Alzheimer’s Caregivers’ Experience With and Perceptions of the Affordable Care Act : Thematic Analysis of Online Discussion Forums

Abstract

The objective of this study was to analyze caregivers’ authentic perceptions of and experiences with the Affordable Care Act (ACA). This mixed-methods study identified and analyzed caregivers’ unsolicited posts on a national online forum. Data posted in 2011 to 2017 were collected. The text-mining thematic analysis method was used to code and analyze 514 caregiver posts. Although many caregiver posts about the ACA had a negative tone, perceptions became more positive over time. Three overall themes emerged: (a) concern about cost implications of placement decisions for care recipients, (b) skepticism about government and health care system support of their caregiving roles, and (c) caregivers’ own well-being and concerns about health insurance. Clear and effective communication between policymakers, health professionals, and caregivers is needed to enhance health system literacy. Policymakers, as well as health and social care professionals working with Alzheimer’s patients and their families, should be empowered to develop and support a family-centered service system.

Keywords

dementia caregiving Alzheimer’s disease technology Affordable Care Act thematic analysis social media

In 2018, an estimated 5.6 million older adults in the United States lived with Alzheimer’s disease or other types of dementia (Alzheimer’s Association, 2019). The absolute number of people with dementia (PWD) has continuously increased over time and is expected to double by 2060 (Matthews et al., 2018). More than 16 million family caregivers provide care for PWD, assisting nearly 80% of PWD to stay in the community (Alzheimer’s Association, 2019).

By delaying transfer of PWD to assisted living or long-term care facilities, caregivers contribute an estimated US$233.9 billion (Alzheimer’s Association, 2019) to $470 billion (Reinhard et al., 2015) annually to society, ultimately shielding government budgets from astronomical long-term care expenses. However, studies have consistently identified significant unmet needs relating to caregivers’ mental health and cognitive ability (e.g., Dassel et al., 2015) and susceptibility to disease increasing health problems (e.g., Fonareva & Oken, 2014). Also, economic hardships of caregivers, including the loss of a job or cutbacks in work hours as well as increasing out-of-pocket costs for their family members’ health care, were found. Decreased employment led to household income loss for 35% of family caregivers of PWD, which may leave them in or near poverty (Alzheimer’s Association, 2019). Medical expenditure for PWD comprises a considerable portion of caregivers’ financial burden. Using nationally representative data from 2005 to 2010, Kelley and colleagues (2015) found that the average costs for caring for PWD, nearly US$290,000, were about 1.7 times higher than the costs for those with other diseases.

The Patient Protection and Affordable Care Act (ACA) which aims to provide quality and affordable health care for all U.S. citizens has the potential to assist with the unmet health and financial needs of family caregivers through those provisions and regulations. The ACA regulated the preexisting condition exclusions and established annual limits on out-of-pocket costs for the purchase of insurance plans from the Marketplace. Medicare enrollees were enabled to access preventive services through zero-cost sharing that was suggested by the ACA aiming to close the “Donut Hole” in Medicare Part D (Prindiville, 2019). A majority of caregivers of PWD are middle or older aged and are at high risk of physical and mental health problems yet seldom see a doctor (Alzheimer’s Association, 2019). Considering these characteristics of caregivers, the policies of the ACA are a significant avenue for caregivers to access proper health services and save on medical costs of both PWD and their caregivers.

Although family caregivers of PWD are one group that could potentially benefit from the ACA, limited studies have focused on caregivers’ experiences in relation to the ACA. Because of the barriers, such as weak identity of being a caregiver (Levitsky, 2014), lack of time due to multiple caregiving demands, or unwillingness to share their difficulties publicly (Shatenstein et al., 2008), studies reported challenges in recruiting family caregivers to learn about their opinions. Caregivers may not put their priority on discussing and actively solving policy-related issues over other at-hand daily caring tasks related to the PWD’s health and wellness while they may encounter challenges with the health care system and policies. Moreover, at the state level, reluctance to collect and analyze data from caregivers to uncover the unmet needs of caregivers (Meyer et al., 2019) serves as a barrier to understanding their policy experiences.

Caregivers have been increasingly turning to online social media to meet their need for information and emotional support (Nikzad-Terhune et al., 2015). Nationally, about 80% of caregivers have used online resources, with the majority seeking health information (Fox & Brenner, 2012). Online social media provides a venue for caregivers to communicate in an open, secure, and empathetic environment while helping them maintain anonymity and flexibility in time and place (Tanis et al., 2011). Considering that online social media use among caregivers of PWD is popular, analyzing online communication data could be a useful way to identify the unmet needs of this population in that it provides a rich and contextualized understanding of the meaning and experiences that are individually perceived.

Research Questions

The guiding research questions were as follows:

Research Question 1: How do caregivers view the ACA as revealed by the content and tone of their online posts?

Research Question 2: How do caregivers experience the ACA in diverse caregiving contexts in communities?

Research Design and Methods

Data Collection and Preparation

Data for this study were downloaded from ALZConnected®, a publicly open online community for PWD and their families. We obtained permission from the Alzheimer’s Association and from the Indiana University Institutional Review Board to use this online forum as a data source. Participants in this forum were self-identified family caregivers of those living with Alzheimer’s or other dementia. Participants, most of whom use pseudonyms, voluntarily contributed by posting and reacting to previous posts (i.e., threads), which can be publicly seen. The “main post” refers to the initial post that leads a discussion, and “thread” refers to a reply following the main post and any accompanying threads. Because we were interested in caregivers’ perceptions about the ACA, we strategically filtered data using the following keywords: Affordable Care Act, ACA, Obama Care, Obamacare, and health policy. The main posts and threads containing any of these words were included in the sample. The posts and threads we identified were generated by family caregivers from 2011 to 2017. The sample was collected in November 2017.

A search tool embedded in the webpage was used for the initial filtering, and selected data were saved as text format. Because the analysis unit was an individual post rather than a participant, the research team imposed a unique identification number on each post and thread. The IDs presented in this article are a combination of the search term, year posted, and ID# of a leading post. A combination of data management and analysis tools, including Dedoose, an online platform for mixed-methods research developed by academics from UCLA; NVivo12, qualitative research software developed by QSR International; and Excel spreadsheets, was used to structure and analyze the data in both numerical and text formats and to identify patterns and narrative themes.

Data Analysis Strategy

A mixed-methods approach was used for analysis. First, descriptive statistics were used to identify the characteristics and tones of the posts and attitudes of caregivers toward the ACA. Next, text-mining thematic analysis was used to uncover the emerging themes and to navigate the patterns of the links between the themes. Text mining is a computer-oriented analysis method used to structure a significant amount of narrative or unstructured data to identify patterns or themes (Wiedemann & Wiedemann, 2016). Thematic analysis is a qualitative analysis method aimed at identifying patterns of text data and interpreting the aspects of research topics without specific theory or epistemology (Braun & Clarke, 2006).

Using computer-assisted coding and analysis, we created a text tree to identify the initial patterns from the explicitly appearing meanings (Braun & Clarke, 2006). Next, we identified themes and labeled the underlying connections following the six stages suggested by Braun and Clarke (2006): (a) familiarizing oneself with the data, (b) generating initial codes, (c) searching for themes, (d) reviewing themes, (e) defining themes, and (f) producing the report. Initially, we read the overall posts and threads (thereafter “posts”) repeatedly and actively to understand the context of each discussion, and then focused on posts that contained the search terms to identify how the key terms were mentioned in which contexts. Next, one researcher manually coded each quote in the posts to organize the data into meaningful groups and categories, and then extracted codes and tagged names to generate data-driven initial themes. The second researcher reviewed the codes and schemes developed by the first researcher. Using an iterative coding and recoding process between stages (c) and (e), we extracted the emerging key themes and subthemes and the relationships among them across the data. In addition, we manually developed thematic maps with refined labels which visually represented the relationships among the themes. Each theme is illustrated with excerpts of caregiver posts.

The primary tone and purpose of each post were identified based on the judgment of the researchers. Posts that were primarily encouraging or consoling or that expressed positive emotions or experiences were coded as positive; those that contained caregiving information, tips, and resources were coded as neutral; and those that expressed concerns, complaints, critiques, and challenging a certain topic in a heated manner, or shared adverse experiences were coded as negative. For the posts that contained multiple tones and/or purposes, the authors rereviewed them to seek the most dominant purpose and tone of the post. Using the same criteria, attitudes toward the ACA were coded separately. Discrepancies in the coding were discussed until an agreement was reached.

Data Description

Of the initial 739 posts identified, 225 were duplicates, which referred to the posts or threads that appeared multiple times (e.g., when a post includes “ACA” and “Obama Care” together, it was captured twice.) In this case, we eliminated one of them. After omitting duplicates, 514 posts/threads that were posted by 209 forum participants were included in the analysis sample. Fifty posts included the exact search terms (see Table 1).

Table 1.

Sample Posts’ Characteristics.

Search terms	Post/threads with duplicates (n)	Posts/threads without duplicates (n)	Discussants (n)	Posts/threads containing search terms (n)
Affordable Care Act	176	101	65	11
ACA	132	132	37	11
Obama Care	95	95	30	10
Obamacare	253	138	58	14
Health policy	83	48	19	4
Total	739	514	209	50

Note. ACA = Affordable Care Act.

Characteristics of the analysis sample are depicted in Table 2. In addition to the total sample (TS, n = 514), we generated a subsample by selecting posts and threads that contained the search terms, “ACA sample” (AS), n = 50. The TS helps us to understand the background or context in which the ACA appeared in the discussions, while the AS enables us to identify caregivers’ specific attitudes toward the ACA. In the TS, 209 caregivers generated 514 posts with an average of 2.65 posts per participant (SD = 3.74). In the AS, 20 caregivers posted 50 posts with an average of 4.15 posts per participant (SD = 5.02). Around half of the discussions in TS were concentrated in 2015 (n = 128, 25%) and 2012 (n = 122, 23.8%), while the AS posts tended to be posted in 2017 (n = 14, 28%) and 2012 (n = 10, 20%). In both samples, most posts shared some aspect of caregiving experiences (TS: n = 243, 47.3%; AS: n = 19, 38.0%), expressed concerns or complaints (TS: n = 77, 15.0%; AS: n = 13, 26.0%), or provided information or caregiving tips (TS: n = 69, 13.40%; AS: n = 7, 14.0%). Most caregivers reported the PWD was a parent (TS: n = 81, 68.1%; AS: n = 7, 43.8%). A subgroup of caregivers reported that they cared for two or more family members who need significant assistance comprising 11% (n = 13) in TS and 25% (n = 4) in AS.

Table 2.

Sample Posts and Participants’ Demographic Characteristics.

Characteristics of sample posts	Total sample		ACA sample
	(n^a = 514)		(n^a = 50)
	Freq.	%	Freq.	%
Year
2012	122	(23.8)	10	(20.0)
2013	76	(14.8)	8	(16.0)
2014	5	(1.0)	1	(2.0)
2015	128	(25.0)	9	(18.0)
2016	87	(17.0)	8	(16.0)
2017	95	(18.5)	14	(28.0)
Primary purpose of posting
Reply/Sharing experience	243	(47.3)	19	(38.0)
Concern/Complain	77	(15.0)	13	(26.0)
Information	69	(13.4)	7	(14.0)
Encouraging/Comforting	44	(8.6)	–	–
Argument	40	(7.8)	6	(12.0)
Asking for help/Asking questions	37	(7.2)	5	(10.0)
Others	4	(0.8)	–	–
Characteristics of participants	(n^b = 209)		(n^b = 20)
Characteristics of participants	Mean/Freq	SD/%	Mean/Freq	SD/%
Posts per participant	2.65	(3.74)	4.15	(5.02)
Participants who identified the relationship with PWD	119	(56.9)	16	(80.0)
Participants who did NOT identify the relationship with PWD	90	(43.1)	4	(20.0)
Relation with caregiver
Parent	81	(68.1)	7	(43.8)
Mother	59	(49.6)	6	(37.5)
Father	13	(10.9)	–	–
Mother-in-law	7	(5.9)	1	(6.3)
Father-in-law	2	(1.7)	–	–
Spouse	18	(15.1)	4	(25.0)
Wife	7	(5.9)	2	(12.5)
Husband	11	(9.2)	2	(12.5)
Grandparent	4	(3.4)	1	(6.3)
Grandmother	2	(1.7)	–	–
Grandfather	1	(0.8)	–	–
Grandmother-in-law	1	(0.8)	1	(6.3)
Self	2	(1.7)	–	–
Sibling	1	(0.8)	–	–
Multiple care recipients	13	(10.9)	4	(25.0)
Both parents	9	(7.6)	3	(18.8)
Others^c	4	(2.0)	1	(6.3)

Note. ACA = Affordable Care Act; PWD = people with dementia.

Number of posts and threads. ^bNumber of participants. ^cOthers include (a) father + husband, (b) grandmother + mother, and (c) mother-in-law + husband.

Results

Tones of the ACA Posts and Health Care System Discussions

Table 3 presents the type and frequency of each tone in posts mentioning the ACA. The three tones were relatively evenly distributed in the TS, although the proportion of negatively slanted posts (n = 190, 37.2%) was slightly higher. In the AS, the proportion of posts with a negative tone was 60%, whereas only 16% had a positive tone. More than half of the posts revealing caregivers’ attitudes toward the ACA had a positive tone (n = 26, 52.0%).

Table 3.

Tones of Caregiver Posts Revealing Attitudes Toward the ACA.

Tones	Overall tones of the posts				Attitudes toward the ACA
	Total sample (n = 514)		ACA sample (n = 50)		ACA sample (n = 50)
	Freq.	%	Freq.	%	Freq.	%
Positive	145	(28.4)	8	(16.0)	26	(52.0)
Neutral	176	(34.4)	12	(24.0)	2	(4.0)
Negative	190	(37.2)	30	(60.0)	18	(36.0)

Note. ACA = Affordable Care Act.

Figures 1 to 3 show changes over time in tones of the posts and attitudes toward the ACA. In the TS, a negative tone that implies concerns, complaints, or critiques was dominant in 2012 to 2013 and 2015, while posts with a neutral tone that purposed to deliver factual information, resources, or tips for caregiving continuously increased since 2014 (Figure 1). Although the increasing pattern of neutral posts was observed in the AS as well, the direction of the negative tone in 2017 was different (Figure 2). After 2016, the presidential election year, negative posts sharply increased. Similarly, negative attitudes toward the ACA were predominant in 2012 to 2013, largely decreased from 2013 after the federal government and some states launched exchanges, but suddenly increased in 2017 (Figure 3). Positive attitudes toward the ACA continuously increased throughout the timeframe of the study.

Figure 1.

Tones of caregiver posts in the total sample.

Figure 2.

Tones of caregiver posts in the ACA sample.

Figure 3.

Attitudes toward the ACA in the ACA sample.

Context, Perception of, and Experience With the ACA and the Health Care System

Theme 1. Concern about placement decisions and care expenses for PWD

Figure 4 depicts a conceptual map of the themes that represent the context for making a decision about care transitions for the PWD. The ACA appeared as both a complaint and a solution in the context that caregivers felt challenged with both the caring and cost for placement among different placement options, ranging from home care to nursing home placement. Caregivers’ posts about their experiences about relevant systems were summarized as a concern about the financial burden of caring for their family member living with dementia.

Figure 4.

Decision-making for placement of care receiver and caring cost concerns: Thematic web.

Caregivers face insurmountable expenses related to the cost of long-term care facilities, especially in the transition phase. This financial concern commonly appeared in relation to gaining eligibility for Medicaid to cover the expense of a long-term care facility or hospice. Caregivers noted the lack of coverage offered through Medicare, which was linked to various criticisms of the nursing home industry and insurance companies, excerpts (a) and (b):

(a) . . . the nursing home was so greedy. They didn’t tell me that my dad qualified for hospice and that I could nurse him at home. (ACA-2013-050)

(b) . . . Medi-Gap insurance does NOT pay either as they will only pay a portion of what Medicare does. No Medicare coverage; no Medi-Gap coverage. (ACA-2016-120)

The ACA was discussed along with in-home care services and Medicaid as both a barrier and a benefit. Initially, caregivers tended to perceive the ACA as an unpromising policy that prevented their PWD from getting Medicaid benefits, which was crucial for covering long-term care expenses—whether in-home or in a facility. Specifically, caregivers living in particular states that added restrictions to Medicaid eligibility or launched new programs due to the ACA often had adverse experiences with the complicated qualification criteria and evaluation process to gain eligibility, as illustrated by the following excerpt (c). However, a group of caregivers that posted well into the implementation of the policy was favorable about the ACA for covering the expense of in-home care for their PWD, like excerpt (d).

(c) We were told that there are changes currently being made nationwide that will make it even harder to get qualified for home health care, too. (ACA-2013-018)

(d) I can give my mother much pleasanter surroundings and quality of life things for a fraction of a cost of an institution. Her disease has progressed very slowly here with us from what I can observe. (Affordable Care Act-2015-005)

Theme 2. Skepticism about a government-supported health care system

Skepticism about a government-supported health care system emerged as a second theme in the context of handling various caregiving roles. Numerous concerns and experiences of caregivers working with public agencies were encapsulated as caregiving roles in three categories: medical, legal, and financial advocate (Figure 5). The ACA was frequently mentioned in connection with Medicaid. Negative experiences working with government agencies and health care systems were summarized as complicated and long processes, overwhelming yet inaccurate information, and concerns about unfriendly staff and inappropriate referrals. Finally, skepticism about the health care system and government-led programs was extracted as an underlying theme.

Figure 5.

Overwhelmed caregiving role and stress connected with government programs and health care system: Thematic web.

Caregivers faced multifaceted struggles in relation to navigating the intricate health care system and government payment programs. ACA-related posts frequently appeared with health care advocacy themes, specifically relating to Medicare and Medicaid. When caregivers worked with health care providers and staff from government agencies on behalf of their PWD, they encountered multiple adverse interactions such as inaccurate or unreliable guidance, erroneous advice from untrained staff, inefficient administrative processes, overwhelming paperwork demands, and unprofessional attitudes of staff, specifically during the early years of the implementation of the ACA, see post (e).

(e) Everyone can call all day long and get different responses from different people you talk to. . . . Just what you’re being advised by someone on the phone who may or may not be aware of all the details themselves. (ACA-2013-034)

Theme 3. Caregivers’ well-being and concerns about health insurance

Caregivers’ well-being regarding financial security and their own health emerged as a third theme (Figure 6). Quitting a job and changing one’s employment status to take on caring roles for the PWD often led to concerns and difficulties with finances and health insurance due to reduced income and the loss of resources covered by an employer, excerpt (f). In relation to caregivers’ own health and well-being, the ACA was positively viewed by caregivers. Some caregivers shared about the benefits of the ACA and their concerns about repealing of the ACA, as illustrated by excerpt (g).

(f) We are lucky to be able to pay our bills, eat what we want . . . (But), we don’t go anywhere anymore together except to doctor and dentist appointments. (Affordable Care Act-2017-046)

(g) What am I supposed to do when they kill the ACA, work full-time AND do live-in care 24/7? That is physically impossible . . . (ACA-2017-053).

Figure 6.

Caregivers’ concerns about their own health and financial security: Thematic web.

Discussion

The current study analyzed online forum discussions reflecting caregivers’ experiences and perceptions during the health policy reform period. Findings demonstrated that caregivers’ views about the ACA became increasingly positive over time, whereas their views of the health and social care system, in general, were more likely expressed in negative terms. Three key themes emerged: (a) concerns about placement decisions and the expense of caring for PWD, (b) skepticism about government and health care systems being supportive of caregiving roles, and (c) concerns about caregivers’ own well-being and health coverage.

Trends in Attitudes Toward the ACA

Trends in attitudes toward the ACA among caregivers were similar to those of the general public with mostly negative opinions in the beginning years transitioning to more positive views later on (The Henry J. Kaiser Family Foundation, 2017). National surveys in 2010 and 2012 showed that more than 50% of Americans did not understand the health care reform though most people favored most elements of the ACA (Gross et al., 2012). Likewise, caregivers in the current study expressed much confusion with the overwhelming amount of information about changes in health care brought about by the ACA, some of which was inaccurate, as well as with the complex and inconsistent services. Given health care reform was an abrupt change in the American health care system, it is understandable that there was tremendous resistance and confusion among the public, especially in the early years of implementation. Nevertheless, there are lessons to be learned by reviewing the process of policy implementation.

This study found that caregivers experienced a lack of understanding of the underlying health care system that was compounded by the ACA changes, which led caregivers to be confused and skeptical about government-led programs for family caregivers. The federal administration that pursued the ACA made extensive efforts to expand health insurance coverage, including developing an online Marketplace where eligible consumers can purchase insurance plans, streamlining the application process with relevant programs such as Medicaid and Children’s Health Insurance Program (CHIP) in one application, and educating the public through diverse mass media (Ho, 2015). Ironically, the efforts and goals of the policy were often misunderstood by potential consumers, especially in the beginning years. One possible reason for the discrepancy between the intended goals of the policy and perceptions among caregivers is an ineffective method of communication. Conflicting information from different media did not help caregivers to understand and use the programs. Indeed, the federal government allowed each state to choose to opt-in or opt-out of the Medicaid expansion option, each state had authority to adjust the eligibility criteria and the content of the services and programs, and thus, the ACA has been applied differently in each state. Because of the between-state variance in implementing the ACA, confusion and misunderstandings among potential users, including caregivers, were exacerbated.

Concerns About Placement Decisions and the Expense of Caring for PWD

This study found that caregivers considered the ACA when they face challenges in placement decisions for PWD, especially related to the concern about expenses related to care options. Transitions between care settings are very common for PWD (Callahan et al., 2015; Hirschman & Hodgson, 2018). Using nationally representative data from 1999 to 2008, Callahan et al. (2015) found that nearly 60% of PWD who stayed in a nursing facility transitioned to a hospital and about 34% transitioned from a hospital to a nursing facility. More than 52% of the study population returned home from the hospital without home care services and 25% transferred from a nursing facility (Callahan et al., 2015). Such fragmented care in transitions is associated with poor outcomes for PWD and their caregivers, including extra health care expenditures (Phelan et al., 2012). Moreover, because placement decisions often occur during unplanned situations, it is stressful for caregivers and care recipients to experience difficulties in communication with care professionals due to a lack of accurate information and support and ineffective coordination by care professionals (Kable et al., 2015). Focusing on transitional care that centers on the person and family in the care process, a systematic review analyzed 130 papers and highlighted several effective approaches in care transitions, such as involving caregivers and care recipients at the goal establishment stage, educating and communicating with family caregivers, and creating effective interprofessional care teams (Hirschman & Hodgson, 2018). Likewise, our results emphasize the importance of policy competency of care professionals to provide comprehensive support for caregivers and PWD.

Skepticism About Government-Led Health and Social Services

Skepticism about government-led health and social programs was one of the critical themes uncovered in this study. Besides the ACA, caregivers often have difficulties encountering complex health and social service systems in their usual caregiving life (Broda et al., 2017; Peel & Harding, 2014). Thus, the key for helping caregivers to be better informed about new policies and to get into the health and social service systems would be proper guidance that helps them to trust and feel confident within the systems. What, then, is the most effective approach to communicate with and inform caregivers? Meyer et al. (2019) found that caregivers tend to trust the information provided by health care providers. Thus, a strategic approach for federal and state government policymakers is to first enhance policy knowledge among health care professionals. To do that, aggressive training and continuing education of professionals and students who are working in the health care settings should be pursued. Also, family-centered communication in health and social care settings would be desirable to assist caregivers in a professional manner. Also, efforts are needed to improve caregivers’ health system literacy, so they are empowered to make well-informed decisions for their care recipients and themselves. Our findings reinforce the call to enhance family caregivers’ literacy about the health care system to ensure that the burden that caregivers face is not intensified by their experiences accessing health care for themselves or their care recipients (Fields et al., 2018).

Concerns About Health Care Expenses

More importantly, concerns about health and long-term care expenses for PWD, especially in care transitions, as well as for caregivers themselves were key topics discussed among caregivers in a national online forum. Given the complexity of dementia caregiving for the fast-growing older population, the longevity of PWD, and complicated techniques and medications that caregivers need to learn in caring for their PWD (National Academies of Sciences, Engineering, and Medicine, 2016; Reinhard et al., 2019), caregivers’ financial burden, as well as care burden and stress, is likely to increase over time. Some methods were suggested to reduce care cost, such as including caregivers in care transition programs and educating caregivers to enhance their capacity to identify risk signs of PWD to prevent unnecessary hospital visits (Coleman et al., 2006). These suggestions, however, seem to remain in the traditional hegemony that emphasizes the family’s responsibility of care that would push caregivers to fit into existing systems. As our research findings show, existing public policy and services are improper to promptly cover the unmet financial concerns and needs of family caregivers. More efforts from practitioners, researchers, and policymakers in gerontology and Alzheimer’s communities are needed to include the financial challenges and care cost issues on the national health agenda.

Moving forward, efforts are needed to make fundamental changes in health and social care systems. Using cultural hegemony theory, Levitsky (2014) explained the underutilization of established public services for caregivers. The prevalent belief among family caregivers that caregiving is a family’s responsibility, which is constructed by government’s hegemony in the United States, restricts them from seeking help outside of the family. The current study, however, identified that at least a segment of caregivers did seek help and interact with various government agencies and health care systems to advocate for their care recipients. In sum, some caregivers are aware of the help and seek assistance while there remains a gap in the actual use of available services.

In this sense, adding to Levitsky’s (2014) cultural hegemony hypothesis, our findings suggest another explanation at the psychological level. Practically, it is imperative for family caregivers to seek help outside of the family due to the extended caregiving period and the increase in health care costs. However, while working with various staff to get an answer or proper assistance, caregivers often face repetitive challenges within the health care and social service systems. Such challenges may lead to “learned helplessness” and even giving up on seeking help. Considering that family responsibility is a strong belief among caregivers, they tend to handle the undesirable experiences and difficulties working with health care systems privately or even internalize failures as their own fault. Thus, it is imperative to make a paradigm shift to social care, providing coordinated social support services from the public sector to share caregivers’ responsibilities and to meet their unmet needs as a civil right. This approach can accelerate the use of social support services, reduce care burdens of individual caregivers, and increase the quality of care and health outcomes for both caregivers and PWD.

As communication technology has progressed, caregivers have migrated to online platforms to access help and information. Notably, the current pandemic situation across the world demonstrates the imperativeness of online platforms, such as online communities, blogs, video conferences, or online chatting, to access timely assistance and connect with each other. Thus, proactive online advocacy for caregiving families can be one way to enhance caregivers’ awareness of their needs, recognize and share possible information and resources, and advocate for changes in health care systems.

An online platform would be an ideal venue for caregivers to network with each other, sharing information and peer support, and advocating for change as a united voice. Recently, federal and state-level governments have provided support programs for the PWD and their caregivers, focusing on promoting early detection and diagnosis, person-centered care models, and coordinated care transitions (Thornhill & Conant, 2018). Nevertheless, the findings of this study show remaining gaps for caregivers to access support from the public sectors. Social isolation is a critical barrier that compounds the challenges in accessing information and services to assist with caregiving activities (Reinhard et al., 2019). Thus, online advocacy could be a powerful approach to encourage discourse among caregivers about their experiences working with larger systems, raise awareness of the problems, assist them to recognize their influence to change the policies, and claim their rights.

Limitations

Our study should be interpreted in light of the possibility of sample bias. Although the Alzheimer’s Association caregiver forum is nationwide, sampling from one site could cause selection bias considering that there are many more online peer support groups for caregivers. The inability to control the quality of the sample (e.g., self-selection, limited eligibility criteria, and different participation rate) may decrease the generalizability of the study findings. However, the caregiver posts from social media can be considered authentic data because they were unsolicited for the purposes of research, which reduces social desirability effects from research participants that traditional forms of research commonly cause (Ignatow & Mihalcea, 2017). Another limitation is a paucity of demographic information about the participants. The literature reports significant associations among demographic characteristics, including age, education, and income level, with internet use among middle age and older people (e.g., Kim, 2015). Thus, our findings may have less generalizability to represent older people with lower socioeconomic status, whose lack of access is likely to affect the amount of care received. For future health care policy studies, empirical data are needed to accurately estimate how many and which caregivers experience difficulties and benefits of health care policies and services. Despite the limitations, through examining the rich and detailed data that represent the experiences that were not able to be captured through traditional forms of data, the current study contributes to making caregivers’ voices heard.

Conclusion

Family caregivers are a critical component of the health care continuum for individuals with chronic illnesses such as dementia, and thus, their perspectives are essential to enhancing the operation of that continuum. Health and social care professionals and policymakers working with Alzheimer’s patients and their families should be empowered to develop and support a family-centered service system. Continuing education of care professionals and social service providers is vital to ensure that caregivers receive unbiased, accurate, and updated guidance. Online technology can be leveraged to help caregivers access timely individualized information, receive coordinated services from public or nonprivate sectors, and raise their voices to advocate for a family-friendly care system. Finally, policy efforts that consider the value of informal care as an essential aspect in building public policy, such as universal health and long-term care programs, are needed.

Footnotes

Declaration of Conflicting Interests

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

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This article was funded by the National Association of Social Workers/Council on Social Work Education HEALS Doctoral Fellowship, sponsored by the New York Community Trust Fund.

IRB Human Subject Approval Numbers

N/A (Reason: nonhuman subject research). The Indiana University Institutional Review Board considered this study nonhuman subject research that does not require approval due to the deidentified characteristics of the study data. We obtained permission from the Alzheimer’s Association for using the online forum data for this research.

ORCID iDs

Eun-Hye Grace Yi

Margaret E. Adamek

References

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