Cognitive Rehab After ECT: New Journal Article

Advances in Psychiatric Treatment (2007), vol. 13, 90-100 doi: 10.1192/apt.bp.106.002899

Cognitive rehabilitation: assessment and treatment of persistent memory impairments following ECT

Maeve A. Mangaoang & Jim V. Lucey

Abstract
Few tests address the types of memory problem commonly reported after electroconvulsive therapy (ECT). Here, we focus on the importance of neuropsychological assessment in ECT-treated patients and describe a number of tasks that may be useful in measuring the everyday memory problems of such patients with ongoing memory difficulties. At the time of writing, no attempts have been made to rehabilitate patients who experience persistent adverse cognitive effects, but clinicians should be aware of the potential beneficial role of cognitive rehabilitation in the treatment and management of these effects.

In a recent issue of APT, Robertson & Pryor (2006) drew attention to a number of issues regarding the assessment of cognitive function in patients treated with electroconvulsive therapy (ECT). In particular, they highlighted the paucity of tests that are sensitive and relevant to the specific memory problems commonly reported after ECT. Here, Mangaoang & Lucey return to this problem, discussing neuropsychological assessment in ECT-treated patients.

Electroconvulsive therapy (ECT) has been used for many years, but it remains one of the most controversial psychiatric treatments. In recent years, a considerable amount of research has attempted to highlight the efficacy and safety of ECT, in addition to emphasising the overall improvements in current ECT techniques, equipment and standards (Sharma, 2001; Chung, 2002; UK ECT Review Group, 2003; Prudic et al, 2004). However, there also exists a growing body of research consistently reporting the adverse cognitive and psychological consequences of ECT among a substantial minority of patients (Johnstone, 1999; Service User Research Enterprise, 2002; Koopowitz et al, 2003; Rose et al, 2003; Scott, 2005). Although discrepancies exist between clinician-led or hospital-based studies and those undertaken in collaboration with patients regarding the nature and extent of adverse side-effects, there is a general consensus that memory loss (Box 1) is the most frequently and consistently reported side-effect following ECT (Rose et al, 2003). There have been many conflicting accounts of the severity and duration of the memory and other cognitive difficulties (Weeks et al, 1980; Squire et al, 1981; Templer & Veleber, 1982; Squire & Slater, 1983; Lisanby et al, 2000; Brodaty et al, 2000), but to date there has been a distinct lack of routine neuropsychological assessment of individuals receiving ECT at any stage during their treatment.

Designing an assessment battery that is sensitive to the nature of the everyday problems experienced by patients with memory and/or cognitive disability is challenging, and standard neuropsychological tests may not adequately reflect the levels of impairment experienced by patients on a daily basis (Robertson & Pryor, 2006). Thus, the use of novel, personally relevant memory tasks such as those described below may be warranted.

Furthermore, no attempts have been made to provide any form of memory rehabilitation or cognitive retraining to patients who experience persistent memory and other cognitive problems in these areas following ECT. Here we argue that cognitive rehabilitation could be offered to such patients as a means of addressing these difficulties in a constructive way.

The importance of assessment

What is striking from the literature in this area is the lack of routine, formal assessment of patients’ neuropsychological performance following a course of ECT, despite the long-known risk to memory functioning (Squire & Chace, 1975; Squire et al, 1975; Freeman et al, 1980; Squire & Slater, 1983; Robertson & Pryor, 2006). Furthermore, the lack of consistency in the types of measures used to assess patients has made it difficult to clarify the extent and duration of the reported cognitive problems and the impact they may have on the individual’s overall quality of life and sense of self.

In Ireland, for example, there is no published research on the long-term effects of ECT on cognitive functioning among Irish patients. The failure to conduct such assessments means that there may be a significant delay in detecting patients who have experienced a marked decline in memory function.

Guidelines

The importance of assessing and monitoring patients’ cognitive function throughout their treatment has been recognised in guidelines on the commissioning of ECT services within the National Health Service (NHS) (Royal College of Psychiatrists, 1995,1999), and the ECT Accreditation Service (ECT Accreditation Service, 2005) includes assessment and monitoring of cognitive function as standards required for accreditation of a clinic. However, there has been a relative neglect to include such measures in routine clinical practice. It appears that even when they have been explicitly recommended (Freeman et al, 1980; Salford Community Health Council, 1998 ; Royal College of Psychiatrists, 2005) patients who report persistent memory loss have not been systematically followed-up or referred for neuropsychological assessment. As a result, their progress or deterioration over time in terms of cognitive performance has not been monitored.

Monitoring patients’ self-reports of adverse side-effects to ECT has also been recommended by the Royal College of Psychiatrists (1995, 2005) and the National Institute for Clinical Excellence (NICE, 2003). Benbow & Crentsil (2004) have shown the importance of measuring such experiences during treatment, as it allowed the ECT staff to take immediate action to try to relieve the problems. For instance, if patients reported persistent confusion or memory difficulties, staff could change from bilateral to unilateral ECT or increase the interval between treatments.

Longer-term implications

The failure to adequately provide neuropsychological assessments to patients receiving ECT means that the impact of additional, subsequent episodes of depression and/or future courses of ECT on overall cognitive functioning remains unknown (Robertson & Pryor, 2006). Establishing a baseline of functioning before an individual’s first ECT treatment is extremely important in terms of its association with ‘cognitive reserve’. This concept refers to individual differences in factors such as education and occupation, which may be protective against ECT’s adverse effects on memory functioning (Legendre et al, 2003).

The Society for Cognitive Rehabilitation (SCR; Malia et al, 2004) recommends that a combination of standard and novel tasks to assess current cognitive status should be administered to patients. Objective and subjective self-report questionnaires and collateral information from family or caregivers should be used, and the assessment battery should provide sufficient information to form hypotheses about the underlying cognitive impairments and deficits that interfere with the individual’s cognitive functioning. These recommendations concur with Robertson & Pryor’s (2006) proposal that ECT-treated patients who report ongoing memory disability should be referred for neuropsychological assessment. The purpose of this is both to determine their general cognitive abilities and to measure specific cognitive functions, such as attention, concentration and information processing, that may be related to memory functioning in everyday life (Ponds & Hendriks, 2006).

Making use of assessments results

Rather than merely describing problems, the results of neuropsychological assessments should be explained in terms that the patient can understand and explicitly related back to the functional problems that have been identified (Mateer et al, 2005). They should be interpreted in a holistic way that takes account of the individual’s personality and emotional characteristics and used to inform decisions about preparing a suitable rehabilitation programme (Malia et al, 2004).

Neuropsychological assessment of memory

There are many factors to consider in the neuropsychological assessment of patients receiving ECT. These include the selection or development of appropriate testing materials, the timing of testing sessions (Robertson & Pryor, 2006) and the effects of factors such as mood, metamemory and memory self-efficacy on performance (Mateer et al, 2005; Ponds & Hendriks, 2006). Additional problems, such as limited access to neuropsychology services, financial and time constraints, may have an impact on the number and frequency of assessment sessions that can be undertaken.

Design of appropriate tests

Although Robertson & Pryor (2006) recommend that patients who have had ECT should be assessed with the kind of neuropsychological tests that are used for patients with known or suspected brain injury, they acknowledge some of the problems associated with these traditional, standardised tasks. The main challenge appears to be designing tests that are sensitive to the memory and other cognitive demands placed on patients in their everyday lives. This task is made even more difficult by the realisation that patients with memory disability may not be able to give reliable self-reports of their memory functioning (Cronholm & Ottosson, 1963; Robertson & Pryor, 2006). Rose et al (2003) note that neuropsychological assessment of the extent of memory loss in ECT patients has tended to focus on the ability to form new memories (anterograde memory, Box 1), whereas patients have commonly reported the loss of autobiographical memory (retrograde amnesia, Box 1) following ECT (Coleman et al, 1996; Peretri et al, 1996; Donahue, 2000). However, loss of autobiographical memory does not appear to have been adequately investigated (Robertson & Pryor, 2006). Furthermore, alternative versions of tests may be required to reduce practice effects over repeated assessments.

Timing of testing

As mentioned above, encouraging patients who are undergoing a course of ECT to give self-reports of any adverse side-effects can be beneficial in terms of allowing staff to take immediate actions to reduce or relieve these effects (Benbow & Crentsil, 2004). However, in many studies the premature assessment of memory and overall cognitive functioning following ECT has led to inaccuracies and underestimations of patients’ impairment (Squire & Slater, 1983; Weiner et al, 1986; Coleman et al, 1996; Peretti et al, 1996; Donahue, 2000; Rogers et al, 2002; Robertson & Pryor, 2006). It may take a number of months for patients to gain a more stable view of permanent changes in their memory and cognition (Weiner et al, 1986; Coleman et al, 1996; Donahue, 2000).

A further problem relates to the ambiguity of meaning in the phrase ‘short-term memory loss’. Does it refer to type of memory or duration of loss? Robertson & Pryor (2006) recommend that the phrase ‘temporary memory loss’ should be used when referring to duration. Patients who interpret short-term memory loss in terms of duration may not be inclined to complain about memory difficulties, believing that they are to be expected and will resolve within the ‘short term’. This may lead to an underreporting of memory problems among patients who are assessed only a few days or weeks after the completion of ECT and highlights the importance of scheduling follow-up assessments after the 6-month time point (Service User Research Enterprise, 2002; Robertson & Pryor, 2006).

Effects of mood and emotional valence on performance

Many studies have shown that individuals who are depressed are more likely to recall negative events than positive or neutral ones (Teasdale et al, 1980; Parrott & Sabiny, 1990; Williams et al, 1988; Lemogne et al, 2005). The performance of people without depression on tasks measuring memory and cognition may also be influenced by their current mood. Recently, Beatty et al‘s (2006) study involving healthy adults showed the significance of both current mood and emotional valence (the subjective emotions associated with an event) on participants’ ability to recall events they had experienced over the past year. Therefore, any assessments of cognitive and memory functioning in patients who have received ECT should take account of the individual’s mood at the time of testing and also whether they perceive the event recalled as positive, negative or neutral.

box1.jpg
box2.jpg
The concept is strongly linked to Mateer et al‘s (2005) theory of metamemory, which is defned as an awareness of one’s own memory processes, knowledge and use of memory strategies, self-perceptions of one’s memory abilities and beliefs about the functioning of ones’ own memory.

Memory self-efficacy and metamemory

According to Ponds & Hendriks (2006), patients’ complaints about their memory do not necessarily reflect memory deficits; furthermore, there may be large discrepancies between the severity of memory disturbances as measured by memory tests and the impact of these problems in daily life. Finding only moderate correlations between self-reported memory problems and objective results on standardised neuropsychological assessments, Ponds & Hendriks introduced the idea of memory self-efficacy (Box 2) to explain this discrepancy. They argue that an individual’s beliefs and perceptions about their memory may be extremely influential in determining their level of engagement and performance during memory assessment. The belief that one has a poor memory may lead to increased dependence on others, avoidance of memory challenges, and a pattern of helplessness and demoralisation when faced with memory difficulties (Elliot & Lachman, 1989). Additional evidence of the impact of self-perceived memory capacity on control of memory efficiency (Cavanaugh & Poon, 1989; Hertzog et al, 1990; Jonker et al, 1997) supports the argument that neuropsychological assessments of patients who have had ECT should take account of the patient’s own metamemory or sense of memory self-efficacy.

Novel tasks for measuring everyday memory

A few years ago one of us (M. M.) was involved in a study of the effects of surgery for temporal lobe epilepsy (Mangaoang et al, 2004). The study team developed tasks for assessing aspects of everyday memory functioning and spatial representation in patients after surgery (Box 3). These have since been administered to large numbers of healthy control individuals of all ages and to people with chronic major depression (McMackin et al, 2005). These tasks, which are outlined in this section, might be considered for use with patients following ECT.

Sensitivity to the nature of the patients’ memory problems

Episodic and autobiographical memory

The Mundane Memory Questionnaire specifically measures personally relevant episodic memory of typical daily events over the previous four consecutive days. Participants are asked to indicate (by circling either ‘yes’ or ‘no’) whether they recall a particular event, for example, watching television or eating lunch. If the event is recalled, they are asked to give additional information such as what programmes they watched or what food they ate. If participants are unable to provide additional details, they are asked to proceed to the next question.

This measure was extremely sensitive to the types of everyday memory problem experienced by the patients in our study of temporal lobe epilepsy (Mangaoang et al, 2004). It differs from questionnaires such as the Everyday Memory Questionnaire (Sunderland et al, 1984), the Prospective and Retrospective Memory Questionnaire (Smith et al, 2000) and the Cognitive Failures Questionnaire (Broadbent et al, 1982) in that it does not require patients to rate their own memory performance, thereby taking account of the observation that some people with memory problems cannot accurately rate the level of their impairment.

box3.jpg
The Everyday Memory Interview is based on an interview used by Eldridge et al (1994) in their assessment of the role of schemas in autobiographical memory. In a tape-recorded interview, the participant is asked to describe, in as much detail as possible, their typical day, yesterday and a day in the previous week, in counterbalanced order (to control for order effects or bias). The interview is scored by focusing on the number of basic activities that are recorded for each of the target days. Discourse analyses of the interview content can also be undertaken to measure the frequency of repetition of events, pragmatic problems and the use of verbal tics.

The merit of both the Mundane Memory Questionnaire and the Everyday Memory Interview is that they measure the ability of patients to recall personally relevant events, are straightforward to administer and are free from practice effects. Modified versions of the tasks could also be completed by patients’ caregivers or spouses, should collateral information be desired.

Semantic and phenomenal characteristics

Although both episodic and autobiographical memory have been widely researched, very few studies have used tasks that are concise, distinguish between semantic and episodic information, and control for emotional valence. Semantic information consists of general knowledge: things we know without any connection to personal experience, whereas episodic information refers to details such as time, person, place and emotions about specific personally experienced events. Levine et al‘s (2002) Autobiographical Memory Interview separates the semantic from episodic details of events. Beatty et al (2006) adapted and extended this measure to show how the recall of specific personally relevant events over the previous 12 months was influenced by whether participants construed the events as positive, negative or neutral. The transcribed interviews were analysed in terms of the number of specific episodic details recalled for each type of event, thereby controlling for the emotional valence of the event. This interview can be extended to include events from the less recent past, in order to gain a thorough appreciation of the extent of a patient’s retrograde amnesia.

Beatty et al (2006) also used the Memory Characteristic Rating Scale (adapted from Johnson et al, 1988) in conjunction with Levine et al‘s (2002) Autobiographical Memory Interview to measure the phenomenal characteristics of the different events. The Memory Characteristic Rating Scale uses a seven-point Likert scale to rate the vividness with which participants can recall specific aspects of an event, such as visual and auditory details. This combination of tasks facilitates examination of the association between the emotional valence of an event and the vividness with which different characteristics can be recalled.

Topographical memory

The effects of ECT on topographical memory, way-finding and spatial representation are largely unknown. We can find only one self-report of such deficits (Anonymous, 1965). Assessments of patients who have received ECT do not appear to consider the possibility of such impairments, despite their impact on everyday life. In our work on temporal lobe epilepsy (Mangaoang et al, 2004; Roche et al, 2005), we developed a number of tasks (the Landmark Location, Landmark Recognition and Virtual Map tasks) to measure the ability of patients with left or right unilateral hippocampal damage to recognise photographs of well-known Dublin landmarks and to accurately name their location on a modified map of the city. Patients also described in writing the routes they would take to get from one landmark to another on a map of a virtual city. These tasks were extremely sensitive to the everyday way-finding problems experienced by many of the patients, particularly those with right-sided hippocampal damage (Mangaoang et al, 2004) and could potentially be used to identify whether patients treated with ECT experience similar difficulties.

Sensitivity to metamemory and mood

In considering metamemory and memory self-efficacy (Box 2), the study team used a simple memory rating scale, asking patients to rate their own perception of their current memory functioning at the time of assessment on a five-point Likert scale (1 = ‘very bad’, 5 = ‘excellent’).

Patients’ self-reported symptoms of depression can be assessed using the Beck Depression Inventory (Beck et al, 1996). Alternatively, McMackin et al (2005) have used a mood rating scale that asks patients to rate their mood state at the time of assessment on a nine-point Likert scale (1 = ‘worst you’ve ever felt’, 9 = ‘best you’ve ever felt’). Either instrument could be easily incorporated into an assessment battery for patients receiving ECT.

Potential role of memory rehabilitation and cognitive retraining

Although reports have claimed that about one-third of people receiving ECT experience persistent memory loss (Service User Research Enterprise, 2002; Rose et al, 2003; Scott, 2005), it is unclear whether patients receive treatment or assistance from psychiatrists or other mental health professionals to deal with this disability. We do know that some patients turn to sources of help outside psychiatry (e.g. self-help groups) for support (Johnstone, 1999). This failure to attempt to rehabilitate patients may reinforce the negative public image of ECT specifically and psychiatry in general.

Adopting extisting techniques: brain trauma

The importance of carrying out detailed neuro-psychological assessments of patients following ECT in order to identify persistent cognitive problems was recognised over a decade ago (Calev, 1994). Unfortunately, however, even when cases of severe and persistent memory loss are highlighted in the literature, no study has recommended or attempted to provide any kind of rehabilitation or follow-up care. Documenting persistent and severe deficits in memory and cognition is not enough; patients need to be helped to adjust to the major effects that such disabilities may have on their everyday lives. Robertson & Pryor (2006) recommend that tests assessing neuropsychological function of brain-injured patients be used for ECT-treated patients. We would argue that the cognitive rehabilitative techniques that are used with brain-injured patients should also be considered for use with patients experiencing memory and/or other cognitive disability following ECT.

During the past 20 years, the course and nature of cognitive difficulties after brain injury and the key components of rehabilitation have become better understood. The significance of personal background, the range of emotional responses to injury and its consequences, and the role of coping skills in long-term adjustment are now more readily accepted (Mateer et al, 2005).

Cognitive rehabilitation therapy

Cognitive rehabilitation therapy is ‘a systematic, functionally oriented service of therapeutic cognitive activities and an understanding of the person’s behavioural deficits’ (Malia et al, 2004). Its aim is to achieve functional changes by reinforcing or strengthening previously learned patterns of behaviour, or establishing new patterns of cognitive activity or mechanisms to compensate for impaired neurological systems (Bergquist & Malec, 1997). Cognitive rehabilitation therapy has a large evidence base and has been widely researched among patients with acquired brain injury.

Memory rehabilitation

Recently, Ponds & Hendriks (2006) have described what appears to be the first formal attempt to offer a rehabilitation programme focusing on memory to patients with epilepsy. However, no attempts have yet been made to extend such treatment to patients who experience memory deficits following ECT.

What rehabilitation could achieve

Designing a rehabilitation programme for patients with memory or other cognitive disability associated with ECT would constitute the first step towards treating these deficits rather than merely reporting them. Such a programme would also acknowledge the individual’s difficulties and the challenges they face in coping with the demands of everyday life.

How it could be done

Baseline and post-treatment neuropsychological assessments could be used to clarify the nature and extent of cognitive difficulties. From there, appropriate steps towards memory rehabilitation and cognitive retraining (see below) could be undertaken in individual and/or group sessions, and could be extended to include the individual’s family or caregivers. Follow-up assessments of progress would allow any changes in cognitive status to be measured and also to monitor the transfer of acquired skills to other areas of functioning such as the social and occupational domains of the individual’s life. In this way it would be possible to determine whether the rehabilitation programme was having a beneficial effect on the patients’ overall quality of life.

Ultimately, successful practical attempts to address the impact of cognitive disabilities on the lives of patients treated with ECT would be welcomed not only by the patients themselves but also by their relatives and caregivers. The provision of such a service might also improve potential patients’ attitudes towards ECT, by reassuring them that, should they develop a persistent cognitive problem following treatment, some form of structured treatment and assistance would be made available to them. This might help the decision-making process for patients who are considering ECT as a treatment option.

Design of a successful rehabilitation programme

There are many factors to consider in the design of a cognitive rehabilitation programme. These include understanding that rehabilitation is a collaborative process, recognising the importance of including family and/or caregivers and being sensitive to the impact that a patient’s level of awareness, meta-memory, mood and motivation can have on their ability to take part in a programme. Premorbid personality and psychological functioning are also extremely important. Therefore, cognitive rehabilitation should involve work on the patient’s psychosocial skills such as coping, anxiety control, self-esteem, self-concept, motivation, locus of control and adjustment (Malia et al, 2004).

Existing programmes

Mateer et al (2005) believe that a combination of neuro-rehabilitation, pharmacotherapy and cognitive-behavioural therapy is often needed. Thus, many programmes incorporate multiple interventions such as attention training, memory compensations, skills training, feedback on performance, psycho-education, stress management, confidence-building and psychotherapy aimed at increasing self-awareness, acceptance and adjustment.

Cognitive rehabilitation programmes that take into account the emotional as well as the cognitive aspects of the injury appear to offer patients the best chance of adapting to their altered situations (Mateer et al, 2005). Being aware of the patient’s emotional well-being is extremely important as it may help identify the development of cognitive distortions such as catastrophic thinking (in which the individual imagines the worst possible outcome of events and situations). Catastrophic thinking can occur when an individual has a distorted belief about the implications of a cognitive error or episode of forgetfulness (Mateer et al, 2005). For example, a patient may interpret normal lapses of memory as confirmation of a memory impairment that will never improve. They may have difficulty in distinguishing between a normal memory lapse and a cognitive error that commonly results from a genuine brain impairment and this may reduce the individual’s ability to cope. Cognitive appraisal and beliefs of self-efficacy are increasingly recognised as being crucial to an individual’s ability to manage stress (Lachman et al, 1992; Mateer et al, 2005).

Recommendations for successful rehabilitation

Approaches to successful cognitive rehabilitation consider both general and specific aspects of the patient’s difficulties (Box 4). The general aspects focus on psychoeducation covering the effects of brain damage and cognitive difficulties, the impact of personality changes and emotional reactions, and the perception of cognitive disorders (Malia & Brannagan, 2004; Ponds & Hendriks, 2006). Aspects specific to memory rehabilitation address the types of memory problem that should be targeted for treatment and the best strategies that could be used (Ponds & Hendriks, 2006). Treatment plans should be given to the patient, caregivers or family members and the appropriate hospital staff. Progress on the treatment plan should be reviewed regularly (Malia et al, 2004).

box4.jpg

Psychoeducation

At the earliest possible stage, patients should be fully informed of their cognitive problems and their likely prognosis in terms of cognitive function (Malia et al, 2004; Mateer et al, 2005). Education should take place both in formal educational groups for patients and their careers/families and during regular individual contact with the patient, and it should be seen as an ongoing process (Malia et al, 2004). Group sessions should focus on understanding specific brain injuries and what rehabilitation is all about, cognitive and emotional problems following brain injury, how to cope with the changes experienced and developing a new sense of self.

The Society for Cognitive Rehabilitation (Malia et al, 2004) states that the aim of psychoeducation is to help the patient develop appropriate self-awareness, self-esteem, confidence, feelings of personal control and a trusting, working relationship with the therapist. It believes that the importance of education cannot be overemphasised: without good awareness, much of what is subsequently offered will have no enduring effects on the individual’s life in the outside world.

At present, very few patients and families are informed about the consequences of acquired cognitive deficits for future life or the possibilities to train or restore memory (Ponds & Hendriks, 2006). Creating a realistic perspective about the impact and possibilities for improvement of memory problems is the first important step in every memory treatment programme. Mittenberg et al (1996) showed that giving head-trauma patients a booklet on recovering from head injury had a significant positive effect on the number, duration and severity of reported symptoms (headache, memory, fatigue, concentration difficulties, anxiety, depression and dizziness) at 6-month follow-up.

It is crucial to give patients information on ECT during the consent process (Robertson & Pryor, 2006). Moreover, if the results from neuropsychological assessments indicate a need for intervention, patients should also be given psychoeducation or information booklets such as those given to head-injured patients, as these can be extremely beneficial in helping to alleviate the distress experienced by patients with mild brain damage. The information may also help patients adjust to any persistent cognitive difficulties they experience.

Rehabilitation techniques and strategies

The aim of rehabilitation is not restoration but compensation (Malia et al, 2004). This can be achieved through the use of internal or external rehabilitation strategies and modifications to the environment. Strategies adapted for use with people who have epilepsy have been shown to improve many aspects of their lives, including attention and memory, emotional regulation and psychosocial functioning (Ponds & Hendriks, 2006). Cognitive rehabilitation should improve the individual’s ability to function as independently as possible in the least restrictive setting and its end result must be to improve quality of life and real-life skills (Malia et al, 2004).

Studies investigating memory rehabilitation have focused on alleviating many different aspects of memory difficulties. These include both general memory problems such as learning and retrieval, and specific problems with orientation, dates, names, faces, routes or appointments (Wilson et al, 2001; Boman et al, 2004; Avila et al, 2004). Rose & Brooks (2003) have highlighted the potential role of virtual reality paradigms in memory rehabilitation.

According to Ponds & Hendriks (2006), two general approaches are currently used in memory rehabilitation: drill and practice, and compensatory strategies.

Drill and practice

The patient is encouraged to practice repeatedly specific memory tasks. This leads to an improvement on these tasks only; there is no transfer of benefits to general memory.

Compensation

This second approach involves teaching the patient compensatory internal and/or external strategies for coping better with everyday memory problems. Internal memory strategies comprise verbal and visual techniques. These encourage the patient to focus on linking isolated items, via associations, and on enriching the ‘to-be-remembered’ information with additional retrieval cues. The success of internal memory strategies may be due to the deeper level of processing and the elaboration of information that this brings about (Ponds & Hendriks, 2006). External memory strategies include devices that are used to store information (e.g. a calendar, diary, voice recorder or portable electronic organiser) or remind people to perform a particular activity at a specifed time (Wilson et al, 2001; Hart et al, 2004; Kapur et al, 2004; Kirsh et al, 2004).

External strategies also include rearranging or making modifications to the individual’s environment, for example always keeping important items such as keys, wallet or purse and diary together in a labelled drawer in the kitchen (Ponds & Hendriks, 2006). Clearly, internal strategies require greater cognitive capacity and insight than external strategies because the strategy has to be remembered at the very time the individual is becoming overwhelmed with the demands of a task (Malia & Brannagan, 2004).

Process training

Strategy teaching is an integral part of what is known as ‘process training’ in cognitive rehabilitation (Malia et al, 2004). Process training attempts to stimulate poorly functioning neurological pathways in the brain in order to maximise their efficiency and effectiveness. It aims to overcome damage by using both new, undamaged pathways and old partially damaged ones. Process training involves comprehensive assessment and an analysis of the results of this using a practical cognitive model. Regular reassessment should be undertaken to ensure that the patient is moving towards the agreed functional goals, and the results should determine the direction and progress through the process-training exercises.

Evidence shows that the use of process-training materials designed on the basis of neuropsychological theories and arranged into a structured programme can lead to gains in the majority of patients (Boman et al, 2004). Studies have also highlighted the benefits of using computerised assessment and rehabilitation tools in memory process training (Moore et al, 2001; Tarn & Man, 2004; Cappa et al, 2005).

Why is post-ECT rehabilitation so uncommon?

There are many reasons why no one has yet tried to introduce cognitive rehabilitation for patients who report persistent cognitive difficulties after ECT Until recently there appears to have been a general reluctance among psychiatrists to admit that ECT could cause memory or other cognitive problems that are severe, persistent and disabling. Even when patients show significant impairments in memory functioning, there has been considerable debate regarding the extent to which these may be attributable to ECT as opposed to factors such as depression (Robertson & Pryor, 2006). There has also been a failure to acknowledge the effect these consequences on the patient’s sense of self (Johnstone, 1999).

The delay in implementing in routine clinical practice the guidelines and recommendations for the neuropsychological assessment of patients at any stage during programmes of ECT has been a significant contributory factor. Furthermore, when patients receiving ECT have been assessed, the focus has generally been on documenting deficits rather than suggesting how to treat them. It is possible that psychiatrists have limited knowledge about the types of cognitive problem experienced by patients, how they affect their lives and what could be done to facilitate the recovery of cognitive functions or compensate for persistent deficits. They may also be unaware of the potential role of rehabilitation, what it involves and how it may inform the treatment and management of patients under their care.

However, the main reason for the near absence of post-ECT rehabilitation may be the lack of specialist neuropsychological services available to ECT psychiatrists and treatment teams (Robertson & Pryor, 2006). A psychiatrist may well recognise the merit of rehabilitation programmes but have no one to whom the patient can be referred. In Ireland, neuropsychology services are severely underdeveloped, particularly outside of Dublin. Therefore, the lack of suitably qualified personnel with expertise in this area is a significant problem. Multidisciplinary team approaches that include psychiatrists, neuropsychologists, occupational therapists, social workers and community liaison officers may be an integral part of best practice recommendations in cognitive rehabilitation, but in reality such services may not be available.

Conclusions

All patients should undergo cognitive assessment before their first ECT session. Subsequent comprehensive neuropsychological assessments should be routinely undertaken if patients report memory and cognitive disability following ECT. Assessments should take into account baseline (pre-treatment) functioning and should use tasks that are sensitive to the nature of the patient’s everyday problems and that take account of the influence of patient’s current memory, sense of memory self-efficacy and mood. Reassessment should be scheduled after a sufficiently long interval (more than 6 months after treatment) so that persistent cognitive and memory deficits can be identified. Furthermore, patients’ self-reports of adverse side-effects, particularly those concerning deterioration in memory and cognition while undergoing a course of ECT, should be properly investigated by staff in the ECT clinic (NICE, 2003; Benbow & Crentsil, 2004).

It should now be clear that documenting neuropsychological deficits is not enough; a specific programme of cognitive rehabilitation should be designed and made available to all patients with persistent cognitive difficulties following ECT, and details about this treatment should be included with the information that patients receive prior to treatment. This programme should incorporate methods of training and strategy learning of known efficacy that aim to generalise skills to all domains of the patient’s life. Clinicians should be aware cognitive rehabilitation appears to be most successful when patient’s physical, psychological, social and vocational well-being are considered together and when the programme is extended to include the family or caregivers (Mateer et al, 2005).

Cognitive rehabilitation following ECT offers a constructive way of treating and managing the most commonly reported side-effect, which is currently left untreated. Over time, this acknowledgement of the presence and impact of cognitive disability in ECT-treated patients, together with the education of patients, families and mental health professionals about ways to deal with these difficulties, would lead to better overall adjustment by patients and the development of a new sense of self.

Declaration of interest

None.

References

*References of principal interest to clinicians.

*Anonymous (1965) The experience of electro-convulsive therapy by a practising psychiatrist. British Journal of Psychiatry, 111, 365-367.

Ávila, R., Bottino, C. M. C, Carvalho, I. A. M., et al (2004) Neuro- psychological rehabilitation of memory deficits and activities of daily living in patients with Alzheimer’s disease: a pilot study. Brazilian Journal of Medical and Biological Research, 37, 1721-1729.

Beatty S., Mangaoang, M. A. & O’Mara, S. M. (2006) Episodic and recent autobiographical memory in healthy adults: A pilot study. Irish Psychologist, 33, 71-75.

Beck, A. T., Steer, R. A. Q. & Brown, G. K. (1996) Manual for the Beck Depression Inventory – II. Psychological Corporation

*Benbow, S. M. & Crentsil, J. (2004) Subjective experience of electroconvulsive therapy. Psychiatric Bulletin, 28, 289-291.

Bergquist, T. F. & Malec, J. F. (1997) Psychology: current practice and training issues in treatment of cognitive dysfunction. NeuroRehabilitation, 45,112-129.

Boman, I.-L., Lindsted, M., Hemmingsson, H., et al (2004) Cognitive training in home environment. Brain Injury, 18, 985-995.

Broadbent, D. E., Cooper, P. E., FitzGerald, P., et al (1982) The Cognitive Failures Questionnaire (CFQ) and its correlates. British Journal of Clinical Psychology, 21,1-16.

Brodaty PL, Hickie, I., Mason, C, et al (2000) A prospective follow-up of ECT outcome in older depressed patients. Journal of Affective Disorders, 60,101-111.

Calev, A. (1994) Neuropsychology and ECT: past and future research trends. Psychopharmacology Bulletin, 30, A61-46A.

Cappa, S. F, Benke, T, Clarke, S., et al (2005) EFNS guidelines on cognitive rehabilitation: report of an EFNS task force. European Journal of Neurology, 12, 665-680.

Cavanaugh, J. C. & Poon, L. W. (1989) Metamemorial predictors of memory performance in young and older adults. Psychology and Aging, 4,365-368.

Chung, K.-F. (2002) Relationships between seizure duration and seizure threshold and stimulus dosage at electroconvulsive therapy: Implications for electroconvulsive therapy practice. Psychiatry and Clinical Neuroscience, 56, 521-526.

*Coleman, E. Z., Sackeim, H. A., Prudic, J., et al (1996) Subjective memory complaints prior to and following electroconvulsive therapy. Biological Psychiatry, 39,346-356.

Cronholm, B. & Ottosson, J.-O. (1963) The experience of memory function after electroconvulsive therapy. British Journal of Psychiatry, 109, 251-258.

*Donahue, A. (2000) Electroconvulsive therapy and memory loss: a personal journey. Journal of ECT, 16,133-143.

ECT Accreditation Service (2005) Standards for the Administration of ECT (3rd edn). Royal College of Psychiatrists. http:/ /www. rcpsych.ac.uk/pdf/ECTASStandardsDec05.pdf

Eldridge, M., Barnard, P. & Bekerian, D. (1994) Autobiographical memory and daily schemas at work. Memory, 2, 51-74.

Elliot, E. & Lachman, M. E. (1989) Enhancing memory by modifying control beliefs, attributions, and performance goals in the elderly. In Advances in Psychology: Psychological Perspectives of Helplessness and Control in the Elderly (ed. P. S. Fry), pp. 369-367. Elsevier Science Publishers.

*Freeman, C. P., Weeks, D. & Kendell, R. E. (1980) ECT II: Patients who complain. British Journal of Psychiatry, 137, 8-16.

Hart, T, Buchhofer, R. & Vaccaro, M. (2004) Portable electronic devices as memory and organizational aids after traumatic brain injury. A consumer survey study. Journal of Head Trauma Rehabilitation, 19, 351-365.

Hertzog, C, Dixon, R. A. & Hultsch, D. F. (1990) Relationships between metamemory, memory predictions, and memory task performance in adults. Psychology and Aging, 5,215-227.

Johnson, M. K., Foley M. A., Suengas, A. G., et al (1988) Phenomenal characteristics of memories for perceived and imagined autobiographical events. Journal of Experimental Psychology: General, 117,371-376.

*Johnstone, L. (1999) Adverse psychological effects of ECT. Journal of Mental Health, 8, 69-85.

Jonker, C, Smits, C. H. M. & Deeg, D. J. H. (1997) Affect-related metamemory and memory performance in a population-based sample of older adults. Education and Gerontology, 13, 115-128.

Kapur, N., Glisky E. L. & Wilson, B. A. (2004) Technological memory aids for people with memory deficits. Neuropsychological Rehabilitation, 14,41-60.

Kirsch, N. L., Shenton, M. & Rowan, J. (2004) A generic, ‘in-house’ alphanumeric paging system for prospective activity impairments after traumatic brain injury. Brain Injury, 18, 725-734.

*Koopowitz, L. F, Chur-Hansen, A., Reid, S., et al (2003) The subjective experience of patients who received electroconvulsive therapy. Australian and New Zealand Journal of Psychiatry, 37, 49-54.

Lachman, M. E., Weaver, S. L., Bandura, M., et al (1992) Improving memory and control beliefs through cognitive restructuring and self-generated strategies. Journal of Gerontology: Psychological Sciences, 47, P293-P299.

Legendre, S. A., Stern, R. A., Solomon, D. A., et al (2003) The infuence of cognitive reserve on memory functioning following electroconvulsive therapy. Journal of Neuropsychiatry and Clinical Neuroscience, 15, 333-339.

Lemogne, C, Piolion, P., Friszer, S., et al (2005) Episodic autobiographical memory in depression. Specificity, autonoetic consciousness, and self-perspective. Consciousness and Cognition, 15, 258-268.

*Levine, B., Svoboda, E., Hay, J., et al (2002) Aging and autobiographical memory. Dissociating episodic from semantic retrieval. Psychology and Aging, 17, 677-689.

Lisanby S. H, Maddox, J. H, Prudic, J., et al (2000) The effects of electroconvulsive therapy on memory of autobiographical and public events. Archives of General Psychiatry, 57, 581-590.

Malia, K. B. & Brannagan, A. E. (2004) How to Do Cognitive Rehabilitation Therapy: A Guide for All of Us. Brain Tree Training.

Malia, K. B., Law, P., Sidebottom, L., et al (2004) Recommendations in Best Practice in Cognitive Rehabilitation Therapy: Acquired Brain Injury. Society for Cognitive Rehabilitation.

Mangaoang M. A., McMackin D., Quigley J., et al (2004) The effects of left and right selective amygdalohippocampectomy on everyday memory, discourse production and spatial representations. FENS Forum Abstracts, 2, A124.19.

*Mateer, C. A., Sira, C. S. & O’Connell, M. E. (2005) Putting Humpty Dumpty together again: the importance of integrating cognitive and emotional interventions. Journal of Head Trauma and Rehabilitation, 20, 62-75.

McMackin, D., Mangaoang, M. S., Anderson, M., et al (2005) Group cognitive behavioural therapy for major depressive disorder: relationship to neuropsychological function and measures of stress. Acta Neurobiologiae Experimentalis, 65, S64.

Mittenberg, W, Tremont, G, Zielinski, R E., et al (1996) Cognitive-behavioral prevention of postconcussion syndrome. Archives of Clinical Neuropsychology, 11,139-145.

Moore, S., Sandman, C. A., McGrady K., et al (2001) Memory training improves cognitive ability in patients with dementia. Neuropsychological Rehabilitation, 11, 245-261.

National Institute for Clinical Excellence (2003) Guidance on the Use of Electroconvulsive Therapy (Technology Appraisal 59). NICE. http://www.nice.org.uk/pdf/59ectfullguidance.pdf

Parrott, W G & Sabiny J. (1990) Mood and memory under natural conditions: Evidence for incongruent recall. Journal of Personality and Social Psychology, 59, 321-336.

*Peretti, C. S., DAnion, J. M., Grangé, D., et al (1996) Bilateral ECT and autobiographical memory of subjective experiences related to melancholia. A pilot study. Journal of Affective Disorders, 41, 9-15.

*Ponds, R. W H. M. & Hendriks, M. (2006) Memory rehabilitation in epilepsy. Seizure, 16, 267-273.

Prudic, J., Olfson, J., Marcus, S. C, et al (2004) Effectiveness of electroconvulsive therapy in community settings. Biological Psychiatry, 55, 301-312.

*Robertson, H. & Pryor, R. (2006) Memory and cognitive effects of ECT: informing and assessing patients. Advances in Psychiatric Treatment, 12,228-237.

Roche, R. A. P., Mangaoang, M. A., Commins, S., et al (2005) Hippocampal contributions to neurocognitive mapping in humans. A new model. Hippocampus, 15, 622-641.

Rogers, M. A., Bradshaw, J. L., Philips, J. G., et al (2002) Attentional asymmetries following ECT in patients with major depression. Neuropsychologica, 40, 241-244.

Rose, F. D. & Brooks, B. M. (2003) The use of virtual reality in memory rehabilitation: current findings and future directions. NeuroRehabilitation, 18,147-157.

*Rose, D., Fleischmann, P., Wykes, T., et al (2003) Patients’ perspectives on electroconvulsive therapy: systematic review. BMJ, 326,1363-1367.

Royal College of Psychiatrists (1995) The ECT Handbook: The Second Report of the Royal College of Psychiatrists’ Special Committee on ECT (1st edn) (Council Report CR39).

Royal College of Psychiatrists. Royal College of Psychiatrists (1999) Guidelines for Health Care Commissioners for an ECT Service (Council Report CR73).

Royal College of Psychiatrists. Royal College of Psychiatrists (2005) The ECT Handbook: The Third Report of the Royal College of Psychiatrists’ Special Committee on ECT (2nd edn) (Council Report CR128). Royal College of Psychiatrists.

*Salford Community Health Council (1998) Electroconvulsive Therapy, Its Use and Effects. Salford Community Health Council.

Scott, A. I. F. (2005) College guidelines on electroconvulsive therapy: an update for prescribers. Advances in Psychiatric Treatment, 11,150-156.

*Service User Research Enterprise (2002) Review of Consumers’ Perspectives on Electroconvulsive Therapy. Institute of Psychiatry.

Sharma, V. (2001) The effect of electroconvulsive therapy on suicide risk in patients with mood disorders. Canadian Journal of Psychiatry, 46, 704-709.

Smith, G. V., Delia Sala, S., Logie, R. H, et al (2000) Prospective and retrospective memory in normal ageing and dementia. A questionnaire study. Memory, 8,311-321.

Squire, L. R. & Chace, P. M. (1975) Memory functions six to nine months after electroconvulsive therapy. Archives of General Psychiatry, 32,1557-1564.

Squire, L. R. & Slater, P. C. (1983) Electroconvulsive therapy and complaints of memory dysfunction: a prospective three-year follow-up study. British Journal of Psychiatry, 142,1-8.

Squire, L. R., Slater, P. C. & Chace, P. M. (1975) Retrograde amnesia: temporal gradient in very long-term memory following electroconvulsive therapy. Science, 187, 77-79.

Squire, L. R., Slater, P. C. & Miller, P. L. (1981) Retrograde amnesia and bilateral electroconvulsive therapy. Long-term follow-up. Archives of General Psychiatry, 38, 89-95.

Sunderland, A., Harris, J. E. & Gleave, J. (1984) Memory failures in everyday life following severe head injury. Journal of Clinical Neuropsychology, 6,127-142.

Tam, S.-F. & Man, W.-K. (2004) Evaluating computer-assisted memory retraining programmes for people with post-head injury amnesia. Brain Injury, 18, A61-A70.

Teasdale, J. D., Taylor, R. & Fogarty S. J. (1980) Effects of induced elation-depression on the accessibility of memories of happy and unhappy experiences. Behaviour Research and Therapy, 18, 339-340.

Templer, D. I. & Veleber, D. M. (1982) Can ECT permanently harm the brain? Clinical Neuropsychology, 4, 62-66.

UK ECT Review Group (2003) Efficacy and safety of electroconvulsive therapy in depressive disorders: a systematic review and meta-analysis. Lancet, 361, 799-808.

*Weeks, D., Freeman, C. P. L. & Kendell, R. E. (1986) ECT: III: Enduring cognitive deficits? British Journal of Psychiatry, 137, 26-37.

Weiner, R. D., Rogers, H. J., Davidson J. R., et al (1980) Effects of electroconvulsive therapy upon brain electrical activity. Annals of the New York Academy of Sciences, 462, 270-281.

Williams, J. M. G, Watts, F. N., MacLeod, C, et al (1988) Cognitive Psychology and Emotional Disorders. John Wiley & Sons.

Wilson, B. A., Emslic, J. C, Quirk, K., et al (2001) Reducing everyday memory and planning problems by means of a paging system: a randomised control crossover study. Journal of Neurology, Neurosurgery and Psychiatry, 70, 477-^82.

MCQs

1 Patients currently referred for ECT complete routine neuropsychological assessments:

a following the course of ECT treatments
b prior to receiving the first ECT treatment
c 3 months after the last ECT treatment
d 6 months after the last ECT treatment
e patients do not routinely complete neuropsychological assessments at any stage during treatment.

2 The following are not necessary in neuropsychological assessment of patients receiving ECT:

a the Eysenck Personality Inventory
b recommendations for treatment or rehabilitation of
impairments
c tasks measuring ‘real-world’ functioning
d collateral information from the patient’s family or caregivers
e measurement of factors influencing a patient’s ‘cognitive reserve’.

3 Tasks that require patients to self-rate their own memory functioning include:

a the Landmark Recognition Task
b the Mundane Memory Questionnaire
c the Autobiographical Memory Interview
d the Prospective and Retrospective Questionnaire
e the Everyday Memory Interview.

4 Cognitive rehabilitation is least successful when it focuses on:

a compensation for deficit rather than restoration of function
b the cognitive and emotional aspects of brain injury
c including the patient’s family or caregivers in the rehabilitation process
d the drill and practice approach
e the generalisation of acquired skills to the social and vocational domains of the patient’s life.

5 Cognitive rehabilitation techniques have been adapted and used for:

a patients with acquired brain injury
b patients with permanent memory and cognitive disability following ECT
c patients with intellectual (learning) disability
d patients with temporary memory and cognitive problems following ECT
e all of the above.

mcq.jpg

Maeve Mangaoang is a research psychologist at St Patrick’s Hospital (St Patrick’s Hospital, PO Box 136, James’s Street, Dublin 8, Ireland. Email: mangaom@tcd.ie) and a research associate at the Trinity College Institute of Neuroscience. Her interest in cognitive rehabilitation stems from her current research on electroconvulsive therapy (ECT) as a treatment for major depressive disorder and previous work in experimental neuropsychology among patients with temporal lobe epilepsy. Jim Lucey is a consultant psychiatrist and Head of the ECT Department at St Patrick’s Hospital. He also has a special interest in the treatment of obsessive-compulsive disorder.

Comments (19)

TomasMarch 14th, 2007 at 12:18 pm

Could change finally be here?

JuliMarch 14th, 2007 at 12:41 pm

I’ve been wondering the very same thing, Tomas. This article is absolutely groundbreaking, IMO. It wouldn’t hurt to write the authors and/or journal and acknowledge this good work.

DanielleJune 17th, 2007 at 12:49 pm

I am very EXCITED! I find this article a great beginning to an extremely important area and need for ECT consumers. I have included here an email I sent to ECT.ORG originator Julie in February 2007. I would appreciate feedback and suggestions of what ECT consumers need for the best recovery possible. Thank you!

Dear Juli,

Greetings! I am writing to introduce myself and hopefully to get your feedback on what types of services and support ECT consumers are needing to help them in achieving the best recovery possible from ECT treatments.

My name is Danielle and as a result of my own experiences as an ECT consumer (65+ ECT treatments over a 3 years period) and my desperate search for information and rehabilitative services to help me in my recovery from ECT, I have become dedicated to advocating for and developing programs and guidelines for the provision of Pre and Post ECT Counseling and Recovery/Rehabilitation Services for ECT consumers and Families.

Please understand that when I speak of “ETC Consumers,” I am also speaking of the critical involvement of the families. I also see that all ETC consumers go through a recovery process, regardless of the outcome of the ECT treatments. However, adverse effects clearly make the recovery process more complicated and the need for “Recovery and Rehabilitation Services” even more essential.

In addition to being a mental health consumer, I am a mental health professional. I am aware of the limited amount of information most psychiatrists, let alone psychologists/social workers/counselors really know about ECT (due to biased information, research, media, etc.) Unfortunately, what information is available does not provide guidelines to psychiatrists and other mental health professionals on how to work with ECT consumers, particularly in recovery for ECT consumers who have suffered cognitive impairments. Until recently, professionals were also being repeatedly told that memory loss is short-term and will return completely within 3-6 months after the last ECT treatment. When this does not happen, few professionals provide appropriate services for ECT consumers: such as neuropsychological testing, cognitive rehabilitation, and specialized counseling. ECT consumers are usually left to fend for themselves. This is uncharted territory and if ECT treatments continue to increase, so will the need for proper programs and guidelines for ECT recovery.

My goal is not to label ECT as good or bad. I believe ECT can greatly benefit some people. However, ECT also has the potential to cause significant cognitive impairments. For this reason, the “possible” positive benefits must be carefully weighed against the “possible” negative consequences. I believe this is often not done and the Client is not provided accurate information to be able to make an “informed decision.” One of my goals is Pre-ECT Counseling, which is provided by a mental health professional specifically trained in working with ECT consumers (ECT Specialist), who can be objective and support the consumer in making an “informed decision.” I strongly believe a decision to have ECT by a consumer should not be completed during the first session and at least three counseling sessions should occur before ECT treatments begin. The ECT consumer should also be carefully monitored throughout the ECT treatments by the “ECT Specialist” who is trained and knowledgeable about ECT and in identifying adverse effects. This is particularly important in Out Patient ECT and Maintenance ECT treatments. After the last ECT treatment, the ECT Consumer should be provided Post-ECT Counseling. During these sessions, the ECT Specialist would work with the ECT consumer to outline an “ECT Recovery plan,” which would include any specialized services and therapy needed. Also, there would be an ECT Follow-up counseling session(s) in 3-6 months to assess the ECT consumer’s recovery process and update or revise the “ECT Recovery plan.” This will help determine possible long-term adverse effects and ensure that the ECT consumer is provided with appropriate neurological and therapeutic services (neuropsychological testing, cognitive rehabilitation, etc.). The “ECT Specialist” would be a part of the ECT Consumers treatment team. (For example: the psychiatrist, and/or therapist, and/or neuropsychologist) and be responsible for helping communicate and coordinate the ECT consumer’s needs with these individuals.

I have just provided a very small concept of the type of guidelines, counseling, and rehabilitation services that ECT consumers should be provided. After I finally came to the realization (could actually begin to accept) that my cognitive impairments caused by ECT were not improving, I began searching for guidelines, programs, and treatments that would help me in recovery. There are no accepted guidelines in research or literature on ECT regarding the “Recovery and Rehabilitation Process.” I find this unacceptable; especially since the ECT professionals know that ECT can cause short-term and permanent memory loss (ECT professionals and ECT consumers know that there are other demonstrated cognitive deficits, but these continue to be denied). ECT consumers deserve quality care that includes proper after-care (not just in the recovery room after an ECT treatment). I believe that my training as a Mental health professional and my experiences as an ECT consumer can help in developing comprehensive guidelines for providing appropriate “therapeutic services” for ECT consumers, particularly regarding the needs for “Recovery and Rehabilitation.” Without the input and support of other ECT consumers these needs will not be met.

In my many searches for information for ECT consumers, I have found your site “ect.org” and your section “Shocked! ECT” to be one of the most informative, well researched, fair, and supportive resources available. I deeply respect all the hard work you have done. You are the only advocate I have found that has mentioned Recovery and Rehabilitation needs for ECT consumers in your section “ECT as Head Injury.” Thank you. I am requesting your help in hearing and understanding what ECT consumers and their families need in order to achieve the best Recovery from ECT possible. Also, if you have information on current programs and recovery services that are available to ECT consumers that would be very helpful. This information will be used in helping to develop guidelines for the provision of Pre and Post ECT Counseling and Recovery/Rehabilitation Services for ECT consumers and Families. This information will also be used in providing training and education to Mental Health Professionals referring and working with ECT consumers.

Your time, knowledge, and help in this endeavor is greatly appreciated. Thank you!

If we can help one person…we have made a difference…and that my friend is priceless.

Sincerely,

Danielle
ECT Consumer

PatsyDecember 21st, 2007 at 5:22 pm

Thank you, Danielle, for all of that information. As an ECT patient, I am in full agreement with you that cognitive rehabilitation and memory rehabilitation would be of great benefit. We have an ECT support group in St. Paul, Minnesota, and this is just the sort of topic that we would like very much to address. If you are interested, contact me at ptbakken@comcast.net.

KarenFebruary 9th, 2008 at 10:45 pm

I received ECT at Thalians (Cedar Sinai) Los Angeles, and was pretty much put out on the street with NO follow up or appointed Doctors for carrry thru.
Is there a way to demand follow up on the skills I feel I have lost? This is all new to me.

Thanks

Maeve HeaneyFebruary 11th, 2008 at 4:30 am

I have a simple question: are there any clear guidelines on how often ECT treatment should be used on the same person, and with what frequency? I know someone who has received 2 periods of about 12-15 sessions over the last year, with back up sessions about once a month. I feel there is an immediate positive effect but a downward slide happening…

KarenFebruary 11th, 2008 at 2:42 pm

I appreciate all the research that you have provided in what “should” be done to test what effects ECT has had on memory loss and congnitive thinkng skills, but I am still at a loss as to how to find this follow up.
As I mentioned Thalians basically throws you out the door with no medical follow up.
Not even referals to Pysciatrists to continue follow up for medicine.
All they are interested in is ….. getting paid.

Why are they not required to provide rehabilitation for the loss of my memory retention where I have to search for a word, that I know I know, but can’t find it.

Any suggestions would be apperciated.

Karen

john barrellaMay 20th, 2008 at 10:21 am

I have received cognitive remediation classes in the Rusk Institute 1991 to 1995. Few years followup and today I have been told by the last doctors involved with the Rusk that I am fully rehabilitated. FULLY. I need to see noone else…and they were right. Any other place I had gone to I would have to teach them about cognitive remediation. Everyone I have seen and mentioned cognitive remediation to is simply not aware of it. It is now 13 years later and still noone is aware of very EFFECTIVE treatment…that has been around for a long, long time. IT IS SAD, IN THIS GREAT COUNTRY, WITH THESE GREAT TREATMENTS, THAT MOST PEOPLE NEVER GET CLOSE TO WHAT WOULD REHABILITATE THEM…WHAT WOULD MAKE THEM AWARE AS TO THE FULL EXTENT OF THEIR INJURIES…Ninuccio…

I see I need to followup. The problem with cognitive remediation is that you would need a counselor who is aware of it and willing to pass you on. HOWEVER…do realize…to get a counselor that knows about is “unusual”…(since noone seems to know about it). And “rare”. The reason why it is rare is that a counselor if he knows about cognitive remediation has the choise to suggesting neuropscyhological testing…(maybe costing a few hundred dollars)…to congitive remediation…(which cost VESID. Vocational Educational Services for Individuals for Disabilities approximately 94,000 dollars…for three years. Twice a week. For 3 hours. It is an extremely slow treatment. Rightfully so as after the person neuropsychological testing is done a poster is made with his symptoms and repetitive exercises are utilized to produce many other symptoms involved in the brain injury. Thus making the person aware of his full cognitive disfunction while establishing compensatory strategies for the new injuries picked out. Have been telling you folks for a long while…yet noone has cared to listen…Ninuccio.

John L. Barrella aka. NinuccioMay 22nd, 2008 at 9:35 pm

Little bit of insight…”I simply never had a chance”…Right here in Manhattan…upon lies to my admission. Upon lies to my discharge…this guy pulverized me…
Electroshock treatment Ninuccio was admitted to Gracie Square Hospital in Oct. 1982 by psychiatrist Lothar Kalinowsky with a diagnosis of paranoid state. ( A condition reported by myself and others to occur as a consequence of neurosurgery. And status post-op psychosurgery. )The record is now in error concerning the patient’s history, attributing his “paranoid state” to a period of time before the operation; but the records from before the surgery show no evidence of paranoia. It developed afterward. The patient has become volatile and easily angered, based on the observations of his wife, the record states”…he becomes another person. Patient’s memory is quite poor. Sometimes he doesn’t remember from moment to moment.” The were no memory problems noted by anyone prior to the psychosurgery. The admitting write up states:”…the patient lost his memory, almost completely to the operation and other events as well. His memory lapses fluctuate, and sometimes he did not remember what happened 15mis.ago and at other times he did not remember past events. In regards to the competence issue, note that he can recall nothing of the operation. The 1982 hospitalization documents state the patient now has an “organic mental” disorder” with “disorientation or memory impairment” Thus a little more than two years after the surgery, the patient was displaying in a florid fashion two entirely new psychiatric disorders, both of psychotic proportions: (1)-paranoid delusions and (2) organic brain syndrome with confusion and severe memory disfunction. It is acknowledged tat the brain syndrome is due to the surgery. In all likelihood so is the paranoia. Neither condition will ever clear up in the subsequent years. The patient was given 11 bilateral ECT. from Oct. 20 through Nov. 18, 1982. Not surprisingly, since his brain function was already compromised, the patient became very confused and disoriented”. On note on Nov.3rd. states “memory impairment continues to be of some concern.” Again it is noted that the treatment made him “very confused and disoriented”. On November 8, ECT. is cancelled because he is very disoriented. However, it is resumed again on November 10. He also developed nausea, a frequent sign of brain disfunction from shock treatment. The brain damaging effects of electroshock are documented and discussed in many sources in the literature. Dr. Lothar Kalinowsky: 1) Subjecting the patient to controversial and potentially damaging electroshock
without informed consent. 2) When the patient’s brain function was already impaired, subjecting the patient to another
brain disabling treatment in the form of electroshock.
3) When the patient suffered from an extreme reaction to electroshock, continuing
with the treatment. 4) Failing to inform the patient and family that malpractice had been committed by Dr. Stellar. 5) Failing to inform the patient and family that the patient would never recover from the brain damage inflicted by the psychosurgery and compounded by the electroshock.
6) Giving electroshock to on obviously incompetent patient with no legal guardian, and therefore without consent. 7) Inappropriately prescribing electroshock for a patient in whom it was unwarranted.
Gracie Square Hospital:
Failing to properly supervise the administration of electroshock, including the conditions of its administration and informed consent.
Damages:
All the individuals and institutions contributed to the patient’s following damages.
1) Severe, chronic and permanent organic brain damage with memory loss, confusion,impaired judgement and insight,and paranoid ideation caused the psychosurgeries and electroshock. The major contributing trauma was the surgery by Dr. Stanley at St. Barnabas in 1980. The electroshock by Dr. Kalinowsky was a contributing and compounding factor. 2) The need to have the brain damaged patient legally determined incompetent.
3) Nearly complete social incapacitation,including the loss of his marriage and virtual social isolation.
4) Complete economic incapacitation, with disability confirmed by physicians and the Social Security Administration. 5) Extreme emotional suffering, including humiliation, secondary to all of the above.
6) Delay in bringing a malpractice action and the losses associated with that. 7) Rendering the patient physically incapable of fully benefitting from further psychotherapy and
rehabilitative services. Competence to Bring a Malpractice Action: Due to the damages listed in Section VI, including the severe brain damage, the patient was unable to act on his own…
Now this is me talking…However I was never declared incompetent because if my mother would pass away there would be problems. Ironically my mother…just like me…was legally murdered by bad medications in a s hospital nearby. Her situation I am sure will also be kept quiet unless I am able to bring it to court…Ninuccio.

Carol KivlerSeptember 19th, 2008 at 12:34 pm

As a courageous survivor of ECT (Electric Convulsive Therapy), I am often asked to speak to people suffering with depression and their family members about ECT. Many have the same exact questions that I had when I was first asked to consider ECT as a treatment intervention for my clinical depression back in 1990. Today, 15 years later, I’ve had over 50 successful ECT treatments during my four major bouts with clinical depression. ECT has become my “ladder out of the depression pit” for which I am most grateful.

Like many, I was terrified at the thought of how ECT was given and more importantly what others might think of me afterwards. The media has portrayed ECT as a barbaric treatment; a treatment only given to “crazy” people in the dark wards of psychiatric hospitals. This life-saving treatment is as far from that reality as it can be.

Electroconvulsive therapy is again coming into favor as a treatment for severe depression. According the American Psychiatric Association, its success rate is 80 percent whereas medication has a success rate of between 40 and 45 percent.

From personal experience I can tell you how ECT is performed:
The patient receives an IV containing anesthesia and a muscle relaxant, blood pressure and pulse monitoring devises are applied, EKG leads monitor the heart and EEG leads monitor the brain, to prevent the possibility of the patient biting their tongue, a bite-block is inserted in the mouth and an oxygen mask is placed over face to ensure proper respiration. Electrodes are applied to the right temple and the parietal area on the head. The electric current is adjusted to the lowest intensity and shortest duration needed. The doctor then applies the electrical stimulus by pressing a button on the end of one ECT handle. The brief pulse stimulus lasts just 1 to 2 seconds. One ECT course consists on 6 to 12 treatments.

It is still unclear why ECT helps patients with severe depression. Some feel that the electrical shock and subsequent seizure somehow simulate the brain’s neurons and reconfigure chemicals in the limbic system that regulate and balance the emotions.
Alternatively, the seizure may alter the body’s hormonal system to relieve depression

The biggest challenge for me was accepting ECT as a viable treatment option. It was easier for me to understand the treatment than it was for me to accept the treatment. ECT has become my “treatment of choice.” The positive outcome from ECT outweighs the stigma surrounding ECT. I have come to understand and trust ECT as my “silver bullet” in dealing with my severe clinical depression.

ninuccioSeptember 19th, 2008 at 1:42 pm

Carol Kievler-I am very happy for you. That is your treatment of choice…BUT…what happens when I took that treatment in 1982 and my memory was simply taken. No one was ever touched. The doctor who gave me the ECTs. did it forcefuly as I had called my mother and ex-wife…they did not step in to stop him. He had lied on my papers and made me a high school drop out. (I have an AA. in Business which I found by myself 8 years later). It had disappeared from my papers. The first doctor by neurosurgeries had previously injured me and washed his hands saying that I was ok. The second doctor. the shock doctor…hit me with shocks and took my life right here in Manhattan. In front of the world. Shielded the lies with his high position. Not only as a doctor but a top shock doctor all over the world. This guy was a quack. He was never touched. I wonder how many others he took out of action. I am very glad that is your treatment of choice. You must have made a good choice. I am very happy for you. I am not very happy for myself. Having had to take buses everywhere looking for a memory I was not even aware it was missing. I was told I had driven to Florida with a car I could not repair anymore. I had gone to Puerto Rico with a wife I could nto recognize, nor was I aware I could not recognzie. With a wife that took me 16 years to find. I had been to Venice with the same wife…whom I didn’t recognize not was I aware I didn’t recognize her. A severe injustice was committed against me…according to the last lawyers…who had to give up because it would cost lots of money…and not a sure thing. The medical system is terrible. Disgusting. Deadly for me. The biggest crap I have ever encountered and suffered from. I am glad it has benefitted you. You don’t like to hear of ECT.potrayed in a bad light. Well actually I don’t like to have to write everything down not to forget it. I don’t like not recognizing anyone for many,many years. I don’t like having lost my wife and actually taken 16 years to just find her. I don’t like having a short term memory loss, long term memory loss, disorientation in time and date, focusing what is said problems,memory dejavu,impaired insight and judgement,distractibility, emotional gaiting,and a hemiparesis on my right hand side. Only told this information through the Rusk Institute in Manhattan 16 years later. Will have to live it for the rest of my life. You tell us how great ECT.is and what it has done to you.I tell you what it have done to me…So I hope people will read both articles and not base their opinion on the greatness of ECT. when it can also…and was…for me…DEADLY…actually it would have been much easier for a bullet to have blown my head off then to go through the direction my life has had to deal with…Ninuccio.

Linda May MellingenNovember 17th, 2009 at 6:20 pm

Would just like to say thank you. Thank you for being brave, and drawing attention to the above. I have not read it all, my memory, impaired by ECT treatments (30, 2,5 yr ago), does not yet function as it once did. But I will read it all. I was a nursing student. Towards the end of my studies I fell ill with depression. No pill would help, I was very ill, and was recommended ECT. Having been assured that there were no long term side effects, I reluctantly gave in. Here I am, unable to study, but at least I can find my way out of my home mall, and read the odd book. I absolutely hate that this is not taken seriously by health authorities, even here in Norway, where I come from. I do have a good quality life, but ECT has, so far, taken away from me the ability to learn, as I did before.

Keep up you wonderful work.

Linda May MellingenNovember 17th, 2009 at 6:32 pm

Sorry – forgot to mention an important point; the ECT did not help me at all, however Lithium did, though it took a good 6-7 months to kick in. For the record I was never, nor am I, manic depressive.

PaulJune 6th, 2010 at 10:15 pm

What I find most discouraging about this article is that it assumes that ECT actually is of benefit to some and that this somehow offsets the obvious negative, life-long loss of memory and cognitive skill that is slowly being acknowledged in the scientific literature.

Since it may be demonstrated that ECT actually ‘works’ primarily and only because of a degree of brain injury, which has therefore to be also of a temporary nature, the use of such an invasive and potentially destructive procedure should be contra-indicated in all cases.

The one category of patients in which alone the balance of harm/benefit might be said to argue for the use of ECT is that of suicidal patients. However the evidence is that, one year after ECT, there is no discernible reduction in the suicide rate of such patients between those having ECT compared with those who didn’t have ECT. Hence, even in this category it should be contra-indicated. The harm potential is real but the benefit potential is shown to be non-existent in real statistics, not just imaginary ideas.

Paul

NinuccioJuly 9th, 2010 at 8:54 am

Well, finally some awareness has come to light. It is more then developing the proper treatment…IT IS kEEPING THE QUACKS…AWAY. Both “IMPOSSIBLE” tasks. IMPOSSIBLE. Few days ago went to take an MRI…(where they stick in you in that tube). I have now been debilitated by a syncope situation…WHICH THEY KNOW NOTHING ABOUT. When I showed my surgeries big question marks on their faces. When I showed the index of injury…big question marks on their faces.
I am one of the lucky ones to have been able to make it to the Rusk and receive cognitive remediation. 3 years to sift out the buthchering that had been given me. As far as symptoms clearing…the only that clears…through time is the awareness of your situation. IT IS LIFELONG…

Shawn McFaddenDecember 22nd, 2010 at 3:56 pm

I am very interested but am having a hard time following. Could you please explain your program a little clearer for me. Thank you. I had ect treatments and have had no followups. I am loosing my memory and am having nerve damage in my head. I have no insurance so they won’t send me to a neurologist. It is getting worse and I am afraid I will wake up and not know anything. I have no support system and I don’t even know how to get one in place. I feel so lost and alone just because I let a bunch of people lie to me and talk me in to something I didn’t need in the first place.

NinuccioMarch 10th, 2011 at 3:13 pm

Shawn McFadden-LONG LONG TIME…since I have gotten back to my computer. I hope you are still there and have found some assistance.
I will answer and give some awareness. I have totally disillusioned about our medical system…and I live in New York City. Everytime I get on the computer to help someone out, there pop up a few ladies who have regard for the proper treatments for “head injury”…I also, for many years went to all the wrong places…and NOONE knew what to do…and NOONE…DID ANYTHING. Head injury…(damages to the brain)…can be brought out…and need to be brought out by a treatment called cognitive remediation. It is a very unique treatment. VERY ORGANIZED. It is designed to bring out your head injuries. It is designed to bring your full COGNITIVE POTENTIAL. It is also designed to assess your damages. Make you bring them out through repetitive treatments…fully out. You may become aware that you may have a short term memory loss…BUT…the important thing about this treatment…IT WILL ALSO BRING OUT YOUR DISTRACTIBILITY. A symptom you may have never heard about and is a very important part of every head injury. I am gratified that someone in this group finally asks a very important question. I do know the treatments lasted for approximately 5 years, overall…(different treatments)…and when I left I was fully aware…and I was allowed to learn and be taught at the same time, how to recognized the extent of my injury…and how to compensate for each symptom. It slowed my life down quite a bit…but there is no other choice. I, and this is scary, was injured by DOCTORS and today, whenever I see any doctor, I need to present to them my cognitve assessment from the Rusk…which they…as intelligent as they may be…have very little awareness of. I have already written in the computer how the cognitive classes work…but if you wish…if you get this…you would be able to get back to me. I can only live my life through a computer, because of the extent of damage…not only to my mental capacitities…but also I cannot write very well…I can suggest to you…when and if you get back to me proper program that will benefit you…HERE IN NEW YORK CITY…I have not met any doctor aware of the Rusk’s Instititutes COGNITIVE TRAINING…Ninuccio…(hope you answer me)…

NinuccioJanuary 14th, 2012 at 8:23 am

ShawnMcFadden…and whoever else. The proper assistance for any type of head injury is found in the Rusk Institute in Manhattan. This is not the typical psychiatric assistance. This treatment is very…extremely simple…yet directly related in having you diagnose your own symptoms by cognitive remediation classes. It is like putting yourself in front a mirror and thus for you being able to recognize yourself. Extremely unique. It is almost like kindergaten class. Ironically I had met in these groups a few teachers…(head injured now one by a car accident, one by anerysms). When life knocks you simply need to understand the “full” extent of you injuries. It almsot seemed to me like going back to kindergarten…but the classes are extremely organized to bring our your deficts and allow you not only to recgonize them…(by constant repetition)…but to establish, with the helf of the group, proper compensation strategies. This differs from you seeing a clinical psychologist,or psychiatrist on the side…which ironically for head injury can be an actual blocker of assistance. This is a whole different game. It works. It has worked for years. The thing that doesn’t work is the medical system itself…that does not make people aware of these types of classes that establish a person full awareness of himself…through extremely simple treatments. I live in New York City…so far…from 1995…the completion of my treatments in the Rusk Institute in Manhattan…I have not yet met any person who is aware of cognitive remediation. It is now 2012. Apparently it never caught on, yet it is still being given in a top medical institute…(The Rusk Institute, 34th. St. Manhattan)… most probably because the medical system itself works on having customers and making money which simply does not allow these programs to be advertised…Ninuccio.

Leave a comment

Your comment:

Subscribe without commenting