| Information | Assessment |
| Services | Care plan |
| Reviews | Carers |
| Complaints | Sources of advice |
Caring for someone with dementia can be difficult, so it is important to get all the support that you both need in order to cope. Contact your local authority social services department, which has a duty to provide the services that the person you care for is assessed to need. Home care, meals on wheels and residential care are some of the services available.
If the person you care for seems confused or is behaving in a way that is unlike themselves persuade them to see their GP immediately and accompany them if possible. There are many treatable conditions or emotional reactions that can cause odd changes in behaviour.
If it becomes clear that they are not suffering from an easily treatable or temporary condition, contact the social services department of your local authority to find out what sort of help is available. You do not have to wait for a diagnosis of dementia before doing so. What matters is that the person needs support in order to cope.
Under the NHS and Community Care Act l990 a local authority social services department has a duty to carry out assessments for people it believes to be in need of services and to assess disabled people. If the assessment concludes there is a need for certain services, these must be provided. Such services may include aids and adaptations, meals on wheels, home care, sitting and respite schemes, day care and residential and nursing home care.
Social services departments work closely with other local agencies such as health and housing as well as local voluntary organisations to try and ensure that help from different sources is organised effectively and in a way that is both convenient and acceptable to the person needing care and their carers. Some services, such as community nursing, are usually arranged through the GP either directly or after discussion with social services.
Your local social services department must publish information on the kinds of services it provides. It must also provide information on who is eligible for an assessment, how to apply for an assessment and how to make representations and complaints. For general information, write, telephone or call in at your local social services department and ask for the appropriate leaflets (the address will be in the telephone book under the name of your local authority).
Social services will make an assessment of the person with dementia's needs in order to decide what help they should offer. The person with dementia's GP, a consultant or another professional may refer them to social services. Sometimes they may suggest that you make the contact, or you can do so on your own initiative. Whatever the case, make sure that all the information which you think is important has been passed on to social services and that you have understood exactly what will happen next.
On the basis of information from you, the GP or from others concerned, social services will decide whether there is a need to carry out an assessment. The NHS and Community Care Act 1990 states that disabled people must be assessed because of the requirements to do so under the Disabled Persons Act 1986. The definition of disability in the Mental Health Act 1983 includes mental disorders or disabilities of the mind. If a person is diagnosed as having dementia this will entitle them to an assessment under the Disabled Persons Act 1986. If you have difficulty in getting an assessment ask your GP or your local Alzheimer's Disease Society branch for support. The services a disabled person is entitled to be assessed for are specified in the Chronically Sick and Disabled Persons Act 1970. Disabled people can also be assessed for other services under the NHS and Community Care Act 1990. However a local authority is only obliged to provide the services that the person is assessed as being in need of under the Chronically Sick and Disabled Persons Act 1970.
An assessment will probably be carried out in the person with dementia's home as this gives the person carrying out the assessment a better understanding of how they are coping. If it is carried out elsewhere it should be in a place convenient to you and the person with dementia. If the person with dementia is in hospital and there are worries about how they will manage on their return home, they should receive an assessment before they are discharged. If an assessment has not been arranged ask for one. The ward sister will be able to tell you who to contact.
Depending on the circumstances, one or more people will take part in the assessment which may be spread over one or several visits. Usually one of the people carrying out the assessment will be from social services, probably a social worker.
The person carrying out the assessment should listen to you and the person with dementia to find out as much as possible about the situation and what the needs are. Both of you should explain any worries and put forward your points of view, which may differ from each other. You should express your preference for certain types of service and the way in which a service might be most conveniently provided. It may help to jot down any points you wish to discuss before the assessment.
Financial and legal arrangements
Social services can charge for services so questions will be asked about the person with dementia's financial circumstances to see how much they will be able to pay, if anything at all. Only the person receiving the services can be financially assessed. The procedures for charging and the amounts charged for a particular service will vary from area to area. Charges for services for a person with dementia who is living at home must be 'reasonable' for the person to pay. If the charge does not seem reasonable or the person with dementia is unable or unwilling to pay, you have the right to ask social services to reduce, or even waive, the charge. A service cannot be discontinued if you are unable to pay. If you need further advice contact an organisation like the Alzheimer's Disease Society.
If the person with dementia needs to move into permanent residential or nursing care the local authority must assess the person's income and savings according to national rules.
The person carrying out the assessment may decide immediately that a service can be provided, or they may require more time to decide whether the person who has been assessed needs help. They may discuss the situation with others such as the home care organiser or day centre manager or to ask other people to visit in order to get a fuller picture. If it is decided that a person requires any services, social services has to ensure these are provided.
After the assessment is complete and any relevant discussions have taken place, the person assessing should devise a care plan outlining what help is to be provided, when and by whom. Ask for a copy of the care plan if you are not given one.
As the person with dementia's situation changes it will need to be reviewed. You should be told whether social services will review their needs on a regular basis and, if so, how often and when, or whether it is up to you to get in touch with social services yourself. If there has been a change in either your own or the person's situation and you need more help or different kinds of services get in touch with social services at once, whether or not there is a regular review.
Your views should be consulted and your needs taken into account whenever the person you care for is assessed. The Carers (Recognition and Services) Act l995 gives carers the right to a separate assessment of their needs when the person they care for is being assessed or re-assessed. Some social services departments have carer support teams who specifically offer support to carers. There are also many voluntary organisations and groups who can offer advice and support.
Each local authority has a complaints procedure which you can use if you are not happy with any aspect of the services provided. You can use this procedure if you are told that the person you care for will not receive an assessment and you think they are entitled to one, if the services you need are not provided or are unsatisfactory. The local authority will explain to you how to use the complaints procedure. However, try to sort things out on a personal level first as there may have been a failure in communication or a misunderstanding. If you use the local authority complaints procedure and are dissatisfied with the results there are other avenues of complaint. However these are usually very complex so ask advice first.
Age Concern England produces fact sheets on a variety of subjects, including finding residential and nursing care, and paying for care services. For more information contact Age Concern England at Astral House, 1268 London Road, London SW16 4ER. Your local Age Concern group can offer you advice or tell you where to go. Their address will be in the telephone book.
Your local Alzheimer's Disease Society branch can give advice or suggest who you can contact, or contact the Alzheimer's Disease Society national office information service by letter or telephone.
They can put you in touch with your nearest carers group which may provide advice and information. You can write to the Carers National Association for advice on issues relating to caring at 20-25 Glasshouse Yard, London EClA 4JS. Or telephone the advice line: 0345 573 369 (weekdays: 10am-12 noon, 2pm-4pm). All calls are charged at the local rate.
Your local CAB can offer free and confidential information and advice or tell you where to go. Look in the telephone book for your nearest CAB or ask at your library. Check on opening hours as these vary.
They offer advice to people over 60 on a range of issues including community care. Write to Twyman House, l6 Bonny Street, London NWl 9PG. Telephone the advice line on 0845 300 7585 (weekdays l0.30am-4pm). All calls will be charged at the local rate.
They offer a national information service for older people on a wide range of topics including community care. Calls are free. Telephone 0800 650065 (weekdays l0am-4pm).
The Royal Association for Disability and Rehabilitation (RADAR) offers advice and information on issues relating to disability including community care. Write to l2 City Forum, 250 City Road, London EClV 8AF. Telephone 0l7l 250 3222.
We would like to thank the National Institute for Social Work and Age Concern England for their help in preparing this information sheet.
November 1997
Page Text supplied by The Alzheimer's Disease Society of Great Britain