Who can help?
If you are caring for someone with dementia, you are likely to need a good deal of practical support. The sufferer will find it increasingly hard to cope with everyday life, and you will not be able to provide all the assistance that they need without help. Unfortunately, it can sometimes be difficult to find information on the different types of help that are available. You may need to be persistent in your enquiries. Your GP is likely to be a
good source of information, but you should also talk to other carers. In this chapter, we discuss the kind of help that you will need, whether from family or from outside sources, such as the health service, local authority social services department and voluntary organisations.
FAMILY AND FRIENDS
Families are a very important source of practical help and support. Sometimes it is possible to share the responsibility of caring. A brother and sister, for example, might take it in turns to look after their father, or one member of the family may make a regular commitment to look after the sufferer while the carer has a break.
If, for various reasons, it is not possible to share the burden of care with other members of the family, friends may well be happy to offer practical help as well as a sympathetic ear. They may be able to sit with the sufferer while the carer goes out.
YOUR GP
Many other sources of practical support can be organised through your doctor. Health visitors, district nurses and community psychiatric nurses are usually part of the primary health care team attached to the GP’s surgery. These nurses understand the practical difficulties of caring for a demented person at home. They can advise you whether any changes in health need to be reported to your doctor, and can teach you how best to overcome some of the practical problems of caring, such as bathing, eating problems, difficult behaviour, incontinence and giving medicines.
The district nurse can also provide help if the sufferer is frail and bedbound, or needs a great deal of assistance with bathing, dressing or putting to bed.
OCCUPATIONAL THERAPIST
Your GP or hospital specialist can probably make arrangements for an occupational therapist to visit you. They can advise on and arrange for aids and adaptations at home; for example, hand rails, raised lavatory seats, bath seats, specially adapted cutlery and feeding aids, and gadgets to make dressing easier. They will also be able to advise you on eligibility for financial help to make major adaptations, such as installing a shower or wheelchair ramps.
HELP IN THE HOME
You can get help and support in the home from your local authority, voluntary organisations and private agencies.
Local authority social services departments are responsible for assessing what help people need to enable them to continue living at home. To arrange a care assessment, you can contact social services directly or your GP or hospital specialist can arrange it. The care assessment is usually carried out in the home of the person being assessed because this gives a clearer picture of how he or she is coping and allows the person or carer to describe in detail what help is needed.
After the assessment, the social services department will produce a care plan explaining what services can be provided. Services available often include help with personal care such as bathing or getting up in the morning, shopping, cleaning, meals on wheels, equipment and adaptations. The social services department will either provide their own services or arrange for services to be provided by voluntary organisations and private agencies. A ‘care package’ could provide services from several organisations. For example, social services might provide grab rails for the bathroom, the WRVS might provide meals on wheels, and a private care agency might provide help with bathing. Social services may also agree to give you cash – known as Direct Payments – so that you can arrange and pay for services yourself.
Local authorities can charge for the services that they arrange, although the procedures for charging and the amounts charged vary across the UK. Your local authority should provide you with information on their charging policy.
FINANCIAL HELP
Caring for someone with dementia can be costly so it is important to ensure that you are receiving all the financial help that’s available. There are a number of benefits and allowances to which you and the sufferer may be entitled, such as the Attendance Allowance, Carer’s Allowance and Disability Living Allowance. People with dementia may qualify for a discount on the Council Tax. The Citizens Advice Bureau or a social worker will be able to advise you on your eligibility and how to go about claiming these benefits. Some charities, such as the Alzheimer’s Society, may also be able to offer one-off grants to carers for specific purposes, if help cannot be obtained from other sources.
SHORT-TERM RELIEF
One very important way to obtain help with the care of a demented person is to arrange for them to be cared for away from home for part of each day. This provides short-term relief for the main caregiver and may enable you to continue working part-time if you want to. Your local social services department may be the best source of information on what is available in your area. Day centres, run by both local authorities and voluntary organisations, can provide recreational and social activities, lunch, and transport to and from home. Some day centres cater specifically for people with dementia. Psycho-geriatric day hospitals, run by the health service, offer medical assessment, social activities and occupational therapy, but places are limited and usually short term.
Although day centres provide the most common form of relief care, it may also be possible to arrange for someone to come into your home to care for the sufferer. Some voluntary agencies provide sitters for a few hours. Alternatively, local carers’ support groups may arrange sitting services, with members taking it in turns, so everyone has the opportunity for time off. Private agencies can supply a care attendant or a nurse to look after the sufferer for longer periods, but this form of care is expensive.
If you want to go away on holiday or need to have a longer break from the burdens of caring, it may be possible to arrange residential care in a home or hospital. Some hospitals have a few beds reserved for respite care. This is care provided specifically to allow the carer a break. Social service departments run residential homes for frail elderly people, which may be able to offer relief care for short periods.
Alternatively, you could use one of many private nursing and residential homes. Your GP or local social services office should be able to advise you what is available in your area.
All carers who provide a substantial amount of care on a regular basis are entitled to have their needs assessed by their local social services department. This assessment may enable you to obtain respite care to give you a break and help with the responsibilities of caring.
