Rehabilitation and recovery – psychological effects of stroke

Neuropsychological sequelae are common following stroke and include a range of cognitive and mood disorders, as well as difficulties with adjustment, body image and confidence. Cognitive difficulties (changes in thinking skills as a direct effect of brain injury) are different from changes in mood or emotion which could be a direct effect of brain injury, but also as psychosocial consequences of adjusting to stroke. People with stroke report that psychological problems are often under-recognised, with high levels of unmet need. Psychological effects of stroke can have a significant and long-lasting impact on people with stroke and their carers and are associated with poorer rehabilitation outcomes. It is important that any pre-stroke psychological conditions are understood and considered in the assessment and treatment of any further psychological consequences of stroke. [2023]

National policymakers have identified the importance of improvements in psychological care after stroke in the NHS England National Stroke Service Model (2021) and Integrated Community Stroke Service Model (2022). Clinical psychologists/neuropsychologists are an essential member of the multidisciplinary stroke team along the pathway of care and have an important role in supporting the delivery of psychological care by the broader team. [2023]

These sections on cognition covers the range of cognitive problems that can occur after stroke with recommendations to help the person with stroke to reduce the impact of these problems on social participation. General issues are covered (Section 4.28 Psychological effects of stroke – general) followed by recommendations for specific cognitive domains (Sections 4.29-4.34) and mental capacity (Section 4.35 Mental capacity) and should be read together with recommendations for the organisation of psychological care (Section 2.11 Psychological care – organisation and delivery). [2023]

Awareness, identification and management of both cognitive and mood impairment can be viewed through the lens of the stepped care (Gillham & Clark, 2011) and matched care models more commonly associated with mood disorders (see Section 2.11 Psychological care – organisation and delivery). Knowledge and skills required by the multidisciplinary team must be maintained across all levels of the model, with all members being able to support those with mild impairment (level 1), those with specialist skills and competencies such as occupational therapists working with those with moderate impairment affecting activities of daily living or engagement in rehabilitation (level 2), and access to clinical psychology/neuropsychology for those with severe or persistent impairment or where psychological issues are significantly impacting on safety or decision making (level 3). Adequate provision of clinical psychology/neuropsychology is required along the pathway to assist in training and supporting the stroke team as well as providing specialist clinical management for those requiring it, particularly those with level 3 needs. [2023]

Mood disorders are associated with poor outcomes after stroke and increased mortality (House, et al, 2001). Some patient groups have higher prevalence, such as those with aphasia being twice as likely to develop depression after stroke, than those without aphasia. Assessment of mood requires use of validated tools for people with stroke, being mindful of cognitive and communication difficulties. Gillham & Clark (2011) suggest a screening pathway which includes those with aphasia. It is important that pre-existing mental health conditions are well understood by the team, including management and previously used strategies. [2023]

There are some shared features across domains which can make it challenging to identify where to start with screening and assessment. For example, someone may present as ‘flat’ and not initiating activities for a variety of reasons, including mood disorder, apathy, fatigue, or cognitive lack of initiation (due to memory, or executive dysfunction). These features can present similarly and can co-exist. Working with clinical psychology/neuropsychology colleagues assists the multidisciplinary team to understand the contribution and impact of these various factors in interpreting findings and informs treatment planning. [2023]

Cognitive impairment is associated with poor outcomes after stroke, such as increased length of hospital stay and reduced independence. Cognitive deficits are probably present in the early period after stroke for the majority of people, even those without limb weakness. Each cognitive domain (e.g. perception, attention, memory, executive functioning) should not be considered in isolation because most everyday activities draw on a range of abilities. Assessment and treatment need to take this overlap into account, particularly where changes to communication skills or mood exist. People should not be excluded from rehabilitation by an existing diagnosis of dementia. [2023]

Cognitive screening uses a brief multidomain test to identify cognitive problems after stroke. Screening makes a distinction between those with and without likely problems, and identifies a group who may need more detailed or bespoke assessment. Initial screening (in the first few days after stroke) is expected to offer value in care planning and is applicable for most patients with exceptions where conscious level is reduced, delirium or severe cognitive impairment would confound the interpretation. Decision-making about if/when to proceed with cognitive screening should be based on clinical judgement and an understanding of the purpose of screening. Where cognitive screening is judged to be impractical or inappropriate, consideration must nevertheless be given to the potential influence of cognitive impairment on immediate support and care needs of the patient e.g. awareness of risk, initiating taking drinks, making meal choices, managing visitors. [2023]

Cognitive screening is not diagnostic, and the screening test result is only part a of the initial multidisciplinary assessment process. The MDT approach and treatment plan should be informed by a holistic understanding of the patient’s and (if relevant) family’s perception of current cognitive status, ongoing clinical interpretation of patient’s presentation, cultural factors and their screening performance. [2023]

Common uses of cognitive screening will include: to establish the presence or absence of a deficit; to provide preliminary information regarding strengths and weaknesses; to give an indication of immediate support needs and long-term care and rehabilitation planning considerations (along with wider clinical information available to the MDT); to optimise the design of individual rehabilitation programmes; to consider assessment needs regarding mental capacity; and to plan further detailed and specific assessments. Screening alone should not be used to inform any rehabilitation outcomes (especially long term). It is widely accepted that screening tools have limitations, such as a ‘ceiling effect’, therefore there will be some people with stroke who do experience cognitive impairments but perform well during screening. It is therefore important that screening performance is considered along with patient-reported difficulties and functional performance. Cognitive assessment should be considered for any person reporting or demonstrating a change in cognition, irrespective of their screening score. [2023]

The timing of cognitive screening is influenced by several variables, including the ability of the patient to engage in the process and the intended purpose of screening. Impaired performance on a screening test is common in the first days following stroke and the natural history is usually a degree of spontaneous improvement over time. It is important that screening results are considered in the context of pre-morbid ability, function and age, rather than solely on cut-off scores. The key consideration in timing must be the identification of cognitive factors required for planning necessary support and rehabilitation. Direct cognitive assessment may not be feasible or useful early after stroke, but screening for delirium and pre-stroke cognitive issues can begin immediately (SIGN, 2019; NICE, 2023a). [2023]

Re-screening is not routinely required at each transition along the pathway, but should be undertaken when clinically indicated. Re-screening is part of the ongoing pathway of care and is indicated when knowledge of cognitive function is not sufficient (due to the passage of time or change of patient status over time); or when the conclusions from previous cognitive screening or assessment cannot be accessed. [2023]

Screening should only be administered and interpreted by staff trained in the use of the selected tool, and who are familiar with its limitations. Advice from colleagues with appropriate expertise should be sought to aid test interpretation where needed. [2023]

In this context assessment means undertaking a detailed or focused investigation and evaluation, that may be both diagnostic and prognostic.  This can be achieved by combining assessment of functional performance, standardised cognitive assessments and the person’s perception of their cognitive skills and difficulties. Assessment is required to determine the nature and extent of the impairment, to detect more subtle cognitive changes and to provide a detailed cognitive profile. However, assessment is an ongoing process that should continue along the stroke pathway, with assessments undertaken as required to inform a rehabilitation approach relevant to the person’s needs at that time. [2023]

Assessment requires a trained assessor such as an occupational therapist, clinical psychologist, or clinical neuropsychologist. The assessor requires the knowledge and skills to undertake and interpret the assessment, and to evaluate the clinical presentation in the context of other variables such as educational attainment and the clinical context. Access to or supervision by a clinical psychologist/clinical neuropsychologist is required for members of the multidisciplinary team administering neuropsychological assessments. Standardised assessments can be multi-domain but are more likely to be limited to a specific aspect of cognition under investigation. [2023]

Apraxia is the difficulty performing purposeful actions due to disturbance of the conceptual ability to organise actions to achieve a goal.  People with apraxia often have problems carrying out everyday activities such as dressing or making a hot drink despite adequate strength and sensation.  They may also have difficulties in selecting the right object at the right time or in using everyday objects correctly.  Apraxia can be detected using standardised tools (e.g. Test of Upper Limb Apraxia [TULIA]) and is usually associated with damage to the left cerebral hemisphere. [2016]

Attention is a prerequisite for almost all cognitive functions and everyday activities.  Disturbed alertness is common after stroke especially in the first few days and weeks, and more so in non-dominant hemisphere stroke.  Attention impairments may persist in the longer term and may be specific (e.g. focusing, dividing or sustaining attention) or more generalised, affecting alertness and speed of processing and be evident in poor engagement or general slowness.  Attention problems may lead to fatigue, low mood and difficulty with independent living. [2016]

Subjective problems with memory are very common after stroke, and memory deficits are often revealed on formal testing with standardised measures (e.g. the Rivermead Behavioural Memory Test [RBMT]).  Memory deficits can lead to longer hospital stay, poorer outcomes, risks to personal safety, and cause distress to people with stroke and their family.  Memory loss is a characteristic feature of dementia, which affects about 20% of people after stroke, but this section is not directly concerned with the impairments associated with diffuse cerebrovascular disease.  It should also be noted that subjective memory problems can result from attentional or executive difficulties. [2016]

Executive function refers to the ability to plan and execute a series of tasks, inhibit inappropriate automatic impulses, regulate emotional responses, foresee the consequences of actions and make judgements about risk. The ‘dysexecutive syndrome’ encompasses various impairments, including difficulties with problem solving, planning, organising, initiating, inhibiting and monitoring behaviour. It also includes impairments in cognitive flexibility, which is the ability to change cognitive or behavioural strategies to adapt to novel or evolving task demands. These can be detected using standardised tools (e.g. the Behavioural Assessment of the Dysexecutive Syndrome [BADS]). Executive functions rely heavily upon attention (Section 4.32 Attention and concentration) and are associated with deficits in everyday function and independence. [2016]

Assessment of mental capacity and subsequent actions are an important feature of stroke care because of the prevalence of cognitive and communication impairments after stroke.  The law is clear that these are not reasons to assume that a person lacks capacity. [2023]

Mental capacity is assessed by whether a person has an impairment of mind or brain that affects their ability to understand, retain and weigh up information relating to a particular decision and to express their opinions, desires and feelings about the decision.  A capacity assessment is decision-specific and often requires the skills of the multidisciplinary team to enable the person with stroke to demonstrate their ability to make a decision for themselves.  Every opportunity should be taken to support the individual to demonstrate capacity, which may involve preparatory sessions introducing resources, orientation to the decision, and establishing the most reliable means of communication.  The capacity interview should be undertaken by someone with the appropriate skills, relationship with the person, and knowledge of the relevant information, including, for example, speech and language therapists for those with aphasia or complex feeding decisions.  The interview should be augmented according to the person’s individual needs, such as time of day, environment, means of communication and the length of interview.  Information gathered at the capacity interview should be presented alongside information gathered regarding functional abilities, previously expressed wishes and consistently held preferences. [2023]

Where a person with stroke lacks capacity regarding a specific decision, decision making should be made in line with the best interest process, considering foremost the decision the individual would have made had they had capacity and the least restrictive option available.  The use of best interest balance charts may help in ensuring all aspects of the decision are included, such as medical, social, ethical, and safety issues. [2023]

Perception involves the processing and interpretation of incoming sensations, which is essential to everyday activities.  Perceptual functions include awareness, recognition, discrimination and orientation.  Disorders of perception are common after stroke and may affect any sensory modality.  However, visual perception has been the most widely studied, particularly visual agnosia (impaired object recognition).  Perceptual disorders can be detected using standardised assessment tools (e.g. the Visual Object and Space Perception battery [VOSP]).  It is important to distinguish between deficits affecting the whole perceptual field (covered in this section) and unilateral neglect (Section 4.37 Neglect) or damage to the visual pathway or eye movements (Section 4.48 Vision). [2016]

Neglect refers to a neuropsychological condition common after stroke whereby a person has reduced and impaired ability to process spatial information. This has consequences for further neuropsychological processing including reasoning, memory encoding and retrieval, as well as the frequently observed impaired interaction with the environment whereby people overlook or appear to be unaware of items or their contextual field. [2023]

Problems with spatial awareness (also referred to as visuospatial inattention) refer to a reduced awareness of some part/s of the person’s body or their environment.  Visual neglect can be allocentric (relating to interpreting environmental stimuli) or egocentric (relating to the person’s own point of view).  It is more common in people with non-dominant hemisphere stroke (typically causing left-sided neglect) and those with hemianopia.  Behavioural symptoms include bumping into objects on the affected side or only reading one side of pages in newspapers or books.  Patients are usually unaware of the impairment, and therefore the treatment approach differs from that used in hemianopia where patients are more readily able to compensate. [2023]

Neglect can be detected using standardised assessments (e.g. the Catherine Bergago Scale) and should be reviewed across personal, reaching and locomotor space.  Neglect can be severe, with a person demonstrating features of the neglect syndrome (such as being unable to turn their head beyond the midline), or very subtle, affecting people moving through locomotor space, which may only be evident during a more cognitively demanding task.  It is particularly important to ensure those who are using electric wheelchairs, crossing roads or returning to driving (see Section 4.14 Driving) or work (see Section 4.15 Return to work) are fully assessed.  Neglect is linked with the attentional systems of the brain, thus occurs in people with difficulties maintaining and dividing attention, and impacts on activities of daily living, motor recovery (through learnt non-use) and safety. [2023]

Sensory neglect  is also a feature post stroke, with people lacking awareness of the sense of touch, proprioception or movement in a limb, despite sensation being present.  In those with severe neglect, both sensory and visual neglect are often present. [2023]

The following sections cover a range of emotional problems that can occur after a stroke, with recommendations to help the person with stroke to achieve improved well-being and quality of life.  The recommendations should be implemented in the context of a psychological needs assessment and care planning and in relation to the organisation of psychological care Section 2.11 Psychological care – organisation and delivery). See also the section on self-management (Section 4.4 Self-management). [2023]

Mood disturbance is very common after stroke. It may present as low mood, depression or anxiety, or with increased levels of emotional agitation, instability or emotionalism, limiting functional recovery and often associated with risk assessment needs and increased mortality (Morris et al, 1993; House et al, 2001). Many people with stroke are troubled by psychological distress that does not meet diagnostic criteria for depression and anxiety but which nevertheless disrupts and impedes their lives and relationships. A stroke is a significant life event and in this context some emotional distress is normal and part of adjustment to a substantial change in circumstances. Healthcare professionals working with people with stroke should be aware that mood disturbance after stroke can arise because of psychosocial factors (e.g. disability, loss, trauma), or as a result of neurochemical changes in the brain, or both. [2023]

Depression affects about one third of people with stroke and frequently persists long-term (Hackett et al, 2009; Ayerbe et al, 2014). Anxiety is also common, affecting around one-quarter of people with stroke, and, like depression, may only become evident after several months (Knapp et al, 2020). Depression and anxiety are closely linked and may be part of a single emotional response to stroke, commonly alongside additional psychological effects such as hopelessness, frustration or anger. [2023]

In a UK survey, three-quarters of people with stroke reported experiencing at least one mental health problem after a stroke, with 44% of people reporting experiencing anxiety or depression, 42% experiencing mood swings, 47% experiencing reduced self-confidence and 16% reporting suicidal thoughts (Stroke Association, 2020). A survey of long-term needs found that nearly three-quarters of people with emotional difficulties felt their needs had not been fully met (McKevitt et al, 2011). [2023]

Psychological disturbances also commonly follow on from neuropsychological consequences of stroke, whether such underlying effects are recognised or hidden. This highlights the need for sufficient and adequate assessment to correctly identify what may underpin and explain emotional changes after stroke and thereby guide appropriate rehabilitation approaches. Additionally, mood disturbance or other mental health issues may frequently exist for people prior to a stroke, which will affect their post-stroke experience (Taylor-Rowan et al, 2019), and need to be considered and understood for their clinical management and rehabilitation planning. [2023]

As far as is possible, approaches and assessment measures should be adapted for use with people with mild aphasia, and several have been designed specifically for people with more severe aphasia (e.g. the Stroke Aphasic Depression Questionnaire [SADQ], the Depression Intensity Scale Circles [DISCs] or the Behavioural Outcomes of Anxiety [BOA] scale). [2016]

Apathy is described as a reduction in goal-directed activity in behavioural, cognitive or social dimensions of a person’s life in comparison to their previous level of functioning (Robert et al, 2018). It can be characterised by both subjective motivational changes and reduced observable behaviour, and by decreased emotional responsiveness. Apathy occurs in about one third of people with stroke and has a negative impact on functional outcomes, and is under-recognised and poorly understood (Tay et al, 2021). In clinical practice, recognition of apathy is in its infancy. Increased understanding and training is required by stroke healthcare professionals to identify apathy alongside other cognitive or mood-related changes. Training should be provided by those with appropriate knowledge and skills such as clinical psychologists/neuropsychologists. [2023]

Emotionalism is an increase in emotional behaviour (crying or, less commonly, laughing) following minimal provoking stimuli. Around 20% of people with stroke are affected in the first six months and although frequency decreases by 12 months, more than 10% remain affected (Hackett et al, 2010). Emotionalism can be distressing for people with stroke and their families and can interfere with rehabilitation. [2016]