How the GP can help

If you have dementia, or if you are worried about someone you know with dementia, it is wise to consult the GP as soon as possible about any health concerns. Treating even minor complaints can make a considerable difference to a person's well-being and their ability to cope. If you think that you may have dementia but have not been diagnosed, you may find Factsheet 426, Diagnosis and assessment, helpful.

GPs can offer a range of support, including:

• general advice on ways of preventing illness and keeping people fit and well
• medical advice and treatment
• referrals to specialist help and other services.

Visiting the doctor

People with dementia often find it helpful if someone they trust accompanies them to the surgery. A close friend or relative may be able to help explain the symptoms to the GP and remember afterwards what was said.

Later on, it makes even more sense for someone to accompany the person to provide support. It also means that everyone involved is clear about what is happening.

Tips:

• Before you go to the surgery, write down all the points you want to discuss. It can be difficult to remember everything you want to say during a consultation.
• Make a note of anything important the doctor says. For example, you might want to write down any medical terms that are used.
• If there is anything you do not understand, ask the doctor to explain in simpler language.
• If you come from a different background or culture from the GP, mention any relevant customs, attitudes or beliefs. This can help the GP in assessing an illness and in deciding on appropriate treatment and services.
• If you are accompanying someone with dementia, don't talk to the doctor over the person's head as though they weren't there. If you feel you need to talk to the doctor on your own, make a separate appointment.

Confidentiality

Sometimes people with dementia prefer to see their GP alone, or it may not be possible for anyone to accompany them. If this is the case, the person's carer or a family member may wish to talk to the GP afterwards. However, sometimes when a carer or relative contacts a GP with concerns about a person, the GP refuses to talk to them on the grounds that they will break patient confidentiality.

The General Medical Council has issued guidance (Confidentiality, 2009) that says that doctors should listen to the concerns of carers, relatives, and friends or neighbours because they could contain valuable information that may help their patient. The GP should make it clear that they may tell the patient about the conversation.

If the patient has capacity, the doctor should only disclose information about them in exceptional circumstances where the benefit to the public or an individual outweighs the public and patient's interest in keeping the information confidential.

The guidance states that if the person does not have the mental capacity to consent to the disclosure of their information, the doctor should assume that the person would want those closest to them to know about their condition, unless they have indicated otherwise.

If the person who lacks capacity objects to the disclosure of their information, the guidance states that the doctor can still share relevant information with carers, relatives or friends if they think it is important for the person's best interests. The GP may need to share some information with relatives, friends or carers in order to determine what is in the person's best interests

If a GP refuses to share information about someone who lacks the capacity to consent to the disclosure and you believe that this is not in their best interests, talk to the GP about the General Medical Council's guidance. If the situation is not resolved, ask the surgery for a copy of the complaints procedure and information about how you can access an Independent Complaints Advocacy Service (ICAS) to support you in making a complaint. 

When to see the GP

Someone who has dementia should see their GP as soon as they feel unwell or there are concerns about their health. They should also see their GP if they suddenly become more confused or agitated, or if there are any worrying changes in their behaviour, as this could be a sign that they are ill. Many physical conditions, ranging from chest and urinary infections to infected leg ulcers and constipation, can cause additional confusion and distress. These conditions usually respond to treatment.

The person should also see the GP if they feel miserable, anxious or restless, if there have been marked changes in their sleeping or eating patterns, or if they become very withdrawn. Any of these can be a sign of depression, which is particularly common during the early stages of dementia. The GP may consider prescribing antidepressant medication, counselling or other forms of support. (See Factsheet 444, Depression.)

If at any time you feel that a specialist opinion is needed, ask the GP for a referral. The GP is usually the only person who can refer you to a specialist.

Services

The GP can also refer patients to other health professionals, such as community nurses, and may suggest helpful services. For more information on help and support available from the NHS, see Factsheet 454, How health professionals can help.

Advice about other services, such as home care, meals on wheels, short home visits to provide respite for carers, and residential care, is available through your local council's older people's services. If you have not already done so, ask for an assessment of your needs by social services. The GP can refer you, or you can contact social services direct. Their number will be in the local telephone directory under the name of your local council. For more information, see Factsheet 418, Community care assessment.

Advice on medication

Ask the GP about any prescribed medication. You need to know what each drug is for, how it should be taken, what the effects are likely to be, and whether there are any side-effects to watch out for.

If any drug does appear to be having a side-effect, contact the GP straight away. The drug may need changing or the dose altering. Make sure the doctor knows about any other medicines that are being taken, whether these are prescribed or over-the-counter, since the interaction of certain drugs can produce unpleasant, and sometimes dangerous, effects. Also find out whether it is safe to drink any alcohol while taking the medication.

Generally speaking, the fewer drugs prescribed for people with dementia the better. Some drugs may make it harder to cope by causing confusion or other problems. It is also the case that older people usually need lower doses of drugs than younger people.

Drugs for dementia

Drugs are now available that can sometimes temporarily slow down the progression of symptoms of Alzheimer's disease. The first prescription must be given by a specialist, although subsequent prescriptions can be issued by the GP. These drugs are only prescribed to people with a diagnosis of Alzheimer's disease who are assessed as being likely to benefit from them.

Anyone who has been diagnosed with Alzheimer's disease, or who is suspected of having it, should be referred to a specialist as soon as possible so that they can be assessed to see if medication might help. For more details, see Factsheet 407, Drug treatments for Alzheimer's disease.

Changing doctors

If your GP seems uninterested, unhelpful or unsympathetic, there may be another doctor in the practice who you could see instead. Make some tactful enquiries at reception.

If you are very dissatisfied with the GP and there is no one else in the practice you would prefer, you can arrange to change doctors, providing another doctor is willing to take you on. It may be quite difficult to change doctors in some areas. Your local primary care trust can advise you (your GP surgery or Citizens Advice Bureau will have the address) or telephone NHS Direct (see 'Useful organisations' for details).

Carers' needs

If you are caring for someone with dementia, you may be under considerable physical and emotional stress. You must be careful not to neglect your own health and well-being. You should see your own GP on a regular basis to check up on your health and discuss any problems you may be experiencing (see Factsheet 523, Carers: looking after yourself).

For details of Alzheimer's Society services in your area, visit alzheimers.org.uk/localinfo
For information about a wide range of dementia-related topics, visit alzheimers.org.uk/factsheets

Useful organisations

Citizens Advice Bureau (CAB)

Various locations
W www.citizensadvice.org.uk
www.adviceguide.org.uk

Your local CAB can provide information and advice in confidence or point you in the right direction. To find your nearest CAB look in the phone book, ask at your local library or look on the citizens advice website (above). Opening times vary.

NHS Direct

T 0845 4647 (24 hour helpline)
E use form on website (below)
W www.nhsdirect.nhs.uk

Provides information and advice about health, illness and health services.

Factsheet 425

Last updated: September 2010
Last reviewed: August 2010

Reviewed by: Steve Iliffe, Professor of Primary Care for Older People, Associate Director, DeNDRoN National Co-ordinating Centre, Department of Primary Care and Population Sciences, University College London