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Abstract

Dementia affects over 55 million people worldwide, with more than 11 million informal caregivers providing care. Caregivers experience physical, psychological, and social stresses, making it crucial to understand their caregiving experience. This study assessed whether the caregivers’ perceived choice to provide care and recognition of dementia symptoms influenced their caregiving experiences. A secondary cross-sectional analysis was conducted using data from the National Alliance for Caregiving, including 927 caregivers. Caregiving experience was measured on a 5-point Likert scale. Chi-square tests and ordinal logistic regression were used. Caregivers who perceived they had a choice to provide care were significantly more likely to report positive experiences (ARR = 1.39, P ≤ .001). Recognition of dementia symptoms was not significantly associated with caregiving experience. However, the combination of perceived choice and recognition of dementia symptoms, particularly from one event, was associated with the most positive caregiving experiences. Findings suggest the need for caregiver choice-support and dementia education programs.

Keywords

dementia informal caregivers recognition of dementia symptoms perceived choice to provide care caregiving experience caregiving

Introduction

Dementia symptoms are cumulative, meaning that the intensity of symptoms will worsen progressively as they age and affect their physical, cognitive, and emotional abilities.¹ People with dementia, particularly those with Alzheimer’s disease, have a decline in their cognitive abilities, which impairs their independent ability to carry out everyday tasks without the help of others. According to the World Health Organization (WHO), in 2021, there were 57 million people diagnosed with dementia worldwide.¹ WHO suggests an annual increase of 10 million patients, highlighting dementia as a significant global public health concern today.¹ As the global population with dementia grows, the number of informal caregivers will also increase. According to data from the Alzheimer’s Association, approximately 83% of caregiving tasks for individuals with dementia are carried out by informal caregivers, such as family members and friends.² More than 11 million individuals in the United States voluntarily assist people with dementia, resulting in 19 billion h of caregiving time and more than $413 billion in caregiving costs.² In light of the increasing number of dementia cases, there will be a growing demand for informal caregivers who can effectively support people with dementia in their day-to-day lives and take on caregiver responsibilities. Therefore, it is essential for informal caregivers to have a comprehensive understanding of the impact of dementia on both the individuals with the condition and on themselves, including the severity, consequences, and challenges of living with someone diagnosed with dementia.

The caregiving experience for individuals with dementia presents both challenges and rewards for informal caregivers and, therefore, can be perceived as positive or negative. Previous studies have shown that caregivers may experience a range of emotions while managing the complex demands of dementia caregiving and responding to the behavior of their loved ones.^3-6 Although researchers often focus on informal caregivers’ negative experiences, such as burden,^7-9 social isolation, and psychological distress,^10-13 caregivers’ experiences are not solely negative. Other researchers found positive caregiving outcomes as a result of providing care to people with dementia, such as self-satisfaction and contentment, being socialized with other informal caregivers, increased self-esteem, and better health outcomes.^5,14 For instance, the positive emotions derived from caregiving tasks for loved ones are associated with lower odds of frailty and sleep disruption.¹⁵

The perception of having a choice in assuming the responsibility of a caregiver for someone with dementia significantly impacts the caregivers’ experiences. Having a strong sense of autonomy and the freedom to choose positively affects an individual’s overall well-being, happiness, and contentment.^16-18 The caregiver’s choice to provide care is related to their ability to make a voluntary decision whether or not to provide the care needed to someone with dementia.¹⁹ The decision to provide care is influenced by various factors in the caregiving context, including family relationships and emotional connection, caregiving obligations and responsibilities, and the availability of resources.^20-22 The sense of autonomy and positive emotions can help the caregiver manage and cope with their caregiving burden.^19,23,24 For instance, the availability of social services and other resources for the care recipients influences the caregiver’s choice to provide care; those without any resources may feel obliged to become caregivers. The association between having a choice to provide care and the caregivers’ general and psychological well-being is positive.^19,25,26

Moreover, caregivers who perceived greater choice in their role tended to persist in providing care at home and were more apt to recognize the advantages of their caregiving responsibilities.²⁷ However, the lack of such choice results in emotional stress,²³ physical strain, stress and burden.^18,24,28 Similarly, informal caregivers report emotional stress and various types of mental health challenges when they perceive caregiving duties as being imposed upon them. This can diminish their motivation and engagement in effectively carrying out the required tasks, and they become reluctant to acquire the knowledge, skills, and attitudes necessary for the caregiving management of the person with dementia.^29,30 Furthermore, they may feel incompetent, resentful, incapacitated, and dissatisfied with the outcome of their caregiver services.^29-31

Caregivers encounter several difficulties stemming from the different types and stages of dementia, changes in mental health, as well as physical and behavioral problems,^32,33 which may also affect their choices along the way. These caregiving challenges lead to increasing tasks and responsibilities for caregivers. While only a few studies have explored caregivers’ choice to provide care to people with dementia, the focus has mostly been on spousal and adult child caregiving.^27,31,34 This leaves a gap in understanding the impact of caregiver choice among caregivers across populations. Furthermore, these prior studies have not directly examined the association between caregiver choice to provide care and caregiving experiences, which is one of the aims of the present study. This underscores the importance of further exploration in this area of dementia caregiving.

In addition to the choice to provide care, caregiving experiences are linked to the ability to recognize dementia symptoms. Recognition of dementia symptoms refers to the caregiver’s ability to identify and interpret the symptoms associated with dementia. This ability is directly influenced by their previous knowledge of dementia, which includes at least an overall understanding of the disease’s nature and manifestations.³⁵ In this study, recognition of dementia symptoms is measured, as it reflects how knowledge translates into practical caregiving awareness and actions. This recognition of symptoms can enable informal caregivers to be proactive in the potential struggles and challenges faced when caring for people with dementia.^35,36 Several studies found a relationship between adequate caregiver knowledge and caregiver burden, indicating that higher levels of knowledge are associated with lower levels of caregiver burden^37-39 and depression.^37,40 By the same token, studies found that having knowledge is linked to higher competency levels³⁷ and higher quality of caregiving for people with dementia.^37,41 In addition, this knowledge can spark a compassionate and caring attitude toward caregiving and positively impact the psychological well-being of the caregiver and the person receiving care.⁴²

Moreover, greater knowledge of dementia symptoms positively correlates with seeking help and using counseling and healthcare services,⁴³ and has also been identified as a key facilitator in accessing care, as it helps caregivers recognize symptoms as a problem and mobilize support networks.⁴⁴ Despite the importance of dementia symptoms knowledge and recognition, few studies have explored its impact on caregivers of people with dementia experiences. Yet, no study has examined how this knowledge of recognition of dementia symptoms, combined with the choice to provide care, influences caregivers’ overall experiences, highlighting the need for further exploration into this aspect of dementia caregiving. Our team investigated the impact of caregivers’ perceived choice to provide care and their recognition of dementia symptoms on their overall caregiving experience.

The interaction between perceived choice and recognition of dementia symptoms is grounded in principles of Self-Determination Theory (SDT), which highlights autonomy, the perception of having choice and control, as a fundamental psychological need that shapes motivation and adaptive behavior.^45,46 In caregiving contexts, autonomy translates into a caregiver’s sense of volition in how they manage responsibilities and make decisions. When caregivers feel they have some degree of choice to provide care, they are more likely to engage actively, seek information, and respond effectively to emerging changes in the person with dementia’s behavior or cognition. In contrast, caregivers who perceive limited choice or who feel obligated to provide care often experience higher stress, emotional strain, and burden,^18,23,24,28 which may impede early recognition and timely response to symptoms. Prior research, as discussed above in the introduction, although limited, has shown that greater perceived choice is associated with the caregivers’ general and psychological well-being.^19,25,26 Caregivers who report a higher degree of perceived choice are also more likely to sustain caregiving and to identify personal meaning and benefits in their caregiving roles.²⁷

From this perspective, the current findings align with SDT by suggesting that caregivers who perceive a choice to provide care may be more intrinsically motivated to notice, interpret, and act upon dementia-related symptoms, thus fostering more positive caregiving experiences. Recognition of symptoms, in turn, may reflect both knowledge and proactive engagement, amplifying the benefits of perceived autonomy. Accordingly, the observed interaction between perceived choice and symptom recognition in this study underscores how autonomy can enhance the adaptive processes that support effective and meaningful caregiving.

The aim of this study was to examine how caregivers’ perceived choice to provide care and their recognition of dementia symptoms influence their caregiving experiences. We hypothesized that caregivers’ perceived choice to provide care and recognition of dementia symptoms would be associated with positive caregiving experiences. Also, we hypothesized an interaction effect, such that the combination of perceived choice to provide care and symptom recognition, specifically when symptoms were recognized through a single event, would be associated with more positive caregiving experiences. In this context, a single event refers to caregivers identifying dementia symptoms based on one observable incident (eg, a sudden episode of confusion or unusual behavior) rather than through multiple behavioral or cognitive changes observed over time.

Methods

Data Source, Collection, and Study Population

This study includes a cross-sectional secondary data analysis drawing on a de-identified publicly available dataset from the National Alliance for Caregiving titled “What Made You Think Mom Had Alzheimer’s?” (2011). The survey was designed by Mathew Greenwald and Associates in collaboration with the National Alliance for Caregiving and funded by Pfizer.^47,48 The survey includes structured questions and Likert-type scales covering demographics, caregiving tasks, care recipient symptoms, and caregivers’ psychological and attitudinal changes they experienced. The original questionnaire contained 34 main items, including multiple sub-items.

The sampling frame for this research included informal caregivers of people with dementia and Alzheimer’s, over 18 years of age, and living in the United States. The survey was conducted between September 14 and September 27, 2010, with the help of Research Now’s online panel. A total of 1000 caregivers completed the web-based survey in approximately 14 min.

This dataset provides essential variables that align closely with the study’s research objectives and facilitate examination of how perceived choice to provide care and recognition of dementia symptoms are associated with caregivers’ self-reported caregiving experiences.

Primary Outcome and Predictors

The primary outcome used in this study was caregiving experiences. Caregiving experiences were measured using a 5-point Likert scale, where “ 1” signifies very negative, “ 2” denotes negative, “ 3” neutral, “ 4” positive, and “ 5” signifies very positive. To facilitate analytical clarity, we converted the original scale into a 3-point ordinal scale where a score of “1” represented a negative experience, a score of “2” was neutral, and a score of “3” indicated a positive caregiving experience.

The primary predictors of interest were the caregiver’s perceived choice to provide care and the recognition of dementia symptoms. The caregiver’s perceived choice to provide care was measured by the question, “Do you feel you had a choice in taking on this responsibility for caring for your ___?” with a dichotomous response: Yes or No. Recognition of dementia symptoms was measured by the question, “How did you come to think that your ___ probably had Alzheimer’s or dementia?” with responses either through one event (eg, noticing a family member frequently forgetting recent events) or multiple events (eg, observing progressive memory loss combined with changes in behavior over time), someone else’s suggestion (eg, a friend or another family member pointing out symptoms) or not knowing that the patient had dementia.

Covariates

The apriori-designated covariates in this study were the caregiver’s relationship to the care recipient and the care recipient’s stage of dementia. These factors potentially influence the caregiver’s choice to provide care and their overall caregiving experience. For example, spouses often take on the role of caregiver as caregiving is viewed as a natural extension of marriage and fulfillment of spousal obligations.²⁰ In addition, the caregiving experience might be more manageable and potentially more favorable during the initial stages than the more demanding later stages.⁴⁹

Other covariates, such as emotional stress and depression induced by caregiving, were also included, recognizing their impact on the caregiver’s experience.⁶ Furthermore, dimensions of care, including patience, confidence, socialization, fulfillment, and gratitude, were considered to obtain a deeper understanding of the caregiving experience. These dimensions can provide insights into the multifaceted nature of caregiving, highlighting the caregiving role’s rewarding and challenging aspects. For example, a high level of confidence may correlate with a more positive caregiving experience.⁵⁰ In addition, while a lack of socialization may lead to feelings of isolation, which impact the overall caregiver’s caregiving experiences, social support has been shown to enhance positive experiences and reduce depressive symptoms.^51-53

Statistical Analyses

Descriptive statistics were used in addition to ordinal logistic regression. Frequencies and percentages were used to describe the categorical variables. A Chi-square test was used for categorical variables to compare the general characteristics of informal caregivers according to their caregiving experience, unadjusted for other covariates. Ordinal logistic regression was used to examine the association between the caregiver’s experience and both their choice to provide care and their recognition of dementia symptoms, adjusting for all the covariates (eg, stage of dementia, relationship to the care recipient, mental health including depression and stress, and care dimensions including being optimistic and feeling fulfilled). Relative risks and 95% confidence intervals were estimated to interpret the results of the relationship between the caregiver’s experience, their choice to provide care, and their recognition of dementia symptoms. Then, we considered the possibility of an interaction between caregivers’ perceived choice and their recognition of symptoms. To do this, we updated the initial logistic regression model’s results to include an interaction term between (a) the caregiver’s perceived choice to provide care and (b) the caregiver’s symptom recognition. This interaction term describes the additive effect of having both choice and recognition of symptoms for each category of recognition. Finally, we calculated the marginal effects to describe how both the caregiver’s choice to provide care and recognition of symptoms impact the probability of negative, neutral, and positive caregiving experiences. The significance of the interaction term was evaluated using an omnibus likelihood ratio test. All statistical tests were performed using Stata/SE version 18.0, with a P-value less than .05 considered statistically significant.

Results

Caregivers’ Demographics and Caregiving Experience

Table 1 describes the general characteristics of the sample according to caregivers’ caregiving experience. This study utilized 927 observations after removing missing observations using a listwise deletion strategy. Of these, 550 participants (59.3%) were between 50 and 74 years old. The number of female participants was 613 (66.1%). As for the caregiving experience outcomes, 301 caregivers (32.5%) stated positive experiences, and 156 caregivers (16.8%) stated negative experiences. In the study sample, people with dementia had various stages of dementia, where 22.9% of people with dementia were at mild stages, 50% of people with dementia were at moderate stages, and 27.1% of people with dementia were at severe stages. With regard to the dementia caregiver-people with dementia relationship, the data shows that most of the people with dementia were either parents or grandparents of their caregiver (83.5%). When exploring the impact of caregiving on mental health, 60.5% of caregivers experienced stress, and 30% experienced depression.

Table 1.

Characteristics of Informal Caregivers, Overall and According to Caregivers’ Caregiving Experiences

	Overall	Caregivers caregiving experience			P-value
	Overall	Negative	Neutral	Positive	P-value
No, (%)	927	156 (16.83)	470 (50.70)	301 (32.47)
Age, no. (%)
18-49	357 (38.5)	59 (16.5)	175 (49.0)	123 (34.5)	.773
50-74	550 (59.3)	95 (17.3)	284 (51.6)	171 (31.1)
75 or older	20 (2.2)	2 (10.0)	11 (55.0)	7 (35.0)
Gender, no. (%)
Male	314 (33.87)	46 (14.7)	165 (52.5)	103 (32.8)	.43
Female	613 (66.13)	110 (17.9)	305 (49.8)	198 (32.30)	.43
Perceived choice to provide care
No	496 (53.5)	120 (24.19)	263 (53.02)	113 (22.9)	<.001
Yes	431 (46.5)	36 (8.35)	207 (48.03)	188 (43.62)	<.001
Recognition of dementia symptoms, no. (%)
Don’t know	11 (1.2)	1 (9.1)	8 (72.7)	2 (18.2)	.001
Someone said	40 (4.3)	6 (15.0)	16 (40.0)	18 (45.0)
From one event	38 (4.1)	10 (26.3)	7 (18.4)	21 (55.3)
From multiple events	838 (90.4)	139 (16.6)	439 (52.4)	260 (31.0)
Relationship to people with dementia, no. (%)
Parent/grandparent	774 (83.5)	137 (17.7)	395 (51.0)	242 (31.3)	.01
Spouse	40 (4.3)	8 (20.0)	24 (60.0)	8 (20.0)
Friend/Oher relative	113 (12.2)	11 (9.73)	51 (45.13)	51 (45.13)
Stage of dementia, no. (%)
Mild	213 (22.9)	22 (10.3)	109 (51.2)	82 (38.5)	.02
Moderate	463 (50)	92 (19.9)	232 (50.1)	139 (30.0)
Sever	251 (27.1)	42 (16.7)	129 (51.4)	80 (31.9)
Emotional stress as result of caregiving, no. (%)
Not stressful	94 (10.1)	4 (4.3)	26 (27.6)	64 (68.1)	<.001
Unchanged	272 (29.)	22 (8.09)	144 (52.94)	106 (38.97)
Stressful	561 (60.5)	130 (23.2)	300 (53.4)	131 (23.4)
Depression as result of caregiving, no. (%)
Not depressed	374 (40.3)	27 (7.2)	178 (47.6)	169 (45.2)	<.001
Unchanged	274 (29.6)	46 (16.8)	150 (54.7)	78 (28.5)
Depressed	279 (30.1)	83 (29.8)	142 (50.9)	54 (19.3)
Care dimensions, no. (%)
Optimism/pessimism
Pessimistic	291 (31.4)	96 (32.9)	150 (51.6)	45 (15.5)	<.001
Unchanged	469 (50.6)	54 (11.51)	260 (55.44)	155 (33.05)
Optimistic	167 (18.0)	6 (3.6)	60 (35.9)	101 (60.5)
Patience
Impatient	186 (20.1)	57 (30.7)	99 (53.2)	30 (16.1)	<.001
Unchanged	217 (23.4)	35 (16.1)	128 (59.0)	54 (24.9)
Patient	524 (56.5)	64 (12.2)	243 (46.4)	217 (41.4)
Socialization
Detached from people	161 (17.4)	47 (29.2)	82 (50.9)	32 (19.9)	<.001
Unchanged	424 (45.7)	76 (17.9)	225 (53.1)	123 (29.0)
Engaged with people	342 (36.9)	33 (9.6)	163 (47.7)	146 (42.7)
Confidence
Doubtful of yourself	105 (11.3)	35 (33.3)	49 (46.7)	21 (20.0)	<.001
Unchanged	453 (48.9)	79 (17.4)	245 (54.1)	129 (28.5)
Self-confident	369 (39.8)	42 (11.4)	176 (47.7)	151 (40.9)
Fulfillment
Less fulfilled	164 (17.7)	72 (43.9)	69 (42.1)	23 (14.0)	<.001
Unchanged	407 (43.9)	62 (15.2)	244 (60.0)	101 (24.8)
More fulfilled	356 (38.4)	22 (6.2)	157 (44.1)	177 (49.7)
Gratitude
Less grateful	57 (6.2)	27 (47.4)	24 (42.1)	6 (10.5)	<.001
Unchanged	252 (27.2)	57 (22.6)	155 (61.5)	40 (15.9)
More grateful	618 (66.6)	72 (11.6)	291 (47.1)	255 (41.3)

Note. Data are from the National Alliance for Caregiving. The chi-squared test was used for statistical tests.

Note. Fisher’s Exact Test was performed due to small cell counts (<5) in some categories of recognition of dementia symptoms. P = .001.

Perceived Choice to Provide Care and Recognition of Dementia Symptoms

Among our sample, 496 (53.5%) participants reported not having the choice to provide care for relatives with dementia, while the rest indicated they did have a choice. Regarding caregivers’ recognition of dementia symptoms, 90.4% of the participants came to think their relative had dementia through multiple events. The most commonly reported symptoms that led caregivers to suspect dementia were problems with remembering conversations or words (44%). Additionally, changes in mood or personality, such as suspicion, depression, fearfulness, or being easily upset, were reported by 29% of the participants. Moreover, 27% of the participants reported issues with misplaced or lost items. However, 29% of caregivers indicated that their recognition of dementia occurred following a doctor’s examination or questioning (See Table S1 in the Supplemental document).

Because some categories under recognition of dementia symptoms (ie, “Don’t know” and “Someone said”) included small cell counts (<5), Fisher’s Exact Test was conducted to verify the robustness of the association. The results of the P-value remained consistent with the chi-square test (P = .001).

Unadjusted Results

As displayed in Table 1, the relationship to people with dementia, the stage of dementia, emotional stress and depression induced by caregiving, as well as care dimensions (patience, confidence, socialization, fulfillment, and gratitude) were statistically significant and associated positively with the caregivers’ caregiving experience (P ≤ .02). In contrast, demographic factors such as age and gender did not correlate with caregivers’ caregiving experience (P ≥ .4).

Adjusted Outcomes

We examined the relationship between the caregiver experience, caregivers’ perceived choice to provide care, and their recognition of dementia symptoms using an ordinal logistic regression model. The results are presented in Table 2. The categories “Don’t know” and “Someone said” under recognition of dementia symptoms were collapsed into a single group (“Don’t know or Someone said”) due to small cell counts in both categories. The combined group (“Don’t know or Someone said”) served as the reference category for this variable in the adjusted model.

Table 2.

Ordinal Logistic Regression: The Association Between Perceived Choice to Provide Care, Recognition of Dementia Symptoms and Caregiver Caregiving Experiences

	Caregivers caregiving experience
	Negative		Neutral		Positive
	ARR (95%CI)	P-value	ARR (95%CI)	P-value	ARR (95%CI)	P-value
Perceived choice to provide care (yes)	0.64 (0.52,0.80)	<.001	0.93 (0.90, 0.97)	.0006	1.39 (1.19, 1.63)	<.001
Recognition of dementia symptoms	0.64 (0.52,0.80)	<.001	0.93 (0.90, 0.97)	.0006	1.39 (1.19, 1.63)	<.001
From one event	0.66 (0.33, 1.33)	.24	0.90 (0.75, 1.09)	.28	1.28 (0.85, 1.93)	.23
From multiple events	1.16 (0.76, 1.77)	.49	1.02 (0.95, 1.11)	.55	0.90 (0.67, 1.20)	.47

Note. Data are from the National Alliance for Caregiving.

CI, 95% confidence interval; ARR, adjusted relative risk.

Caregivers who perceived they had a choice to provide care for relatives with dementia compared to those who did not were 39% more likely to have a positive experience (Adjusted relative risk [ARR] = 1.39, P < .001) and 36% less likely to have a negative experience (ARR = 0.64, P < .001), when controlling for all covariates.

In addition, caregivers who recognized the dementia symptoms of their family members from one event were about 34% less likely to report negative experiences compared to caregivers in the ‘do not know or someone said’ dementia symptoms recognition group (ARR = 0.66, P = .24), when controlling for all covariates. Caregivers who recognized the dementia symptoms of their family members from one event were 28% more likely to experience positive experiences than caregivers in the ‘do not know or someone said’ dementia symptoms recognition group (ARR = 1.28, P = .23), when controlling for all covariates.

Caregivers who recognized dementia symptoms from multiple events showed comparable but non-significant patterns, being 16% more likely to report negative experiences (ARR = 1.16, P = .49) and 10% less likely to report positive experiences than caregivers in the ‘do not know or someone said’ dementia symptoms recognition group (ARR = 0.90, P = .47), when controlling for all covariates. However, none of these associations within the dementia symptom recognition categories reached statistical significance. The full table with all covariates is available as a digital supplement (Table S2).

The omnibus test for an interaction effect was statistically significant (P = .0078), indicating a meaningful interaction between caregivers’ perceived choice to provide care and their recognition of dementia symptoms. The individual-level tests for each level of interaction had lower power and were not individually significant. That said, the significant omnibus test is likely driven by the interaction between ‘one event’ and perceiving a choice to provide care vs the other factors. The detailed interaction table can be found in the supplementary document (Table S3).

Marginal effects were calculated to further illustrate how the combination of perceived choice to provide care and symptom recognition influences caregiving experiences. Figure 1 presents a stacked bar chart illustrating the distribution of caregiving experiences (negative, neutral, and positive) among caregivers based on the caregiver’s perceived choice to provide care and recognition of dementia symptoms.

Figure 1.

Combined Impact of Caregivers’ Perceived Choice to Provide Care and Recognition of Dementia Symptoms on Their Caregiving Experiences

Caregiving experiences varied notably depending on both the caregiver’s perceived choice to provide care and their recognition of dementia symptoms.

Caregivers in the “Don’t Know/Someone Said” Dementia Symptoms Recognition Group

Among caregivers who did not recognize, or someone said the dementia symptoms, neutral experiences dominated across both groups (with or without choice). In the no-choice group, 40% reported neutral experiences, 28% negative, and 32% positive; in the choice group, 53.8% reported neutral experiences, and 46.2% reported positive, with no negative experiences reported.

Caregivers Who Recognize Dementia Symptoms From One Event

Negative experiences were reported by 41.7% of caregivers who recognized dementia symptoms based on one event and did not perceive a choice, 16.6% reported neutral experiences, and 41.7% reported positive. In the choice group, no caregivers reported negative experiences, 21.4% reported neutral, and 78.6% reported positive experiences, making positive experiences the most frequently reported outcome in that group.

Caregivers Who Recognized Dementia Symptoms From Multiple Events

Among caregivers who recognized dementia symptoms from multiple events, negative experiences were higher in the no-choice group (23%) and decreased when the caregivers perceived they had a choice (9.2%). Neutral experiences were more common in both groups: 55.7% in the no-choice group and 48.6% in the choice group. Finally, positive experiences became more common among caregivers who recognized dementia symptoms and perceived they had a choice (42.2%) compared to those who did not (21.3%).

Discussion

This secondary data analysis examined the individual and combined impact of a caregiver’s perceived choice to provide care and recognition of dementia symptoms on their self-reported caregiving experience. Our data included caregivers of people diagnosed with Alzheimer’s and other forms of dementia as the units of analysis, and it was obtained from the National Alliance for Caregiving.^47,48 Our results stress the importance of choosing to provide care and recognizing dementia symptoms as a key element in the caregiving experience.

This study found that when caregivers perceived they had a choice to provide care for someone with dementia, they were more likely to report positive experiences. This choice could be influenced by various factors. Previous research found that the proximity of the relationship with the individual is a critical factor. Spouses may feel a strong sense of responsibility to take on the role of caregiver.²⁰ Other factors, such as cultural and familial expectations, also come into play. Some cultures place a strong emphasis on family members caring for elderly relatives, including those with dementia.^21,54,55 These factors, if not aligned with personal values or perceived as a cultural or social obligation, can impact the caregiver’s decision-making, choice, and experience. Personal values and beliefs shape decisions. For some, caregiving may be a moral obligation or an expression of love and devotion,^20,21 while others may prioritize personal autonomy.

Additionally, financial considerations may influence the caregiver’s choice to provide care. The availability of financial resources can greatly impact the options available for professional care, additional healthcare support, and treatment. Access to high-quality healthcare services, such as assisted living, long-term facilities, and nursing homes, is also an important consideration. Having a strong support network from family, friends, or community services may empower caregivers to feel more capable and willing to take on the caregiving role, making caregiving more manageable and sustainable.⁵⁶ Emotional readiness is essential. Caregiving for someone with dementia is emotionally demanding; caregivers who feel emotionally prepared may be more likely to perceive caregiving as a choice rather than an obligation. The caregiver’s health status is also significant. Pre-existing health conditions or caregiving responsibilities may limit the capacity to take on additional caregiving responsibilities. Access to information and resources also plays a vital role. Lack of knowledge about dementia and available support services can make caregiving seem overwhelming or unmanageable.⁵⁷

This study also found that caregivers were more likely to report positive caregiving experiences when they recognized dementia symptoms, potentially due to prior knowledge. However, these associations were not statistically significant after adjusting for covariates.

To our knowledge, and while no prior study has directly examined the interaction between perceived choice to provide care and symptom recognition, related research supports their conceptual connection. Evidence shows that the association between having a choice to provide care and caregivers’ psychological well-being is consistently positive, with caregivers who perceive autonomy being more likely to continue providing care at home and to recognize the meaningful aspects of their caregiving responsibilities.^16-18 In addition to the choice to provide care, knowledge has been found to reduce caregiver burden and depression while improving competence, confidence, and overall caregiving quality.^19,37-41

Taken together, the current findings highlight that even though dementia symptom recognition alone was not a significant predictor of caregiving experience, its interplay with perceived choice produced a significant interaction effect. This indicates that the impact of recognizing dementia symptoms may depend on whether caregivers feel they had a choice in assuming the caregiving role. In other words, when caregivers both recognized dementia symptoms, particularly from one event, and perceived they had a choice, positive experiences became the most frequently reported outcome. Therefore, this study provides a more nuanced understanding by showing that caregiving experiences here varied depending on both caregivers’ perceived choice to provide care and their recognition of dementia symptoms. Additionally, the stratified analysis showed variations across levels of symptom recognition. For instance, caregivers who recognized symptoms from multiple events experienced positive experiences when they also perceived a choice, although the strongest pattern was observed among those who recognized symptoms from one event. This pattern may reflect that caregivers who feel free to choose to provide care are more willing and open to seeking knowledge and resources, as they have personal motivation compared to someone who feels obliged and may lack this motivation,⁵⁸ thereby potentially promoting better health among caregivers.⁵⁹ Among those who did not recognize symptoms or only learned about them from someone else, neutral experiences dominated regardless of perceived choice, suggesting limited differentiation by choice in this subgroup.

This research contributes to the literature by delving into the individual and combined impact of caregivers’ perceived choices and recognition of dementia symptoms on the overall caregiving experience for people with dementia. The combined effect of these two factors may have a rewarding impact on caregivers’ experiences, such as increasing their productivity, courage, and effectiveness in caring for their loved ones. By the same token, caregivers who had the freedom to provide care and the opportunity to learn about dementia may possess a deeper understanding of treating dementia not only as a memory problem but also feel psychologically ready to handle the deteriorating symptoms of people with dementia.

Policy and Practice Recommendations

Given the findings of this research, it is essential to pursue an approach to implementing policies and practices that focus on dementia caregivers’ choices and dementia symptom recognition. This approach should aim to enhance caregivers’ sense of autonomy wherever possible, while recognizing that many caregivers face structural, financial, or familial constraints that limit their ability to choose whether to assume the caregiving role. Providers and policymakers should therefore focus on validating these constraints, offering practical supports, and helping caregivers feel empowered within the circumstances they face. Similarly, efforts to improve caregivers’ knowledge through accessible training programs on dementia and its symptoms can help them make better-informed and more confident care decisions.

This approach may utilize healthcare service providers from the individual to the institutional level, acknowledging the importance of providing options for caregivers and autonomy in their caregiving decisions. This may increase the quality of home care for people with dementia in the short term and decrease their burden on hospitals in the long term. When a caregiver-centric approach is pursued in terms of policies and practices, putting caregivers’ choices and recognition of dementia symptoms at the forefront may improve the overall caregiver experience and potential outcomes for those receiving care.

Supplementary Analysis

The findings of this study illuminate several pivotal aspects of caregiving for individuals with dementia. For instance, the stage of dementia is an important indication of caregiving experiences. The findings of this research revealed that caregivers are inclined to report more negative experiences when their relatives have moderate levels of dementia than when they have mild levels of dementia. One potential explanation for this might be related to the fact that caregivers may need more support as the stages of dementia increase for their loved ones, because the caregiver’s burden grows as the dementia condition progresses.⁶⁰ Furthermore, emotional stress becomes another element associated with the caregiving experience. Those caregivers with stress are almost three times more likely to report negative caregiving experiences. The findings highlight the deep connection between emotional health and the job of caregiving, underscoring the need for caregivers to have the right emotional support mechanisms.

Reflections on the Utilized Dataset

Although the dataset used in this analysis was collected in 2011, the choice to provide care for individuals with dementia and to recognize dementia symptoms remains relevant. The choice to provide care for a person with dementia is influenced by long-standing factors such as familial bonds, cultural expectations, and moral or ethical considerations. These influences persist over time because they are rooted in human relationships and social structures. For example, caregivers often feel a sense of obligation grounded in love, duty, or societal norms, which remain constant despite advancements in healthcare or changing societal attitudes. Moreover, the challenges faced by caregivers, such as emotional burden, physical stress, and financial strain, have changed little over time. These experiences are significant, whether viewed through a contemporary or historical lens. Thus, information from an older dataset still offers a valuable understanding of caregivers’ experiences.

While it is true that advancements in dementia research and caregiving practices may introduce new variables, such as improved diagnostic tools, greater access to resources, or evolving societal attitudes toward mental health, fundamental caregiving experiences and the processes of symptom recognition continue to hold relevance. Increased public dialogue and acceptance of mental health care have undoubtedly created an environment where caregivers may feel more empowered to seek help or recognize early warning signs of cognitive decline. These shifts can influence the caregiving journey, making it essential to contextualize findings within both historical and contemporary frameworks. At the same time, the age of the dataset may limit the generalizability of the findings to today’s caregiving context, as more recent caregiving experiences could be shaped by these advancements and changes.

Nevertheless, the underlying dynamics of caregiving, rooted in emotional connections, familial responsibilities, and societal expectations, remain deeply ingrained and likely to persist over time. This suggests that even older datasets can provide valuable insights into caregiving experiences that transcend specific temporal or cultural shifts. Acknowledging these nuances ensures that the findings remain relevant while respecting the evolving landscape of dementia care.

Limitations

The findings of this research fill some knowledge gaps in relation to the association of perceived choice in caregiving and recognition of dementia symptoms with experience of caregiving; however, it is still important to consider some limitations. The measurement of dementia symptoms recognition may not have been the most precise and may not adequately capture the complexity of caregiver knowledge about dementia symptoms. Future research should use a more refined scale to assess dementia-related symptom recognition. Additionally, the study relied on self-reported data, which introduces the potential for recall bias. Caregivers may not accurately remember or report their experiences, symptoms, or choices, which could affect the reliability of the findings. Finally, the data were collected in 2011, which may limit the generalizability of the findings to today’s caregiving context, as discussed above.

Despite the limitations, our study provides valuable insights into establishing a foundation for future research on dementia caregiving that can improve the quality of life for caregivers and persons with dementia. To the best of our knowledge, our study is one of the first studies examining the interaction between a caregiver’s choice to provide care and the recognition of dementia symptom factors individually and together.

Conclusion

To the best of our knowledge, this secondary data analysis study is the first to examine the individual and combined effect of caregivers’ perceived choice to provide care and recognition of dementia symptoms on their caregiving experience. While earlier literature has explored the perceived choice to provide care, the combined effect of this factor with the recognition of dementia symptoms on the caregiving experience has been unknown, precluding us from fully understanding the significance of these factors. This study shows the significant impact of caregivers’ perceived choice to provide care on their caregiving experience. In addition, this study highlights the significance of the interaction between the perceived choice to provide care and recognizing dementia symptoms, noting that positive experiences were most frequently reported among those who both recognized dementia symptoms from one event and perceived they had a choice to provide care.

These research findings provided significant implications for informal dementia caregivers, healthcare systems, and future studies on caregivers of people with dementia. Informal caregivers may experience less burden when they have a chance to prepare their daily schedule on their own and are better prepared when they are equipped with the knowledge necessary to recognize dementia symptoms in giving care to people with dementia. Healthcare systems can play a pivotal role in supporting informal caregivers by offering accessible resources, such as tailored training programs that provide theoretical and practical knowledge about dementia symptoms and care. Also, healthcare professionals should recognize that not all caregivers have genuine freedom to choose their role, as financial, cultural, or familial pressures often shape caregiving decisions. Accordingly, professionals can best support caregivers by acknowledging these constraints, promoting realistic autonomy in decision-making, and empowering them to manage caregiving demands while maintaining their own well-being.

Future research could explore whether the positive effect of perceived choice stems more from emotional motivations, such as love or moral obligation, or from practical considerations, such as the availability of resources and support. Future research should also focus on developing tailored interventions or approaches to provide caregivers with complete education and support. As the role of informal caregivers of people with dementia is increasingly crucial, our study informs the significant impact of choice and symptom recognition knowledge on enhancing the overall experiences of informal caregivers. By understanding the importance of these factors, we can encourage positive caregiving experiences.

Supplemental Material

Supplemental Material - Perceived Choice to Provide Care and Recognition of Dementia Symptoms: Impact on Caregivers’ Caregiving Experiences

Supplemental Material for Perceived Choice to Provide Care and Recognition of Dementia Symptoms: Impact on Caregivers’ Caregiving Experiences by Sumiyyah Zimami, Hala Darwish, and Deanna J. Marriott in American Journal of Alzheimer's Disease & Other Dementias®

Footnotes

ORCID iDs

Sumiyyah Zimami

Hala Darwish

Deanna J. Marriott

Ethical Considerations

This study involved the secondary analysis of publicly available and de-identified data from the National Alliance for Caregiving’s 2011 report, “What Made You Think Mom Had Alzheimer’s?” As such, no additional ethical approval was required.

Consent to Participate

This study involved the secondary analysis of previously collected and de-identified data.

Authors Contributions

Sumiyyah Zimami and Hala Darwish co-conceptualized the study. Sumiyyah Zimami conducted the literature review and statistical analysis and wrote the manuscript. As the corresponding author, Hala Darwish provided critical feedback, reviewed the manuscript, and contributed to the final revisions. Deanna Marriott provided statistical guidance, reviewed the analysis, and offered feedback on the paper, study design, and methodology. All authors reviewed and approved the final manuscript.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors gratefully acknowledge the financial support received to cover the publication costs. SZ would like to thank the Mary Lucille Randolph and Lea King Dean Memorial Scholarship at the Center for the Education of Women+ at the University of Michigan for their support. HD is deeply grateful for the generous gift from an anonymous donor and the support of the Department of Systems, Population, and Leadership at the University of Michigan School of Nursing.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Data Availability Statement

The data supporting this study’s findings are publicly available and can be accessed at the National Alliance for Caregiving: https://www.caregiving.org/research/open-data/. The specific report can be accessed directly at .

Supplemental Material

Supplemental material for this article is available online.

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Supplementary Material

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