PMCCPMCCPMCC

Search tips
Search criteria 

Advanced

 
Logo of nihpaAbout Author manuscriptsSubmit a manuscriptHHS Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
Lang Policy. Author manuscript; available in PMC 2011 February 1.
Published in final edited form as:
Lang Policy. 2010 February; 9(1): 29–44.
doi:  10.1007/s10993-009-9153-8
PMCID: PMC2888108
NIHMSID: NIHMS159253

Institutionalized ghosting: policy contexts and language use in erasing the person with Alzheimer’s

Abstract

The ordinary social engagement of human life would not usually be considered an arena for language policy. Yet clinical evidence mounts that social interaction improves our lives as we age. Since social engagement decreases cardiovascular risks (Ramsay et al. in Ann Epidemiol 18:476–483, 2008) and delays memory loss among those living in communities (Ertel et al. in Am J Public Health 98:1215–1220, 2008), practices that prohibit social interaction threaten human well-being. For persons who have Alzheimer’s disease (AD), social interaction continues to play an integral part in cognitive function and delays in memory loss, according to a longitudinal study of social networks (Bennett et al. in Lancet Neurol 5:406–412, 2007). Increasingly, person-centered care that promotes social engagement for those with AD is promoted as an institutional policy to improve outcomes of dementia care (Edvardsson et al. in Int Psychogeriatr 20:764–776, 2008). Yet the training of caregivers may neither reflect person-centered care nor include attention to communication, suggesting covert policies in practice.

Keywords: Alzheimer’s disease, Caregiver discourse, CNA/nurse assistant, Therapeutic discourse, Ferrara, Positioning

Introduction

The ordinary social engagement of human life would not usually be considered an arena for language policy. Yet clinical evidence mounts that social interaction improves our lives as we age. Since social engagement decreases cardiovascular risks (Ramsay et al. 2008) and delays memory loss among those living in communities (Ertel et al. 2008), practices that prohibit social interaction threaten human-well-being. For persons who have Alzheimer’s disease (AD), social interaction continues to play an integral part in cognitive function and delays in memory loss, according to a longitudinal study of social networks (Bennett et al. 2007). Increasingly, person-centered care that promotes social engagement for those with AD is promoted as an institutional policy to improve outcomes of dementia care (Edvardsson et al. 2008). Yet the training of caregivers may neither reflect person-centered care nor include attention to communication, suggesting covert policies in practice.

In 1987, the OBRA Act (Omnibus Budget Reconciliation Act) established the Nurse Aide registry and mandated requirements for nurse aide training to improve quality of care in long term care facilities and nursing homes across the US. As a standard for evaluation, the Minimum Data Set emphasizes the “role of social engagement as an aspect of resident quality of life” (Burgio et al. 2002). Though the Long Term Care Coalition mandates minimal training requirements for nurse aide training and the Joint Commission sets National Patient Safety Goals for Long Term Care, neither establishes quality indicators for communication and social engagement with residents. Although new policies in the UK focus on person-centered dementia care, including an emerging focus on communication (CSCI 2008), no US policy specifically endorses training in dementia care communication for certified nurse aides and other direct care workers, despite the prevalence of dementia among elders in facilities and the predominance of care by unlicensed personnel (Doyle 2008). For persons with Alzheimer’s disease (AD), this is especially unfortunate, since conversation and communication are the primary means most AD residents (and indeed, most residents of long term care facilities and nursing homes) have for social interaction. This lack of policy that supports training for communication effectiveness for caregivers of persons with AD constitutes a de facto, hidden policy of neglect.

This discussion examines the impact of language use in ghosting the speaker with AD and its implication for policy. It will focus on issues of parity, reciprocality, and topic restriction (Ferrara 1994) in Alzheimer-caregiver talk, to show how characteristics of caregiver conversation too often ghost the person, rendering her or him less visible, and speak over the voice of the AD speaker. Seeing dementia as a set of unexplained behaviors, or being unable to see the person behind the disease (Ceci 2006) results in an institutionalized ghosting seen in caregivers’ talking over, talking across, and talking for the increasingly silent speaker with AD.

Until trained (or startled) into a different awareness, we usually see what we expect to see, even when what we think we see is ghosted. The phenomenon of ghosting, a term usd to describe a malfunction in video reception, occurs when a replica of something is super-imposed, slightly off-center, on the real thing. Disconcerted, the viewer tries to adjust. The ‘visible’ then hinges on what we humans zoom in on and render ‘visible’. Such a view, according to Ramanathan (2008:323) necessarily presupposes what we set up as our visual field, and what becomes ‘typical’ or ‘normal’ in that arena. That sense of ‘normal’ is at the heart of current discussions of the self (Herskovits 1995; de Grazia 1999; McEvoy 2007). The self is threatened for persons with AD living in facilities, as they must solicit rather than attract attention by being available. Their increasing need to negotiate for attention during social interaction (Derber 2000) produces anxiety and a growing aloneness, constructed first by the disease and second, by the institution’s social practices around attention, tasks, and language. The process that positions the person with AD as less worthy of full attention and as less than substantial as a human corresponds with practices described by Sabat and Harré (1999) that rob the person with AD of identity.

Parts of a human’s identities remain longer than we had previously thought (Fazio 2005; Davis 2005; Maclagan et al. 2008), particularly with help from caregivers or family. When that help is withheld, because of negative stereotyping (Scholl and Sabat 2008), then ghosting occurs. Reframing the construct of the disease (Vernooij-Dassen and Downs 2008) requires interactive and collaborative conversational strategies that can modify institutional practices in ways that have a restorative impact on both the person whose body has AD and the professional competence of the caregiver. Without policy change on staffing and training to include communication skills and social interaction, policies to support the quality of life for persons with AD remain partial and insufficient.

This discussion will have three parts: policy, perception, and practices. We will first give a brief overview of dementia care policies at the national level for the US, which specify mandated regulations for staffing and training, from which are derived institutional expectations for care. While dementia care policy in the UK is heavily involved with transitioning to person-centered care (CSCI 2008; NHSQI 2008), the US only recently edged into directly involving the resident or patient’s voice (Saliba and Buchanan 2008) and empowering the direct care staff (Yeatts and Cready 2007; Cready et al. 2008). In addition, we highlight policy about training for direct care workers, who are estimated to provide at least 80% of the hands-on care of persons with dementia who reside in facilities. Next, we review common perceptions of and assumptions about both the direct care worker and the person with AD. While these assumptions are being modified by research on training needs (Maas et al. 2008) and interactional or communicative skills, (Davis 2005; Hamilton 1994, 2008a, b; Ramanathan 1997; Sabat 2005) that modification is not yet part of mainstream dementia education or caregiver training. Finally, we look at both the absence of interpersonal discourse and the presence of predominant caregiver talk in institutional care. We can then characterize the way people with AD are positioned malignantly, socially isolated and ultimately abused by conversational and interactional neglect.

Policies affecting dementia care, at US governmental and institutional levels

Murray and Boyd (2009) note the rising numbers of persons with AD, currently estimated for the US as 5.1 million and growing daily, a sizeable number of whom reside in facilities. Persons with AD are also at risk for health disparities, in part because of their age and its additional disease processes. Although roughly 70% of those with AD live at home (p. 13), Murray and Boyd report that “the majority of dementia-related deaths (67%) occur in nursing homes and few of these persons (11%) are referred to hospice care” (p. 13). McLean (2007) traces the hospitalization model for nursing home care and training standards to the post-WW II Hill-Burton Act (http://www.hrsa.gov/hillburton/default.htm). Since then, the Federal Nursing Home Reform Act of 1987, often called OBRA ’87 after its enabling bill, the 1987 Omnibus Budget Reconciliation Act, established a set of baseline or minimum federal health and care requirements for nursing homes in the US, including hours in training and testing for paraprofessional staff or unlicensed assistive personnel. Even with training and certification, however, paraprofessional workers are not licensed to perform nursing tasks; instead, they are supervised by licensed and registered nurses who delegate particular caregiving tasks to them. In a major study of laws aimed at improving quality of care for nursing home residents, Gittler (2008) reviews state laws regulating the licensing of nursing homes and federal laws regulating whether nursing homes can be certified to participate in Medicare and Medicaid programs for reimbursement of services. Gittler, director of the National Health Law and Policy Resource Center, reviews requirements for Medicare and Medicaid, noting that quality of care conditions are part of the core requirements, keyed to resident outcomes including statutes and regulations such as

  • 42 C.F.R. § 483.25 (a) Activities of Daily Living: Facilities must ensure that the ability of residents to engage in activities of daily living does not diminish unless unavoidable because of their clinical condition. Activities of daily living include the ability to bathe, dress and groom, transfer and ambulate, toilet, eat, and use speech, language, or other functional communication systems….
  • 42 C.F.R. § 483.25 (f) Mental and Psychosocial Functioning: Facilities must ensure residents receive appropriate treatment and services to prevent and/or improve a mental or psychosocial adjustment difficulty (Gittler 2008: 268)

Gittler (2008: 269) notes that these requirements “do not address staffing by nursing assistants,” an issue taken up by Maas et al. (2008), who find deficits in care from understaffing and under-training. Such deficits may be linked to suspicious deaths, abuse, neglect, exploitation and social isolation and inactivity (Maas et al. 2008: 129).

The Minimum Data Set 3.0 of October, 2008 is a nursing home assessment tool established by the Centers for Medicare and Medicaid Services, government-established bodies regulating payments and reimbursements for healthcare. Nursing home quality indicators are designed to let facilities “enhance resident-focused care planning” (http://www.cms.hhs.gov/NursingHomeQualityInits/). One important new feature is the effort to include resident voice: “The majority of residents were able to complete interview sections. Staff members reported that items provided useful clinical insights; analyses showed improved validity for cognitive and mood items.” (Saliba and Buchanan 2008: ix). Instead of being asked yes-no questions, residents were given a range of choices, and they used them. Also, most residents could answer questions. The researchers cite this response from a nurse in the study “It is amazing; residents don’t mind being asked and you learn so much from asking.” (Saliba and Buchanan 2008: 3)

The twelve items in the Nursing Home Resident’s Bill of Rights (1998–2003) (www.eldercare.com) do not include communication, though they do include features such as providing dignity and respect. Goal 2 of the Long Term Care National Patient Safety Goals, intended for implementation beginning January 2009, is to improve communication among caregivers (www.jointcommission.org/ PatientSafety). The goals would certainly increase inter-professional discourse and thereby enhance patient safety; however, communication with the patient is not addressed. In terms of current legislative efforts, Murray and Boyd (2009) lists several bills and resolutions now in committee; and as of this writing in January 2009, S. 3730, Retooling the Healthcare Workforce for an Aging America, was introduced in December, 2008, and referred to committee (http://thomas.loc.gov).

Specific minimum regulations are federally mandated concerning certification training for nurse aides; although states differ in whether they require certification and the amount of training is not standardized. The requirements as established by OBRA include the provision of a minimum of 75 h training and testing for unlicensed assistive personnel, the category under which nursing assistants fall. These personnel, also called direct care workers, include certified nursing assistants (CNAs), home health care aides, hospital attendants, and technicians in patient care. The most ubiquitous in terms of patient care, they are, at the same time, highly regulated in terms of the services in personal and restorative care that they are allowed to perform. The Bureau of Labor Statistics notes, “Nursing, psychiatric, and home health aides held about 2.3 million jobs in 2006.” (www.bls.gov/oco/ocos165.htm) Although the 1.4 million nursing aides outnumbered other health care aides in the US, more are needed: the 2006 report from the Geriatric Workforce Project, sponsored by the University of California-San Francisco’s Center for Health Professions, estimates “an additional 1.5 million new jobs will be created in long-term care by the end of this decade….About 800,000 of these will be for nurse aides, home care workers, and personal care” (http://www.futurehealth.ucsf.edu/geria/062404-Geria%20Final.pdf).

Perceptions and assumptions: direct care workers and their care recipients with AD

In this section, we will review first, characteristics of the direct care workforce, which is the lowest in the health care hierarchy, and then identify common perceptions of the correspondingly low-valued characteristics of the older persons with AD whom they care for.

According to the Direct Care Workers of Color, “Minorities, Asians, Latino, African Americans and immigrants collectively comprise nearly 55% of the entire direct care and related services workforce. They are predominantly female, head of household with minimum education or resources. They are the anchors of the long term care and services workforce.” (www.directcareworkersofcolor.org/homepage.html). Their educational attainment and training are both low. Quality Jobs/Quality Care, the newsletter of the Direct Care Worker Association reports that for workers aged 25–44, 55.3% of nursing aides, orderlies, and personal or home health care aides have a high school diploma or less (www.directcareclearinghouse.org/index.jsp). Pfefferle and Weinberg (2008) note that the CNA is typically devalued, receiving both low wages, and abuse from patients and supervisors. Harris-Kojetin et al. (2004:3) note that “Eighty to 90% of direct care workers are women. About half of direct care workers are non-white, compared to one-quarter of all workers. The typical direct care worker is a single mother aged 25–54. Compared to the general workforce, direct care workers are more likely to be non-white, unmarried, and with children at home.” Potter et al. (2006:367) add that “White women constitute less than half of the direct-care workforce but 71% of women in all other occupations. Specifically, Black women account for 12% of women in all other occupations and 35% of women in the direct-care workforce….more women in direct care belong to families at or below 150% of the poverty level, [and] receive public assistance.” Staff turnover is high in facilities caring for the elderly. The 2008 one-page fact sheet from the American Health Care Association (2008), a federation of state health organizations representing long term care providers, finds that in 2007, the median hourly wage for the 2 million CNAs was between $10.50 and $10.80, and their turnover was 65.6%.

Underinsured, underpaid, and undervalued (Tellis-Nayak and Tellis-Nayak 1989): what keeps many direct-care workers in their jobs is their feeling that their work is a profession (Castle et al. 2007), and that their relationships with residents are crucial (Ball et al. 2009). Brannon et al. (2007) find that certain variables are associated with retaining staff, one of those being whether workers felt the job to be rewarding. Pfefferle and Weinberg (2008) find three main themes across 86 focus groups with CNAs: their work is “good work” or “God’s work,” they become very “close” to residents; and they care for “helpless” people. Their emotional commitment and their previous experience, while crucial to their sense of identity, also establishes mental models about caring (Berdes and Eckert 2007) which, say Pfefferle and Weinberg (2008:953), mean that they need additional training in more professionalized models. This is also noted by Anderson et al. (2005): their study of mental models found two, the Golden Rule (“Do Unto Others”), which does not lead to critical thought about potential problems, and “mother wit,” which too often results in the residents being treated as children.

“Second childhood” is a lay phrase frequently applied to older persons who have some form of dementia and all too often grounds an assumption about the abilities of older people to comprehend and communicate that results in patronizing Elderspeak (Ryan et al. 1995; Williams et al. 2008). In the last two decades, the initial studies of Alzheimer discourse have broadened in scope. Until recently, most studies have assumed a deficit model. Alzheimer’s speakers, unlike aphasics, were seen as being non-remediable and, as requiring primarily palliative care. The title of Hopper’s (2003) article about evidence-based efforts to use rehabilitative techniques with impaired speakers summed up the attitude she found among many clinicians and caregivers: ‘“They’re just going to get worse anyway.” And it is not always easy to converse with people in the later stages of dementia (Lamar et al. 1994; Obler and De Santi 2000).

Policy is often determined by public perceptions. The Time Magazine corpus established by Mark Davies at Brigham Young University (http://corpus.byu.edu/time/) gives us a quick look at how the public may construe the disease. As of January 2009, there have been 599 citations: 68 in 1980s, 211 in 1990s, 320 in 2000s. Mentions of Alzheimer’s in articles across the 1980s talked about the disease: it was relentless, devastating, insidious, heartbreaking, enfeebling, calling for sadness and suffering. While these adjectives still occur after the 1980s, emphasis in print articles shifts to include discussions of advances and moves to advocacy, even when writing about a parent: PBS reporter, Roger Rosenblatt writes in 1998 of his mother: “Alzheimer’s creates only indecipherable stares and shattered monologues” (Rosenblatt 1998). Patti Davis, former President Reagan’s daughter, writes in 2002 of the look in her father’s eyes, early in the disease: “He was on a high wire, balancing on courage, with the dark waters of fear below, and he was using every bit of his strength to cling to that wire” (Davis 2002). Persons with dementia are beginning to ask for a voice in policy formulation. Recently, persons with dementia have begun to speak out: former genetics researcher Andrew King, age 44, talked about how he copes with a life that has “lost control” for the Times Online feature about losing his jobs and more importantly, his pension just as he faced early-onset Alzheimers (Harding 2007). The attention to the patient’s perspective and voice can, say de Boer et al. (2007) identify a number of ways that persons with AD are coping and can help diminish fears across the public of developing dementia or of caring for persons with it.

Practices: talking, talking over and talking across the person with dementia

The fear of dementia, particularly of Alzheimer’s, is partly due to new public awareness that dementia is a strong possibility for at least a third of the population reaching age 85, and partly because people know that the disease is progressive and irreversible. It is true that as the disease progresses, the person with AD will typically have much less output of meaningful language, will often have problems with remembering names, poor attention and comprehension, and will repeat words, phrases and questions, even when the questions have been repeatedly answered. This is an extension of what Ryan et al. (1995) call the Communication Predicament of Aging, in which patronizing speech to older persons (Draper 2005) is evoked by stereotyped responses to aging and in turn, reinforces them. Reactions to age-based stereotypes about garrulity, repetitiveness, or hesitant or passive features in speech, can lead to over-accommodation such as elderspeak (Williams et al. 2008; Balsis 2005). Under-accommodation, in which people move away from each other through improper conversation can include dismissive comments or controlling talk (Ryan et al. 1995).

Recent ethnographic studies flesh out the picture. Williams and Warren (2009) report from their study of caregiver-resident communication in an sssisted living facility that compliance with facility regulations and participation in activities, regular bedtimes and meals, is part of what maintains staff perceptions that residents are competent and thus “not ready” to move to nursing homes (2009: 26). Sharpp’s (2008) ethnography of an assisted living facility focuses specifically on care provided to residents with dementia, beginning with the claim that beliefs of many caregivers are incommensurable with the sense of self retained by people with AD (Sharpp 2008:39): “In American culture, there is a pervasive belief that dementia causes a loss of self” (2008: 35). Sharpp’s identification of the kinds of care provided by the two general categories of caregivers she identifies as “person-centered” and “me-centered” (p. 126), fit well with the distinction of instrumental as opposed to intersubjective care drawn by McLean (2007).

McLean (2007) provides an ethnographic study originally carried out in 1992–94 on two units of a single facility that were managed by head nurses with vastly different concepts of what care was: instrumental, task-oriented care vs intersubjective person-oriented care (McLean 2007:199). McLean describes the viewpoint of caregivers who provide instrumental or task-oriented care: dementia was taken to be a “hopeless, totalizing disease” which meant the caregiver could not trust any intent or content of their communication. According to McLean (2007: 199), once a caregiver with this perspective “identified the elder with the disease, the person with dementia and his agency ceased to exist” since only those people “retaining reason would retain the status of person.” Such pathologizing eliminated communication, leading to McLean’s claim (2007: 207) that “Instrumental caregiving is dangerous….Any program of dementia care built on instrumental goals risks fostering a mentality of sanctioned abuse through dehumanizing and immoral practices.”

Consequently, the people with the lowest pay and with little if any professional training about communication as care are the very persons who have the most opportunities for social interaction with persons having dementia, who are half or more of the residents of facilities, and who are seen as incomplete persons. Edvardsson et al. (2008) comment that “Social interactions also have risk of being depersonalizing if the person is deemed an empty shell or the living dead.” Ghosting happens: the disease is superimposed upon the person; the person’s identity is subsumed in stereotype; the care given elicits greater behavioral disruptions (Boustani et al. 2005); positioning becomes malignant (Sabat 2005) and the cycle of the Communication Predicament (Ryan et al. 1995) begins.

As previously noted, it becomes increasingly difficult to converse with people who have Alzheimer’s. In middle or moderate Alzheimer’s, speech is fluent, but it is often characterized as empty of meaning, accompanied by social withdrawal, lack of tact, circumlocutions and fewer “context-appropriate” responses (Bayles et al. 1992; Overman and Goeffrey 1987). By the later stages, there is marked deterioration in both the quantity and the quality of discourse production (Tomoeda and Bayles 1993); in fact, “speech production is markedly reduced and limited to a few words and some social formulae” (Obler and De Santi 2000, p. 405). In many instances, the person will be able only to focus on the here-and-now (Hamilton 2008b; Davis 2005), and, given increasing deficits of memory, will have greatest difficulty with the semantics and pragmatics of language.

Caregivers in residential facilities are constrained by time and task. They typically operate out of a medically-oriented, deficit model and may not recognize the resident’s desire for social talk. Instead, professional caregivers such as registered nurses or physician’s assistants are often trained to use a therapeutic model for communicating with patients (Schuster 2000). However, that therapeutic discourse may not always be an appropriate model for communicating with Alzheimer’s patients, partly because its fullest form (therapist or doctor to patient) eliminates or curtails the parity of normal conversation. Figure 1 adapts the features of Kathleen Ferrara’s model of therapeutic discourse (Ferrara 1994) to compare caregiver-person with AD exchanges with normal conversation, doctor-patient or researcher-interlocutor interviews, and therapist-patient discourse. Ferrara’s findings are in regular text; our contributions are in italics.

Fig. 1
Using Ferrara’s components to assess caregiver-resident talk

In this table, a number of features deserve closer attention, such as routine recurrence and restricted topic. These two components signal the extent to which the Alzheimer’s speaker is decontextualized by the caregiver’s pragmatics, and the extent to which the possible retention of communicative skills by the Alzheimer’s speakers is largely ignored. In consideration of Parity, note that the caregiver possesses all of the symbolic capital so that there is no parity when compared to other kinds of encounters. Reciprocality is equally problematic, since it is not only reduced, but may include verbal and physical abuse from the person with AD, although this is largely beyond their control. Routine recurrence is skewed by the caregiver’s need to establish an agenda based on physical tasks that their job requires. A discourse of efficiency may preclude any kind of social talk. Talk is directive, one-way, task-oriented, and responses are often ignored. Restrictive topic: topics for talk are tied to task; here is where the patient is talked across, their preferences ignored, and their attempts at narrative cut short. Remuneration for the person with AD is emotional; they receive short shrift. Regulatory responsibility for talk is assumed by the caregiver, particularly when the person with AD is seen as incompetent and not capable of consent. The diminished capacity for consent, responsibility, control and participation becomes a de facto language use policy in the care of persons with AD.

The need for language use policy for persons with AD

Schiffman (1996) points out that language policy at a global level arises from linguistic culture, which includes patterns of communicative behaviors, assumptions, stereotypes, attitudes, belief systems, and ways of thinking about language. The micro-environment of long-term care involves a linguistic culture of its own, though its practices can be modified by an alternative policy of prompted participation. For example, formulaic phrases (Maclagan et al. 2008) are often manipulated by AD speakers as the disease progresses, as substitutes or as pointers to a story component. We note informally that it is usually easiest to spot phrases that sound like the speaker is delivering some kind of evaluation, such as Yes! That’s it! or Boy we had a time! It is at this point the co-conversant can insert go-aheads as feedback, and repeat all or part of the phrase, that prompt more information, which can then lead to co-construction of a story. When we first talked with Larry (Davis and Bernstein 2005), he was already seriously impaired. Nonetheless, he was happy to collaborate in creating a story of the here-and-now about the rosebushes at the place where he and a caregiver boarded a special bus, that also intersected with the there-and then from a much earlier time in his life. Here, LM focuses on a single word, rosebud, and the emotion with which Larry invests it. She repeats phrases to him multiple times before moving to any kind of direct question.

LW: They got a lot of, they got a lot of rosewoods on the stop.

LM: A lot of rosebuds on the stop?

LW: Yeah.

LM: Ummm

LW: That’s going to be awfully pretty when they open that up!

LM: Oh, absolutely!

LW: Yeah.

LM: You like rosebuds, too?

LW: That’s my favorite! * * * [section deleted about choosing a favorite]

LM: … That makes you happy doesn’t it? Did you have a bunch of rose bushes when you were growing up? Did your Mama plant rose bushes?

LW: My mother had awfully pretty ones this year.

LM: She did? This year?

LW: She won’t let me get in them! She’s afraid I’ll trim it up!

The AD speaker loses what Foucault (1981) describes as the ability to order and to elaborate discourse, whether by principled repetition at motif level or with the emphasis of temporal and physical details. By motif, we mean those phrases which become, in family story, part of the myth of each person in the family: the day you walked; the day he talked; the first time she said her name.. The details may be the reason a familiar family story becomes what Langellier and Peterson (2004: 51) call a Classic, able to be retold by multiple tellers on multiple occasions, perhaps with other family members joining in with favorite parts: “No, wait, then Dad picked up the red cushion! ” Or they may be “kernels, fragments and remnants as well as coded family myths and shrouded secrets” (39)—your Uncle Randall was always gone at night; I can’t really tell you where she went afterwards. In assuming the loss of the classic story, we may overlook the bits and fragments the AD storyteller can still offer, that we can help to maintain. The act of co-constructing story in everyday narrative (Norrick 2005), may be part of implicit memory, even while many of the details slip away.

It should not surprise us that just from a lifetime’s routine of daily conversation and narrative, and by recognizing a familiar detail, the speaker with AD will add information, or add an elaborative detail, and achieve what seems to be a temporary lucidity. Normann (2002:891) record the achievements of one older woman with dementia: “lucidity was promoted by the conversational parties carefully focusing on conversation topics initiated by the woman while supporting her during conversation”. Moore (1999) describes lively social interactions that thrive among residents in a dining area based on their negotiated relation-ships. This type of support is explained by Normann (2002) who report that successful partners “shared the patient’s view, repeated and reformulated her utterances, reinforced her by using positive utterances, did not emphasize errors and helped her find words” (893).

Conclusion

An alternative language use policy in dementia care would entail reflection on how the practice of ghosting affects identity and positioning. Williams and Warren (2009: 24) find communication is “problematic … including infantilization and lack of opportunities for interaction” in both assisted living and nursing home facilities. They compare the environment, citing Goffman (1961) to boarding schools or prisons, finding that staff-resident communication is filtered through staff perceptions of resident decline and resident personalities (p. 29) as good or bad, positive or negative, social or rude and noncompliant. Brodaty et al. (2003: 583) identified similar perceptions among 253 Australian nursing home staff who identified similar behaviors as being difficult: being resistive, aggressive, unpredictable, having little behavior control; staff often felt that uncooperative behaviors were deliberate (p. 588), rather than being caused by dementia. Narrative reflections by nurses on caring for patients with severe dementia identified five “encounter characterization themes” (Horst et al. 1999: 94), which can be reworded as five different categories: cheerily social; passive; unresponsive; aggressive or resistive; consistently repetitive. Persons in the first category were seen as positive and identity-confirming; the other patient categories were viewed negatively. What is striking about all these categories is that they stem from the use or non-use of language by the patient: we may infer that as persons with dementia decline in their ability to initiate talk or to produce talk seen as social or cheery, they provoke concern in their caregivers and may elicit negative attitudes which can transfer to the nursing assistants and may be felt by patients.

Caregivers trying to give person-centered care can find themselves perplexed, even falling into Elderspeak or occasional talking-over a resident, as in this excerpt from a video recording collected at “Safe Harbour,” a well-run Alzheimer unit in Charlotte, NC. C, the caregiver, cares every day for R, the resident. Shift has just changed and C and V, a visitor, have come into R’s room. C is carrying a basket of small towels: usually, R delights in their folding them together.

C: Did you go out yesterday, eh? Went for a bus ride, eh? No? (inaudible)

R: I want my sweater (spoken as an order)

C: Yes ma’am

C: (gently mocking tone) I want my sweater, right now (laughter). Look, aren’t she pretty? (R smiles; C brings the sweater to R)

V: Hey, R

R: You’re a… (turns to C, but signaling she is talking about V) she’s a nice person

C: Say yeah

In the process of this conversation, C’s humor—a gentle tease?—momentarily objectifies R; R’s smiles signal some awareness, which could perhaps be due to getting her sweater or perhaps keyed to the attention she is being given.

The sociologist, Derber (2000) describes how attention giving and attention getting are achieved in social interactions according to allocated social roles and status. With the loss of cognitive ability, social status diminishes and relations of power alter. People who previously would not be interrupted, mocked, ignored or corrected can be stopped with impunity when ghosted in such language situations.

We advocate the development of policy for language use with those cognitively impaired: the promotion of patient centered, relationship centered dementia care thrives when institutions raise the social status of persons with AD and consider them as citizens worthy of respect (Bartlett and O’Connor 2007). A lack of language policy in dementia care functions as a de facto policy of elder neglect that comes dangerously close to elder abuse. Building such policy into current caregiver training and institutional standards should not be difficult, particularly as it meets standard for national policy concerning the care of persons with AD and restores respect to the individual. After all, these persons had that respect before they became ghosts.

Acknowledgments

We acknowledge with gratitude the comments of the anonymous reviewers of this article. Any errors of fact or interpretation remain with us.

Biographies

• 

Boyd H. Davis is a Professor of Applied Linguistics in the English Department and a Professor in Gerontology at UNC Charlotte where she holds the Bonnie Cone Professorship in Teaching. Her interests include sociohistorical approaches to language across the lifespan, particularly Alzheimer’s speech; narrative, pragmatics and stance; and digital collections of speech. Her research on Alzheimer’s discourse has led to establishing a collection of recorded and transcribed conversations which are now part of the Carolinas Conversation Collection, an NIH-supported web-based digital archive at Medical University of South Carolina. Her most recent book is an edited collection of articles keyed to that corpus, Alzheimer Talk, Text and Context.

• 

Charlene Pope is an Associate Professor of Nursing at the Medical University of South Carolina (MUSC) College of Nursing and the Associate Nurse Executive for Research at the Ralph H. Johnson VA Medical Center in Charleston, South Carolina. As core faculty with the VA Center for Disease Prevention and Health Interventions for Diverse Populations, she conducts health service research with a focus on communication and health disparities. She holds a B.S. in Nursing from the University of Maryland at Baltimore, a Masters in Public Health from the Johns Hopkins University School of Hygiene and Public Health and a Ph.D. in Education specializing in sociolinguistics from the Warner School of Education and Human Development at the University of Rochester. She is Principal Investigator for the Carolinas Conversations Collection at MUSC, a Web-based archive of recordings and transcriptions of people over 65 years of age from diverse ethnic and linguistic groups speaking about their health, illnesses, and health care. The Carolinas Conversations Collection is intended for researchers, funded by the National Library of Medicine/NIH, and includes an extensive sub-collection of recordings of persons with Alzheimer’s disease in natural conversations. Dr. Pope’s previous published work includes a study of gender and ethnic variations in talk with person’s with Alzheimer’s disease in a collection edited by Dr. Boyd Davis.

Contributor Information

Boyd H. Davis, 255A Fretwell, University of North Carolina-Charlotte, 9201 University City Drive, Charlotte, NC 28212, USA, ude.ccnu@sivadb.

Charlene Pope, Medical University of South Carolina, 99 Jonathan Lucas Street, MSC 160, Charleston, SC 29425, USA, ude.csum@cepop.

References

  • American Health Care Association. US long-term care workforce at a glance. 2008. [15 Dec 2008]. http://www.ahcancal.org/facility_operations/workforce/Documents/1-pager.pdf.
  • Anderson R, Ammarell N, Bailey D, Colon-Emeric K, Little M, et al. Nursing assistant mental models, sensemaking, care actions, and consequences for nursing home residents. Qualitative Health Research. 2005;15:1006–1021. [PMC free article] [PubMed]
  • Ball M, Lepore M, Perkins M, Hollingsworth C, Sweatman M. “They are the reason I come to work”: The meaning of resident-staff relationships in assisted living. Journal of Aging Studies. 2009;23:37–47. [PMC free article] [PubMed]
  • Balsis S. Evaluations of elderspeak in a caregiving context. Clinical Gerontologist. 2005;29:79–96.
  • Bartlett R, O’Connor D. From personhood to citizenship: Broadening the lens for dementia practice and research. Journal of Aging Studies. 2007;21:107–118.
  • Bayles K, Tomoeda C, Trossett M. Relation of linguistic communication abilities of Alzheimer’s patients to stage of disease. Brain and Language. 1992;42:454–472. [PubMed]
  • Bennett D, Schneider J, Tang Y, Arnold S, Wilson S. The effect of social networks on the relation between Alzheimer’s disease pathology and level of cognitive function in old people: A longitudinal cohort study. Lancet Neurology. 2007;5:406–412. [PubMed]
  • Berdes C, Eckert J. The language of caring: Nurse’s aides’ use of family metaphors conveys affective care. The Gerontologist. 2007;47:340–349. [PubMed]
  • Boustani M, Zimmerman S, Williams C, Gruber-Baldwin A, Watson L, Reed P, et al. Characteristics associated with behavioral symptoms related to dementia in long-term care residents. The Gerontologist. 2005;45:62–67. [PubMed]
  • Brannon D, Barry T, Kemper P, Schreiner A, Vasey J. Job perceptions and intent to leave among direct care workers: Evidence from the better jobs better care demonstrations. The Gerontologist. 2007;47:820–829. [PubMed]
  • Brodaty H, Draper B, Low L-F. Nursing home staff attitudes towards residents with dementia and satisfaction with work. Journal of Advanced Nursing. 2003;44:583–590. [PubMed]
  • Burgio L, Stevens A, Burgio K, Roth D, Paul P, Gerstle J. Teaching and maintaining behavior management skills in the nursing home. The Gerontologist. 2002;42:487–496. [PubMed]
  • Castle N, Engberg J, Anderson R, Men A. Job satisfaction of nurse aides in nursing homes, intent to leave and turnover. The Gerontologist. 2007;47:193–204. [PubMed]
  • Ceci C. “What she says she needs doesn’t make a lot of sense”: Seeing and knowing in a field study of home-care case management. Nursing Philosophy. 2006;7:90–99. [PubMed]
  • Cready C, Yeatts D, Gosdin M, Potts H. CNA empowerment, effects on job performance and work attitudes. Journal of Gerontological Nursing. 2008;34:26–35. [PubMed]
  • CSCI/Commission for Social Care Inspection. See me, not just the dementia: Understanding people’s experiences of living in a care home. 2008. [1 Oct 2008]. http://www.csci.org.uk/pdf/Dementia%20Report-web.pdf.
  • Davis P. The faces of Alzheimer’s. Time. 2002. [10 Oct 2008]. Monday Aug. 26. http://www.time.comtime/magazine/article/0,9171,1003090,00.html.
  • Davis B, editor. Alzheimer talk, text and context: Enhancing communication. NY: Palgrave; 2005.
  • Davis B, Bernstein C. Talking in the here and now, reference and politeness in Alzheimer conversation. In: Davis B, editor. Alzheimer talk, text and context: Enhancing communication. NY: Palgrave; 2005. pp. 60–86.
  • de Boer M, Hertogh C, Droes R, Riphagen I, Jonker C, Eefsting J. Suffering from dementia—the patient’s perspective, a review of the literature. International Psychogeriatrics. 2007;19:1021–1039. [PubMed]
  • De Grazia D. Advance directives and dementia. Bioethics. 1999;13:373–391. [PubMed]
  • Derber C. The pursuit of attention: Power and ego in everyday life. Oxford, UK: Oxford University Press; 2000.
  • Doyle C. Consumer involvement in dementia care research, policy, and program evaluation. Australian Institute for Primary Care. 2008. [10 Oct 2008]. http://www.alzheimers.org.au/upload/Doyle.pdf.
  • Draper P. Patronizing speech to older patients: A literature review. Reviews in Clinical Gerontology. 2005;15:273–279.
  • Edvardsson D, Sandman P, Nayi R, Karlsson S. Associations between the working characteristics of nursing staff and the prevalence of behavioral symptoms in people with dementia in residential care. International Psychogeriatrics. 2008;20:764–776. [PubMed]
  • Ertel K, Glymour M, Berkman L. Effects of social integration on preserving memory function in a nationally representative US elderly population. American Journal of Public Health. 2008;98:1215–1220. [PubMed]
  • Fazio S. Ph. D. dissertation, Loyola University of Chicago. 2005. The persistence of self in individuals with Alzheimer’s disease.
  • Ferrara K. Therapeutic ways with words. Oxford: Oxford University Press; 1994.
  • Foucault M. In: The order of discourse. McLeod I, Young R, translators. Boston: Routledge; 1981. pp. 48–78.
  • Gittler J. Governmental efforts to improve quality of care for nursing home residents and to protect them from mistreatment: A survey of federal and state laws. Research in Gerontological Nursing. 2008;1:264–284. [PubMed]
  • Goffman E. Asylums: essays on the social situation of mental patients and other inmates. NY: Doubleday and Sons; 1961.
  • Hamilton H. Conversations with an Alzheimer’s patient: An interactional socio-linguistic study. Cambridge: Cambridge University Press; 1994.
  • Hamilton H. Language and dementia: Sociolinguistic aspects. Annual Review of Applied Linguistics. 2008a;28:91–110.
  • Hamilton H. Narrative as snapshot, glimpses of the past in Alzheimer talk. Narrative Inquiry. 2008b;18:53–82.
  • Harding K. The vanishing man. 2007. [1 Oct 2008]. TimesOnline October 27. http://women.timesonline.co.uk/tol/life_and_style/women/families/article2715310.ece.
  • Harris-Kojetin L, Lipson D, Fielding J, Kiefer K, Stone R. Recent findings on frontline long-term care workers, a research synthesis 1999–2003. US Department of Health and Human Services; 2004. [15 Dec 2008]. http://aspe.hhs.gov/daltcp/Reports/insight.htm.
  • Herskovits E. Struggling over subjectivity: Debates about the “Self” and Alzheimer’s Disease. Medical Anthropology Quarterly. 1995;9:146–164. [PubMed]
  • Hopper T. “They’re just going to get worse, anyway”: Perspectives on rehabilitation for nursing home residents with dementia. Journal of Communication Disorders. 2003;36:345–359. [PubMed]
  • Horst G, Edberg A, Hallberg I. Nurses’ narrations and reflections about caring for patients with severe dementia as revealed in systematic clinical suprevision sessions. Journal of Aging Studies. 1999;13:89–107.
  • Lamar M, Obler L, Knoefel J, Albert M. Communication patterns in end-stage Alzheimer’s disease: Pragmatic analyses. In: Bloom R, Obler L, de Santi S, Ehrlich J, editors. Discourse analysis and applications: Studies in adult clinical populations. Hillsdale, New Jersey: Laurence Erlbaum Associates; 1994.
  • Langellier K, Peterson E. Storytelling in daily life: Performing narrative. Philadelphia: Temple University Press; 2004.
  • Maas M, Specht J, Buckwalter K, Gittler J, Bechen K. Nursing home staffing and training recommendations for promoting older adults’ quality of care and life. Part 2. Increasing nurse staffing and training. Research in Gerontological Nursing. 2008;1:134–152. [PubMed]
  • Maclagan M, Davis B, Lunsford R. Fixed expressions, extenders and metonymy in the speech of people with Alzheimer’s disease. In: Granger S, Meunier F, editors. Phraseology, an interdisciplinary perspective. Amsterdam: Benjamins; 2008.
  • McEvoy A. Dying in pieces. American Journal of Alzheimer’s Disease and Other Dementias. 2007;22:11–13. [PubMed]
  • McLean A. The person in dementia: A study of nursing home care in the US Peterborough. Ontario: Broadview Press; 2007.
  • Moore K. Dissonance in the dining room: A study of social interaction in a special care unit. Qualitative Health Research. 1999;9:133–155. [PubMed]
  • Murray L, Boyd S. Protecting personhood and achieving quality of life for older adults with dementia in the US health care system. Journal of Aging and Health. 2009 Online/First 29 December (2008) for (2009) publication. [PubMed]
  • National Health Service Quality Improvement. SIGN, management of patients with dementia, a national clinical guideline. 2008. [8 Oct 2008]. http://www.sign.ac.uk/pdf/sign86.pdf.
  • Normann H. Lucidity in a woman with severe dementia related to conversation, a case study. Journal of Clinical Nursing. 2002;14:891–896. [PubMed]
  • Norrick N. The dark side of tellability. Narrative Inquiry. 2005;15:323–343.
  • Nursing Home Resident’s Bill of Rights. 1998–2003. [8 Oct 2008]. http://www.eldercare.com.
  • Obler L, De Santi S. Eliciting language from patients with Alzheimer’s disease. In: Menn L, Ratner N, editors. Methods for studying language production. Mahwah, NJ: Lawrence Erlbaum; 2000. pp. 403–416.
  • Overman C, Goeffrey V. Alzheimer’s disease and other dementias. In: Mueller H, Goeffrey V, editors. Communication disorders in aging. Washington, DC: Gallaudet University Press; 1987.
  • Pfefferle S, Weinberg D. Certified nurse assistants making meaning of direct care. Qualitative Health Research. 2008;18:952–961. [PMC free article] [PubMed]
  • Potter S, Churilla A, Smith K. An examination of full-time employement in the direct care workforce. Journal of Applied Gerontology. 2006;25:356–374.
  • Ramanathan V. Alzheimer discourse: Some sociolinguistic dimensions. Mahwah, NJ: Lawrence Erlbaum; 1997.
  • Ramanathan V. Applied linguistics redux: A derridean exploration of Alzheimer lifehistories. Applied Linguistics. 2008;29:1–23.
  • Ramsay S, Ebrahim S, Whincup P, Papacosta O, Morris R, Lennon L, et al. Social engagement and the risk of cardiovascular disease mortality: Results of a prospective population-based study of older men. Annals of Epidemiology. 2008;18:476–483. [PubMed]
  • Rosenblatt R. This long disease. Time. 1998. [1 Dec 2008]. Monday Jan 12, 1998. http://www.time.com/time/magazine/article/0,9171,9887647,00.html.
  • Ryan E, Hummert M, Boich L. Communication predicaments of aging: Patronizing behaviour toward older adults. Journal of Language and Social Psychology. 1995;13:144–166.
  • Sabat S. Capacity for decision-making in Alzheimer’s disease, selfhood, positioning and semiotic people. Australian and New Zealand Journal of Psychiatry. 2005;39:1030–1035. [PubMed]
  • Sabat S, Harré R. Positioning and the recovery of social identity. In: Harré R, van Langenhove L, editors. Positioning theory: Moral contexts of intentional action. Oxford, UK: Blackwell; 1999. pp. 87–101.
  • Saliba D, Buchanan J. Development and validation of a revised nursing home assessment tool, MDS 3.0. Baltimore: Rand Corporation; 2008. [15 Dec 2008]. http://www.cms.hhs.gov/nursinghomequalityinits/25_nhqimds30.asp.
  • Schiffman H. Linguistic culture and language policy. UK, Routledge: London; 1996.
  • Scholl J, Sabat S. Stereotypes, stereotype threat and ageing, implications for the understanding of people with Alzheimer’s disease. Aging and Society. 2008;28:103–130.
  • Schuster P. Communication, the key to the therapeutic relationship. Philadelphia: F.A Davis Publishers; 2000.
  • Sharpp T. Ph. D. dissertation, U. California-San Francisco. 2008. An ethnography of dementia care in an assisted living facility.
  • Tellis-Nayak V, Tellis-Nayak M. Quality of care and the burden of two cultures, when the world of the nurse’s aide enters the world of the nursing home. The Gerontologist. 1989;29:307–313. [PubMed]
  • Tomoeda C, Bayles K. Longitudinal effects of Alzheimer disease on discourse production. Alzheimer Disease and Associated Disorders. 1993;7:223–236. [PubMed]
  • Vernooij-Dassen M, Downs M. Cognitive and behavioural interventions for carers of people with dementia. Cochrane Database of Systematic Reviews, 2, npn 2008
  • Williams K, Herman R, Gajewski B, Wilson K. Elderspeak communication: Impact on dementia care. American Journal of Alzheimer’s Disease and Other Dementias. 2008 Online First June 30, 2008. [PMC free article] [PubMed]
  • Williams K, Warren C. Communication in assisted living. Journal of Aging Studies. 2009;23:24–36. [PMC free article] [PubMed]
  • Yeatts D, Cready C. Consequences of empowered CNA teams in nursing home settings, a longitudinal assessment. The Gerontologist. 2007;47:323–339. [PubMed]