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Adult Recovery and Rehabilitation
Medicine and Patient Narrative
This paper provides a brief chronicle of medicine and narratives, the aim being to understand
the role of people’s narratives historically, including how they have developed and changed
over time, and in particular the rising interest in the neuro-narrative. The paper ends by
reflecting on what practicing physicians, nurses, therapists, and social care workers might want
to think about when considering the use of narratives with their clients.
Ava Easton, Karl Atkin (2011) Social Care and Neurodisability, vol 2(1)
Encephalitis: Assessment and Rehabilitation Across the Lifespan. A Special Issue of Neuropsychological Rehabilitation
Encephalitis - inflammation of the brain - has significant cognitive, behavioural and emotional consequences.
This special edition describes the pathway of recovery following encephalitis, from medical management to assessment, rehabilitation and community support and advocacy.
The neuropsychological and neuropsychiatric outcomes of encephalitis in both adult and paediatric populations are described, in addition to a number of rehabilitation studies which aim to increase the functional independence and psychosocial adjustment of survivors of this rare neurological condition.
Bonnie-Kate Dewar, Huw Williams (2007) Special Issues of Neuropsychological Rehabilitation: Psychology Press, 6th September 2007
Cognitive recovery from Encephalitis Lethargica
The cognitive profile and outcome of Encephalitis Lethargica has not been systematically described in the literature.Treatment has typically focused upon medical management. The first case report of a patient with Encephalitis Lethargica who underwent a systematic programme of cognitive rehabilitation is presented. Initial neuropsychological assessment conducted during her acute presentation indicated generalized cognitive dysfunction, including memory and executive function impairments. An outpatient cognitive rehabilitation programme addressed the development of awareness and the remediation of memory and executive function impairments. Repeat assessment indicated significant improvement in cognitive function. The components of her rehabilitation programme are discussed. She has been able to successfully return to her pre-morbid level of work responsibility within 8 months of her admission.
Bonnie-Kate Dewar & Barbara A. Wilson (2005), Brain Injury, 19 (14)
Treatment of Viral Encephalitis Organic Personality Disorder and Autistic Features with Propranolol: A Case Report
Objective : To observe and describe the clinical effects of propranolol in an agitated and violent patient with postviral encephalitis organic personality disorder. Background: Cognitive and behavioral deficits are common in patients with viral encephalitis. Methods to modify behavior by a behavior program and medication have reported limited success. Case: A sixteen-year-old girl developed progressive violent and sexually dis inhibited behavior five weeks following acute viral encephalitis (presumed herpes simplex encephalitis). Three weeks of high dose lorazepam (6mg/d) failed to control her symptoms. Intensive behavioral therapy was also ineffective and violent behavior increased during structured treatment hours. Benzodiazepines and low dose haloperidol were ineffective over the subsequent two weeks in a neurorehabilitation unit. Propranolol was then given (10 mg b.i.d. to 20 mg t.i.d.) and she had a dramatic change in behavior with less violence and less agitation after one day of treatment with propranolol. Her short-term memory improved. Decreased dosage of propranolol was associated with the return of violent behavior. Maintenance propranolol was effective in con trolling her symptoms and led to the resumption of her multidisciplinary rehabilitation program. Conclusion: Violent and autistic behavior due to viral (herpes) encephalitis may respond to propranolol.
John G. Schmidt, Mary L. Dombovy , Kimberlee Watkins Neurorehabilitation Neural Repair 1995 9: 41-45
No one listens to me, nobody believes me: Self management and the experience of living with Encephalitis
Over the past twenty years, there has been considerable interest in individuals’ experience of chronic illness. In addition to the more established concerns of medical sociology, recent policy reflects an interest in how individuals manage their condition. Using material from qualitative interviews with 23 individuals carried out in the United Kingdom, this paper examines a person’s experience following encephalitis, as a way of exploring the potential value of current policy initiatives associated with self-management. Our findings suggest that individuals’ illness experiences become embedded in conditional acceptance derived from and sustained through their social relationships. This raises a fundamental policy tension: is the purpose of current self-management strategies to help individuals cope better with illness or with the context in which their illness experience is realised? We conclude that policy needs to question how it ‘imagines’ long-standing conditions, without recourse to generalised notions of coping and adjustment. This, in turn, means adapting a less instrumental and more contextualised approach to self-management.
Karl Atkin , Sally Stapley, Ava Easton (2010) Social Science & Medicine 1-8
Modification of severe behaviour problems following herpes simplex encephalitis.
Violent and sexually disinhibited behaviour together with poor self-care developed in a 38-year-old teacher following herpes simplex encephalitis. These behaviours were sufficiently severe to make rehabilitation difficult and return to the community impossible. Initially, only violent behaviour was treated, both by medication and a behaviour programme, and sexual disinhibition subsequently by the latter. In order to implement the programme a special (psychiatric) nurse was required on a 24 h basis. The incidence of violent behaviour was reduced from up to 55 times per day to zero over a period of 2 months. Whether this was affected by medication or behaviour management, or by spontaneous recovery, is discussed. Sexual disinhibition was eliminated in supervised settings, but continued to occur if left unsupervised and this improvement resulted from behaviour management. Poor personal hygiene also improved markedly over the 6-month period. The goal of returning the patient home to live with her family was achieved and she remained there at follow-up. This intervention was carried out in a rehabilitation unit that does not specialize in the treatment of such cases; clearly this has implications for cost and quality of care.
McMillan TM, Papadopoulos H, Cornall C, Greenwood RJ. (1990) Brain Injury,4(4):399-406.
Mentoring Programme for Adolescent Survivors of Acquired Brain Injury
Primary objective: To report the findings of a mentor–adolescent relationship between two survivors of acquired brain injury (ABI).
Research design: Case study report.
Methods and procedures: The adolescent, a survivor of Eastern Equine Encephalitis, was paired with an adult mentor, a survivor of a TBI. Baseline scores on the Youth Quality of Life (YQOL), Wisconsin Quality of Life Index (WQLI) and the Mayo-Portland Adaptability Index-4 (MPAI-4) were recorded.
Experimental interventions: The mentor provided support to the adolescent during the 10-week relationship conducted as a community-based programme for adults with acquired brain injury. In addition, both participants attended group activities that address the long-term needs of survivors of ABI. Post-programme scores were recorded on the YQOL, WQLI, MPAI-4 and a retrospective questionnaire.
Main outcomes and results: The adolescent demonstrated improved quality of life on the YQOL and improved ability, adjustment and participation on the MPAI-4. The mentor demonstrated improved quality of life on the WQLI and improved adjustment and participation on the MPAI-4. Both participants indicated satisfaction with the programme on the retrospective questionnaire.
Conclusions: The mentor programme provided enhanced quality of life and psycho-social support to both participants. The authors do caution, however, that these findings are preliminary and examination of the efficacy of such programming is ongoing.
Michael Fraas & Amanda Bellerose (2010) Brain Injury 24(1): 50–61
Behavioral Consequences of Infections of the Central Nervous System: with Emphasis on Viral Infections
Infections of the central nervous system can damage the brain and cause abnormal behavior. In this article, the authors examine how behavior is affected by damage to different parts of the brain. They then focus on damage caused by specific infections of the brain and how these can result in abnormal behavior with legal consequences.
Examples of such infections include neurosyphilis, encephalitis lethargica, herpes simplex encephalitis, and various other viral encephalitides, both acute and chronic. The AIDS dementia complex, which results from HIV infection of the brain, causes behavioral abnormalities in addition to motor and cognitive impairments. In some cases of violence and other criminal behavior, this can be a consequence of central nervous system infection, and the authors suggest that criminal sanctions in such events are inappropriate in the absence of volitional criminal intent.
Alex Tselis, MD, PhD, and John Booss, MD (2003) J Am Acad Psychiatry Law 31:289–98
Rehabilitation outcomes in encephalitis – a retrospective study 1990 – 1997
The purpose of this study are to
1) describe the outcome following in-patient rehabilitation in a cohort of patients with encephalitis
2) develop preliminary criteria to guide the selection of patients with encephalitis who may benefit from inpatient rehabilitation.
Sathia Moorthi, William N. Scheider and Mary Dombovy (1999) Brain Injury, vol 13, No 2, 139-146
Viral encephalitis and epilepsy
Viral encephalitis presents with seizures not only in the acute stage but also increases the risk of late unprovoked seizures and epilepsy. Acute symptomatic and late unprovoked seizures in different viral encephalitides are reviewed here. Among the sporadic viral encephalitides, Herpes simplex encephalitis (HSE) is perhaps most frequently associated with epilepsy, which may often be severe. Seizures may be the presenting feature in 50% patients with HSE because of involvement of the highly epileptogenic frontotemporal cortex. The occurrence of seizures in HSE is associated with poor prognosis. In addition, chronic and relapsing forms of HSE have been described and these may be associated with antiepileptic drug-resistant seizures. Among the epidemic (usually due to flaviviruses) viral encephalitides, Japanese encephalitis (JE) is most common and is associated with acute symptomatic seizures, especially in children. The reported frequency of acute symptomatic seizures in JE is 7–46%. Encephalitis due to other flaviviruses such as equine, St. Louis, and West Nile viruses may also manifest with acute symptomatic seizures. In Nipah virus encephalitis, seizures are more common in relapsed and late-onset encephalitis in comparison to acute encephalitis (4% vs. 1.8%). Other viruses like measles, varicella, mumps, influenza, and entero-viruses may cause seizures depending on the area of brain involved. There is no comprehensive data regarding late unprovoked seizures in different viral encephalitides. Prospective studies are required to document the risk of late unprovoked seizures and epilepsy following viral encephalitis due to different viruses as well as to determine the clinical characteristics, course, and outcome of post-encephalitic epilepsy.
Usha Kant Misra, Chong Tin Tan and Jayantee Kalita (2008) Epilepsia 49 (Suppl 6): 13-18
“Am not was”: Cognitive-behavioural therapy for adjustment and identity change following herpes simplex encephalitis
The cognitive sequelae of encephalitis are well documented, and it is increasingly recognised that disorders of mood and anxiety can accompany these sequelae. Loss of identity is emerging as a key theme in psychotherapeutic interventions in adjustment following acquired brain injury (ABI). Cognitive behavioural therapy can be applied to construct a new model of the self in the context of behavioural, cognitive and social sequelae of the ABI, with consideration of pre-illness identity. Behavioural experiments, in particular, may be an effective means of redefining the meaning of current situations to create a positive sense of self. In the current paper we describe the therapeutic intervention to address anxiety and changes in identity in a woman recovering from herpes simplex viral encephalitis. The intervention highlights the need to take into accounts the interplay between cognitive changes, such as memory and executive function, with emotion in adjustment following herpes simplex viral encephalitis.
Bonnie-Kate Dewar, and Fergus Gracey (2007) Neuropsychological Rehabilitation 17 (4/5), 602-620
Pain News - A Publication of The British Pain Society
Post Encephalitis Pain(page 44)
Dr Sally Stapley, Dr Karl Atkin, University of York & Ms Ava Easton - The Encephalitis Society
The use of a wearable camera, SenseCam, as a pictorial diary to improve autobiographical memory in a patient with limbic encephalitis: A preliminary report
This case study describes the use of a wearable camera, SenseCam, which automatically captures several hundred images per day, to aid autobiographical memory in a patient, Mrs B, with severe memory impairment following limbic encephalitis. By using SenseCam to record personally experienced events we intended that SenseCam pictures would form a pictorial diary to cue and consolidate autobiographical memories. After wearing SenseCam, Mrs B, plugged the camera into a pc which uploaded the recorded images and allowed them to be viewed at speed, like watching a movie. In the control condition, a written diary was used to record and remind her of autobiographical events. After viewing SenseCam images, Mrs B was able to recall approximately 80% of recent, personally experienced events. Retention of events was maintained in the long term, 11 months afterwards, and without viewing SenseCam images for three months. After using the written diary, Mrs B was able to remember around 49% of an event; after one month with no diary.
Emma Berry, Narinder Kapur, Lyndsay Williams, Steve Hodges, Peter Watson, Gavin Smyth, James Srinivasan, Reg Smith, Barbara Wilson, and Ken Wood (2007) Neuropsychological Rehabilitation, 17 (4/5), 582-601
Using a paging systems in the rehabilitation of encephalitis patients
Memory and executive problems following encephalitis are common yet there are few published papers in the successful rehabilitation of such patients. We recently demonstrated (Wilson, Emslie, Quirk, Evans, & Watson, 2005) that a paging system could reduce the everyday memory and planning problems for people with non-progressive brain injury. Among the 143 patients who participated in the 2001 study were four people who had survived encephalitis. Their results are reported here. During a 2 week baseline, the successful task achievement of our four clients ranged from 2-81%. They then received a pager for 7 weeks and tasks achievement was documented in weeks 6 and 7. all were significantly more successful with the pager than they had been at baseline with success rates ranging from 45-96%. Five weeks after returning to their pagers they were monitored once more. One if the encephalitis patients failed to achieve any of his target tasks, returning to baseline level, the other three dropped back a little but were still significantly more successful than at baseline. It is concluded that the paging system can reduce everyday memory and planning problems of patients with encephalitis.
H. Emslie, B. A. Wilson, K. Quirk, J. J. Evans, and P. Watson (2007) Neuropsychological Rehabilitation,17 (4/5), 567-581
Cognitive recovery instead of decline after acute encephalitis: a prospective follow up study
Follow up of cognitive sequelae of acute encephalitis and estimation of the frequency of persisting dementia.
Out of a series of 45 consecutive patients with acute encephalitis prospectively studied in 1990-95, 40 were screened for difficulty in everyday life using the Blessed dementia scale (BDS) 3.7 (1.4), mean (SD), years after onset. Eight patients had had herpes simplex encephalitis (HSVE), 16 some other identified aetiology, and in 21 the aetiology was unknown. All, except two patients with a non-herpetic encephalitis, were treated with acyclovir. All patients with disability in BDS (12/40), were invited to a neuropsychological reassessment, and the results of this assessment were compared with those of a similar assessment done after the acute stage. At follow up one patient could not complete the tests due to intractable epilepsy.
In six of 11 cases the symptoms causing disability were mainly psychiatric. Five patients (two with HSVE) had a pronounced memory impairment together with other cognitive deficits, indicating dementia (frequency of 12.8%). In eight of the 11 testable cases cognitive performance had improved over the years, in two cases a decline was found and one patient with severe deficits showed no change. Intractable epilepsy was found in four of 12 cases.
Cognitive decline had taken place already at the acute stage, and further deterioration was uncommon. Considerable improvement occurred in most patients during follow up. Also in patients with HSVE treated with acyclovir the cognitive recovery was substantial and of a magnitude not expected based on previous literature. Intractable epilepsy contributed to the cognitive deterioration in some cases. Affective disorders also had a surprisingly important role for the long term outcome.
Keywords: encephalitis; herpes simplex; cognitive performance; psychiatric sequelae
Laura Hokkanen, Jyrki Launes (1997) Journal of Neurology, Neurosurgery Psychiatry;63:222-227
Long term neurological outcome of herpes encephalitis.
Lahat, E., Barkai, G., Paret, G., Brand N. and Barzilai, A. (1999)
Arch Dis Child, 80, 69-71
A light in a very dark place’: The role of a voluntary organisation providing support for those affected by Encephalitis
Voluntary organisations are seen as contributing to the “democratisation” of health and social care. Little, however, is written about their role and this paper, by focusing on the work of the Encephalitis Society, provides valuable insights into the challenges facing voluntary organisations that represent the needs of those with neurological disorders. Two empirical studies are presented: a review conducted by the Society, focusing on patients’ experiences of neurological services; and an external evaluation of the Society’s current provision. The first, based on a postal survey of its members affected by encephalitis (n ¼ 339), illustrates the Society’s advocacy role. The survey specifically supports the Association of British Neurologists’ recommendation for nationally agreed standards of care. The second study, based on a postal survey of recent contacts (n ¼ 76) and in-depth telephone interviews (n ¼ 22), demonstrates the Society’s value as a service provider and its role in helping to rehabilitate affected individuals and their families. In responding to these findings, the Encephalitis Society is reminded of the importance of maintaining credibility among its members as well as health care providers. Developing strategies, on the basis of informed action and partnership working with service champions, continues to inform the organisation’s sense of purpose, as it responds to the changing context of welfare provision in the UK.
Ava Easton, Karl Atkin, Phillippa Hare (2007) Neuropsychological Rehabilitation, 17 (4/5)
Encephalitis, a service orphan: The need for more reasearch and access to neuropsychology
Encephalitis and its consequences are often misunderstood, not only by the general public, but also by those providing health, educational and social services to those who have been affected. The aim of this paper is to provide a brief overview of the epidemiology and clinical consequences of encephalitis, and highlight the potential of approaches such as neurospsychology in its treatment, with the intention of helping health professionals improve the quality of care received by patients. It is argued that rehabilitation of people affected by encephalitis may benefit from interdisciplinary and biopsychosocial approaches, and that neuropsychological assessment can be a useful tool in recovery.
Ava Easton, Karl Atkin, Elaine Dowell (2006) The British Journal of Neuroscience Nursing, 2 (10)