Alzheimer disease and related dementias (ADRD) affect approximately 7 million Americans aged 65 years and older, projected to reach 13.8 million by 2050 [1,2]. While antiamyloid therapies represent a significant advance as disease-modifying treatments, their clinical impact and accessibility remain subjects of ongoing debate; thus, prevention continues to focus on managing chronic conditions, particularly hypertension, which contributes to cerebrovascular disease, mixed pathology, and potential acceleration of cognitive decline [3-6]. Hypertension serves both as a vascular risk factor for ADRD development and as a highly prevalent comorbidity, with 83% of patients with ADRD experiencing hypertension [7]. Midlife hypertension shows consistent associations with later cognitive impairment and dementia [4,8].

Family care partners provide the majority of care for persons living with ADRD, yet they typically lack formal training in managing complex health needs such as hypertension [9,10]. This gap is particularly concerning because hypertension management encompasses multiple demanding tasks: medication administration, dietary oversight, exercise encouragement, and blood pressure (BP) monitoring, all requiring knowledge and skills that care partners may not possess.

Nearly half of caregivers providing complex care, regardless of care recipient condition, worry about making mistakes, suggesting low self-efficacy [10]. Research demonstrates that low self-efficacy when managing complex tasks, such as hypertension regimens, is associated with adverse caregiver health outcomes, including depression [11]. Behavioral and psychological symptoms of dementia (BPSD), such as refusal of care, can interfere with care delivery and exacerbate caregiver burden [12-14]. These patterns are consistent with predictions from the stress and coping model [15,16], which posits that caregiver outcomes depend on the dynamic interplay between primary stressors (care demands), secondary stressors (role strain, competing responsibilities), appraisal processes (perceived burden and self-efficacy), and coping resources (social support, problem-solving strategies). Pearlin et al [16] adapted this framework specifically for dementia caregiving, emphasizing how chronic care demands can cascade into secondary stress proliferation, affecting caregiver health and well-being. Within this framework, managing hypertension in ADRD represents a significant primary stressor, one that, when compounded by low caregiver self-efficacy and BPSD, may contribute to the broader pattern of caregiver health decline documented in the literature.

Within this framework, managing hypertension in ADRD represents a significant primary stressor. Nearly half of caregivers providing complex care, regardless of care recipient condition, worry about making mistakes, suggesting low self-efficacy [10]. According to the stress and coping model, low self-efficacy when providing complex care, such as hypertension management, among ADRD caregivers contributes to adverse caregiver health outcomes, such as depression [15]. BPSD, such as refusal of care, can interfere with care delivery and exacerbate caregiver burden [11,12,17].

Care partners performing health management tasks report reduced social participation [13], while those with greater social support experience lower burden [14,18]. Online support communities provide caregivers with accessible platforms for social support, including information seeking, emotional support, and shared decision-making [19-21]. A meta-analysis showed positive impacts of internet-based group support on caregiver social support and self-efficacy [22]. Specifically, this meta-analysis synthesized findings from internet-based group support programs—structured, moderated online interventions designed to deliver peer connection, psychoeducation, and coping skills to dementia care partners via videoconferencing or asynchronous message boards—and found improvements in perceived social support, self-efficacy, and reductions in burden across studies. A scoping review of online support forums further identified ALZConnected [23]—the forum examined in this study—as one of the largest and most active peer-to-peer support communities for dementia care partners, with users exchanging practical advice, emotional support, and shared coping strategies asynchronously [24]. Despite these benefits, peer advice exchanged in unmoderated or lightly moderated forums may include medically inaccurate information, highlighting the need for nurses to understand what care partners encounter and discuss in these spaces.

The psychosocial burdens described above do not occur in isolation from physical health. A growing body of evidence demonstrates that the chronic stress of ADRD caregiving has direct cardiovascular consequences. Older adults who provide care to a spouse or family member with dementia have significantly elevated rates of hypertension compared with noncaregiving peers [25,26]. Longitudinal studies indicate that caregiving stress accelerates the development of hypertension and increases the risk of incident cardiovascular disease, even after adjusting for age and baseline health status [16,26]. Two intersecting pathways explain this elevated risk. First, caregivers may develop hypertension de novo as a physiological response to chronic stress, through sustained activation of the hypothalamic-pituitary-adrenal axis and sympathetic nervous system. Second, caregivers who had pre-existing hypertension often experience worsening BP control as caregiving demands displace time and energy for their own health behaviors, including medication adherence, dietary management, and medical appointments [25]. Despite this dual burden—managing their care recipient’s hypertension while their own BP goes unmanaged—caregiver cardiovascular health is rarely addressed in clinical encounters focused on the person with ADRD. Nurses are well positioned to bridge this gap, yet they need a clearer understanding of what care partners experience in managing hypertension across the dyad to design effective, targeted interventions.

To our knowledge, no study has analyzed online community health data to explore the dual challenges of providing hypertension management to persons living with ADRD while managing caregivers’ own hypertension-related health needs. This study examined 2 interconnected aspects: (1) caregivers’ perceptions and challenges in managing hypertension for individuals with ADRD and hypertension and (2) caregivers’ own hypertension management challenges contributing to their chronic disease burden. Findings will inform nursing interventions supporting caregiver-patient dyads.

This exploratory qualitative study used reflexive thematic analysis, following the Braun and Clarke (2006) 6-phase framework [27] to explore ADRD caregivers’ experiences with hypertension management. This inductive approach allowed themes to emerge from the data rather than imposing pre-existing theoretical categories.

Data were extracted from ALZConnected [23], a moderated online community platform established by the Alzheimer’s Association. The forum provides message boards where care partners and persons across the ADRD continuum—including those with mild cognitive impairment and established dementia—discuss various topics related to dementia care. This forum represents the heterogeneity of ADRD subtypes rather than reflecting a particular disease experience. While users must register to post content, all posts are publicly accessible without authentication. At the time of data extraction, 11,092 registered users contributed to the forum, with 94% (n=10,427) self-identifying as family caregivers (n=7,543, 68% adult children; n=1,331, 12% partners/spouses; n=776, 7% other relatives; n=776, 7% grandchildren/siblings);2% (n=222) as professional caregivers; and <1% (n=111) as persons with dementia; and 3% (n=333) did not specify a role.

Posts were extracted via web scraping between May 21 and 28, 2019. We used the search terms “hypertension” OR “ blood pressure” to identify potentially relevant posts, yielding an initial set of 1357 results. Posts were subsequently reviewed to confirm that each referenced both a care recipient with ADRD and the management of hypertension or blood pressure; posts discussing only one of these topics were excluded. From this filtered dataset, we systematically analyzed posts until reaching data saturation at 300 posts.

This study was determined to be exempt from full ethics review by the institutional review board at the University of Texas Health Science Center at Houston (HSC20200784N), as it used deidentified, publicly available online forum data. All forum posts are publicly accessible without authentication, and usernames are pseudonyms; no personally identifiable information was collected or retained.

Analysis followed a systematic 6-phase process:

Each post could be assigned multiple codes reflecting different dimensions of hypertension management experience. Final themes were organized hierarchically with primary themes and constituent subcodes (Table 1).

Through reflexive thematic analysis of 300 posts from the ALZConnected online community forum, we identified 7 major themes reflecting the multifaceted nature of hypertension management in persons with ADRD. These themes captured both care partners’ experiences of managing their care recipients’ hypertension and their own hypertension-related challenges. Table 1 presents the themes, their constituent codes, and frequency distributions. In the narrative that follows, codes within each theme are discussed according to three criteria: (1) frequency—codes appearing in a greater number of posts are given priority to reflect the breadth of care partner experience, (2) prominence—codes that were most central to the theme’s conceptual meaning receive fuller treatment regardless of raw count, and (3) richness of illustrative quotations—codes supported by particularly vivid or representative posts are highlighted to preserve the depth of care partner voice. Where codes were closely related in content or addressed the same underlying experience, they were analytically subordinated under a higher-order code and discussed together to avoid redundancy; this is noted explicitly within each theme narrative below.

This small but notable theme captured instances of forum users providing medical advice or recommendations to other caregivers, often without identifying professional credentials or citing evidence sources. One code comprised this theme: Peer Medical Advice (n=9).

Caregivers offered opinions on medication efficacy, treatment decisions, and care strategies based on personal experiences:

This theme revealed caregivers’ own hypertension experiences, often attributed to caregiving stress. One code comprised this theme: Caregivers With Hypertension (n=25).

Caregivers disclosed developing hypertension or experiencing BP elevations they directly linked to caregiving demands:

This quote exemplifies the bidirectional perceived health impact of caregiving: care partners not only managed their care recipients’ hypertension but also attributed the development of hypertension themselves as a manifestation of chronic stress. The psychosomatic framing (“literally getting sick myself”) reflected caregivers’ understanding of stress-health connections. Few care partners discussed self-care strategies, suggesting limited attention to their own health needs relative to care recipient needs.

This qualitative analysis of 300 posts from the ALZConnected forum revealed that informal care partners of persons with ADRD managing comorbid hypertension navigate multifaceted challenges spanning clinical decision-making, behavioral symptom management, and health care system coordination—often developing hypertension themselves as a consequence of caregiving. These findings illuminate the complex intersection of dementia caregiving and chronic disease management, highlighting both the clinical challenges care partners face and the dual role of online forums as sources of peer support and potential misinformation. Importantly, these findings should be interpreted with attention to the population they most likely represent: caregivers who are digitally engaged, motivated to seek peer support, and comfortable sharing health-related experiences in online communities. This profile suggests a relatively activated, help-seeking subset of the broader caregiving population—one that may have higher health literacy, greater social connectedness, or more access to resources than caregivers who do not engage with online forums. Clinicians and researchers should consider how these characteristics may shape the themes identified and whether caregivers who are less digitally engaged or more socially isolated face additional or distinct challenges not captured in this dataset.

The findings from this analysis reflect the profound daily burdens described in existing caregiving literature while offering additional context about how those burdens manifest specifically in the management of hypertension. Posts in the forum frequently depicted care partners as primary decision-makers for complex, chronic disease management—roles for which many felt underprepared. The co-occurrence of ADRD and hypertension created particularly layered challenges, as cognitive and behavioral symptoms of dementia often complicated adherence to hypertension regimens. That some care partners also reported developing hypertension themselves further illustrates how the caregiving role can blur the boundary between caregiver and care recipient, with implications for how clinicians conceptualize and address the health of the caregiving dyad.

ADRD caregiving places heavy emotional and practical demands on family members. Care partners often spend more than 150 hours per month helping with difficult cognitive and behavioral changes [28]. Caregiving can cause long-term physical and psychological strain and create extra stress in multiple life domains, such as work and family relationships, which may lead to health issues, including hypertension [29]. Research demonstrates that caregiving stress increases the risk of developing hypertension and heart disease [25]. Caregivers experiencing high levels of stress frequently neglect their own health-promoting behaviors and self-care. Studies showed that caregiving duties, lack of energy, and breakdown of social networks lead caregivers to defer their own care [16,26]. The posts analyzed in this study suggest that some care partners may manage both their loved ones’ BP and their own, resulting in ongoing health challenges for both.

Major interrelated clinical challenges emerged from the analysis.

The theme of Pharmacotherapy revealed patterns of autonomous decision-making, with care partners independently modifying or discontinuing medications without consulting health care providers. For example, care partners described making unilateral decisions about BP medications. Although care partners value their loved one’s autonomy in medication management, transitions to care partners taking over medication responsibilities often occur after care partners observe medication errors [30]. Care partners in the online forum frequently reported making decisions about medication changes while facing challenges related to managing multiple medications and complex dosage regimens [31]. These accounts align with research showing that caregivers assisting with medication management are often untrained, underresourced, and unsupported, even though caregivers of persons living with ADRD are often required to manage multiple simultaneous medications and complex regimens [32]. Care partner forum comments suggest that the autonomous decision-making described likely results from several factors: distrust related to perceived overmedication, concerns about certain medications and possible drug interactions, limited understanding of drug effects, and a lack of caregiver-focused medication education during clinical encounters. These findings suggest that nurses may be well positioned to address these concerns by providing caregiver education about medication management, including how to communicate concerns about overmedication with health care providers to avoid risky medication changes.

The theme of Patient Health Care Implementation Strategies revealed that care partners in this sample described extensive and often uncompensated coordination work—arranging specialist appointments, navigating medicolegal decisions, managing home care transitions, and monitoring BP without clear clinical guidance on when readings warranted intervention. These findings align with a growing literature documenting that family care partners frequently assume quasi-clinical roles for which they receive little preparation or support [9,10]. The gap between what care partners were asked to do—conduct and interpret home BP monitoring, coordinate multidisciplinary care teams—and the guidance they received during clinical encounters was a recurring source of frustration and uncertainty. These accounts underscore the need for explicit caregiver education at clinical touchpoints, including clear parameters for when to act on home BP readings and how to navigate specialist referral pathways.

The theme of Comorbid Care Management revealed that care partners consistently described hypertension not as an isolated condition but as one element of a dense cluster of comorbidities, including obesity, sleep apnea, glaucoma, anxiety, and ADRD itself. This framing reflects the clinical reality of older adults with ADRD, who carry an average of 5 or more chronic conditions simultaneously [4]. Notably, care partners in this forum identified ADRD’s cognitive and behavioral features—memory failure, anosognosia, and care resistance—as direct impediments to hypertension self-management by the care recipient. This is an important mechanistic observation: the disease that motivates hypertension management also undermines the patient’s capacity to participate in it. Clinicians should anticipate this dynamic and explicitly shift responsibility and education toward the care partner rather than assuming the person with ADRD can self-manage.

The theme of Managing Behavioral Symptoms revealed that care resistance—rooted in anosognosia or disease progression—emerged as a substantial impediment to routine hypertension management, including medication administration, BP monitoring, and medical appointments. Care partners described developing workarounds such as therapeutic fibbing to achieve cooperation, reflecting the extent to which they absorbed the clinical burden of managing a patient who could not consent to or comprehend their own care. These strategies, while pragmatically effective, raise ethical questions about autonomy and dignity that care partners were navigating without professional guidance. This theme reinforces the value of behavioral symptom training for care partners and highlights a gap in current clinical practice: the management of ADRD-related care resistance is rarely addressed in the context of chronic disease management protocols.

The theme of Caregiver Burden and Self-Care for Hypertension revealed that some care partners shared that they developed high BP or saw their BP rise because of the stress of caregiving, even though this topic only came up in a small number of posts. One caregiver said, “I was literally getting sick myself...my BP went up (now I’m on BP meds).” This quote illustrates how caregiving can affect both the caregiver and the person receiving care. Caregivers often had to handle their loved ones’ high BP while also dealing with their own. These accounts are consistent with research suggesting that caregiving can cause ongoing physical and mental strain, leading to adverse health outcomes, including hypertension [29]. Not many care partners discussed their own health or ways to care for themselves, which may be because they focus more on their loved ones’ needs than on their own, even though many caregivers have high BP. This pattern means that nurses should consider asking caregivers about their own health during appointments with care recipients, including urging care partners to maintain their own medical appointments. Nurses and other health care providers can check for caregiver stress and high BP, discuss health risks, and encourage caregivers to prioritize their own self-care. Health care systems might consider developing programs that assist care partners in managing both the daily responsibilities of caregiving and the associated health effects, such as offering stress management, health screenings, and practical support. The Guiding an Improved Dementia Experience (GUIDE) pilot program being offered through Medicare, as well as new billing codes to address the needs of care partners, are important advancements that allow nurses to implement person- and family-centered care to support caregivers [33].

Given these substantial burdens, online support groups have emerged as vital resources where care partners seek social support to buffer against the negative health impacts of caregiving [24]. These online platforms provide accessible spaces for informational, emotional, and peer support among individuals who share similar experiences. Notably, online forums offer care partners safe spaces to disclose experiences that might be stigmatized in offline settings, such as expressions of anger or negative emotions toward the care recipient, with such disclosures typically met with understanding and reciprocal narratives from other group members [34]. According to the stress process model of caregiving, access to social support, such as that from peers, has the potential to improve an individual’s appraisal of a stressor and buffer the impact of caregiving demands [16,35]. The forum analyzed in this study functioned as precisely this type of space, where caregivers disclosed their daily struggles with others navigating similar circumstances.

Due to the heavy demands on caregivers, online support groups have become crucial places to find help and connection [24]. These forums provide caregivers with a way to support one another, especially for those who live far from others or have limited time. Research shows that caregivers with the highest needs are often the most active in these groups [34]. Peer support can help caregivers handle stress and feel less alone [35]. The forum in this study served as a venue where caregivers could discuss their daily challenges with others facing similar issues. By sharing their experiences, such as discussing ways to help loved ones take their medicine or finding comfort in each other’s stories, caregivers received both helpful advice and emotional support that they might not have otherwise. At the same time, some of the information provided on online forums may not be accurate. Nurses could have a role as facilitators within these forums to provide accurate information and debunk potentially harmful advice.

Across all 7 themes, several cross-cutting patterns emerged that reflect broader systemic challenges in dementia caregiving. Care partners consistently reported unmet informational needs—particularly regarding medication management, behavioral symptom interpretation, and care coordination—that were not adequately addressed during clinical encounters. A recurring consequence was autonomous or underinformed decision-making, in which care partners acted independently due to insufficient guidance from health care providers. Fragmented care coordination further compounded these challenges, with care partners frequently navigating multiple specialists and systems without centralized support. Together, these patterns suggest that the needs of care partners managing comorbid hypertension in persons with ADRD extend well beyond the clinical encounter and underscore the value of proactive, family-centered approaches to chronic disease management in this population.

These findings should be viewed in light of several limitations. First, the data come from a single online forum (ALZConnected), so they may not reflect the experiences of all caregivers, especially those who do not use online communities or who use different platforms. Caregivers who post online may differ from those who do not in terms of stress, support-seeking, or health care knowledge. Second, since the forum posts are cross-sectional, we cannot track how caregiving experiences and challenges change over time. Third, limited demographic information about forum users made it impossible to analyze differences by age, gender, relationship to the care recipient, or socioeconomic status. The forum data also lacked race and ethnicity information, limiting generalizability to minoritized communities that may face distinct caregiving burdens and health disparities; future studies should intentionally recruit diverse samples. Additionally, we were unable to verify the specific etiology of care recipients’ dementia (eg, Alzheimer disease vs vascular or mixed pathology) or other clinical details, which may influence caregiving challenges and the relevance of hypertension management. Fourth, geographic data were unavailable, limiting interpretation of findings related to access to care. Fifth, the self-reported, unverified nature of online forum posts introduces self-report and potential reporting bias. Sixth, the search strategy relied exclusively on fully spelled-out terms (“hypertension” and “BP”) and did not include common medical abbreviations such as “hypertension,” “BP,” “systolic blood pressure,” or “diastolic blood pressure.” Caregivers with greater medical familiarity or clinical backgrounds may preferentially use these abbreviations, and potentially relevant posts from more health-literate users may therefore have been excluded from the dataset. This represents an additional source of selection bias that could skew findings toward caregivers with less clinical knowledge, and future studies should test whether abbreviation-based search terms yield meaningfully different or additional posts. Finally, thematic analysis is inherently interpretive; future mixed methods studies linking qualitative themes to clinical or registry data would strengthen validation of these findings. Prospective studies with comprehensive demographic data and registry-based diagnosis verification are needed to address these limitations.

This analysis of online forum posts shows that care partners for people with ADRD and high BP face many challenges, such as handling medications, managing difficult behaviors, working with the health care system, and dealing with their own health. In the current sample, care partners frequently reported making medication-related decisions independently, struggled to differentiate between transient and chronic BP elevations, and sought ways to manage care resistance associated with anosognosia. These findings highlight significant gaps in the training and support available to caregivers. Health care providers and systems should recognize that care partners are essential members of the care team, but they often lack the preparation and support they need.

Future research should investigate ways to address the challenges highlighted here, such as training programs for care partners on medication management, tools to aid in interpreting BP readings, and methods for managing care resistance in individuals with limited awareness of their illness. Long-term studies could help us understand how caregivers’ needs change as dementia progresses. Research on how professional moderators influence online support communities could help identify the most effective ways to support caregivers and prevent the spread of incorrect information. Additional studies are also needed to examine caregivers’ heart health and whether targeted programs can help prevent or manage high BP in caregivers.

By learning from the experiences shared in these online forums, health care providers and systems can better support care partners in their crucial role and attend to their own health needs. Equipping care partners with targeted education, care coordination support, and access to reliable health information represents a meaningful step toward addressing the dual burden documented in this study.