Abstract
An interpretive analysis of 38 state dementia plans compares similarities and differences in diagnostic framing (problem identification/trends/issues), prognosis framing (addressing the problem), and motivational framing (calls for action) across plans. In framing diagnosis, only 6 plans used dementia alone in their titles. In framing prognosis and the subsequent call to action, state plans were consistent in their dire prognostications about the progressive and fatal consequences of the disease with a primary focus on the cost. Motivational language mirrored that of the Alzheimer’s Disease (AD) Movement, from raising awareness to using inflammatory words to incite action. The language used set up the frame for clinical interventions that may not distinguish between types of dementia and could undercut the provision of person-centered care, shifts the victimization focus from persons with AD to caregivers and ultimately the state, and may subintentionally reflect cultural biases.
Keywords
In this article, we used framing theory to conduct an interpretive analysis of 38 dementia state plans as part of the Alzheimer’s Disease (AD) Social Movement. We compared and contrasted similarities and differences in diagnostic framing (problem identification, trends, issues), prognosis framing (addressing the problem), and motivational framing (calls for action) across plans (Benford & Snow, 2000; Snow & Benford, 1988). Placed in the context of the AD Movement, language used in state dementia plans offers unique insight into the Movement’s influence on policy, including the manner in which state leaders identify dementia-related issues, recommend strategies for addressing them, and call others to action.
We begin with a brief background of the AD Movement. Description of the methods used to conduct the analysis and findings are followed by implications for policy and practice.
Background and History of the AD Movement
In 1978, the National Institute on Aging (NIA) held the first national symposium on AD, which was followed in 1980 by the first Congressional hearing on the subject. These national public events recognized that AD and other dementias were not part of normal aging and required “a concerted policy response” (B. Kaskie, Knight, & Liebig, 2001b, p. 383). The forthcoming responses to those groundbreaking events spearheaded further national, and jumpstarted state level, efforts to address AD. In 1984, a national network of Alzheimer’s Disease Research Centers was established through Public Law 98-249 that, according to Chaufan, Hollister, Nazareno, and Fox (2012), focused on biomedical research needs and ignored long-term supports, services, and caregiver needs altogether (p. 793).
Meanwhile, 26 states developed the “first wave” of state plans to address AD, with 23 in the 1980s and another 3 in the early 1990s (Baumgart, 2014). Although many of these state plans were not fully implemented and despite the latent assumptions embedded in Public Law 98-249, the primary function of increasing public awareness was achieved. Research scholars turned their attention to this new disease movement and federal public policies targeted AD and other dementias with a specific emphasis on funding “efforts to find a cure or treatment for the disease” (B. Kaskie, Knight, & Liebig, 2001a, p. 28).
In 1989, Fox (1989) began documenting the history of the AD Movement. He described its emergence as having been championed by a collaboration between research scientists who had shifted the disease to a major health concern with the support of neuroscientists with particular interest in the area, representatives from the NIA, and an alliance of professionals and caregivers who formed the Alzheimer’s Disease and Related Disorders Association (ADRDA; now the Alzheimer’s Association). As the movement accelerated, alliance members connected with media and Congressional representatives to heighten awareness and to push for more AD research.
Chaufan and colleagues (2012) pointed out that social movements need unifying constructs to maintain political momentum, and the AD Movement gained increasing speed when national attention shifted from focusing on senility in old age to the urgent need to fight a named disease that could affect persons regardless of age (Beard, 2004). In 2012, Chaufan and her colleagues declared that “the medical model implicitly establishes a race against the demographic clock, which pits advances in AD research against the needs of an aging population” (Chaufan et al., 2012, p. 789). The authors proposed “that alternative framings and sources of legitimization are needed to better address the needs and preserve the humanity of persons living with AD” (Chaufan et al., 2012, p. 789). In essence, AD became the lightning rod for resource mobilization to address a potential threat to persons of any age (albeit more likely as one became older) across population groups. Given this imminent threat, the fight against AD gained bipartisan support as politicians and consumers from diverse ideologies joined forces (Chaufan et al., 2012).
Moving into the 1990s, U.S. state and national policies benefiting individuals with dementia rapidly increased. Not only were there increases in policies that indirectly benefited AD caregivers, but there was also an emergence of policies that targeted the unique needs of persons with dementia and their caregivers (often referred to as dementia-capable). For example, a dementia-capable state policy on adult protective services might highlight the importance of training workers to assess, identify, and intervene with persons who had dementia, or, at the national level, the 2006 amendments to the Older Americans Act, which provided specific policies for dementia services and supports for caregivers of persons with dementia, regardless of age (B. Kaskie et al., 2001a). More recently, Lin and Lewis (2015) compared and contrasted the use of terms such as dementia friendly, dementia capable, and dementia positive in the national plans of 13 countries. They conclude with a proposed vision statement for the U.S. national dementia plan in which the United States “is a dementia-friendly community whereby all individuals with dementia and their families are empowered to live a meaningful life, inspired by dementia positivity, and well taken care of by a comprehensive, integrated dementia-capable alliance” (p. 243).
In the first analysis of state policies benefiting persons with dementia, B. Kaskie and his colleagues (2001a, 2001b) illustrated how others could “establish a reliable method of collecting state laws” (p. 31). These scholars identified eight categories of state legislative actions that targeted individuals with dementia: direct services (across a continuum of care), government organizations, insurance, justice, protective services, research, revenue and finance, and miscellaneous. Their research revealed tremendous variation across states, leading to the conclusion that “no single type law was enacted by every state, and no single state enacted every kind of law” (p. 41). In terms of policy formation, B. Kaskie and colleagues (2001b) found that “state laws pertaining to persons with dementia were associated with the advocacy effort of the Alzheimer’s Association, the number of legislative champions, the supply of special care beds for persons with dementia, and recent legislative activity” (p. 392). Most recently, B. P. Kaskie, Nattinger, and Potter (2015) reviewed state policies regulating how assisted living facilities treat residents with dementia and assessed the potential of developing minimum regulatory standards across states.
Over the last decade, the AD Movement has continued at a rapid pace (Chaufan et al., 2012). In addition to the continued increase in the number of policies directly and indirectly benefiting individuals with dementia or caregivers and in response to increased public awareness, many states have focused on passing dementia-capable enabling legislation to create commissions, task forces, expert panels, and a host of other groups to develop statewide strategic plans, laying the groundwork for a second wave of state dementia plans in the first two decades of the 21st century (Baumgart, 2014). Having shortened its name in the late 1980s, the National Alzheimer’s Association started a campaign to revive the state plan movement in 2006, citing three driving forces: (a) state plans could focus on the diverse needs of their specific population mix and target services accordingly, (b) state and local funds could be targeted, and (c) states could provide services/benefits not provided by the federal government (Baumgart, 2014). Since the 1980s, the Movement that began heavily focused on research has since expanded to include lay and professional people from every walk of life who have known friends or cared for loved ones who have been diagnosed with dementia of some type, subsequently leading to an increased focus on diagnosis, treatment, long-term supports and services, and caregiver needs in addition to the original research-focused goals.
Furthermore, and in contrast to the first wave of state plans, which were an outgrowth of national efforts, second-wave state plans seem to have spurred a renewed coordinated national response resulting in the passage of the National Alzheimer’s Project Act (NAPA) in 2011 and, subsequently, a National Plan to Address Alzheimer’s Disease in 2012 (updated in 2013 and 2014).
Today the Alzheimer’s Association’s website provides links to every state plan as soon as it is published. By September 2014, the Association indicated that 40 states already had or were involved in developing state plans and provided links to 38 statewide plans (including the District of Columbia), plus a plan for San Francisco and two earlier plans for Illinois and New York (Alzheimer’s Association, 2014). In addition, Hoffman (2014) highlighted the major focal points and recommendations within state plans. He emphasized how early adopter states such as New York and California issued plans with best practice elements, the inclusion of multiple stakeholders in plan development, the importance of coordination in addressing gaps in the provision of care, and the difficulty in providing quality care. Hoffman (2014) attested to the “largely aspirational” nature of state plans that face “immense challenges” in implementing what needs to be done (p. 563).
Between the Alzheimer’s Association’s website, Hoffman’s (2014) overview, and the availability of the plans themselves, plan content and recommendations are readily available. Yet the meaning behind the carefully chosen words used in state plans tells a story about how the AD Movement has been framed. In our content analysis, we sought to interpret the meaning of the linguistics used in state dementia plans. To do so, we used a framing theory perspective.
Method
In September 2014, we downloaded the 38 available dementia state plans from the Alzheimer’s Association website and conducted a thematic analysis of these plans using Benford and Snow’s (2000) work as a conceptual guide. Benford and Snow used framing theory to better understand social movements as units of analysis, and we wanted to apply framing theory to what is happening in regard to what has been increasingly referred to as the AD Movement (Fox, 1989, 2012). Chaufan et al. (2012) pointed out how important framing alternative explanations is when considering policies that relate to AD, and we viewed state plans as policy initiatives. We wanted to determine how different states were framing their definitions of the problem, their state’s responses and recommendations, as well as how there were motivating key participants to move forward. Thus, we used what Benford and Snow characterized as three framing tasks: diagnostic, prognostic, and motivational. These tasks resulted in the following research questions:
We recognize that the framing language of “diagnosis” and “prognosis” may be confusing given the context of those words in the clinical identification and treatment of dementia. Therefore, we emphasize that we use these terms to describe policy language used to identify the macrolevel dementia issues and solutions as opposed to microlevel clinical terminology. Specifically, Benford and Snow (2000) used diagnostic framing to refer to how a problem is identified and analyzed. For example, diagnosis as a policy term refers to how problems are framed, understood, and explained in the public discourse. Dementia plans contain statistics (data) and information about the challenges faced by individuals, groups, and whole societies when large numbers of people are affected. These data and information lead to diagnostic framing—focusing on what is considered to be a large-scale problem. Prognosis is about how the problem will be addressed, and what will be done about it as a social concern. Thus, prognostic framing refers to the actions and interventions proposed to do something about the problem on a community or societal level. Motivational framing language (calls for action) is probably least confusing of the three types of framing. It is important to note that when used in the context of a social movement, motivational framing is intended to mobilize groups, organizations, communities, and even whole societies to take action.
We began with a comprehensive review and coding of plans to identify salient framing themes. Specifically, we electronically searched the content of the 38 plans for terms used to frame diagnosis, prognosis, and motivation. For diagnosis, we first examined plan titles, identified terms used to describe and analyze the problem, searched for how AD and dementia were defined, which term (AD or dementia) was primarily used, whether “related disorders” or “related dementias” were included in definitions, and whether those disorders were stated and defined. We systematically searched for themes identified as part of the movement such as the difference between AD and normal aging, demographic issues related to the enormity of the problem and certain characteristics such as race, ethnicity, and an aging population that were seen as exacerbating the problem. In the process, we were open to the emergence of other terms or themes not previously identified and recorded those according to which plans in which they appeared.
Furthermore, we searched for how prognosis was framed by examining the history, organizational structure, and authorities involved in both developing the plans and the entities responsible for implementing them as well as recommendations for action. Finally, we searched for terms used to motivate constituents to join with or embrace the plan’s intent; in other words, those terms that called for action to address the magnitude of the problem (e.g., crisis, public health crisis, epidemic, and burden). Similarly, in this emergent process, as new terms were identified in one state plan, we would search to see how broadly it was used by searching all plans for those same terms.
Diagnostic, Prognostic, and Motivational Framing
Framing Diagnosis (Problems/Trends/Issues)
Plan titles varied, some being called reports, others action plans or roadmaps, with still others having descriptive titles such as “Conquering the Specter of Alzheimer’s Disease in South Carolina.” Titles also varied in the use of language related to dementia (the broader concept) to only using AD in the title. Seventeen states (including the District of Columbia) referred to AD alone, 16 other states referred to AD and Related Dementias or Disorders, and 6 states used dementia without including AD in the title. See Table 1 for plan titles.
State Plan Names and Release Dates.
Regardless of title, within every plan dementia was referred to as a broad term in which AD was a predominant type. Frequently used was the phrase “Alzheimer’s Disease and other types of dementia” when generalizations were being made. Numerous plans included footnotes such as “Whenever the terms ‘Alzheimer’s’ or ‘Alzheimer’s disease’ are used in this report, they should be understood as ‘Alzheimer’s disease and other dementias’ unless otherwise indicated” (Minnesota Board on Aging, 2011, p. 13) or “Because Alzheimer’s is the most common form of dementia, [this plan] focuses on Alzheimer’s and uses the term ‘Alzheimer’s’ or ‘Alzheimer’s Disease,’ but where appropriate the use of this terminology also is meant to encompass other forms of dementia” (Alzheimer’s Association, West Virginia Chapter, 2011, p. 5).
Other states were less inclined to lump diagnostic categories under an Alzheimer’s shorthand. For example, Virginia’s plan stated “Although Alzheimer’s disease is the most common type of dementia, increasing evidence from long-term observational and autopsy studies indicates that many people with dementia have brain abnormalities associated with more than one type of dementia” (Virginia Alzheimer’s Disease and Related Disorders Commission, 2011, p. 5). Another plan explained, “A person who suffers from Alzheimer’s disease will at some point experience dementia, which is characterized by, among other things, a loss of short term memory. However, not everyone who has dementia has Alzheimer’s disease” (Idaho Alzheimer’s Planning Group, 2013, p. 5). Most states referred to multiple diagnostic categories of dementia. For example, “The term ‘Alzheimer’s disease’ used in this plan refers to Alzheimer’s disease and related disorders. Consistent with the definition used in the national Alzheimer’s plan, related disorders include frontotemporal, Lewy body, mixed, and vascular dementia” (Alzheimer’s Association, Delaware Valley Chapter, 2013, p. 2).
Most plans referred to the ultimate prognosis associated with AD as the sixth leading cause of death in the United States (Alzheimer’s Association, 2015). For example,
Alzheimer’s disease (AD) is a progressive brain disorder that destroys brain cells, causing a steady decline in memory, mental abilities and the ability to perform usual activities of daily living. As the disease progresses, it affects one’s ability to remember, reason, learn and imagine. (Colorado Alzheimer’s Coordinatng Council, 2011, p. 6)
Another plan stated,
There is no cure for Alzheimer’s Disease and every person who develops this disease will die from its complications. Unlike other forms of dementia, it is progressive in nature and continues through cognitive and functional decline to total disability and death. (Texas Alzheimer’s Disease Partnership, 2010, p. 7)
Plans varied in how much space was devoted to describe the clinical prognoses of having AD or another type dementia; some were very detailed with references, others paid less attention to individual clinical prognoses and focused more on its larger impact on caregivers and the state.
Attention was paid to defining the population with dementia as well as the impact of dementia on families and larger systems within the state. Given the progressive nature of the disease, individuals were described as “living with Alzheimer’s” or “people with Alzheimer’s.” For example, “Within the next twenty years, the number of Californians living with Alzheimer’s disease will nearly double, growing to over 1.1 million” (California Alzheimer’s Disease and Related Disorders Advisory Committee, 2011, p. 4). Whereas only four plans used the term “victims” to refer to persons with dementia, families were occasionally called “hidden victims” (Task Force on the Effect of Alzheimer’s Disease in Arkansas, 2011, p. 6) or caregivers were referred to as “less visible victims” (Mississippi Department of Mental Health, 2011, p. 20) or “victims of compassion fatigue” (South Carolina Purple Ribbon Alzheimer’s Task Force, 2009, p. vii). “Millions of people are enduring the devastation of this disease that steals memories, independence, control, time, and ultimately life. Family members and friends struggle to provide and ensure exhaustive, round-the-clock care as their loved ones succumb to the disease” (Maine Department of Health and Human Services, 2012, p. 6).
There was great variability regarding whether specific population groups were emphasized in various state plans. The majority of plans addressed special populations in some way. In reviewing language used to describe various population groups, states varied widely in their categorizations of who were considered “special populations.” These categories referred to racial and ethnic groups and rural populations in some plans but referred to persons with certain types of dementia or other vulnerabilities in others, such as individuals with intellectual or developmental disabilities. For example, “During the public hearings, other population groups, representing those with an intellectual disability, those in the deaf community, those in the lesbian, gay, bisexual, and transgender (LGBT) community, expressed concerns regarding additional barriers in getting appropriate care” (Pennsylvania Alzheimer’s Disease Planning Committee, 2014, p. 8).
Most frequently, ethnic or racial groups, when identified, were African American and Latinos. A number of plans referred to special populations as racial and ethnic groups that were specifically identified due to anticipated increasing need or due to perceived health disparities. For example,
Dementia strategies must also be effective for the state’s diverse populations. Within the state, 46.7 percent of the total population is Hispanic and 10.1 percent is Native American Indian . . . These groups constitute a majority of the state’s population. Older Hispanics are about one and a half times more likely to have dementia compared with older Anglos, according the 2013 Alzheimer’s Disease Facts and Figures. (New Mexico Alzheimer’s Disease Task Force, 2013, p. 17)
Although several plans addressed demographic and trend shifts or referred to the “Dementia System Landscape” (Vermont Department of Disabilities, Aging & Independent Living, 2009, p. 3), a number of plans referenced only national data, extrapolating the existence and special needs of certain ethnic groups. For example,
While Minnesota-specific prevalence data on AD among ethnic, immigrant and tribal communities [are] not available, experts believe that Minnesota’s experience is consistent with national trends. These trends indicate that African-Americans and Hispanics have higher rates of Alzheimer’s disease and other dementias at all ages than do whites. (No national data appear to be available on Asian or American Indian populations.) (Minnesota Board on Aging, 2011, p. 21)
Finally, some plans described cultural differences that may impact service delivery and caregiving, thus serving to frame the diagnosis even further. For example,
The burden of dementia is falling heavily on Hispanic/Latino families, particularly daughters and other female relatives, in part because of the strong sense of responsibility and the role of women in these communities but also because of the lack of culturally and linguistically appropriate and responsive health and community services. (Vermont Department of Disabilities, Aging & Independent Living, 2009, p. 4)
In summary, diagnostic framing in the majority of state plans focused heavily on the clinical diagnosis of AD as a shorthand for dementia, bringing AD to the forefront as a macro problem given its scope and progression. Demographic projections emphasized the scope of the problem and depending on the state’s population mix focused on specific population groups. Seen as a leading cause of death, AD’s impact on the individual, family, and larger society revealed the urgency of the diagnosis as a social problem.
Framing Prognosis (Addressing the Problem)
Nine second-wave plans were created by groups that were already in existence, whereas 28 plans were created by recently formed groups with the goal of drafting a state plan. Twenty-seven plans were drafted as a result of state legislation or official government order (e.g., an executive order), whereas 10 plans were developed by interested groups and state agencies without a formal order. Of those developed initially without formal orders, 2 were started by interested third-party groups and then later officially recognized with legislation.
Plan administration was placed in various state government units. Fourteen plans were under departments or agencies of aging and elder affairs (DC, FL, GA, IN, IA, ME, MA, MN, NM, PA, TN, UT, VT, and VA), 6 in departments or agencies of health (CA, IL, LA, MI, NY, and TX), 7 were shared between health and aging departments or agencies (DE, HI, MD, MO, KY, OK, and WI), 4 were placed under legislative branch organizations (AR, CO, CT, and NV), 3 under nongovernmental organizations (ID, OR, and WV), 2 under offices of lieutenant governors (SC and RI), and 1 in the department of mental health (MS; see Figure 1).
Placement of oversight for state dementia plan administration.
All plans provided recommendations for action in various formats. These recommendations had already been categorized by the Alzheimer’s Association (2014) as follows:
1) public awareness, 2) early detection and diagnosis, 3) care and case management, 4) quality of care, 5) health care system capacity, 6) training, 7) workforce development, 8) home- and community-based services, 9) long-term care, 10) caregivers, 11) research, 12) brain health, 13) data collection, 14) safety, 15) legal issues, and 16) state government structure. (p. 1)
Under each theme, verbatim wording that appeared in each state plan was listed, allowing the reader to compare statements across states. Because these categories are readily available, our intent was to analyze how they were framed with what emphases, rather than detailed content.
Recommendations and action steps were framed in collaborative, partnership, and coordinative terms. Wisconsin (2014) went so far as to entitle their plan a “system redesign” in which an overhauling of the entire system of care was systematically laid out(Wisconsin Department of Health Services). Plans referred to leveraging or mobilizing resources in new ways, working with long-term care systems, accessing universities and colleges to develop training programs, and developing dementia-friendly environments. In referring to the changing demographics in terms of prognostic framing and the potential for minorities to assist with service delivery, Colorado saw the increasing population of immigrants as a possible solution to long-term care needs, noting that the effects of an aging population are likely to compound the effects of the projected shortfall of long-term care workers. Immigrants were seen as an important source of the long-term care workforce, particularly home-based caregiving as well as in nursing homes (Colorado Alzheimer’s Coordinating Council, 2010). In short, plans acknowledged the increasing demands to work across systems and to fully engage persons from all walks of life in finding solutions.
Continuing to assess language around special populations within plans, we noted that plans often referred to the need to be “culturally competent” in addressing the needs of persons with dementia and their caregivers. For example, “Given the growing racial and ethnic diversity of Vermont’s population, it will be important to develop culturally responsive programs to serve these families” (Vermont Department of Disabilities, Aging & Independent Living, 2009, p. 4). The Nevada Legislative Committee on Health Care (2013) described their approach to “cultural communities” and identified strategies to target minorities:
Disseminate information about the many aspects of Alzheimer’s disease and related disorders in a variety of languages to meet the needs of every person and caregiver, regardless of age, gender, language, physical or mental disabilities, race, regional or national origin, religion, sexual orientation, and socioeconomic status (p.1).
In summary, prognosis framing revealed how state plans were attempting to address the problem. Plans were developed by various formalized groups, and oversight was assigned to various state government units. Recommendations were plentiful, and collaborative efforts cut across all sectors of society.
Framing Motivation (Calls for Action)
Plans varied in the intensity of language used, but most were written in an active voice. Motivational language was used to frame calls for action, including appeals to the impending budgetary crisis if nothing is done, references to the devastating effects of the disease, and the eliciting of fears about the potential impact.
On the most macro level, at least 16 states used the term crisis to describe AD. For example, one plan stated that AD is “poised to become the greatest public health crisis facing the United States in the next decade” (Illinois Department of Public Health, 2009, p. 5), and another proclaimed that there is “urgency surrounding the need for Iowa to mobilize a state response to this public health crisis” (Iowa Department of Elder Affairs, 2007, p. 4). At least 7 states referred to AD as an epidemic. For example, “The number of people affected by Alzheimer’s disease, the most prevalent form of dementia, is growing at a faster rate than the progress being made in discovering the means to cope with this emerging epidemic” (Task Force on the Effect of Alzheimer’s Disease in Oklahoma, 2009, p. 8). Yet another plan proclaimed that
We are poised at the precipice of change in preparing our state for the silver tsunami that is coming. The age wave has crashed to shore and we are not ready. Alzheimer’s disease and the dementias are on the rise and we are not completely sure why. People are showing symptoms earlier and earlier and we can’t seem to stop it. (South Carolina Purple Ribbon Task Force, 2009, p. 6)
Florida’s plan declared “with 500,000 AD patients and a large elderly population at risk for ADRD [FL] is the epicenter of the ADRD epidemic in the U.S.” (Florida Department of Edler Affairs, 2013, p. 30).
In addition to these motivational words on the needs of persons with dementia, the theme of impending burden on caregivers or care partners and the state were used to incite action. All but four state plans used burden to describe the impact of caring for persons with dementia. Frequently used to describe what families face, plans used words such as “It also recognizes the health risks associated with the burden of family caregiving and compels California to develop more reliable measures of both Alzheimer’s and family caregiving” (California Alzheimer’s Disease and Related Disoders Advisory Committee, 2012, p. 19) or “Families who now bear much of the burden of caregiving should have access to cost effective supports to help them care for their loved ones at home” (Missouri Alzheimer’s State Plan Task Force, 2010, p. 29). Burden was also used to describe the impact on the state. “The unavoidable impact of the disease, which is the sixth-leading cause of death in America, promises to be a significant burden on the state and its healthcare industry” (p. 6) and “. . . the impact of the disease will be dramatic and unavoidable, placing Arkansas in a burdensome position” (Task Force on the Effect of Alzheimer’s Disease on Arkansas, 2010, p. 18). Burden was also used to describe the impact on legal and health care systems. For example, “Early recognition, treatment, and coordination of care for dementia, starting at the primary care point of entry, can mitigate the growing social and financial burdens on our health care systems, and on care partners” (Massachusetts Statewide Alzheimer’s Disease and Related Disorder State Plan Workgroup, 2012, p. 5).
In summary, motivational framing revealed an urgent need to take action and reinforced the impact of AD on caregivers. Of special note is that dementia plans moved toward addressing AD as the identified problem (rather than dementia in a more generalized manner) and stressed the cost of the problem to the larger system.
Implications for Policy and Practice
Many plans are a direct result of statewide legislative or executive orders, showcasing the next iteration of the AD Movement as well as highlighting the strong political forces behind it. Most plans came out of the statewide political process, garnering governmental recognition, and through the creation of groups that brought together key stakeholders, public health leaders, aging experts, and others to produce and stand behind a state plan for responding to dementia diseases. The frequent short time frame of less than 10 years from the start of getting official recognition through plan publication in many instances only further emphasizes the significance of these efforts.
Using AD as Shorthand for Dementia
In framing the diagnosis, only six plans used dementia alone in their titles. Eighty-four percent used either AD or AD and Related Dementias/Disorders. The caveat that when AD was used, related dementias were implied, provided the majority of states a type of shorthand that had already been embraced in the collective framing of the AD Movement, perhaps noted most visibly in the renaming of ADRDA to the Alzheimer’s Association. Thus, plan titles largely conformed to what Chaufan and colleagues (2012), members of the AD Movement and organizational leaders,
understood and accepted, even if some did so reluctantly, a medical ideology that emphasized the need to focus on one disease to avoid spreading the limited resources of the nascent movement too thin in attempting to address multiple diseases that caused dementia. (p. 792)
Beard (2004) took this line of thinking a step further, recognizing that the linguistic changes not only made the disease “a household word” but also shifted the definition of AD to include dementias of all ages, which “greatly increased the number of reported cases and led to its being perceived as a significant social and health problem” (p. 800).
This shorthand within plans, which by way of exclusion also serves to frame the diagnosis, has implications for individuals who are diagnosed with other type dementias in that they may automatically be lumped under one diagnostic category. There are also implications for practice intervention, implicitly assuming that treating one person with dementia is the same as treating another person. From a continuity perspective, in which people become more unique as they age, it is somewhat ironic that “AD” could be inadvertently used to diagnostically homogenize a growing number of persons with dementia. It is even more ironic that amid the push for person-centered care that all dementias are being lumped under AD as if all persons with this disease lose their distinctive identities and become the same. Although a number of plans implied in their recommendations that individuals with dementias should be carefully assessed to determine what type of dementia they might have or suggested ways to treat dementias that are indeed treatable, most plans used the AD shorthand. Thus, captured under the shorthand of AD, the clinical imperative to treat and even reverse some types of dementia could be subintentionally subjugated. Conversely, AD became privileged. From a policy perspective, one could argue that the motivational language needed to incite action would be softened if the complexity of understanding diversity amid persons with dementia was fully explicated.
Shifting the Victimization Focus
Benford and Snow (2000) suggested that diagnostic and prognostic framing foster or facilitate “agreement whereas [motivational framing] fosters action, moving people from the balcony to the barricades” (p. 615). They cite what they call a “plethora of studies” that point out the manner in which social movements “identify the ‘victims’ of a given injustice and amplify their victimization” (p. 615). In earlier days, advocates for persons with AD certainly used victimization language. Beard (2004) asserted that “depictions of ‘pathetic’ victims are essential tools for fund-raising, despite the fact that this is no longer the (only) picture to portray” (p. 806).
Clearly, the AD Movement and state plans have been very intentional in ceasing to refer to persons living with the disease as victims, but state plans often point out the “real” victims laid waste by dementia—families, caregivers, and the state. Thus, one set of victims may have been replaced by a much broader set, even though the language of victimization has gone out of vogue when referring to individuals with a disease. This shifting of victimization to the larger whole has consequences for persons who are diagnosed with the disease in that in a strange twist of fate they may have become the actual victimizers, for without them there would be no problem. Thus, in framing policies to focus on the emotional and economic costs associated with the provision of care, the individuals with the disease are diagnosed as the problem simply because they have the disease.
In further framing the prognosis and the subsequent call to action, state plans are consistent in their dire prognostications about the progressive and fatal consequences of the disease. A primary focus is on the cost to caregivers (families and friends) and ultimately to the state and its ability to provide health care. As our results indicate, the use of the term “burden” is riddled throughout the plans, beginning with immediate caregivers and extending to public budgets. It is in this dire prognosis that motivational framing occurs, with inflammatory language and calls for action. Statistics, emotional and moral appeals, and fear emanate from the majority of plans to motivate and mobilize resources. Benford and Snow (2000) saw this “call to arms” as “including the construction of appropriate vocabularies of motive” (p. 617). This includes words used in the diagnosing of the situation such as public health crisis and epidemic. Beard (2004) described this earlier when she said, “The mobilisation of resources that advanced and organized the AD movement occurred within a context of structural and socio-psychological conditions that contributed to the creation of a movement necessary to cultivate a presentation of AD as a significant problem” (p. 814). More recently, Chaufan and her colleagues (2012) spoke to the transformation by medical researchers of AD as a “rare medical condition into a ‘major killer’ and threat to the wellbeing of the elderly and their caregivers” (p. 789).
Subintentionally Reflecting Cultural Biases
The placement of the originator groups and agencies charged with plan administration serve to frame the prognosis. One of the diagnostic mantras of the AD Movement has been to intentionally dissociate the disease from “normal aging” in that attribution is focused on the brain abnormalities that do not appear to be something a person can control. State plans continue this mantra, clearly stating this difference. Yet, the largest category for placement of plan administration is in aging or elder affairs agencies. This placement of plan originator groups and agencies charged with plan administration in aging-focused agencies may present a difficult distinction that may be hard for plan audiences to see (Scodellaro & Pin, 2013). Furthermore, it may reinforce cultural biases that dementia is a normal part of aging and serve to conflict with what many plans seek to emphasize—that the whole population, people of all ages, should be concerned. In addition, it is important to point out that no other disease with age as a risk factor receives this treatment. For example, heart disease, diabetes, and cancer program activities are not typically housed in aging agencies.
An important rationale for writing state plans is that population mix greatly varies among states. In our analysis, we found that plans with particularly diverse populations emphasized the importance of cultural competency and drew from limited evidence to document need, sometimes referring to AD facts and figures and occasionally not citing any source at all. This is congruent with what Barnes and Bennett (2014) pointed out, that evidence regarding the prevalence and incidence of dementia among various population groups is extremely limited. Although not named as such, a theme that emerged across plans is the importance of recognizing intersectionality (Mattsson, 2014)—the interface of various status characteristics and identities such as age, race, and ethnicity with dementia. A number of plans stated assumptions such as prevalence and incidence of dementia go largely undiagnosed in minority populations, and families “take care of their own” not aware of the fact that dementia is not a part of normal aging. These assumptions frame the potential to marginalize diverse population groups. In these instances, explanations of the problem and the evidence (or lack thereof) on which decision makers and practitioners build their plans may subintentionally reflect majority cultural biases. In attempts to be sensitive to diversity, there is a danger of unwittingly contributing to institutionalized oppression. Instead of cultural competency, perhaps planners would do well to stress the need for cultural humility. Whereas competency implies the arrogance that practitioners can eventually know another culture, humility releases practitioner to learn from others and never to assume full knowledge. We have to ask the following question: Given diagnostic limitations, limited research, and the fact that diverse population members may not seek services, how do planners know that certain minority groups have higher instances of any type of dementia much less AD?
Recommendations for States Without Dementia Plans
States still developing or considering developing dementia plans may want to ask the same questions posed in this study—how do we want to frame the problem (diagnosis), the solution (prognosis), and the motivation to take action? Consider that language used in second-wave plans may have more impact than drawing from first-wave plans. But whatever language is used will set the tone. For example, deciding whether to use AD as a shorthand is a critical decision in which there is the potential to disregard different types of dementia.
Now that many states have plans, there is a wealth of resources to use as models for how to proceed. In viewing other plans, however, it is important to keep in mind that state plans are meant to be state-centric. In other words, plans should capture the unique nature of each state, its population mix, and its needs. In addition, even though it is helpful to know what is in the national plan, the tendency to extrapolate from national data can be misleading. State or local databases, needs assessments, and dementia studies are relevant to include in the state plan.
Inclusion of persons with dementia and their caregivers is critically important. State plans have been developed by various groups, some more formal than others. The major thing is to include those who will benefit from the plan, as well as those persons, and groups that will be part of the implementation system, who have the power to make the proposed changes and to carry out plan recommendations.
Implications for Studying Plan Future Development and Implementation
In addition to policy and practice implications, there are implications for research. We begin with the limitations of our study and move on to future study.
Study Limitations
Qualitative methods are limited in that they can only reflect the plans studied and cannot be generalized to other states. In the process of analyzing 38 plans, several additional states were writing dementia plans not captured in this article. Even plans we did capture were developed in different years (from 2008 to 2014); thus, there may have been some evolution of earlier second-wave plans that are being or will be revised in subsequent years. Similarly, it is possible that plans published after the 2012 release of the national AD plan reflect a different perspective, having been influenced by national activities. Thus, no plan can be said to have been developed totally independently of others. In addition, we looked only at written plans, not legislation or official orders that spawned a number of plans, and we did not study plan implementation. Therefore, our analysis is limited to language used to frame state dementia plans.
Future Study
State plans will likely be updated every few years; thus, planning is ongoing and plans are a moving target. Note that in their diagnostic and prognostic framing, these plans typically cite the most recent research on AD, the financial support of which has been (and is) typically a federal function. Additional research needs to focus on how plans are being implemented and how priorities change depending on the course of the movement. State plans are written independently of national plans, yet it will be important to assess how they fit with national priorities. In future research, it will be helpful in understanding the full impact of these planning processes to ask direct service organizations how their practices are influenced (or not) by recommendations in state and national plans, how they are involved in further planning efforts, how these plans are implemented, and whether persons with various types of dementia become subsumed in the shorthand labeled Alzheimer’s Disease.
A further area for research are national AD plans. Lin and Lewis (2015) had begun with a linguistic analysis of terms used in 13 countries, and it is important to note that the AD Movement has expanded beyond U.S. boundaries. In 2011, Rosow and colleagues (2011) called AD “one of the most important global issues of this century” and named “France, Australia, The Netherlands, Norway, Scotland, the Republic of Korea, the United Kingdom, and the United States [as having] made dementia a national priority” (p. 615). On January 4, 2011, President Obama signed the NAPA into law, establishing an Advisory Council on Alzheimer’s Research, Care and Services and requiring the Secretary of Health and Human Services, in collaboration with the Advisory Council, to create and maintain a national plan to cover AD. Subsequently, in 2012, the National Plan to Address AD was published with updates in 2013 and 2014. In 2013, following the lead of U.K. Prime Minister Cameron, the G8 hosted a summit on dementia. The resulting publications, both a summit declaration and a summit communiqué, served to establish a global plan for addressing dementia. In follow-up, in April 2014, the World Council on Dementia met for the first time in London.
Thus, as national plans and international efforts expand, studying these large-scale efforts as part of the Alzheimer’s Movement will continue. Interesting enough, the use of AD appears to have become a shorthand descriptor for dementia within the United States as well as in other countries, even though the World Council on Dementia retains the broader title. Thus, some of the same themes and issues seen in our study of state plans may be played out in broader arenas as the movement spreads around the world.
Conclusion
In the last decade, the AD Movement has gained momentum in the United States and dementia is now considered a worldwide problem. In 2006, the U.S. Alzheimer’s Association launched a campaign to initiate second-wave state plans. Although earlier plans may have influenced content in subsequent plans, each state has a distinctive style and format, with similar messages. States vary in what special population groups they highlight, depending on the population diversity within their geographical domains. Thus, one state may highlight the prevalence of dementia among persons of color and another state may focus on differences between rural and urban populations. Because plans are the precursors to action, the way in which they frame the problem and what to do about it will influence how practitioners do their work and what future policies will be given priority.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.