Informal care giving for disabled stroke survivors

At any time, about 0.5% of the population of the United Kingdom (250 000 out of 50 million) are disabled stroke survivors who are dependent on the help of a carer to perform community based activities (for example, shopping), domestic activities (housework), and personal activities of daily living (mobilising, toileting, bathing, dressing, grooming, and feeding).¹ This year, at least another 0.07% (35 000) of the UK population will become disabled stroke survivors seeking full time or part time care.²,³ Such care is generally provided in a nursing home, hostel, or the home of the patient or carer, often after a period of care and rehabilitation in hospital. Additional formal support may sometimes be forthcoming from community nursing services and allied health and social services. But the onus of caring for such patients at home usually falls on one or more informal care givers, who are often family members (usually spouses and children), and sometimes friends.⁴ Two papers in this issue show that providing care givers with training in basic nursing skills is good for the patient, the care givers, and the community (pp 1099, 1102).⁵,⁶

Informal care givers aim to meet the needs of the dependent stroke survivor while concurrently adjusting vocationally, socially, and emotionally to the sudden change in their own lifestyle. The needs of the disabled stroke survivor are often multiple and include help with physical activities (for example, moving, handling, and transferring from bed to chair, and chair to toilet); nursing activities (facilitation of activities of daily living such as feeding); communication (verbal and non-verbal interaction with family, friends, and the outside world); psychological and emotional support (to adapt to the effects of the stroke); and social reintegration into society. Carers need to be motivated, enthusiastic, physically fit, psychologically sound, emotionally robust, financially resourceful, and adequately informed, trained, and skilled. Little time may be available between the sudden onset of stroke and discharge from hospital to consider, let along acquire, these attributes.

The consequences of informal care giving can be numerous and cumulative. The altruistic benefits of contributing to the welfare of the stroke survivor and the community can be a rich source of motivation and carer satisfaction. However, with time the chronic burden of physical, psychological, social, and financial stress, coupled with erosion of precious family and leisure time and lack of external recognition and support, contribute to anxiety, depression, and a decline in the quality of life of the care giver.⁴,⁷,⁸ Furthermore, for couples who were both working before the stroke, the combined loss of income from the stroke survivor and care giver (spouse) often far exceeds the combined remuneration from any government pension for disability and care giving, if available. Yet governments and society continue to benefit economically from not having to provide costly institutional care for these patients.⁴

Because of the prevalence and seriousness of the problem of caregiver burden and stress, several attempts have been made to devise, develop, and evaluate strategies of reducing the burden of informal care giving for dependent stroke survivors. These include the provision of information and education and access to services such as nursing, psychological counselling, emotional support, family support workers, and social workers.^9-12 Although modest benefits have been realised in some measured emotional, psychological, and social outcomes, care givers have continued to be compromised by physical stress in particular.

Kalra et al have taken the next step and shown by means of a randomised controlled trial that supplementing information and emotional support for informal care givers with specific training in basic nursing skills such as moving and handling, and facilitation of activities of daily living improves the outcome of disabled stroke survivors, informal care givers, and the community.⁵ A higher proportion of disabled stroke survivors achieved independence at an earlier stage, the mood and quality of life of disabled stroke survivors and care givers were improved, and the cost of stroke care was reduced. Whether these results can be generalised beyond middle class suburban United Kingdom and care givers who are motivated, keen, and physically fit needs further study.

The implications of these results, if they can be generalised widely, are that the (inpatient and outpatient) rehabilitation and care of disabled stroke survivors should be broadened to include the proposed care giver in the multidisciplinary rehabilitation team, involving them actively in setting goals, rehabilitation, care, and planning discharge and ensuring they are as adequately trained, supported, and followed as the patient.¹³ Although healthcare business managers may baulk at the perceived additional costs of providing training services for carers, perhaps they can dip into the greater pool of funds that would otherwise be required to provide care in hostels and nursing homes and thus help improve the quality of life of disabled stroke survivors and their carers.