Being diagnosed with dementia, or learning that someone close to you has dementia, can be an overwhelming experience that requires support and preparation. Friends and family may be keen to discuss the patient’s condition with their doctor but the issue of doctor-patient confidentiality can limit the amount of information available to them. Planning ahead and understanding the balance between a patient’s right to privacy and the need to act in their best interests when they are less able to make decisions for themselves can help people through this difficult time.
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Appreciate that everyone has a right to confidentiality. All patients, including those with dementia, have a right to keep medical information between themselves and their doctor under the UK’s Data Protection Act. Although this can be frustrating for family and friends, a patient in the early stages of dementia has the right for their doctor not to share personal information with others unless they have given their consent.
Understand that there are times when it can be helpful for family or carers to contact a patient’s doctor. If people who are close to a person with dementia are concerned for their wellbeing, it can be helpful to provide their doctor with information about the patient or discuss their concerns. This is particularly applicable to patients in the more advanced stages of the condition. The doctor can take the information or concerns on board and consider whether it can help them to care for a patient, even if they are not able to give the family member or carer any information about the patient .Patients can also bring family or carers to appointments with them, helping to provide doctors with information that they may have forgotten or helping the patient to remember what the doctor has told them.
Understand that there are exceptional situations where a doctor may need to share information about a patient with others. The National Institute for Health and Clinical Excellence suggests that circumstances when a doctor may need to share information about a patient with dementia include informing the Driver and Vehicle Licensing Agency when they feel that a person is unfit to drive safely without risking harm to themself or other members of the public.
Plan ahead and be prepared. As the relationship between doctor-patient confidentiality and dementia is such a complex one, the best course of action is to plan ahead and be aware of the patient’s wishes as soon as the condition is diagnosed. Patients can express their wishes and appoint one of more people to make decisions regarding their future care while they still have the mental capacity to do so. The legal right for others to decide what is best for them is called power of attorney and is a good way to ensure that family and carers are able to ensure that a patient is cared for in the way that they would wish to be.
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