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If you are caring for someone with dementia you will need all the help you can get. Find out who can offer support and what services are available while the dementia is still at an early stage so that you know where to turn when the need arises.
Services vary from place to place and they also vary in the way they are organised. You will want to find out what services are available in your particular area and how they are arranged.
Don't feel guilty about asking for services. Support at the right time will enable you to care more effectively and will help to improve your quality of life and that of the person with dementia.
Many services are arranged through social services. It is important, therefore, to contact social services if you are worried that the person has dementia and it is certainly vital to let them know once dementia has been diagnosed. (Your local social services department will be listed in the phone book under the name of your local authority.)
Social services will assess the needs of the person with dementia to see what help they should offer. As a carer you also have a right to a separate assessment of your needs. As the situation changes your needs should be reassessed. Social services can charge for some services so questions will be asked about the person's financial situation to see whether or not they should be asked to contribute to the cost of a service. Procedures for charging and the amounts charged can vary from are area to area.
Click for more information about assessment for community care
Social services will work with other local agencies to ensure that help from different sources is organised effectively.
Some services such as community nursing are arranged through the health service. Ask the GP or consultant for information.
Local voluntary organisations may run day centres, lunch clubs, sitting schemes or support groups or they may loan equipment, offer advice and information and help with transport.
Some services are available privately but if you do decide to use someone privately do check first on fees and make sure they are appropriately qualified.
Your local library, citizens advice bureau, community health council or council for voluntary service (all listed in the telephone directory) can provide information on services including information on local voluntary organisations and self-help groups, as can social services, professionals and other carers.
If you are from an ethnic minority your local community organisation or place of worship may also be helpful in pointing you in the right direction and in organising interpreting services. Finally, local branches or groups such as those run by the Alzheimer's Disease Society, MIND or Age Concern will have information about services. Other useful organisations include Carers National Association and the Samaritans.
Although there is no cure for most forms of dementia, the sooner it is diagnosed the sooner you will be able to think about the kinds of support and services you need.
If someone appears confused or forgetful contact the GP as soon as possible. Dementia is usually diagnosed by eliminating other possible causes of confusion, by talking to the person and the carer and by observing their behaviour. The GP may refer the person to a consultant for help in reaching a diagnosis or because they can offer access to certain services. If the GP does not suggest a referral and you feel it is important you should press for one.
The GP may be able to refer the person with dementia to a number of useful community health services. Ask what is available. The GP may offer to see you and the person on a regular basis or you could make an appointment whenever there are problems or decisions you wish to discuss.
The person may be referred to a consultant in one of a number of specialities. Which specialty may depend on their age, their symptoms and the way services are organised in your area.
Depending on the situation the consultant may simply refer the person back to the GP with a diagnosis or they may offer access to a range of services.
A chartered clinical psychologist has a degree in psychology and further training in the health field. They may assess the person's memory, learning ability and other skills and provide appropriate support.
Occupational therapists advise on aids and adaptations and on ways of helping someone maintain their independence for as long as possible. Some OTs work for the health service and some for social services. Ask your GP, hospital consultant or social service services if you think an OT could be helpful. There are some OTs in private practice. Those who are professionally qualified will have the initials DipCOT and/or SROT after their name.
A social worker may be involved in assessing needs for services such as help at home, meals on wheels or day, respite or residential and nursing care, and in planning and co-ordinating services. They also advise on services and benefits, and can offer's support if you need to talk things through.
A speech and language therapist may be able to advise you on ways to communicate more effectively with the person and on problems such as difficulties in swallowing. Your GP may be able to refer you or you may be able to contact your local speech and language therapy department directly. Your community health council (address in the telephone book) can advise.
Community psychiatric nurses are mental health nurses who support people with mental health problems and their families in the community. They can carry out assessments of people in their own homes and advise on behavioural problems and ways of caring. They do not normally carry out physical nursing tasks. Some community psychiatric nurses work from GP surgeries or community mental health centres. Others are based at the local hospital. You may need a referral from your GP or consultant or you may be able to contact a CPN direct. Your community health council (address in the telephone book) can advise.
District nurses are nurses who have had extra training in nursing people at home. They work with other community nurses and nursing auxiliaries as part of a team. They can visit to assess the situation and can give practical nursing care and advise on aids and equipment. Visits from a district nurse can be arranged through the GP or you can speak to the district nurse direct at the doctor's surgery or health centre.
Health visitors are nurses who have had further training in order to be able to advise people in the community on health care and to promote their health and well-being. They can advise on benefits, provide information on services, suggest ways of keeping the person fit and offer support when you are feeling stressed. They can also help you press for appropriate services and may initiate services such as carers groups themselves when they identify a need. Health visitors generally work alongside GPs. Your GP or practice manager at the surgery should be able to tell you how to contact your health visitor.
Practice nurses work with GPs and other nurses and carry out a range of activities such as changing dressings, giving injections, advising on aids and equipment, especially incontinence aids, and advising on local services. Most GP surgeries have practice nurses. You can contact them directly at the surgery.
Physiotherapists can advise on suitable exercise for people at all stages of dementia and on safe ways of supporting someone with mobility problems to move. Your GP can refer you to a hospital physiotherapy department or you could ask to speak to a physiotherapist if the person attends a hospital or day hospital. Home visits can sometimes be arranged. Some physiotherapists are in private practice. If they are professionally qualified they will have the letters MCSP and/or SRP after their name.
Care of the feet is very important in maintaining mobility. You can ask the GP for a referral or contact the district chiropodist direct. The GP surgery should have the address. It may be possible to arrange for a home visit or for transport to the chiropodist.
Chiropody services are available free through the health service for women over 60 and men over 65. If you decide to see a chiropodist privately check first on fees and make sure they are state registered. State registered chiropodists have been trained for three years and have the letters SRCh and/or MChS after their name.
Poor vision or hearing or aching teeth or gums will cause distress and add to the person's confusion.
If you suspect that the person has a hearing difficulty ask your GP to refer them to the nearest NHS hearing centre. Audiologists will be able to test their hearing and fit a hearing aid if appropriate. If the person already has a hearing aid this should be regularly checked. The hearing test and the equipment are free on the NHS.
Professional dental advice should be obtained as soon as you realise that the person has dementia. Any major treatment needed should be carried out as early as possible as it may become more difficult later on. It is important to try and find someone the person trusts who will continue to provide treatment as the dementia progresses and who is prepared to visit the person at home or in residential or nursing care.
The dentist should advise you on the best way to care for the person's teeth or dentures and to check that their mouth is in a healthy condition. You can find an NHS dentist through your health authority (address in the telephone book). Otherwise you can contact the community dental service which caters for people with disabilities and people who need treatment at home. NHS home visits are free but the normal charges for treatment may apply, depending on income. If you wish to use a dentist privately check first on fees for treatment and for home visits.
Poor sight can add to confusion. The person's sight should be checked regularly by an optometrist who will also examine their eyes for glaucoma, cataract and other medical conditions. If the person does not have an optometrist ask your GP for a recommendation or phone around to find someone who seems sympathetic and who understands what examining someone with dementia may involve. Check to make sure the person will be given a comprehensive examination and ask about fees. They may be entitled to a free examination. Some optometrists carry out home visits.
Care attendant schemes attempt to meet the needs of carers and those cared for in a more flexible way and bridge the gaps left by other services. The care attendant might sit and chat with person or take them out, they may help them wash and dress or do light tasks around the home. Care attendants can visit regularly, often outside normal working hours. They are trained and paid and users may be expected to contribute towards the cost. Care attendant schemes may be run by health or local authorities or by voluntary organisations.
Ask social services whether there is a scheme in your area.
Most areas have a continence adviser who can advise on problems with incontinence. They can also give information on useful aids ranging from commodes to incontinence pads. Your GP may refer you or you can get in touch direct. To find the address of your local continence adviser write to the Continence Foundation at 2 Doughty Street, London WCl 2PH or telephone the national helpline on 0l9l 2l3 0050 between 9am and 6pm weekdays.
The environmental health department is usually responsible for the collection and disposal of soiled pads. Contact them through your local authority or ask the health visitor or district nurse.
Assistance from a home help, sometimes known as a home care, domiciliary care or community care assistant or aide, can make all the difference. They can offer practical help with tasks such as light housework, shopping and cooking. They can also offer more personal care such as getting the person up and dressed and supervising their meals. Home care is arranged through social services. Most areas will make some charge for the service, depending on income.
It is always better to try and deal informally with any complaints if you can. However, if you cannot get satisfaction there are more formal procedures you can pursue. Seek advice first from social services, your community health council or a citizens advice bureau.
November 1997
Page Text supplied by The Alzheimer's Disease Society of Great Britain