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A principle objective for people with long term disability due to neurological disease, whether it be stable or progressive, is to live an independent life in the community for as long as possible. The neurological management of these patients aims to reduce their disability and consequent handicap within society. The most basic needs to allow independent living are access to information, advice and treatments from appropriate clinical specialists, counselling, housing, provision of aids and equipment, personal help, transport, and access to society.
It is the wish of most people to live at home. When resources are scarce, shifting the balance towards care in the community becomes increasingly important. The issues concerning the provision of domiciliary aids and care are complex and encompass individual wishes and the influences of society, as well as economic, social, and political issues. There are considerable variations in the provision of domiciliary services in different societies, and this chapter considers the problems from a United Kingdom perspective.
Factors that influence the delivery of domiciliary neurological care
The aetiology of the disorder
The nature and severity of the disabilities
The age of the patient
The availability of domiciliary support
THE AETIOLOGY OF THE DISORDER
A wide variety of neurological disorders lead to severe disability. The assessment and provision of appropriate domiciliary support will depend on whether the disorder is stable (for example, congenital handicap such as some forms of cerebral palsy, stroke, traumatic paraplegia or tetraplegia, or head injury), progressive (for example, muscular dystrophy, motor neuron disease, or multiple sclerosis) or stable with late deterioration (for example, poliomyelitis, some cases of athetoid cerebral palsy). The unmet need for domiciliary support tends to be higher for those with progressive disorders whereas the financial burden on carers is greatest for those with congenital disorders.
THE NATURE AND SEVERITY OF THE DISABILITY
The range of neurological disability which can be managed at home ranges from mild disability through immobility to complete dependence (with or without awareness). The practicality of maintaining patients in the home environment will be determined by the severity of the disability, the available infrastructure of aids and carers, and the cost of such an undertaking. A wide variety of specific severe disability can be satisfactorily managed in the home environment. These include immobility, severe impairment of limb function, cognitive function, communication, swallowing, breathing, and other activities of daily living.
THE AGE OF THE PATIENT
Community care was primarily developed for elderly people and for people with learning disabilities. The shortfall in the present services has emphasised the disparity in the provision of services for young disabled people. The benefits of providing home care for young people should seek to extend beyond providing an environment in which the person can be socially independent to allow financial independence whenever possible.
THE AVAILABILITY OF DOMICILIARY SUPPORT
Caring for a disabled person at home normally falls to close family members and friends. In many cases, particularly when there is severe cognitive impairment, family support will be the most important factor in determining the success of home care. However, it is entirely possible for people with severe disabilities to live independently with the support of various care attendants. In some cases, these carers may live in the house of the disabled person and receive pay plus free board and lodgings. The burden of responsibility often falls on the patient to instruct the carers about the procedures to be carried out. Packages of care set in place by statutory agencies often lack flexibility and impose rigid and poorly tolerated regimes on disabled people. Schemes of care organised within the voluntary sector tend to be more adaptable.
The successful application of aids to facilitate independent living within the home depends on adequate and suitable housing. This particularly applies to the installation of adaptations such as showering and bath aids, stair lifts, and hoists. Provision is required for an appropriate range of housing varying from simple housing adaptations of the patient’s existing house or apartment through adapted housing, a variety of sheltered living schemes, to forms of residential care.
The mean capital cost of equipment and adaptations for a recent series of patients with appreciable or severe disabilities was £5700 to patients and their families, and £4500 to statutory bodies.1 Two thirds of this was spent on structural alterations and the remainder on aids and equipment. Costs to the patient were not related to income from employment or state allowances. The capital costs of disability acquired later in life were partly ameliorated by accrued pension but for those disabled earlier in life costs were born by the carers and the family. Disabled people and their families need to be made aware of the bewildering array of state financial benefits. Funding of equipment is often a problem and varies from district to district. It is the responsibility of the rehabilitation team to look into possible sources of funding before recommending equipment.
Domiciliary management of specific disabilities
LIMB FUNCTION AND MOBILITY
Many patients require physiotherapy input which may be provided in the home. Patients with severe spasticity require advice concerning careful positioning to relieve discomfort. They also require passive exercise programmes to prevent contractures and maintain joint mobility. Mobility is fundamental to many functional activities and the amelioration of handicap. Orthoses may be used to compensate for weak or absent muscle function or, in spasticity, to resist the unopposed action of the spastic muscles. Progress in design and technology has led to a vast improvement in the performance of wheelchairs but appropriate provision of these remains patchy in the United Kingdom.2 3 The provision of appropriate wheelchairs and seating should be undertaken by a specialist team, members of which have knowledge, not only of the patients and their needs, but also of the range of options available for chairs and accessories. Patients must be assessed in the home environment. They should receive training in using the wheelchair, which should be regularly maintained and serviced.
SPEECH AND COMMUNICATION
Disorders of communication are a source of considerable frustration and interference with the quality of life. They are a particular problem for patients with progressive disorders such as motor neuron disease. Patients should receive early and regular support from a speech and language therapist in a hospital, at a resource centre, or in the community. They should be assessed for their likelihood of benefiting from specific exercises, and from appliances, and aids including communicators, light writers, or computers. Regular review of patients with progressive disorders is important because bulbar function may deteriorate rapidly.
The home care of dysphagia is exemplified by motor neuron disease, although dysphagia may also occur as a feature of “stable” disorders including previous head injury or stroke. Hypersalivation is occasionally amenable to simple pharmacological treatment but may require the provision of palatal lifts. The speech and language therapist is able to teach lip-seal, jaw, and tongue exercises, and advise about the impact of consistency of food on swallowing and on diet. The patient may choose to eat on his own because of anxieties about choking or slow eating. Feeding may be so slow and vulnerable that continuing oral intake is not practicable. The choice of further feeding lies between nasogastric tube and percutaneous endoscopic gastrostomy. Once they are over their initial concerns, patients and their carers usually prefer percutaneous endoscopic gastrostomy to nasogastric feeding because it is less obtrusive and better tolerated.
Respiratory involvement is common in neuromuscular disorders, most of which are progressive or deteriorate after an initial period of stability. After investigation to characterise and quantify the extent of respiratory insufficiency simple measures may be adequate to maintain ventilation, but mechanical ventilatory support may become necessary. Many patients dependent on long term mechanical ventilation have been well maintained in the home environment. Such domiciliary ventilation requires detailed initial assessment and meticulous attention to the availability of home care, the maintenance of equipment, and access to hospital. Suitability for domiciliary support is determined by factors including the degree of respiratory dependence, the associated non-respiratory disability, and the support from the family. Patients and their families must be provided with detailed education in the techniques and equipment, the necessary aids (for example, hoists, suction, and communication aids), back up ventilator power support, regular medical review, annual influenza vaccination, and instant access to hospital both for servicing their equipment and at the earliest indication of intercurrent infection. Maintenance of equipment is provided by most manufacturers but if a group of neurologists is supervising the care of several such patients it may be cost effective to employ technicians and hold a store of replacement machines.
Such domiciliary support should be provided and organised by regional centres with appropriate arrangements for funding the cost of the equipment and its maintenance and supervision. Domiciliary ventilatory support is well tolerated by patients and their families and can provide an acceptable and cost effective alternative to prolonged stay in hospital.
The management of other specific disabilities within the community requires individual assessment and treatment. The management of continence is one of the most important priorities in spinal cord disease and requires regular monitoring and review. Assessment of the person’s living environment, their mobility, and their manual dexterity are important criteria in determining best management. Some people whose movement is restricted are incontinent through an inability to reach the toilet in time, and in such cases help with mobility or adaptations to the home are required. Intermittent self catheterisation represents a major advance for patients, who in the past might have had to use an indwelling catheter with its attendant risks of infection. Intermittent self catheterisation may also be performed by a partner or a district nurse. Local continence services should be adequate to advise on and supervise the use of aids such as the male urinary incontinence sheath attached to a thigh bag, incontinence pads, and intermittent or long term urethral catheterisation.
Immobile patients are prone to develop pressure sores. Factors contributing to increased vulnerability include extensive paralysis preventing shifting of the body, impaired sensation, contractures and other deformities, impaired insight and concentration, incontinence, excessive sweating, muscle wasting, and general medical factors including pyrexia and infection. Management in the community must aim to prevent sores. The skin over pressure points should be inspected daily. The patient should shift position once or twice each hour if sitting and every two to three hours if bed bound. For those bed bound patients at high risk, appropriate beds will include foam overlays, flotation mattresses, or ripple mattresses. For those at very high risk low loss air beds or water beds may be required.
The psychological and emotional consequences of severe disability, in particular feelings of isolation, frustration, fear, anxiety and low self esteem will require specialist counselling. Depression should never be simply accepted as an inevitable consequence of disability but should be treated on its merits, if necessary by referral to a psychiatrist. The carers of people with severe cognitive disabilities and challenging behaviours require advice and support from local psychiatric services. Examples of such patients include those who have survived severe head injuries or those with advanced cerebral disease such as Alzheimer’s disease.
Other aspects of home care for neurological disorders
ENVIRONMENTAL CONTROL SYSTEMS
Environmental control systems are switching devices that allow a disabled person to control many aspects of the home environment.4 5 Access to the home, summoning emergency help, operating domestic appliances such as the telephone, video, and hi-fi, and switching electrical power for lighting and other appliances can all be controlled by suitable devices operated by a single unit. The system can be operated in various ways, from simple hand or foot switches to more complex chin controls, suck-puff controls, and even controls governed by eye movements. The increased independence which these systems provide allows the user to be at home confident in the knowledge that the home is secure and that help can be summoned if required. Carers are consequently free to leave home for periods and the burden of providing continuous care is relieved. Environmental control systems therefore have a major impact on the lives of many severely disabled people, not only in terms of enhanced independence and dignity, but also in maintaining the integrity of family life and reducing dependence on care services and institutional care. The next few years will see major developments in technology. However, considerable problems still exist concerning the appropriate choice and funding of such systems.
DISABLED LIVING CENTRES
These enable disabled people to look at and try out technical aids and equipment which may reduce their handicap and improve their independence.6 Professional help is always available at the centres. However, disabled people, at present, usually wait an unacceptably long time for both equipment and adaptations due to problems with funding and delays in assessment at home. This is frustrating for patients with stable disabilities and, for those with progressive disorders, the progression of the disease may render delayed adaptations or aids useless.
PATIENT SUPPORT GROUPS
Patient support groups may have a very valuable role in facilitating the care of patients in the community. For example the Motor Neurone Disease Association provides a web of individual district care workers who advise and encourage patients as well as recommending various techniques and aids to promote functional independence. Many patients value the opportunity to discuss progressive disease openly and honestly with an informed person other than members of their families.
Respite care is important to relieve stress on the carers. It should ideally be provided in a non-institutionalised environment. This form of care is, however, expensive and, in practice, most patients are admitted for a period of inpatient rehabilitation and reassessment of needs.
For patients with progressive disorders, it is important to establish links with hospices at an early stage so that they can provide the primary health care team with advice and support. The hospice may provide day centre and home care whereas the rehabilitation centre provides the facility for respite and terminal care. Home care can be maintained with the collaboration of district and Macmillan nurses.
The general practitioner is usually the first person to be consulted, particularly in an emergency. He or she has ongoing responsibility for care and is likely to have knowledge of the domestic, family, and social circumstances. However, a key worker can play an important part in coordinating the activities of the multidisciplinary rehabilitation team with the primary health care team.
The traditional model for longer term management of people with neurological disabilities has been based on hospital outpatients. This has proved unsatisfactory because there is very little continuity of care, time spent with the patient is limited, and there is little or no involvement from the multidisciplinary assessment team. Disease specific clinics (for example, for patients with motor neuron disease, multiple sclerosis, and epilepsy) are a more satisfactory model of care. They have the advantage of providing an expert multidisciplinary team familiar with the problems of that particular disease or disability. Appropriate information and counselling can be provided and self help groups will be involved.
Resource centres are a new and exciting development. These are based in the community, and may be a base for a disabled living centre as well as housing information services and access to professional advice from members of the rehabilitation team.
How well are we doing?
In a recent series of severely disabled people from Somerset Health Authority almost a third of patients had unmet needs for aids to allow independence in activities of daily living.7 This study indicated particular deficiencies in monitoring adults with severe physical disabilities whose sole regular contacts are health professionals. District Health Authorities and family health service authorities will need to consider how best to improve the assessment of needs of patients as they plan to implement care in the community.
Greenwood R, Barnes MP, McMillan TM, Ward CD, eds.Neurological rehabilitation. Edinburgh: Churchill Livingstone.
British Society of Rehabilitation Medicine. BSRM Working Party report on multiple sclerosis. London: BSRM, 1993.