ABSTRACT
Aims
Understanding the holistic experience of patients with early Alzheimer’s disease (AD) and their care partners is important to identify unmet needs. This study aimed to describe and compare patient-care partner dyad experiences and perspectives in early AD.
Patients & Methods
Experiences of patients and their care partners (dyads) were explored using a survey, qualitative interviews, and social media listening. Each dyad completed a 25-minute quantitative online survey exploring their perceptions of symptoms, comorbidity impact, financial burden, and preferred treatment characteristics. Data were analyzed descriptively and comparatively.
Results
150 patient-care partner dyads completed the survey. Patients and care partners frequently reported memory-related issues and cognitive challenges (68% and 77%, respectively); approximately 19% of responses were discordant, with patients often under-reporting symptoms. Managing comorbidities worsened overall well-being of patients (41%) and care partners (40%). Treatments slowing AD progression (patients: 99%; care partners: 96%) and improving symptoms (patients: 95%; care partners: 93%) were important. Approximately 26% of respondents experienced significant negative financial impacts.
Conclusions
Patients and care partners perceived early AD impacts similarly whereas some symptoms were perceived differently. There was a shared desire for disease-modifying treatments. Limited financial impact may reflect preserved functionality and limited use of disease-modifying treatments.
KEYWORDS: Early Alzheimer’s disease, care partner, patient and care partner dyads, Alzheimer’s disease symptoms, treatment preference, financial burden
Plain Language Summary
Why does it matter? In the United States (US), about 6.7 million people aged 65 and older are living with Alzheimer’s disease (AD). This number is expected to double by 2060. Patients in the early stages of AD, including those with mild cognitive impairment (MCI, or mild memory problems) due to AD and mild AD dementia, can usually manage daily tasks but experience some trouble with thinking and remembering (cognitive and functional impairment). Once these symptoms worsen over time, patients often need more help from a care partner, for example a family member. It is therefore important to understand the views and experiences of both the patients and their care partners in the early stages of AD.
How does it work? We ran 25-minute online surveys with patients with early AD and their care partners living in the US. The survey questions covered symptoms of early AD, impact on finances, the burden of having coexisting medical conditions and views on the most important features of treatment for AD. Responses from patients and their care partners were compared.
What did we find? There were differences in the symptoms of early AD reported by patients and their care partners. Having to manage coexisting medical conditions negatively impacted the overall well-being of both patients and care partners. Significant negative impacts on financial well-being were observed in less than two of every five patients or care partners. Both patients and care partners valued treatments that would stop or slow down disease progression and reduce AD symptoms.
1. Introduction
Alzheimer’s disease (AD) accounts for 60–80% of dementia cases globally, and represents a serious global health concern [1]. In the United States (US), 6.7 million people aged 65 years and older are living with dementia due to AD, representing about one in nine individuals in that age group (10.8%). This number is predicted to double by 2060 to 13.8 million if no interventions effectively prevent or slow AD progression [1].
AD is characterized by progressive and irreversible neurodegeneration that is associated with cognitive, functional, and behavioral impairment. The pathological hallmarks of AD include both the presence of extraneuronal amyloid-β (Aβ) plaques and intraneuronal neurofibrillary tangles (NFTs) [2]. The disease progression, known as the AD continuum, is divided into three broad phases: preclinical AD, mild cognitive impairment (MCI) due to AD, and dementia due to AD, with the latter phase being further divided into mild, moderate and severe AD dementia [1,3].
In the early phases of the disease, patients are able to perform daily activities and tend to experience subtle cognitive and functional impairment. However, such impairments progress over time to impact behavior and daily functioning, ultimately leading to the patient being reliant on care partners and institutions [1,2,4–6]. Support for day-to-day tasks is often provided by family members who act as care partners [1]. In the US, an estimated 18 billion hours of care to patients with AD or other dementias were provided by over 11 million family members and other unpaid caregivers in 2022. This represents a yearly economic burden of $339.5 billion in unpaid dementia caregiving [1]. Furthermore, providing care has a negative impact on care partners’ mental health, including increased emotional stress, anxiety and depression, and on their physical health and finances [1,7–15].
Historically, treatments for AD, such as donepezil, memantine and galantamine, improve cognitive and behavioral symptoms without addressing the underlying brain changes that cause the symptoms [1,3,16]. However, recent drug developments have shifted to target the underlying causes of the disease (including clearance of Aβ plaques) to slow disease progression. This has led to the approval of disease-modifying therapies, including lecanemab and donanemab, for patients with early AD (defined as MCI due to AD or mild AD dementia) [16–19].
Care partners play an important role in AD care, including assisting the patient in daily living activities and medication management, and in evaluating the benefits of new disease-modifying therapies. In recent clinical trials for early AD, the care partner has been recruited as a study partner to be involved in decision making and reporting of treatment outcomes [20,21]. As newer treatments require earlier recognition of the disease, and care partners play an essential role in supporting patients’ treatment decisions, it is important to understand the holistic patient-care partner perspective of early AD and identify unmet needs in this patient population.
Given the background and limited research that has focused on the overall subjective experiences of patient and care partner dyads, especially regarding non-clinical factors, there is a clear need to explore and compare the experiences of patient-care partner dyads in early AD. This includes examining symptom recognition, preferred treatment characteristics, and comorbidities and economic burden that they may experience. Our study aimed to explore these aspects. The results of this study will enhance understanding of this under-researched patient population and their care partners while also providing valuable insights for healthcare providers to promote more holistic and patient-centered care.
2. Methods
This study used a patient-centered mixed-methods approach to develop an online quantitative survey conducted with patients and their care partners. The survey content was informed by insights from previously conducted social media listening activities and semi-structured qualitative interviews. Social media listening involved analyzing online discussions among patients and their care partners about early AD. The qualitative interviews were performed with patients and their care partners to explore their emotions, behaviors and interactions with the healthcare system throughout the early AD care pathway (methods and results for social media listening and interviews are summarized in the Supplemental Material). The quantitative survey was then conducted with patients and their care partners to assess the patient symptom experience, emotional and economic burden of early AD, and gain perspectives on future treatments. The responses of patients and care partners within a dyad were compared to provide a comprehensive understanding of their perceptions of the disease. Ethical approval for this study was obtained from the Western-Copernicus Group® Institutional Review Board (IRB) on 3 October 2023 (IRB study number: 1361366).
2.1. Data collection
The quantitative online survey consisted of a cross-sectional 25-minute survey completed by patients with early AD and their care partners between 10 July 2024 and 16 August 2024.
Adults aged ≥ 55 years with a confirmed diagnosis of early AD by their referring physician (i.e., patients with MCI due to AD or mild AD dementia) within the past two years were recruited via a specialist recruitment agency in the US. Patients were recruited through physician referrals and provided consent to take part in the study. Adults aged ≥ 18 years who self-identified as care partners of these patients were recruited by the same agency. Professional caregivers were excluded from participation. All participants provided written informed consent prior to participation in the study.
Based on learnings from the previously conducted social media listening and the qualitative interviews, questions were formulated for the patient and care partner surveys. These questions used patient and care partner-friendly language to explore the behavioral and cognitive impact that patients had experienced since their early AD diagnosis, and to understand how perceptions of these impacts might be different between patients and care partners within each dyad. The comorbidity burden of early AD was also assessed using the same methods, as were the preferred AD treatment characteristics of patients and care partners and the effect of early AD on their financial well-being.
2.2. Data analysis
Data were analyzed descriptively and comparatively using Microsoft Excel, SPSS and R. Statistical pairing tests were conducted to determine differences in reporting between patients and care partners. A paired t-test was applied to assess whether there were significant changes in continuous outcomes measured for each dyad. A Wilcoxon signed-rank test was used to analyze differences in outcomes that violated assumptions of normality. Due to the paired nature of patients and care partners, we also assessed the discordance in their responses. We defined discordance as occurring when patients and care partners provided different answers to the same question. For example, if a patient answered “yes” but the care partner answered “no,” or if a patient answered “strongly agree” while the care partner answered “neutral,” we considered this a discordance between patients and care partners. If the patient responded with “agree” and the care partner responded with “strongly agree,” we did not categorize this as a discordance due to the similar level of agreement. For multiple choice questions asking about symptoms or impacts experienced, an unselected response option was assumed to mean no (i.e., that the patient is not experiencing the symptom/impact).
3. Results
3.1. Sample demographics and characteristics
In total, 300 participants (n = 150 patients and n = 150 care partners) completed the survey. Table 1 provides a summary of the demographic and clinical characteristics of the participants.
Table 1.
Patient and care partner demographic and clinical characteristics.
| Patients | Care partners | |
|---|---|---|
| (n = 150) | (n = 150) | |
| Sex | ||
| Male | 67 (44.7%) | 37 (24.7%) |
| Female | 83 (55.3%) | 111 (74.0%) |
| Prefer not to say | — | 2 (1.3%) |
| Average age, years (SD) | 70.8 (9.1) | 52.6 (15.3) |
| Racea | ||
| White | 97 (64.7%) | 97 (64.7%) |
| Black or African-American | 38 (25.3%) | 35 (23.3%) |
| Asian/American-Indian or Alaskan-Native/Native Hawaiian or Other Pacific Islander | 4 (2.7%) | 5 (3.3%) |
| Other | 9 (6.0%) | 8 (5.3%) |
| Prefer not to say | 3 (2.0%) | 5 (3.3%) |
| Highest level of educationb | ||
| Some high school/High school or equivalent | 74 (49.3%) | 57 (38.0%) |
| Associate’s degree | 35 (23.3%) | 40 (26.7%) |
| Bachelor’s/Graduate/Post-graduate degree | 29 (19.3%) | 48 (32.0%) |
| Other | 12 (8.0%) | 5 (3.3%) |
| Current employment statusb | ||
| Employed – full-time (40 hours per week) | 28 (18.7%) | 78 (52.0%) |
| Employed – part-time | 25 (16.7%) | 24 (16.0%) |
| Student | 1 (0.7%) | 2 (1.3%) |
| Unemployed/retired (due to AD) | 7 (4.7%) | 3 (2.0%) |
| Unemployed/retired (not due to AD) | 81 (54.0%) | 25 (16.7%) |
| Otherc | 8 (5.3%) | 18 (12.0%) |
| Individual personal annual income | ||
| Less than $25,000 | 22 (14.7%) | 8 (5.3%) |
| $25,000 to $49,999 | 39 (26.0%) | 31 (20.7%) |
| $50,000 to $74,999 | 30 (20.0%) | 32 (21.3%) |
| $75,000 to $99,999 | 18 (12.0%) | 28 (18.7%) |
| $100,000 or more | 14 (9.3%) | 29 (19.3%) |
| Not applicable (not currently employed) | 27 (18.0%) | 22 (14.7%) |
| Care partner relationship to patient | ||
| Child | N/A | 59 (39.3%) |
| Partner/spouse | N/A | 49 (32.7%) |
| Grandchild | N/A | 3 (2.0%) |
| Friend | N/A | 12 (8.0%) |
| Other close relative | N/A | 27 (18.0%) |
| Diagnosed comorbiditiesd | ||
| High blood pressure (hypertension) | 81 (54.0%) | 84 (56.0%) |
| Depression | 46 (30.7%) | 44 (29.3%) |
| Anxiety | 44 (29.3%) | 47 (31.3%) |
| Diabetes (type II) | 34 (22.7%) | 34 (22.7%) |
| Heart disease | 27 (18.0%) | 29 (19.3%) |
| Obesity (BMI ≥ 30 kg/m2)e | 23 (15.3%) | 22 (14.7%) |
| Cancer (breast, n = 3; neuroendocrine, n = 1) | 4 (2.7%) | 4 (2.7%) |
| Nonalcoholic fatty liver disease | 4 (2.7%) | 5 (3.3%) |
| Cerebral amyloid angiopathy | 1 (0.7%) | 1 (0.7%) |
| Diabetes (type I) | 1 (0.7%) | 1 (0.7%) |
| Number of diagnosed comorbiditiesd | ||
| No comorbidities | 38 (25.3%) | 39 (26.0%) |
| 1 comorbidity | 25 (16.7%) | 22 (14.7%) |
| 2 comorbidities | 44 (29.3%) | 45 (30.0%) |
| 3 comorbidities | 24 (16.0%) | 24 (16.0%) |
| ≥ 3 comorbidities | 43 (28.7%) | 44 (29.3%) |
| Patient treatment for ADd,f | ||
| Donepezil | 23 (15.3%) | 23 (15.3%) |
| Memantine | 15 (10.0%) | 16 (10.7%) |
| Galantamine | 13 (8.7%) | 13 (8.7%) |
| Rivastigmine | 2 (1.3%) | 2 (1.3%) |
| Lecanemab | 1 (0.7%) | 1 (0.7%) |
| Donanemab | 1 (0.7%) | 1 (0.7%) |
| Vitamins/supplements | 23 (15.3%) | 18 (12.0%) |
| Other | 1 (0.7%) | 0 (0%) |
| Not currently receiving treatment for AD | 78 (52.0%) | 81 (54.0%) |
Abbreviations: AD, Alzheimer’s disease; BMI, body mass index; N/A, not applicable; SD, standard deviation.
aThe sum of the number of patients equals 151 because one patient selected two options (black and white); bPercentages do not add up to 100% due to rounding; cOther includes homemakers; dThe number/rates are for the patient as reported by either the patients or care partner; eObesity was self-reported, and does not include overweight; fPercentages do not add up to 100% since respondents selected all that apply.
3.1.1. Patients
The mean age of the surveyed patients was 70.8 years (SD: 9.1 years), with more than half being female (55.3%) and of White race (64.7%), and 19.3% of patients receiving a university level education. Most patients were unemployed/retired (58.7%), among which only 4.7% were unemployed/retired due to AD and 54.0% due to other reasons. The remaining patients were employed either full-time (18.7%) or part-time (16.7%), students (0.7%) or specified other (5.3%).1 The majority of patients (74.7%) experienced at least one other comorbidity, and nearly 30% of patients reported to have ≥ 3 comorbidities. The most common comorbidities were hypertension (54.0%), depression (30.7%), anxiety (29.3%), type II diabetes (22.7%), heart disease (18.0%) and obesity (15.3%). Patients reported taking a variety of early AD treatments, including symptom-modifying treatments (donepezil, memantine, galantamine and rivastigmine; taken by 35.3% of patients in total) and monoclonal antibodies (lecanemab and donanemab, each taken by 0.7% of patients). However, more than 50% of patients reported they were not currently receiving pharmacological treatment for their early AD.
3.1.2. Care partners
Care partners were on average younger than patients, but with a greater variance in age (52.6 years, SD: 15.3 years). The majority of care partners were female (74.0%) and of White race (64.7%), and 32.0% received university level education. More than half of care partners were employed, either full-time (52.0%) or part-time (16.0%); 12.0% indicated their employment as ’other’ and 1.3% were students. Only 2.0% of care partners were unemployed/retired due to being a care partner for someone with AD, while 16.7% were unemployed/retired for reasons other than AD. The majority of care partners were either children of the patient (39.3%) or partners/spouses (32.7%). The patient comorbidities reported by the care partner were similar to those reported by the patient. Nearly 30% of care partners reported patients to have ≥ 3 comorbidities, with the most common being hypertension (56.0%), anxiety (31.3%), depression (29.3%), type II diabetes (22.7%), heart disease (19.3%) and obesity (14.7%). The current treatments taken for AD reported by the care partner were also in line with those reported by the patient.
3.2. Behavioral and cognitive impacts of early AD
3.2.1. Most frequently reported impacts of patients and care partners
Patients and their care partners were asked to report on the behavioral and cognitive impacts experienced by the patients since their early AD diagnosis (Figure 1). Overall, memory-related issues and cognitive challenges were frequently reported by both patients and care partners. These challenges included misplacing/losing objects (reported by 68% and 77% of patients and care partners, respectively), difficulty concentrating (35% and 43%), forgetting appointments/commitments (31% and 43%), and trouble sleeping (34% and 36%).
Figure 1.
Changes or difficulties experienced by the patient since early AD diagnosis as reported by the patient and their care partner.
Abbreviation: AD, Alzheimer’s disease.
aThe discordance for dyads reflects the percentage of responses for which patients and care partners within a dyad reported different answers. The response of each dyad was assessed and assigned a score equal to 0 when both patient and care partner gave the same answer (based on both selecting or not selecting the presence of the symptom [non-selection by both implied agreement on symptom absence]) and score equal to 1 when the answers were different. The percentage discordance was calculated by adding up all the scores and dividing them by the total number of dyads. Discordance based only on the presence of symptoms is presented in the Supplemental Material, Supplemental Figure S1 and Supplemental Table S1; bThis question was only for the care partner.
*Paired t-test: < 0.05.
3.2.2. Least frequently reported impacts of patients and care partners
The least frequently reported impacts were daily functioning difficulties, such as loss of driving privileges/driver’s license (reported by 9% and 7% of patients and care partners, respectively) and difficulties in completing everyday tasks (15% and 21%), and behavioral and psychological changes, including anhedonia (decreased interest in social activities and hobbies; 20% and 12%) (Figure 1).
3.2.3. Differences in patient and care partner responses
The biggest differences between dyads’ responses were memory-related symptoms. Care partners were more likely than patients to report patient’s forgetting appointments/commitments (12%; p < 0.05) and misplacing/losing belongings (9%; p < 0.05). Patients were more likely than care partners to report experiencing a mental block (9%; p < 0.05) as well as anhedonia (8%; p < 0.05). The symptoms with the smallest differences in response (indicating patient and care partner agreement) were mental health functionality-related symptoms, including trouble sleeping at night/sleep disturbance (2%) and loss of driving privileges/driver’s license (2%), as well as feeling confused or disoriented (3%) (Figure 1; more detailed results in Supplemental Material, Supplemental Table S1).
3.2.4. Discordance in responses within dyads
On average, 19% of patient-care partner dyad responses were observed to be discordant. Difficulty making decisions (28%), forgetting appointments/commitments (27%) and difficulty concentrating (25%) were the most discordant responses. Among the responses that showed discordant answers from patients and care partners, patients generally reported fewer symptoms than their care partners. This pattern was consistent across all questions, except for those regarding mental blocks, anhedonia, and loss of driving ability, where care partners were less likely to report these issues compared with patients (Figure 1).
3.3. Comorbidity burden of early AD
Surveyed patients commonly experienced comorbidities (Table 1). Both patients and care partners were asked about the impact that managing these comorbidities, alongside early AD, had on the patients’ overall well-being (Figure 2). A similar proportion of patients (41%) and care partners (40%) indicated that managing comorbidities had worsened or significantly worsened the patients’ overall well-being. Within each dyad, more than half of the patients and care partners gave different responses, with a discordance of 55%.
Figure 2.
Impact of managing comorbidities on overall well-being of patients.
aPatients and care partners provided responses on a rating scale from 1–5: 1 = significantly improved; 2 = improved, 3 = no impact, 4 = worsened, 5 = significantly worsened. The discordance for dyads reflects the percentage of responses for which patients and care partners within a dyad provided responses in different ranges of the rating scale: ‘1 and 2’ and ‘4 and 5’ were combined and 3 was unchanged.
Data points < 2% not shown on graph.
3.4. Preferred treatment characteristics
Participants were asked to specify the level of importance of characteristics of future AD treatments. Both patients and care partners rated the ability to stop/slow AD progression and to treat/improve symptoms as the most important future treatment characteristics (Figure 3). A significantly higher proportion of care partners than patients rated the ability to stop/slow AD progression as important or very important (99% vs 96%; p = 0.03; discordance: 4%) and a slightly higher proportion of care partners than patients rated the ability to treat/improve symptoms as important or very important (95% vs 93%; discordance: 7%). Care partners were also slightly more concerned than patients with attributes of a therapy: the risk of side effects (93% vs 89%; discordance: 12%), the route of administration (75% vs 72%; discordance: 27%) and the frequency of treatment (77% vs 73%; discordance: 29%). Furthermore, significantly more care partners than patients rated the ability to treat AD and other comorbidities together as important or very important (86% vs 82%; p = 0.01; discordance: 10%). The same proportion of patients and care partners considered the cost of treatment and travel time required for treatment as important or very important (81% and 65%; discordance: 23% and 38%, respectively).
Figure 3.
Level of importance of future AD treatment attributes.
Abbreviation: AD, Alzheimer’s disease.
aPatients and care partners provided responses on a rating scale from 1–5: 1 = not important; 3 = somewhat important, 5 = very important. The p-values are based on Wilcoxon signed-rank tests calculated using responses based on the 5-point rating scale (details in Supplemental Material, Supplemental Table S2). For ease of representation, displayed results are based on combined ratings rather than the 5-point rating scale: ‘1 and 2’ and ‘4 and 5’ were combined and 3 was unchanged; bThe discordance for dyads reflects the percentage of responses for which patients and care partners within a dyad provided responses in different ranges of the rating scale, according to the described combined ratings.
Data points < 2% not shown on graph.
3.5. Financial burden of early AD
The majority of respondents reported no impact on their financial well-being (63% of patients and 78% of care partners; Figure 4(A)) or ability to work/generate income (74% and 77%, respectively) following early AD diagnosis. However, 36% of patients and 20% of care partners indicated that AD had significantly worsened their financial well-being. Similarly, 26% of patients and 22% of care partners indicated that AD had significantly decreased their ability to work or generate income. The discordance between patients and care partners was 29% for impact of AD on financial well-being, and 27% for ability to work/generate income (Figure 4(A)).
Figure 4.
Financial impact of AD (A) and reasons for financial impact of early AD (B).
Abbreviation: AD, Alzheimer’s disease.
aPatients and care partners provided responses on a rating scale from 1–5. For A: 1 = significantly improved/increased, 2 = improved/increased, 3 = no impact, 4 = worsened/decreased, 5 = significantly worsened/decreased. For B: 1 = no negative impact, 2 = minimal negative impact, 3 = some negative impact, 4 = moderate impact, 5 = significant impact (details in Supplemental Material, Supplemental Table S3). For ease of representation, displayed results are based on combined ratings rather than the 5-point rating scale: ‘1 and 2’ and ‘4 and 5’ were combined and 3 was unchanged. The discordance for dyads reflects the percentage of responses for which patients and care partners within a dyad provided responses in different ranges of the rating scale, according to the described combined ratings.
Data points < 2% not shown on graph.
Patients more commonly reported experiencing a negative financial impact due to the inability to work compared with care partners (18% vs 9%; discordance: 28%), and due to out-of-pocket costs for testing (17% vs 8%; discordance: 37%), doctor’s visits (12% vs 7%; discordance: 33%) and treatment (12% vs 6%; discordance: 30%). Furthermore, patients experienced a greater negative financial impact than care partners due to costs for at-home support (14% vs 11%; discordance: 35%) and for travel to medical appointments (11% vs 7%; discordance: 27%) (Figure 4(B)).
3.6. Additional results
To better understand how the symptoms of early AD affect patients and care partners, we also collected data on the emotional burden and coping strategies related to early AD. These results can be found in the Supplemental Material, Supplemental Tables S4–8.
4. Discussion
This study explored early AD symptom experience, comorbidity, financial burden, and preferred treatment characteristics from the perspectives of patient-care partner dyads. By using a mixed-method approach this study provides a comprehensive view of the burdens faced by patients with early AD and their care partners. To our knowledge, this is the first study to specifically investigate the experiences of patient-care partner dyads during the early stages of AD and record the differences in their responses.
While our findings recapitulate the common symptoms among patients with early AD, our work uniquely documents care partner perceptions of patient symptoms and highlights the discordance in perceptions between patients and their care partners, both of which may adversely impact AD diagnosis rates or delivery of care. Patients generally under-reported their symptoms relative to the perception of care partners. There may be several reasons. Lack of education or awareness regarding early AD symptoms may make it difficult for patients and care partners to distinguish between normal aging and the symptoms of early AD. In addition, there may be psychological factors, such as denial of symptoms or fear of the disease, that also contribute to the disparity in symptom recognition. While not a priority outcome of our study, during our social media listening, we identified an element of anxiety among care partners consistent with the concept that psychological factors may affect symptom reporting by care partners that may not exist in the patients.
Our work contributes to the body of literature documenting differing perceptions, helps quantify the degree to which differences in reporting is occurring, and may help guide strategies to improve early diagnosis rates [22–24]. For example, our data may provide reassurance to the care partner that there is often a mismatch between patient and care partner perception of symptoms. Such reassurance may improve efforts to pursue the evaluation of early symptoms, thereby leading to improved early diagnosis rates and ultimately more effective treatment options.
In addition to patients reporting symptoms less frequently than their care partners, the observed discordance rates between those two groups indicate a common mismatch between dyads. These findings highlight the importance of acknowledging that patients and their care partners may have differing understanding and perspectives regarding the disease. Therefore, our findings reinforce the importance of integrating care partners into early AD management and involving them in clinical trials to enhance the understanding of symptoms and disease progression [1,16–21,25,26].
In line with published literature, our study found that the majority of patients with early AD had multiple comorbidities, including hypertension, diabetes, obesity and depression [27–31]. Our results also align with the current literature suggesting that managing comorbidities can negatively impact patients’ well-being. As new treatment options for AD are likely to continue emerging, patients and their care partners may need to allocate more resources and time to manage both AD and other comorbidities at the same time. As such, the burden of managing AD could increase on top of their existing comorbidities, and exploring strategies to reduce this burden may enhance treatment outcomes and improve quality of life.
With respect to preferred treatment characteristics, patients and care partners favor treatments that stop or slow progression and treat or improve symptoms. These findings are in line with published literature, which identified stopping AD progression as one of the most important treatment outcomes for patients in the early stages of the disease [32,33]. A recent study surveyed patients and care partners about their perspectives on new therapies to delay disease progression [33]. There seemed to be general agreement between patients and care partners that a goal of future therapies should be to slow disease progression, especially in those with early-stage AD. However, care partners of patients with later-stage AD were less optimistic about the benefits of intervention and even expressed concern about potential harm to the dyads, as the morbidity of the disease may outweigh the benefits of treatment [33]. In total, these studies suggest that the care partner should play an important element in the shared decision making that is considered best practice in choosing therapies for AD.
In our study, patients and care partners also expressed a high aversion to side effects and considered the cost of treatment as important. These are relevant findings in light of the current treatment landscape that has seen the recent approvals of disease-modifying treatments for early AD [16–19,25,34,35]. Developing effective interventions that integrate more of these desired characteristics could enhance patient quality of life and improve treatment outcomes. However, because these types of interventions or treatments are often complex, costly, and require innovative methods, the treatment development and implementation may require collaboration among various stakeholders, including government and public policy experts, academic institutions, industry representatives, and patient advocacy groups.
Our results indicate that patients and care partners do not perceive a high financial burden associated with early AD, although there was discordance in this perception with patients reporting a greater negative financial impact than care partners. One possible reason is that patients have preserved functionality at this disease stage, and financial pressures may increase significantly in later stages of AD, rather than in early AD [1,36–38]. In addition, employment rates among dyads in this study were relatively high and the impact of early AD on employment relatively low, which may mitigate the financial burden. Lastly, exposure to early AD-specific prescription treatments was relatively low, with only 3% of patients being treated with newer disease-modifying therapies that are typically more expensive than older symptomatic treatments [17,34,35].
4.1. Strengths and limitations
This study has several strengths. To ensure a patient- and care partner-centered approach, this study followed a multi-phased mixed-methods design involving a quantitative survey which was informed by both insights from social media online discussions of the patient’s and care partner’s experience of early AD, and in-depth qualitative interviews of patients and their care partners about the disease impact. The mixed-methods approach provides a robust study design and ensures that survey questions contain themes that are relevant to patients and care partners [39–41]. Survey participants were recruited via clinician referral to ensure that only patients with a recent clinical diagnosis of early AD were recruited, which increases confidence that the data accurately reflect the early AD population. With the inclusion of the patient-care partner dyads, we were able to track the responses of both patients and care partners and capture a holistic perspective of early AD. This method allowed a comparison between patient and care partner response on the same question, enabling us to evaluate the differences between the patient and care partner perception on the same topic.
There are also limitations that should be acknowledged when interpreting the results. At the time of this study, the newly approved disease-modifying treatments for early AD were not widely accessible and therefore we only included two patients who were on monoclonal antibody therapies in this study. However, our study offers valuable insights and can serve as a benchmark for future research once these treatments become more available. Additionally, the study focused solely on patients and care partners from the US, which may limit the applicability of the results to other regions. The findings may also be affected by recall bias, since participants were asked to reflect on past experiences that may not accurately represent their current situation, as well as by selection bias due to the relatively small sample size. This latter point might also explain why we have not observed a large financial impact; the majority of individuals in the sample were employed at the time of the survey and may have had more access to resources enabling an earlier identification and diagnosis of AD, which might not be reflective of a broader real-world population. Lastly, our findings may be affected by response bias, due to the reliance on patients and care partners’ self-reporting.
5. Conclusion
Our patient-centered mixed-methods study sheds light on the patient and care partner experience of early AD and the complex disease burden. To our knowledge, this is the first study to explore this topic using such an approach. We found that while patients and their care partners similarly perceive the most frequent cognitive and behavioral impacts of early AD, significant differences exist in their symptom perception with patients reporting the presence of symptoms less frequently. We also identified a shared desire among patients and care partners for disease-modifying treatments, and the need to consider the burden to patients and care partners from treating early AD alongside comorbidities. Additionally, we observed a limited impact of early AD on the financial well-being of patients and care partners, which may be a reflection of the preserved functionality and employment status in early AD with relatively low use of more costly treatments for early AD.
The study findings emphasize the significant non-clinical burden faced by patients with early AD, as well as the differences reported between patients and their care partners. These results underscore the need for a more holistic approach to care that involves care partners in the disease management process, allowing for a more complete representation of the true disease experiences and progression. Furthermore, future disease-modifying treatments that effectively improve symptoms of early AD and its comorbidities could better align with the needs and preferences of both patients and their care partners.
Supplementary Material
Acknowledgments
The authors thank Ulrike Jahnke PhD and Sonia Alesso PhD of Clarivate for providing writing and editing assistance in accordance with Good Publication Practice (GPP 2022) guidelines. This assistance was financially supported by Novo Nordisk Inc.
Funding Statement
This work was supported by Novo Nordisk Inc.; no external funding or government grants were received for this research. The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.
Note
Percentages do not add up to 100% due to rounding.
Article highlights
This study explored the views of 150 patients with early Alzheimer’s disease (AD) and their 150 care partners through a 25-minute online survey about symptoms, other health issues, treatment options, and financial burdens.
Both patients and care partners reported similar levels of memory problems, but on average, their answers differed 19% of the time, with patients usually reporting symptoms less commonly than their care partners.
Managing other health conditions alongside early AD impacted the well-being of both patients (41%) and care partners (40%) with about 29% of patients surveyed reporting having three or more other health conditions.
Both patients and care partners agreed that slowing AD progression (99% of patients and 96% of care partners) and improving symptoms (95% of patients and 93% of care partners) were important treatment goals.
Thirty-six percent of patients and 20% of care partners reported significant negative impacts on their financial well-being and the remaining reported limited impacts, possibly due to their ability to function in the early stages of AD and low rate of treatment use.
The discordant responses reflect the different perceptions of early AD management between patients and care partners, emphasizing the need for better communication to understand each other’s experiences and needs.
Author contributions
Lei Lv (Conceptualization; Methodology, Formal analysis, Investigation, Writing – Review & Editing, Visualization, Project administration); Elnara Fazio-Eynullayeva (Conceptualization; Methodology, Investigation, Writing – Review & Editing); Paul Mystkowski (Conceptualization; Methodology, Investigation, Writing – Review & Editing); Caroline McKay (Conceptualization; Methodology, Investigation, Writing – Review & Editing); Tamara Al-Zubeidi (Project administration, Investigation, Writing – review and editing); Jordan Miller (Investigation, Project administration, Writing – Review & Editing); Stephanie McKee (Investigation, Project administration, Writing – Review & Editing); Catherine Bottomley (Investigation, Supervision, Writing- review & editing); Catherine Floegel (Formal Analysis, Investigation, Writing – Review & Editing, Visualization); Richard Hyde (Formal Analysis, Investigation, Writing – Review & Editing, Visualization); Abdalla Aly (Conceptualization; Methodology, Formal analysis, Investigation, Writing – Review & Editing, Visualization, Funding acquisition).
Disclosure statement
Elnara Fazio-Eynullayeva, Lei Lv, Paul Mystkowski, Caroline McKay and Abdalla Aly are employees of and hold stocks in Novo Nordisk lnc.
Jordan Miller, Stephanie McKee, Tamara Al-Zubeidi, Catherine Bottomley and Richard Hyde are employees and hold stock in Clarivate, the company that received payment from Novo Nordisk to conduct this study. Catherine Floegel is a former employee of Clarivate.
This study was funded by Novo Nordisk Inc.
Presentation of all or part of the material
Part of the results has been presented at American Academy of Neurology (AAN) 77th Annual Meeting in San Diego on April 10th, 2025.
Ethical conduct of research
Ethical approval for this study was obtained from the Western-Copernicus Group® Institutional Review Board (IRB) on 3 October 2023 (IRB study number: 1361366).
Consent for publication
All participants provided written informed consent prior to participation in the study.
Data availability statement
The data that support the findings of this study are available from the corresponding author, Lei Lv, upon reasonable request.
Supplementary material
Supplemental data for this article can be accessed online at https://doi.org/10.1080/17582024.2025.2542700
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Data Availability Statement
The data that support the findings of this study are available from the corresponding author, Lei Lv, upon reasonable request.