STROKE is one of the leading causes of disability across the globe. Malaysians are not spared from this affliction. It is estimated that every year, almost 50,000 admissions to hospitals are due to stroke, and one in six Malaysians will suffer from stroke in their lifetime (1).
Patients who are admitted to hospitals for stroke usually stay for an average of one week before being discharged to be cared for by their family members (2). Patients and caregivers then find themselves having to cope with challenging daily routines of providing care.
Caregivers often find themselves at a loss and mostly helpless with regard to what needs to be done for their stroke-afflicted family member once they are discharged from the hospital.
Most patients will be given several follow-up appointments, and at best, with very minimal counselling on why numerous visits are required for stroke after-care. Quite often caregivers face challenges in keeping to these appointments, sometimes misplacing forms for blood tests, having to pick up refill prescriptions and organise or attend rehabilitation sessions on top of caring for their family members.
All too often, appointments are missed and sometimes never rescheduled. Despite the local figures that suggest stroke causes many hospital admissions, it is estimated that only two out of every 100 patients seen per month at public primary care health centres or Klinik Kesihatan are for stroke after-care and its related complications (3).
Could this be due to the lack of awareness among stroke patients as well as their caregivers, that post-stroke monitoring is necessary?
The aim of post-stroke care is to ensure that stroke risk factors are well controlled to prevent a recurrence (such as high blood pressure, obesity, elevated cholesterol levels and diabetes mellitus), to initiate or provide further rehabilitation as well as address mental health complications (such as depression and dementia).
Listed below are some hints, which may be helpful to guide the stroke survivor and their caregivers as they embark on their journey to recovery and adapting to life after stroke:
Ideally, a predischarge planning meeting is organised in the hospital before leaving. At this meeting, the caregiver is briefed, together with the patient on the plan for subsequent care.
Further investigations that need to be done to assess the overall risk of the patient getting another stroke – this may be a CT scan/ MRI or Ultrasound Doppler of the neck vessels. These may or may not have been done while the patient was in the hospital. (The Ultrasound Doppler of the neck vessels is done to determine if there is any narrowing [stenosis] of the vessels as this will mean that the stroke can recur due to the reduced blood supply to the brain.)
Appointment for rehabilitation to continue on an outpatient basis. Some patients may have commenced on rehabilitation while still in hospital, depending on the severity of the stroke. Rehabilitation may be in the form of physiotherapy or occupational therapy. The frequency of rehabilitation sessions and goals for the patient are based on the severity of the stroke, and tailored to the patient’s needs and capability. In some hospitals, this is determined by a rehabilitation physician, who reviews the patient’s progress and makes recommendations for the therapists to guide the patient and their caregiver. The best period for recovery is between six and 12 months after the stroke, depending on the severity of the stroke. The benefits of rehabilitation are plenty, and should never be underestimated.
Some patients may even need evaluation by a speech-language therapist (SLT). This is to assist in correcting speech problems (for example, slurring) or swallowing problems (choking, prolonged meal times, pneumonia caused by food going down the airways). Some patients may be discharged with a feeding tube until a thorough evaluation is done by the SLT. This is done to ensure that there is no abnormality with the swallowing process as a result of the stroke. The feeding tube is generally a temporary form of assisted feeding, and is not meant as a long-term option. Make sure you check with your physician or SLT on how long the feeding tube will be used, and how frequently the tube needs to be changed.
Follow up appointments to be reviewed by the specialist neurologist or internal physician or the family physician after discharge. This visit is to ensure the patient’s medical problems are adequately treated. These visits also involve reviewing appropriate medications and dosages to ensure effectiveness and to prevent another stroke. These visits are usually arranged based on how well-controlled the stroke risk factors / medical problems are in your spouse/ parent /relative. For example, if your spouse/ parent /relative has had poorly-controlled hypertension or diabetes prior to the stroke, chances are the follow-up appointments may be more frequent than a stroke survivor who has a fairly well-controlled hypertension or diabetes. Make sure you bring the appropriate documents (such as the referral letter) or discharge summary from the hospital your spouse/relative was treated when you attend the follow-up at the clinic.
Stroke is a life-changing event, for both the patient and caregiver. The challenges in coping with normal daily routines, such as bathing, toileting and feeding are tremendous, for both the patient as well as the caregiver.
Depression among stroke survivors is common, and early recognition is vital. In a local study conducted at UKM Medical Centre, it was found that at three months after diagnosis, 26% of patients who were attending rehabilitation for stroke had experienced depression and this affected the progress of their rehabilitation (4).
In studies among caregivers, depression rates were higher, ranging 32-52% (5,6). Hence, it is important to recognise that depression is common and that help is available. Talk to your doctor if you or your spouse/relative feel overwhelmed or fatigued.
For further reading material, several caregiver guides are available at:
Associate Professor Dr Aznida Firzah Abdul Aziz is a family physician and Head of Dept of Family Medicine, Faculty of Medicine, UKM Medical Centre. Her area of interest includes long-term stroke care delivery to patients in the community as well as evaluation of health systems.
1. Krishnamoorthy M. Killer stroke: Six Malaysians hit every hour. The Star. 2007;
2. Hamidon BB, Raymond AA. Risk factors and complications of acute ischaemic stroke patients at Hospital Universiti Kebangsaan Malaysia (HUKM). Med J Malaysia. 2003:58(4):499–505.
3. Abdul Aziz AF, Mohd Nordin NA, Abd Aziz N, Abdullah S, Sulong S, Aljunid SM. Care for post-stroke patients at Malaysian public health centres: self-reported practices of family medicine specialists. BMC Family Practice; 2014: 15(1):40.
4. Fairuz Ali M, Aziz N, Aziz A, Rizal A, Azmin S. Early functional recovery of ischaemic stroke patients after 3 months of transfer of care from hospital to the community: A prospective observational study. Cerebrovasc Dis. 2012;34:46.
5. Kotila M, Numminen H, Waltimo O, Kaste M. Depression After Stroke : Results of the FINNSTROKE Study. Stroke. 1998;29(2):368–72.
6. Morimoto T, Schreiner AS, Asano H. Caregiver burden and health-related quality of life among Japanese stroke caregivers. Age Ageing. 2003;32(2):218–23.