
Data Analysis
A thematic analysis was applied to analyze forum posts as it provides researchers with a guide to identify, analyze, and systematically report themes. 26 Thematic analysis is a flexible approach to qualitative analysis that can still allow for rich analysis and is widely used to analyze information from web-based, non-facilitated, and unstructured online communities.27-30
The researchers used an abductive approach that combines inductive and deductive approaches to analyze the posts to identify caregiver challenges with medication management and strategies to manage these challenges. An abductive analysis begins with a theoretical framework while allowing for the emergence of new concepts and themes not explicitly included in the theory. 31 Specifically, an abductive analysis is proper when the pre-existing theory is incomplete or does not fully capture the complexity of the phenomenon under study. It allows the researcher to develop a more nuanced and comprehensive understanding of the data by integrating deductive and inductive approaches. 32 The process of abductive analysis involves 3 main steps: observation, pattern recognition, and explanation. In the observation phase, we collected data and identified patterns and themes not explicitly addressed in the findings of pre-existing studies that focused on caregivers’ perspectives on medication management for people living with ADRD.2,33 In the pattern recognition phase, we analyzed the data to determine how these new patterns and themes related to the pre-existing findings.2,33 Finally, in the explanation phase, we developed a new understanding that incorporated both the pre-existing findings and the new patterns and themes that had emerged from the data.
The researchers coded and analyzed all the posts using Quirkos® Software. 34 The authors annotated the first 50 posts with descriptive codes, followed by a consensus of codes between the 2 researchers. The authors compared similarities and differences between discrepant codes and discussed their reasoning and rationale to reach an agreement. A coding framework was developed and applied to code other posts. The authors constantly revisited and modified the coding framework until they reached data saturation. During the process, we regularly consulted with other members of the research team who specialize in ADRD care, caregiving research, and qualitative analysis to contribute to the trustworthiness of the analysis. Next, the descriptive codes were categorized into sub-themes, reviewed, discussed, and agreed upon between 2 researchers and a third qualitative study expert. Finally, sub-themes were categorized and summarized into major themes with extracted highlighted quotes.
Results
Purpose of the Posts
The ALZConnected® Caregivers Forum appeared to function as a community for caregivers. As part of this community environment, caregivers had varied reasons for posting on the forum. The majority of posts were about providing advice and support to one another (56%; n = 59). Caregivers also posted on the forum to share resources (10%; n = 10), share experiences/venting (17%; n = 18), and seek advice/information (17%; n = 18) (see Figure 1).
Purpose of posts.
Themes
Four major themes emerged from the data, including: (1) role transition of medication management responsibilities, (2) caregiver uncertainty about medication purpose and value, (3) conflicts between the care recipient and caregivers, and (4) difficulty accessing and affording medications.
Major theme 1: Role transition of medication management responsibilities
Within the forum, caregivers detailed shifts in the cognitive abilities of the care recipients, significantly affecting the caregivers’ capacity to effectively manage the medications. Care recipients forgot to take medications or took multiple doses. It was not always clear to caregivers when the care recipient could no longer perform this task. Caregivers struggled to understand the level of help care recipients needed to manage medications safely. One caregiver described how it was not until she went on a trip with her mother that she understood how much help she needed to remember to take her medications, saying My mother had a trip . . . and I decided to go with her . . . For the first four days she was confused about where she was. She would forget she had eaten something an hour later or ask for her medications again.
In another example, a caregiver found that the care recipient took multiple medications per day. In this example, the caregiver integrated technology to help their care recipient manage medications. Nevertheless, even in this case, the caregiver learned to step in to prevent the care recipient from hiding delivered medications: “He was taking multiple doses of his meds daily, so I bought an electronic pill dispenser for dementia patients, but I still have to fill it and intercept/hide the med bottles when the pharmacy delivers them."
Distance caregivers may not have adequate information to understand when care recipients need additional support. “It was clear however from an ER visit . . . and by a subsequent medical visit where a new 24-hour aide interjected herself into a discussion of medication, that we could not support my mother adequately long distance.” In this example, it took an acute health event and observation from a care professional for the caregiver to realize the extent of her mother’s care needs.
Major theme 2: Caregiver uncertainty about medication purpose and value
Caregivers also expressed their feelings of uncertainty when trying to manage medications. Many caregivers struggled with knowing if they should still give their care recipients medications because of side effects. Some care recipients had gastrointestinal issues, and some had problems with drowsiness attributed to medications: “I don’t know how many night[s] I should try this dosage before making a change or go ahead and increase the night dose tonight.” Comments suggest that medications that caregivers are asked to modify, rather than those taken at the same dose daily, may pose particular challenges.
Caregivers also expressed concerns about the effectiveness of medications. Specifically, caregivers often wrestled with deciding whether to continue the medications for treating Alzheimer’s and dementia. After a certain amount of time, caregivers posted how they believed medications were not as effective and did not control dementia symptoms as well. One caregiver stated, “I stopped that extra dose now because he has progressed so much and doesn’t know what I’m doing anymore, his anger sessions last only seconds, no short-term memory I’m guessing.”
Major theme 3: Conflicts between the care recipient and caregivers
Besides cognitive challenges that interfered with care recipients’ ability to manage medication, caregivers reported outright refusal to take medications. The most common reason for refusal was because care recipients were in denial about having dementia. Sometimes, caregivers described how the person thought they did not need certain medications or did not trust their caregivers. One poster wrote, “She was on antidepressants and antipsychotic meds for the hallucinations but has since refused to continue taking any medications. My brother is her main caregiver . . . but he is unable to get her to take her medications . . .”
Forum posts also described conflicts between the caregiver and the person with dementia over taking medications. One caregiver described that their parent refused to collaborate over medication management: “Dad is beyond frustrated and said he is no longer going to talk to her [his wife] about meds or doctor appointments—they were topics that brought too much strife.”
Caregivers also described several strategies they used to manage their conflicts with the care recipients’ refusal to take medications. Deceit was one of the most commonly used strategies, such as crushing medications and hiding them in foods: “People have posted that you crush them up and put them into some kind of food that your LO [loved one] likes and they can take the meds that way without knowing they are taking them.” Others posted about asking health care providers to prescribe anti-anxiety medications without telling the person living with dementia.
Major theme 4: Difficulty accessing and affording medications
The last theme describes the challenges caregivers met at a system level that affected their ability to access medications. Often, these challenges were revealed through interactions with other caregivers, who helped their peers understand the difficulty of navigating health systems to access proper medications. Experienced caregivers shared the importance of getting an appointment with a neurologist to get dementia-specific medications or to see a geriatric psychiatrist to get medications for behavior problem management: A geripsych might be best to prescribe because different dementia responds best to different medications, and psychs are the experts in psychoactive medications. [Y]ou will need to work with a neurologist who specializes in the dementias or a geriatric psychiatrist. The medications used for hallucinations are under the provision of specialists. The dosage of those medications must be titrated up over a period of time (several weeks) and side effects must be watched for. Our primary MDs are awesome at so much, but they are not on the cutting edge of dementia issues, and that is important to prevent other problem issues from prescriptions that may not be appropriate.
Caregivers emphasized the need for a diagnosis to start medications. Caregivers discussed the importance of knowing what kind of dementia the care recipient had for them to get the proper medications. “If you want to get her prescription medication,” shared one caregiver, “which may or may not be beneficial, she will need a diagnosis.” Even in this example, echoes of caregiver uncertainty about the value of medications are apparent.
Finally, cost and insurance were the other barriers caregivers faced in medication management. Caregivers posted about the prohibitive costs of medications and challenges working with insurance constraints. In one example, a poster wrote, “The Drs took my grandma off of her dementia meds about a year ago, but she still on 6 medicines that cost close to $1k a month.”
Discussion
This study set out to understand caregivers’ perspectives and experiences of medication management for people living with ADRD, particularly the challenges caregivers encountered and strategies used to overcome barriers. We conducted an analysis of online posts on an unmoderated and unstructured online forum. This platform is particularly beneficial for studying medication adherence, as caregivers may be reluctant to openly discuss their daily challenges with clinicians and researchers, or they may not have the opportunity to do so. This study proved that caregivers had difficulties transferring medication management responsibilities in the initial onset stage of the disease and were unsure about why and how their care recipients should access and take prescribed medications. In the meantime, caregivers shared their experiences of conflicting with the care recipients; they exchanged strategies to overcome obstacles in managing medications when provided with peer support in this real-life setting.
To the best of our knowledge, this study is the first to explore topics of medication management shared on a non-moderated, unstructured online support group primarily for family caregivers of people living with ADRD in the United States. The information shared on the online forum reveals that managing medications for this population could be challenging and affected by multiple factors, varying from individual to system levels. This study also highlights that caregivers use online forums as an outlet to express their burdens and distress, share personal experiences, exchange valuable information or advice, and seek emotional support. These patterns align with consistent findings reported in previous studies.25-27 The ALZConnected® Forum is primarily designed as an online platform for informal caregivers of people living with ADRD to share resources and experiences in their caregiving journey. Our findings are consistent with those from studies that used similar data sources19,21,28 but uniquely related to the ADRD population, illustrating how caregivers struggle with caregiving tasks and attempt to adapt their roles while balancing and managing their own lives.
Transfer of medication management responsibilities is one component of a significant role transition between caregivers and care recipients. Similar to findings in the present study, prior research describes how caregivers struggle to determine when the care recipients require assistance with this task.15,16 When care recipients do not live with caregivers, it may take a while for caregivers to piece together signs that their care recipients can no longer safely manage their medications, especially when the care recipient is not self-aware that they need more help or do not wish to ask for help managing medications.6,11 In our study, one forum poster described how it was not until she was traveling with her mother that she realized her mother could no longer safely manage her medications on her own. Caregivers must also judge the evolving level of support required by care recipients, ranging from checking that the medications were taken to administering them. 5
Besides realizing the need to help care recipients manage medications, caregivers often must negotiate the transfer of responsibilities with care recipients during early and middle disease stages, who may oppose actions perceived to limit their autonomy.6,11 Consistent with previous findings, we found examples of disagreements between caregivers and care recipients about the treatments and how the medication should be managed, such as the spousal care partner who stopped communicating with his wife about medication management. Though this strategy may help the couple avoid conflict, it could also undermine the identification of strategies to assure medication adherence. In a review study, Gillespie et al 5 segmented the changeable relationship between people living with ADRD and caregivers that undermined medication management into sharing of responsibilities for various medication-related tasks, variation in the level of involvement of caregivers, sharing of tasks between more than 1 caregiver, and variation in the level of medication management needed by individuals with ADRD. In our study, we observed caregivers grappling with these various intricate relationships. For instance, a daughter noticed her mother skipping medications and took on partial responsibility for managing them. In addition, children faced challenges coordinating with their siblings in managing their mother’s medications. The behavioral changes of the care recipients toward the late stage of ADRD extensively contributed to the challenges of effective medication management in terms of triggering unfavorable relationships between the dyads, exhausting solutions for behavior management, and raising caregiving burden and stress.
The care recipient’s refusal to take medications further strained the care relationship. How caregivers perceive their caregiving role has implications for handling medication refusal. In some cases, care recipients may refuse medications because they do not perceive them as beneficial; caregivers may work with the care recipient and a provider to identify a medication regimen that meets care goals. 15 Alternatively, care recipients at later stages of the disease may not understand the importance of medications or the consequences of not taking them, such that, caregivers may need to overtly take over medication responsibilities, signaling a role transition to that of a “protector” or care manager. 35 In the present study, the covert administration of medications, such as by crushing medications into food, represented this shift. While we did not find evidence that caregivers reported uneasiness with using deception to administer medications, covert administration requires careful consideration not to undermine the goals of person-centered and relational care.15,36
Besides individual intervention, this study shed light on the need for system-level change. In this study, caregivers always found it challenging to access resources efficiently when they had questions about medications. Some caregivers have built a long-term relationship with a pharmacist from a local pharmacy, and the pharmacists knew the care recipients’ medication regimens and their health conditions. Other qualitative studies also suggested that building a team with people living with ADRD, caregivers, pharmacists, nurses, and physicians with a long-term relationship will be extremely helpful for supporting caregivers in navigating the appropriate resources and support, especially when the caregivers themselves take multiple medications, the care recipients’ medication prescriptions are complex and constantly change,6,7,9-11 and the medications are costly. 37
Implications
Medication management is a complex task that necessitates a specific skill set. It is an ongoing journey that requires a deep understanding of both medications and the diseases involved, such as ADRD and any co-occurring chronic conditions.6,11 Alzheimer’s disease and related dementia is a progressive disease characterized by constant changes in cognitive functions and behaviors, following a specific pattern. Consequently, strategies that caregivers use, which may be effective at one point may not be suitable for later stages. In this study, we found that caregivers often need to adapt and renegotiate their approach to medication management as the care recipient’s cognition changes. This represents a significant challenge that caregivers must navigate. Previous research has highlighted how health care providers can support caregivers in this transition by educating both the caregivers and the care recipient about the importance of certain medications. 12 In addition, providers can assist in finding solutions to medication challenges that are acceptable, such as simplifying regimens or utilizing pre-filled medication packs.6,11 Another important aspect is helping caregivers determine when covert medication administration is beneficial in achieving care goals and ensuring safety. 7
Based on these findings, we echo prior researchers calling for additional training to help caregivers manage medications.15,16 Training could address multiple sources of caregiver uncertainty, such as by building caregiver skills in assessing the need for additional caregiver support, managing refusal to take medications, and communicating with the health care provider about medications. 38 In addition to training, caregivers may also benefit from one-on-one or peer support to reassure them when mistakes occur, a major source of worry for caregivers who manage medications for the care recipient. 39 Nurses are well-positioned and regularly assess the care recipient’s ability to manage medications. Previous recommendations include assessing medication management skills, so that, providers and family caregivers can better understand the level of support needed. 6
Another implication is that the challenges and strategies caregivers expressed in their posts could identify unique family dynamics and relationships between dyads. For example, some caregivers expressed frustration about balancing caregiving tasks and work and complained that no other siblings could back them up. Prior research suggested ethnic minority family caregivers indicated a lack of information and access to support to inform their medication management role exacerbated their burden and stress, especially in some cases with low English proficiency. 7 Future studies should systematically examine the impact of racial and ethnic group influences on medication management between caregivers and people living with ADRD as a dyad, especially ethnic minority families, to account for the internal dynamics and develop family caregiving support and services. Nurse-led education and training on medication management for ethnic minority dyads must account for the complex multi-level barriers that influence caregivers’ stress and ability to manage medications.
Limitations
This study has several limitations. First, we collected the data from a non-facilitated, unstructured online support forum; therefore, the discussion topics are diverse. However, the data that emerged from this type of non-facilitated, unstructured, asynchronous online peer support group, without a moderator or interview guide, are considered “organic,” meaning the participants are eager to share what they deem helpful or challenging.21,23 Furthermore, the online caregiver support forum is subject to selection bias, primarily attracting caregivers who are technologically proficient, have internet access, and seek online support. Language barriers, cultural differences, privacy concerns, and geographical limitations further limit the inclusivity of the forum, making it important to consider the digital divide and various constraints that exist in our findings. 40 Another limitation is that demographic information about the participants is unavailable. Although findings from qualitative data are not meant to be generalizable, without knowing information, such as posters’ age, gender, race and ethnicity, relationship to the care recipients, and other social determinants, it is possible that findings do not reflect the breadth of challenges caregivers experience with medication management. There may be sociocultural and environmental influences on health disparities and minority health outcomes across different groups that future studies should address.
Conclusion
The shared experiences on this non-moderated, unstructured peer support forum show that medication management is challenging and burdensome for caregivers of people living with ADRD. Alzheimer’s disease and related dementia, a progressive neurodegenerative condition, manifests diverse features and necessitates evolving care strategies to address the varying needs of individuals across different stages of the disease. Caregiver strategies vary individually and are considerably limited by the availability of resources and support. It is imperative that education and intervention programs on medication management for informal caregivers account for the complex factors that influence caregivers’ resources, support, and ability to manage medications. Fu-rthermore, interventions to improve medication management by ADRD caregivers should explore individualized strategies to meet their changing needs along the disease progression.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research reported in this publication was supported by the University of Texas Health Science Center at San Antonio School of Nursing Center on Smart and Connected Health Technologies.
Ethical Conduct of Research
This research was exempt from review by the internal review board, as it did not involve human subjects.
