9 - Executive Function and Cognitive Rehabilitation

Editors: Backman, Lars; Hill, Robert D.; Neely, Anna Stigsdotter

Title: Cognitive Rehabilitation in Old Age, 1st Edition

Copyright 2000 Oxford University Press

> Table of Contents > Part IV - Rehabilitation Strategies for Cognitive Loss in Age-Related Disease > 13 - Psychosocial Rehabilitation for Problems Arising from Cognitive Deficits in Dementia

13

Psychosocial Rehabilitation for Problems Arising from Cognitive Deficits in Dementia

Michael Bird

According to most definitions, rehabilitation aims at the restoration of normal everyday functioning, for example, The process of restoring the person's ability to live and work as normally as possible after a disabling injury or illness (Miller & Keane, 1987, p. 826). With the dementias, a group of illnesses that cause progressive deterioration and have no known cure, further qualification is required. This chapter concerns psychosocial interventions whose express target is serious clinical problems arising from cognitive deficits in dementia.

A first section addresses attempts, based on a cure or recovery model, to compensate for or restore lost cognitive function. The consistent failure of this line of research to demonstrate generalization to the problems of everyday life means, however, that most of the chapter has a more overt clinical focus. A second section outlines research on generic or standard strategies-primarily manipulations of the social and physical environment, which seek to ameliorate difficulties dementia sufferers experience in negotiating the world. The final section, moving from the generic to the specific, presents four case studies to illustrate the idiosyncratic nature of clinical work.

The Quest for Generalized Improvement

Mnemonics

There was, briefly, enthusiasm for the idea that mnemonic strategies, many known to the ancient Greeks, might generalize across memory problems for persons suffering cognitive damage, including dementia (e.g., Hill, Evankovich, Sheikh, & Yesavage, 1987; Yesavage, Sheikh, Friedman, & Tanke, 1990).

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Enthusiasm quickly waned; mnemonic procedures such as imagery or the method of loci do not appear to be an option. They require that the dementia sufferer remember the procedure, and even if this were possible, they require self-initiation and flexibility to be generalized to new situations. These requirements have normally proved beyond the capacity of persons suffering brain insults (B ckman, Josephsson, Herlitz, Stigsdotter, & Viitanen, 1991; Godfrey & Knight, 1987; Herrman, Rea, & Andrzejewski, 1988).

Reality Orientation

The basic reality orientation (RO) method, summarized by Drummond, Kirchoff, and Scarbrough (1978), is to orient confused patients to their present circumstances in all relevant interactions. Most RO research and clinical application, however, has been based on classroom sessions, where information such as personal history or ward orientation is repeatedly presented. The rationale appears to be a hope that this approach will lead to generalized improvement in functioning. Though plagued by methodological problems (Greene, 1984; Woods & Britton, 1985) and inclusion of a diverse range of different procedures under the RO rubric (Hanley, 1984; Powell-Procter & Miller, 1982), there is a fairly consistent finding. Limited information may sometimes be learned, but it is not maintained and does not generalize to everyday life (Downes, 1987; Godfrey & Knight, 1987; G testam, 1987; Hanley & Lusty, 1984).

The ineffectiveness of reality orientation as most commonly applied in improving orientation to reality has not entirely diminished its appeal, perhaps because the semblance of doing something therapeutic is known to improve staff morale and therefore probably patient care in what is often an unstimulating, low-status work environment (Ferrario, Cappa, Molaschi, Rocco, & Fabris, 1991; Hanley, 1984; Powell-Procter & Miller, 1982). In my home country, Australia, RO boards can still be seen displaying the (often wrong) date and other irrelevant facts, even in nursing homes where crucial information such as the location of toilets is not marked.

Research studies also still appear, for example, Zanetti et al. (1995), who gave patients repeated cycles of classroom RO. Though a slight gain in scores on the Mini-Mental State Exam (MMSE; Folstein, Folstein, & McHugh, 1975) was reported against a loss for matched controls, the study nicely illustrates problems in inferring the clinical utility of these exercises. Some sessions contained MMSE orientation items, raising the possibility that subjects were unwittingly trained to pass the MMSE. Further, there was a decline in scores roughly equivalent to the control group loss during rest cycles. There were no significant differences between experimental subjects and controls on any other cognitive or affective measure and, of most relevance to the thrust of this chapter, no differences in activities of daily living (ADLs). That is, even supposing the MMSE advantage was valid, no effect was demonstrated on everyday functioning, presumably the ultimate goal of the exercise.

Cognitive Training and Stimulation

Zanetti et al. (1995) included memory, attention and visuospatial components as well as orientation in their study, reflecting a trend toward applying to dementia sufferers the type of repetitive cognitive exercises that have gained currency in the brain injury

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literature. Again, the rationale appears to be that mental exercise or stimulation may lead to generalized improvement in everyday life, though little evidence has been gathered in support of this approach. For example, Beck, Heacock, Mercer, Thatcher, and Sparkman (1988) found a small significant effect on recall of digits following repetitive training on cognitive tasks but no effect on any other neuropsychological test. No attempt was made to investigate whether this outcome alleviated everyday difficulties. Other studies have also shown small gains (Bach, Bach, Bohmer, Friih-wald, & Grilc, 1995; Breuil et al., 1994), but even these have not investigated whether such outcomes have had any practical effect.

Breuil et al. (1994) and Zanetti et al. (1995) have suggested that ADL scales may not be sensitive enough to reflect gains in everyday functioning. However, this suggestion places the onus of proof on investigators who are serious about providing rehabilitation for real-life difficulties, rather than simply adding a few points to the odd neuropsychological test. At present, the most parsimonious explanation is that the multiple cognitive, behavioral, and affective problems associated with dementing illnesses are impervious to the kind of small improvements occasionally shown following cognitive stimulation.

Some of the best evidence that regular cognitive exercise affects real-life difficulties in dementia comes from Quayhagen, Quayhagen, Corbeil, Roth, and Rodgers (1995), who trained family members to provide such exercise at home. There were small but significant cognitive differences between experimental and control subjects with dementia at follow-up and significantly fewer behavioral problems in the experimental group. However, a third, placebo group equaled the experimental subjects on some cognitive measures and on the behavioral measure. A plausible explanation is that the active factor in the most important clinical outcome (fewer behavioral problems) was not cognitive stimulation per se, but the daily interaction of carer and patient in meaningful activity, which occurred in both experimental and placebo conditions. A subsequent paper (Quayhagen & Quayhagen, 1996) supports this hypothesis by reporting improved communication and relationships for couples who took part.

Summary

Despite what sometimes appears to be a cargo-cult mentality with RO and a curious belief that the brain is analogous to a muscle, there is slight evidence that small improvements in some cognitive scores can sometimes be obtained by persons with dementia following cognitive stimulation. Nevertheless, there is still no convincing evidence that it translates into everyday benefits. Placed alongside whether the patient can find the toilet, can inhibit a desire to sexually assault others, or is suicidal because of a recognition of his or her deteriorating cognitive status, a slight increase in MMSE scores is clinically meaningless.

The idea of a standard cognitive treatment, applicable across a range of cases, is very attractive. Clearly, this line of research will continue. However, despite a 30-year history, data on the efficacy of repetitive cognitive exercise in ameliorating the real-life problems of dementia sufferers and, by extension, of their carers are still not in-a caveat that applies equally to drug therapies (Davis & Powchik, 1995; Kelly & Hunter, 1995).

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Accordingly, the conceptual foundation for the remainder of this chapter is an assertion made by Woods and Britton (1985):

We need to break away from our pre-occupation with treatment in the sense of cure and recovery, and be aware of the different types of goal that are feasible, and the value of some of the more limited goals in improving the patient's quality of life. (p. 217)

The remaining two sections describe attempts not to produce cognitive improvement in dementia, but to ameliorate the effects of cognitive decline, that is, the reduction of excess disability (Body, Kleban, Lawton, & Silverman, 1971). The scientific as opposed to the anecdotal literature is, in the main, minuscule. Nevertheless, it appears to indicate clinical and research directions for cognitive and behavioral scientists whose definition of rehabilitation in dementia means assisting the patient to cope more adaptively with its effects.

Generic Strategies to Ameliorate Difficulties Arising From Cognitive Impairment

This section addresses attempts to produce standardized strategies, that is, programs or methods generally applicable by a range of health professionals across a range of clinical problems. What are these problems? They are primarily behavioral and can range from low-level difficulties like not being able to find the dining room to extreme disturbance, such as violence or continuous screaming.

Though such disturbances are sometimes called noncognitive symptoms of dementia (e.g., Patterson & Whitehouse, 1994), impaired cognitive function plays a major role in the interaction of factors that produce them (Ballard & Oyebode, 1995; Cohen-Mansfield, Werner, Marx, & Lipson, 1993; Morriss, Rovner, & German, 1995; Rapp, Flint, Herrmann, & Proulx, 1992; Zandi, 1994). An example may be found in chapter 12 in the case study of a patient referred for paranoid delusions and violence associated with her perceived thievery of her possessions. The behavior was largely due to impaired memory of events surrounding her recent move to residential care.

A secondary group of problems, notionally separate from behavioral difficulties but actually intimately linked to them, is the patient's affective response to cognitive loss and/or the difficulties of negotiating the world because of that loss. The violent paranoid reaction of the patient described in chapter 12 is a typical example. Unfortunately, the subjective response of the person with dementia has been almost completely ignored by serious research until recently (Kitwood, 1997). Emotional distress in dementia and research into means of alleviation are beyond the ambit of this chapter, but they are not without relevance. Anxiety and/or depression is common throughout the course of dementia and causes excess cognitive and functional disability, which is often treatable (Ballard, Patel, Solis, Lowe, & Wilcock, 1996; Reifler & Larson, 1990; Teri, 1994; Teri et al., 1991). For a brief discussion of these issues, see Woods and Bird (1998).

Environmental Strategies

Broad-based strategies, applicable across a range of patient profiles to alleviate problems associated with cognitive deficits in dementia, fall mostly under the rubric of

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adjustments to the physical and social environment. This includes, most critically, the behavior and characteristics of carers.

Social/Care Environment

Education and Support of Home Carers

There is a large literature on strain among people who care for a relative with dementia (see Gilhooly, Sweeting, Whittick, & McKee, 1994, for review). In the current context, this is of relevance only where attempts to relieve carer distress have also produced measurable effects in the patient with dementia. Unfortunately, only a minority of studies reporting benefits of various interventions for carers provide objective evidence, and of that minority, only a tiny proportion also attempt assessment of outcome for the dementia sufferer.

Where the primary focus has been support for carers, provision of general coping strategies, and general education on dementia, results have been equivocal. For example, Winogrund, Fisk, Kirsling, and Keyes (1987) and Zarit, Anthony, and Boutselis (1987) found no effect on patient behavior problems following such a program. On the other hand, 3-year follow-up after an intensive 2-week residential program for home carers that also included behavior management training showed not only that morbidity in the carers was reduced, but also that they were able to care for the patient at home for longer, and that there were fewer deaths among the patients (Brodaty, McGilchrist, Harris, & Peters, 1993). Assuming that continued care at home and staying alive may be called normal life, this program had a marked rehabilitative effect.

Other programs that have been proactive in directly training carers in management techniques have had positive results. Hinchliffe, Hyman, Blizard, and Livingston (1995) trained home carers in a variety of psychosocial methods for dealing with difficult behaviors, though medication was used in some cases. Problems ranged from repetitive questions to violence. There was a significant reduction in problem behavior in 75% of cases, maintained at 4-month follow-up, and a significant improvement in mental health among carers.

Institutional Staff

By contrast with home carers, the characteristics of nursing and ancillary staff who care for patients with dementia have been almost unmapped until recently. However, it is known that workers in residential care for the elderly often suffer low morale, burnout, and stress (Baillon, Scothern, Neville, & Boyle, 1996; Karuza & Feather, 1989). The precise contribution to stress levels of caring for patients with dementia is difficult to determine, but it is known to have an effect (Berg, Hansson, & Hallberg, 1994; MacPherson, Eastley, Richards, & Mian, 1994).

As with home carers, emotional states and attitudes amongst nurses are only of relevance here if it can be shown that they cause excess disability in patients, and that addressing these states and attitudes reverses the process. There is a small literature supporting both propositions. Baltes, Neumann, and Zank (1994) found that staff behaviors can increase dependence (a directly counterrehabilitative process), and it has been shown that staff characteristics affect the quality of care (Block, Boczhowski, Hansen, & Vanderbeck, 1987; Edberg, Nordmark Sandgreen, & Hallberg, 1995; Hallberg, Hoist, Nordmark, & Edberg, 1995). Conversely, sustained support/education

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programs for staff have shown improvements in morale and care attitudes. Patient benefits have included increases in carer-patient communication (Kihlgren et al., 1992; Ripich, 1994) and decreases in use of psychotropic drugs and restraint (Levine, Marchello, & Totolos, 1995; Ray et al., 1993; Rovner, 1994).

Assuming that not being socially isolated, tied up, or medicated with neuroleptics or hypnotics approximates more normal life, these programs have had a clear rehabilitative effect. Further, a few studies have reported measurable improvements in patients themselves, including reductions in behavior problems and depressed mood (Br ne, Karlsson, Kihlgren, & Norberg, 1989; Hagen & Sayers, 1995; Rovner, Steele, & Folstein, 1996).

What should be the goal of residential care staff programs? Hallberg and Norberg (1995) asserted that what is required is the development of a less authoritarian, more sensitive and mutually cooperative relationship between carer and patient. This claim was backed by a 1-year support and education program for nurses that improved attitudes toward the patients, reduced staff stress, improved the quality of care, and reduced difficult patient behavior (Edberg, Hallberg, & Gustafson, 1996; Berg et al., 1994). That is, there is evidence that packages that assist staff to deliver more informed and humane care have, in themselves, a rehabilitative effect for persons with dementing illnesses. This is far from the concept of rehabilitation defined in the narrow sense of restoring lost function. It is rehabilitative in the sense that carers who are helped to understand and empathize with the effects of the disorder can significantly alleviate the extreme difficulties patients encounter in making sense of and coping adaptively with the world. For example, most incidents of aggression by patients take place during personal care (Bridges-Parlet, Knopman, & Thompson, 1994; Nilsson, Palmstierna, & Wistedt, 1988). More informed and sensitive handling can often significantly reduce it (for example, see Case C, discussed later).

In summary, excellent qualitative and quantitative research into dementia nursing is at last taking place, but like much other applied clinical research in dementia it is in its infancy. The scope for further careful research by cognitive and behavioral scientists in the nursing home to improve the quality of dementia care is almost limitless (Burgio & Bourgeois, 1992).

Summary: Care Environment

There is a small but emerging body of evidence in support of treatment approaches that provide home and institutional carers with methods not only to deal with their own emotional state, but also to understand and cope with the problems facing the dementia sufferer. It is scarcely surprising that this research indicates that such interventions can produce rehabilitative effects for both the carer and the dementia sufferer. Most persons with dementia live in dependent dynamic and interactive relationships (Pruchno, Peters, & Burant, 1995; Qureshi & Walker, 1989), with the behavior of carers affecting the patient and the behavior of patients affecting the carers (Edberg et al., 1996; Morriss, Rovner, & German, 1996; Rahman, 1993). It follows that attempts to ameliorate problems by applying a psychosocial treatment to the patient in isolation are unlikely to be efficacious. Carers are an integral part of the case profile, and few psychosocial interventions will succeed without carer involvement. In many cases, the carers are cotherapists (Bird, Alexopoulos, & Adamowicz, 1995; Hinchliffe et al., 1995; McEvoy & Schonfeld, 1989; Teri, 1994).

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In others cases, carers are part of the problem. An intervention in Bird et al. (1998) nicely illustrates these interactions. A female carer's exasperation at her husband's obsessive toilet visits was exacerbating them because it increased his anxiety. The problem was directly due to the patient's memory impairment overlaid onto a lifelong belief in the necessity of daily bowel movements. Treatment of the behavior actually involved educating the carer to respond with empathic assertion rather than angry confrontation. There were rehabilitative effects for both patient and carer: a reduction in toilet visits to manageable levels and a significant improvement in the carer's mental health.

Physical Environment

Though several decades have passed since Lindsley (1964) coined the term prosthetic environment in arguing that declining competence with age can be assisted by a more supportive physical environment, many anecdotal accounts but remarkably little evidence have been produced with respect to dementia. In fact, important though rarely cited studies of confused elderly ward patients by Gilleard, Mitchell, and Riordan (1981) and Hanley, McGuire, and Boyd (1981) showed that environmental cues to improve spatial orientation are ineffective without active training in their use. (See also the argument on the use of environmental cues in chapter 12.)

Nevertheless, there has been a surge in development of dementia-specific facilities, often termed special care units (SCU) in the United States. They represent a move away from the acute nursing model, which, inexplicably, still informs much residential dementia care, and they typically incorporate features that clinical experience or belief suggests may reduce excess disability (Cohen & Day, 1994; Leon, 1994). Examples are breaking up long corridors and large facilities into small units, providing areas for safe wandering, and eliminating glare (Mintzer et al., 1993). Specialized dementia nursing-care programs are usually also incorporated; in some cases, an SCU is defined by the programming (Leon, 1994). There are similar trends elsewhere, for example, the units for confused and disturbed elderly (CADE) in Australia (Atkinson, 1995; Fleming, Bowles, & Mellor, 1989) and group-living units in Sweden (Wimo, Asplund, Mattsson, Adolfsson, & Lundgren, 1995).

Despite the proliferation of these units, there is still only anecdotal evidence that they are more effective than traditional care (Cohen & Day, 1994; Maslow, 1994; Weisman, Calkins, & Sloane, 1994). Wimo et al. (1993) found that patients given a well-informed and well-implemented special care regime actually deteriorated behaviorally compared with a control group. Conversely, Turner, Willden, Halpin, and Patrick (1997) found a significant decrease in behavioral problems following the combination of a dementia-specific care regime and the redesign of a psychogeriatric ward into smaller units that permitted safe wandering and clear access to facilities.

One problem highlighted in reviews by Teresi, Powell Lawton, Ory, and Holmes (1994) and Weisman et al. (1994) is difficulty of measurement. Issues in this regard include ill-defined concepts and ill-defined treatment goals. Others include the problem that there is often a concentration of difficult residents in these units, making fair comparisons with traditional care problematic, and that special care is often globally different from traditional care, with multiple potentially active variables.

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Nevertheless, it is possible to measure the effects of certain discrete aspects of the physical environment, and though tiny in number by comparison with the anecdotal literature, empirical studies are beginning to emerge. Weisman et al. (1994) summarized evidence from some SCU programs in the United States, including reductions in incontinence when toilets were visible and less time required by residents to find their rooms when personal memorabilia were displayed by the door. A much-cited study by Hussian and Brown (1987), who utilized a grid pattern to reduce wandering, actually failed on replication (Chafetz, 1990), but there is now other evidence in support of the general principle of utilizing visuoperceptual impairments of the patients, in juxtaposition with ambiguous visual barriers, for this common problem (Chafetz, 1990; Namazi, 1989).

Recent work investigating manipulations in the sensory environment have also begun to show a shift from the enthusiastically anecdotal to the empirical. In a carefully constructed study, Burgio, Scilley, Hardin, Hsu, and Yancey (1996) showed that seascape sounds reduced disruptive vocalizations by nine severely dementing nursing-home residents, despite noncompliance by nurses. Several studies have found that music at strategic times reduced various problem behaviors (Gerdner & Swanson, 1993; Goddaer & Abraham, 1994; Helmes & Wiancko, 1997). Similarly, some authors have produced data suggesting that structured administration of bright light significantly reduces problems associated with disrupted sleep-wake patterns and sundowning (Lovell, Ancoli, & Gervitz, 1995; Mishima, Okawa, Hishikawa, Hori, & Takahashi, 1994; Satlin, Volicer, Ross, Herz, & Campbell, 1992).

A major point about these studies, which provide details of clinical procedure and quantitative outcome data, is their rarity. This is perhaps the reason for the frequent citing of Hussian and Brown's procedure despite its (rarely cited) failure on replication. However, though small in volume, the work outlined in this section shows that determined clinical researchers committed to the scientific method can collect clean data at the very messy and unpredictable clinical level, where manifold con-founders such as staff noncompliance (e.g., Burgio et al., 1996) make the tightly controlled laboratory conditions of traditional cognitive research appear alien and even irrelevant.

Summary: Environmental Adjustments

When the environment is broadly defined to include the physical, the sensory, and the social context, there is a potentially large scope for a rehabilitative effect on dementia sufferers. Possibilities range from adjustments to the many situations where the environment is directly causing excess disability to creation of dementia-friendly environments which are less stressful for the patient to negotiate. There are encouraging signs of a move from anecdotes and unsupported assertions to empirical research in this area, which covers such diverse adjustments as reducing home carer stress and increasing management skills, changing nurse's attitudes, and developing prosthetic features of the environment. Nevertheless, the number of scientific studies is still at a derisory level, and many methodological difficulties remain. The opportunities for contributions by cognitive and behavioral scientists prepared to work in the clinical setting are almost infinite.

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Working Directly with the Patient

Operant Conditioning

A number of texts describe the use of behavior modification principles to alleviate problems in dementia (e.g., Rabins, 1994), and clearly, adjustments to the environment could be labeled stimulus control procedures within the antecedent-behavior-consequence model. However, the huge and diverse complex of interacting environmental factors with the potential to produce change-ranging from reducing carer stress to reducing glare in the lounge-makes attempts to understand environmental manipulations in terms of such a global label largely useless, or even pernicious. With naive or inflexible behavioral clinicians, use of labels such as stimulus-control is likely to restrict analysis to immediate antecedents of the behavior. On the other hand, the consequence component of the model and the use of reinforcement may most usefully be discussed separately.

Unfortunately, texts extolling operant conditioning either are general (e.g., Cohen-Mansfield et al., 1993; Rabins, 1994) or give case descriptions that only involve adjustments to the environment, including more informed and sensitive nursing care (McGovern & Koss, 1994; Rapp et al., 1992). Clearly, operant principles are involved in many aspects of dementia care (for example, low staff morale in an unrewarding work environment) and are an integral part of some interventions (e.g., Bird et al., 1995). Nevertheless, there are almost no cases reported in the literature of differential reinforcement being used specifically to change the maladaptive behavior of patients with dementia (though see Cases A and B below). Studies by Vaccaro (1988) and Pinkston, Linsk, and Young (1988), sometimes cited in support of the utility of reinforcement schedules in dementia, involved, respectively, samples who did not have dementia or that mixed frail aged. The two cases described in detail by Pinkston et al. involved depressed, not dementing, patients.

Major problems include poor application of behavioral principles by health professionals who mistakenly assume they understand them (Burgio & Bourgeois, 1992) and inconsistent application in nursing homes (see Case A below). A more fundamental difficulty is that operant conditioning requires, by definition, new learning. The patient must learn and act upon the association between the behavior and the consequence, even if the learning is implicit. To date, there has been little evidence other than the anecdotal that such learning is possible. One intrusive nursing-home patient described by Bird et al. (1995) was enduring the aversive consequences, including violence, of entering other residents' bedrooms many times a day without these consequences' changing her behavior.

Despite these caveats, investigation of operant conditioning to reduce excess behavioral disability in dementia is probably worth pursuing, given the paucity of direct behavior change techniques in dementia that have been subjected to even the most cursory empirical investigation. Like much else in this area, the experimental and clinical work remains to be done. The possibilities will remain speculative until systematic studies are undertaken to investigate the conditions under which persons with dementia are able to associate consequences with a behavior and act on those consequences and/or until many detailed clinical case series are published showing the effectiveness of differential reinforcement in dementia.

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Use of Residual Memory Capacity

It has been clear since verbal-learning retention studies in the 1980s (e.g., Hart, Kwentus, Taylor, & Harkin, 1987; Kopelman, 1985) that under certain conditions, persons with mild to moderate dementia can remember limited amounts of new information over clinically significant intervals. More recent experimental and clinical work is presented in Chapter 12, including the finding that patients can be assisted to learn and retain the association between a cue and a behavior. For example, the intrusive nursing-home resident alluded to above was taught to associate a large stop sign with stopping and walking away. Intrusive incidents dropped from 40 a day to nil when the sign was displayed in no-go areas (Bird et al., 1995). This and similar interventions (see also the case study in Chapter 12) can best be conceptualized as helping the patient to remember information that will cue more adaptive behavior.

The Case-Specific Approach: Four Studies

Two pairs of case studies are presented here to illustrate some clinical and research issues. They have been chosen because of the apparent similarity of the behavior in each pair, and because every case is an example of cognitive impairment interacting with other factors to produce excess behavioral disability. All took place in excellent facilities with a good understanding of dementia. Figure 13.1 shows the frequency of each problem behavior prior to the intervention and at follow-up.

Repetitive Questions

Case A

Mrs. A, 81 years old, with probable Alzheimer's disease, lived in a dementia-specific unit. Her MMSE score was 9, and she was dependent in most personal care. She delivered her repertoire of questions up to 150 times per hour on occasion, though the mean was about 45. The problem had at least an 18-month history. Some questions concerned her mother; others were helpless inquiries to which she knew the answer. Replies would briefly satisfy her, but then she would forget and ask again, often attaching herself to staff like a limpet Only somebody who has not experienced this common phenomenon could regard it as a minor irritation. Previous failed interventions had included antidepressants and low-dose anti-psychotics (producing a severe drug reaction), and frequent validation therapy (Feil, 1993) on the grounds that unresolved issues about her mother were responsible.

Assessment suggested that during a life of deprivation and insecurity, Mrs. A had developed a sophisticated verbal repertoire for gaining emotional reassurance. The referred behavior appeared to be the remnants of this technique, reduced by cognitive decline to a few questions, and exacerbated by inability to remember that she had just asked one. Behavioral experimentation showed that reassurance could be provided by holding and stroking Mrs. As hand, and the questions could be ignored. They would rise to a crescendo in an extinction burst, then cease, with Mrs. A often calm enough to be left. This was the basis of the intervention, and though there was noncompliance by some staff, there was a maintained reduction in questions to manageable proportions (Figure 13.1).

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Case B

Mr. B, 72 years old, with probable Alzheimer's disease, lived in a dementia-specific unit. He refused cognitive testing but was assessed in the moderate range on the Clinical Dementia Rating (CDR; Morris, 1993). Mr. B's repertoire was more diverse than Mrs. A's but, equally, appeared due to a chronic need for reassurance.

Figure 13.1. Graphical depictions of four case studies where cognitive impairment interacts with behavioral disability.

Assessment revealed wartime service in Lancaster bombers and, ever since, high anxiety and low tolerance of noise. A number of interventions were tried. Relocating him to a quiet wing produced a dramatic decrease in questions, but his anxiety and behavior eventually affected other residents, and the wing became severely disrupted and noisy. Attempts to preempt common questions-for example, providing a continuous supply of his favorite Lancaster bomber shirts-had no discernible effect. Following Case A, differential reinforcement was also attempted. His questions were systematically ignored, but he was given verbal reinforcement and company when quiet, though, unlike Mrs. A, he did not like physical touch. Figure 13.1 shows the total failure of these efforts. Mr. B was finally medicated with anti-psychotics. This severely reduced his self-care skills, but it also reduced his anxiety. It was probably the optimum outcome. He died, a relatively calm man, 8 months later.

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Resistance in Personal Care

Case C

Mrs. C, 82 years old, with probable Alzheimer's disease, lived in a dementia-specific facility. She was untestable and was assessed in the severe category on the CDR. She was referred for violent resistance and screaming during bathing, which was necessary at least weekly because of incontinence. Showering was even more dangerous. The problem had continued for more than 6 months.

Observation suggested that what many staff were interpreting as stubbornness or fierce independence was actually panic. Family information revealed lifelong avoidance of exposure of her body because of unsightly birthmarks and lifelong avoidance of aquatic leisure activities. A family story of a near-drowning as a girl had resonance with some of her screamed words during bathing. Consistent with many phobias, anticipatory anxiety appeared to be worse than exposure; once she was in the bath, her screaming would gradually diminish. However, it would then rise to unstoppable levels when her hair was washed.

Experimentation showed that Mrs. C's hair could be washed without incident at a hair salon. Thereafter, reducing prebath cues to a minimum (e.g., undressing her in her bedroom) and inducing calm before entering the bathroom virtually eliminated resistance. Noncompliance by some staff led to rereferral at 6 months, when the intervention still proved to retain its effect (Figure 13.1). The failure in the second week of follow-up monitoring (7 minutes' screaming) happened when a nurse unfamiliar with the procedure attempted bathing Mrs. C, making this a de facto ABAB design.

Case D

Mrs. D, 87 years old, had progressive dementia of unknown etiology and lived in a hostel. She had no intelligible expressive speech and was dependent in most self-care, falling in the moderate category on the CDR. She was massively incontinent, and the problem was violent resistance to intimate personal care, which had been escalating over 6 months. Mrs. D. would consistently allow only two familiar nurses to toilet or shower her, and only after skilled manipulation of bribes, assertion, and persuasion. The result was pressure on the two favored staff and also Mrs. D's often remaining in soiled and soaked clothing until one of them came on duty. Other staff, distressed by repeated traumatic failures, were demoralized. Anti-psychotic medication quieted Mrs. D but produced severe side effects.

In this case, the resistance was due to fierce independence. Assessment revealed a history of mild obsessive-compulsive disorder (OCD) related to cleanliness. Mrs. D had coped by doing everything for herself, including during her early years in the hostel, but declining cognitive function had now compromised self-care. The goal here, therefore, was not to reduce her fear of surrendering control-probably an impossible task-but to empower more staff to attempt intimate personal care and develop the necessary blend of skills. Information was provided to all staff about Mrs. D's past and about OCD to put her behavior into context, and the two favored nurses were encouraged to provide hands-on and emotional support as others tried to shower Mrs. D. Staff motivation to do something was assisted serendipitously by a serious fall suffered by Mrs. D when she was still on anti-psychotic medication preintervention.

Figure 13.1 shows little reduction in time taken to shower and toilet Mrs. D, but this was not the object of the exercise. The figure also shows the eventual cessation of unsuccessful attempts to do so; all nurses were now able to perform these tasks.

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Comment

These few cases are sufficient to raise some important clinical and research issues. The effect on staff of Mrs. D's drug-induced fall shows the frequent difficulty of attributing the cause of an outcome to any specific component of the intervention, especially when there is delay before change is apparent. Case B illustrates the need for more honesty in the literature; failures are almost never reported. It is possible that psychosocial intervention success rates are higher than the success rates for drugs (Burgio & Bourgeois, 1992), but we will never know until it becomes commonly accepted that reporting failure is as important in advancing scientific knowledge as reporting success. The need for long-term follow-up is clearly demonstrated by these cases. Had we assessed outcome 1 week after moving Mr. B to the quiet area, we could have reported a miracle cure. Conversely, Case D shows that some interventions need time to take effect; staff had gradually to build up skill and confidence.

The simple before-and-after graphs in Figure 13.1 illustrate the fact that more sophisticated quasi-experimental designs are not always possible. All these cases were referred because carers could no longer cope and needed immediate help. Further, when an intervention is in place, carers or the patient (e.g., Bird et al., 1995) are rarely willing to reverse it for the sake of methodological rectitude.

At a more global level, these cases illustrate the profoundly idiosyncratic nature of problems suffered by persons with dementia and, by extension, by their carers. It follows that attempts to classify them in a kind of DSM-ization enterprise must, at this stage, be treated with caution. This is true whether the classification is based on manifested behavior (e.g., Patel & Hope, 1992), behavior clustered into pseudopsychiatric syndromes (e.g., Sultzer, Berisford, & Gunay, 1995), or presumed environmental etiology (Cohen-Mansfield & Werner, 1997). Though preferable to the common practice of labeling absolutely everything as agitation (e.g., Finkel et al., 1995), present classification systems have severely limited heuristic value. They may even be pernicious, leading to assumptions that standard treatments for named syndromes like repetitive questions or noncompliance exist or can be found.

Yet, in each pair of cases, though the manifested behavior was almost identical, the treatment was not. In Cases A and B, even the etiology was similar, but the technique successfully used for Case A was completely ineffective when adapted for Case B. An alternative method of providing reassurance could be found for Mrs. A; probably only one-to-one attention all day would have sufficed for Mr. B. Where etiology is different, as in Cases C and D, it is usually the most salient factor that informs treatment choice. Nevertheless, there are many others. These include the nature and resources of the physical environment, the emotional resources and competence of the carers, and the patient's level and nature of cognitive impairment including insight. Even the clinical goal will vary: In Case C, it was to reduce the behavior by reducing the trauma of bathing; in Case D, it was to empower more nurses to cope with a behavior that was never likely to change.

Profound idiosyncracy case to case in both etiology and intervention options means that psychosocial studies that attempt to apply a standard treatment for a named syndrome for example, operant conditioning for repetitive questions are unlikely to yield much fruit. The syndrome remains an illusive concept at this stage of the research enterprise; the standard treatment is, accordingly, a chimera. Until vastly more

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case studies appear following the lead of investigators like Hussian and Brown (1987) in reporting the exact technique or combination of techniques used and objective measures of outcome including all failures it will not be possible to identify which tools are more likely to fit particular case profiles.

At present, in most cases, the hypothesis-testing, case-specific method remains the approach of choice. What health workers require in any given case is access to an extensive tool kit of techniques, including pharmacological methods, that have been scientifically validated and that can be flexibly applied to each idiosyncratic case profile. As is apparent throughout this chapter, empirically validated techniques are astonishingly few in number.

Summary and Conclusion

When rehabilitation in dementia is defined as partial cure or recovery, there is little evidence, despite 30 years of valiant effort, that this is possible by cognitive means. There is no evidence at all that gains, if any, translate to the amelioration of problems encountered in everyday life, surely the minimum goal. When rehabilitation is defined as minimizing the emotional and behavioral sequelae of cognitive loss and maximizing the potential of the social, physical, and sensory world to make it less confusing and confronting, there appears to be considerable scope. Overlaid are potential methods of directly reducing excess behavioral disability. Unfortunately, the evidence for the efficacy of techniques in this area remains limited because the hard research simply has not been done. Nevertheless, more than 90 years after Alzheimer's original patient was referred for behavioral problems (Alzheimer, 1907), the situation at last is changing. Careful scientific studies are beginning to emerge and to produce promising findings.

The overall conclusion is that the top-down approach that has driven the quest for a generalized cognitive or drug treatment needs to be supplemented by an equal or larger amount of effort that chips away at the clinical level. Much more research is required that focuses not on delaying or reversing the dementing process, but on methods for ameliorating the everyday behavioral and affective consequences of progressive cognitive loss. These problems are common (Cohen-Mansfield et al., 1993) and are a major source of burden to family members and the major reason for transfer to full-time residential care (Donaldson, Tarrier, & Burns, 1997; Morriss et al., 1996), where they also cause significant distress to professional carers (Hallberg & Norberg, 1995; MacPherson et al., 1994).

Unfortunately, the findings of cognitive science remain largely peripheral to the concerns of carers dealing with these problems. Reading many cognitive texts, one could be forgiven for believing that the worst difficulty likely to be faced by a patient with dementia is inability to remember appointments or find the lounge. Yet the severe problems alluded to in this chapter cannot be separated from the cognitive aspects of dementia. Profound cognitive impairment, in interaction with diverse within-patient and environmental characteristics, plays a major role in etiology. For this reason, cognitive science has the potential to make a major contribution to management, not only in the development or adaptation of specific techniques (e.g., the work in Chapter 12), but also more generally. A sophisticated understanding of the cognitive sequelae

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and retained learning possibilities in dementia is a critically needed adjunct in such diverse research areas as the rehabilitative effects of changes in the physical environment, use of reinforcement, and education to develop or change attitudes and skills in nursing-home staff.

What is required is the difficult and methodologically unappealing business of identifying individual problems suffered by persons with dementia, devising interventions to ameliorate them, and devising valid ways of measuring the outcome of such interventions. A large body of such work, informed by direct consumer need rather than laboratory-based assumptions, would eventually provide data to feed back into more generic research. Much of this generic work could then be done in controlled laboratory conditions, so long as findings were then tested again in the clinical setting.

Until this happens, psychosocial work on dementia at the clinical level will be based primarily on unsupported assertion. It is safe to assume that many more texts, written with information unsupported by evidence, will assert that environmental cues are essential in dementia care, but providing no details about what types of cues have proven efficacy and how one gets patients to notice them, learn what they mean, or, having done so, act on them. The scientific vacuum means that there is no way for consumers, often desperate for answers, to separate the wheat from the chaff. In at least one major Australian university, a technique of proven inefficacy (classroom RO) and one of unproven efficacy (validation therapy; Feil, 1993) are taught in nursing courses as evidence-based practices. Such phenomena are by no means rare.

In 1979, Edgar Miller, a pioneer in the application of the information-processing framework to memory in dementia, observed, Psychologists have not so far been very forthcoming in trying to apply their skills and knowledge to the amelioration of the disturbances in memory and other functions that occur in the elderly (p. 144). There is a strong tradition of commitment to the scientific method in cognitive psychology. Until we start coming to grips with applying it to the analysis and amelioration of the difficult individual behavioral and affective problems suffered as a result of cognitive impairment by this frail, unstable, vulnerable, and highly heterogeneous population, Miller's claim will continue to resonate. The fact that extreme methodological difficulties are involved is no excuse for not trying.

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Cognitive Rehabilitation in Old Age
Cognitive Rehabilitation in Old Age
ISBN: 0195119851
EAN: 2147483647
Year: 2000
Pages: 18

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