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Aftercare for stroke patients

Aftercare for stroke patients

Key learning points:

– Stroke is a major cause of long-term physical and psychological problems

– Community nurses have a key role in managing and supporting patients and carers following a stroke, in which many of whom will have multiple other medical problems

– Stroke is a preventable and treatable disease. Recovery can carry on for months or years after the acute event, so don’t write your patients off too soon

Stroke remains one of the major public health problems in both developed and developing nations. It is largely preventable, as up to 70% of cases are avoidable with effective management of hypertension, diabetes, hyperlipidaemia, avoidance of smoking and obesity. It is also a treatable disease, as many interventions have been shown to be effective.1

In the UK around 100,000 people will have a stroke each year, of which around 85% will survive and leave hospital. Community nurses have a crucial role in helping these people and their families cope with the after effects of the stroke, as well as helping to reduce the chances of stroke recurrence. Although approximately a third of stroke survivors will have no outward long-term impairments, most will still have been affected psychologically.

Stroke can affect people of all ages – including children – but the risk increases rapidly with age. Half of all strokes happen to people over the age of 75 years. Therefore stroke often occurs in the context of other medical problems, meaning skilled management of complex multi-morbidity is essential.

This article examines the range of problems that occur, addresses some of the specific issues that can arise, and how community nurses can contribute to management of stroke patients.

The size of the problem

Stroke is the most common cause of significant adult disability and the third most common cause of death in the UK. Treated effectively a severe stroke can be transformed into one where there is minimal or no long-term disability. Even if the acute event cannot be reversed and there is neuronal damage, with high quality rehabilitation patients can have their lives transformed and often regain independence they have lost. Failure to deliver the best care, a negative attitude and giving up too early is likely to result in a high cost to the patient, their carers and society.

What unmet needs do patients report after A stroke?

In a national study3 about half of the sample reported no unmet needs, but the remainder identified an average of three problems where they felt they could have been helped. These were: 21% problems with falls and incontinence, 15% pain and nearly 40% had emotional problems. Nearly half of patients had fatigue, and over half complained about their memory. A total of 52% had been unable to return to work and two thirds had not been able to resume their previous leisure activities. Personal relationships had suffered in nearly half of the patients and financial problems were common.

How does recovery happen?

The chances of being alive at one, five and 10 years after stroke are about 64%, 44%, and 24.0% respectively. One of the most common misunderstandings is that any stroke recovery will occur within the first few weeks. This is of course nonsense, and beliefs such as this can be extremely damaging. In many instances patients are being deprived of rehabilitation that might have helped them.

Recovery can occur through a number of mechanisms. In the early phase, resolution of cerebral oedema allows neurones to start working again. Later, the brain may adapt to the loss of function in one part of the brain by developing the ability for those functions to be controlled by an unaffected part, (neuroplasticity) and rehabilitation probably works by encouraging neuroplasticity. But of course rehabilitation is not just about recovery of impairments, it is also about learning to adapt to deficits. For example, finding alternative ways of undertaking activities, using aids to take over functions that previously they could do unaided, and finally coming to terms with a change in ability.

Management of specific problems

1. Motor deficits and physical fitness

Often the most obvious problem is with motor function. Weakness, spasticity and incoordination are all common. The type of problem will depend on the size and location of the stroke and the quality of their rehabilitation. Patients need to be encouraged to continue to exercise both to stimulate the brain to rewire, and also to try and recover physical fitness. Everyone after an acute stroke will rapidly lose cardiorespiratory fitness and strength, even on the unaffected side. Exercise is often considered to be boring and patients find it difficult to see the point of working hard to only appear to achieve so little. However, this is really important both to allow better recovery of their activities of daily living, and to reduce the risk of further stroke and heart disease. Spasticity is a common problem after stroke. It can cause pain and may limit how much movement a patient is able to achieve. In many instances it is treatable using physiotherapy, a drug such as baclofen, and in some cases botulinum toxin injections. Many hospitals now run specialist spasticity clinics and if someone appears to be developing spasticity they should be referred for an expert opinion.

2. Sensory

Loss of sensation after a stroke is as common as loss of power and can be even more disabling. It is much less well recognised, as it’s not as clearly visible to clinicians. For a patient not to know where an arm or leg is – or at its most extreme not even recognising that a limb belongs to them at all – can result in profound disability. For the community nurse confronted with this sort of patient it is vital to make sure that the arm and leg are properly positioned so that the patient won’t injure themselves, and then to encourage the person to attend to the affected side. Recovery of sensory function is often slower than recovery of motor function and physiotherapy and occupational therapy are just as important as they are for patients with motor deficits.

3. Cognitive

Nearly everyone after a stroke will suffer some element of cognitive deficit which if mild may only become apparent when the patient returns home or goes back to work. Stroke often happens to people who already have underlying dementia secondary to Alzheimer’s disease or vascular dementia. The community nurse may be in an ideal position to help disentangle what is new and what’s pre-existed. Cognitive problems secondary to stroke can recover in the weeks after the stroke in the same way as other neurological problems.

4. Psychological

Major depression occurs in up to half of all stroke survivors in the first couple of years after stroke, with the risk being highest early. Management is difficult as there is little research to guide treatment. There is limited evidence to support the routine use of antidepressants, although there will be times when a trial of therapy is worthwhile. Cognitive behaviour therapy is the mainstay of treatment, however with a desperate lack of psychological support for patients in most parts of the country this can be difficult to deliver. Again, the role of the community nurse in recognising mood disorders and then supporting the patient and their family is vital.

5. Continence

Loss of bladder and bowel control is a common and devastating problem for patients with stroke, particularly for those with large deficits. A skilled assessment to establish the cause is the first and most important step towards solving the problem. It should never be accepted as an inevitable and untreatable complication of stroke just to be managed by putting on an incontinence pad. We should never forget that while incontinence may seem almost ‘normal’ in some patient groups, for every individual suffering from it, it is an embarrassing and humiliating experience. We can probably all remember back to our childhood when we had an ‘accident’ in front of other people and remember the humiliation that caused. Why do we expect that feeling to be different in adults?

6. Pain

Pain is another common complication after stroke, it can arise from different causes, such as central post stroke pain, spasticity, contractures, subluxation of the shoulder, degenerative arthritis made worse by asymmetrical walking or excess strain being taken by the unaffected side. Careful evaluation of the cause of the pain, treating reversible factors and then using analgesia where necessary should be the approach. If pain is regular and persistent, taking pain killers regularly is usually a better option than taking them when the pain becomes unbearable.

7. Nutrition and hydration

An increasing number of patients are surviving severe strokes and being discharged back to the community with persistent dysphagia requiring enteral feeding. Management of these patients at home requires skilled multidisciplinary working involving the community nurses, dietitian, speech therapist and GP. Some patients will recover a safe swallow even many months after the stroke so patients should always be kept under review to ensure that oral feeding is started when it’s safe.

8. Sex/relationships

Relationship problems are a frequent consequence of stroke. Difficulty in maintaining close physical relationships may well contribute to the issue. Patients need to be reassured that sexual activity is not dangerous and can be achieved even in the context of physical difficulties. Use of drugs such as viagra to help erectile dysfunction can be considered.

9. Fatigue

Fatigue is nearly universal after a stroke, even where the physical deficits are small, and can persist for many months afterwards. The main advice I give to patients is to recognise that it is a ‘normal’ occurrence, and to try and regain good cardiorespiratory fitness through a formal exercise programme. Additionally, make sure that they have a normal sleep pattern – exclude sleep apnoea and avoid night sedation and daytime naps.

10. Health of carers

It is widely reported that the health of the carers of patients with stroke are at risk, with high rates of both physical and psychological pathology. Again, it is a key role of the community health services to identify if and when these problems arise and provide the necessary support to the carers.

Prevention of further stroke

Stroke is not a single disease and there are multiple causes. Therefore there is no single prescription for stroke prevention. The general principle is that the cause should be identified as far as is feasible. The patient and their carers should understand why the stroke happened and how best to reduce the risk of further events. Medication should be given as needed, but drug regimens kept as simple as possible. We do not do well with prevention; compliance with lifestyle advice such as healthy eating, weight reduction, smoking cessation and exercise is frequently ignored. Concordance with medication is often poor for long-term conditions and doctors and nurses may be at fault for failing to prescribe appropriate drugs. The most obvious example is our failure to identify atrial fibrillation and to treat it with an anticoagulant. It is scandalous that only 40% of patients admitted with a stroke and known atrial fibrillation were on an anticoagulant prior to admission. There are about 6,000 avoidable strokes a year in the UK because of this one failure.

Organisation of services

Ninety percent of the money spent on the medical treatment of stroke patients is spent in hospital but of course the patient spends most of their time out in the community. We have to think how to shift resources from the hospital to the community. One way to do this is increasing the capacity of early supported discharge teams designed to provide specialist rehabilitation at home instead of on the stroke unit.

Early supported discharge (ESD) has been shown to be clinically effective, cost effective and acceptable to patients and yet is only available to around three quarters of the population in England. Developing high intensity ESD would be worth testing. These would be teams that can take people even earlier from hospital, at a time when the patient might require more intensive nursing than can currently be provided or the patient may need double-handed therapy to progress.

Focusing the care of complex patients with long-term conditions to primary care centres that have particular expertise and time to properly case manage these individuals may be a good model of care. Coordinating more effectively the care available for patients discharged to care homes so that they are not deprived the benefits of effective rehabilitation is also important. It is unacceptable to write a patient off simply because they are not returning to their own home.


1. Intercollegiate Stroke Working Party. National Clinical Guidelines for Stroke, 4th ed, 2012. (accessed 1 March 2016).

2. Wolfe CD, Crichton SL, Heuschmann PU, McKevitt CJ, Toschke AM, Grieve AP, Rudd AG. Estimates of outcomes up to ten years after stroke: analysis from the prospective South london stroke register. PLoS Med 2011;8(5):e1001033.

3. McKevitt C, Fudge N, Redfern J, Sheldenkar A, Crichton S, Rudd AR, Forster A, Young J, Nazareth I, Silver LE, Rothwell PM, Wolfe CD. Self-Reported Long-Term Needs After Stroke. Stroke 2011;42:1398-1403.

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Stroke remains one of the major public health problems in both developed and developing nations. It is largely preventable, as up to 70% of cases are avoidable