The right to know: sharing the diagnosis of dementia

Executive summary

Note: This report has sold out but may be downloaded (in full) in pdf format by using the link at the foot of the page.

This report is for interested professionals, people with dementia and their carers. It looks at the evidence on current practice, addresses whether people with dementia should be told their diagnosis, and recommends good practice in giving a diagnosis.

The current position

Current practice in other terminal illnesses is to tell patients their diagnosis and the prognosis. In dementia, the evidence is that practice is variable, but most people with dementia are probably not told, although legislation and guidance gives patients the right to information about what is wrong with them.

The situation of people with dementia is often seen as different, due to the effect of the illness on the person’s mental abilities. However, diagnosis is getting earlier, so that more people with dementia would be able to understand their diagnosis. Studies indicate that many might wish to be told.

The carer and family are almost always told of the person’s diagnosis, often without the person’s knowledge or consent, which may violate the person’s right to confidentiality.

The case against giving someone with dementia the diagnosis

• Adverse effect on the person with dementia - possible depression, suicide risk.
• The effect of the illness on the ability to understand, remember take decisions.
• Families’ and carers’ wish to spare the person with dementia distressing information.
• Medical professionals’ uncertainty about the reliability of diagnosis and feelings of helplessness.

The case for giving someone with dementia the diagnosis

• The right to be given medical information in order to maximise autonomy and choice in making informed decisions concerning the future.
• To relieve the anxiety of uncertainty; many people are already aware that something is wrong.
• To avoid paternalistic assumptions, as many people with dementia may cope with the news well.
• Early diagnosis means more people will be able to understand the diagnosis and make choices.
• To avoid a communication barrier between relatives and the person with dementia so that they can be included together in planning for the future.
• Medical professionals’ knowledge and feelings are changing due to improved diagnosis, more information and new and forthcoming treatments.

Recommendation

The benefits of giving the person with dementia the diagnosis, with support and information, mean it is to be recommended in most cases. However, the person with dementia also has a right not to know his or her diagnosis.

Should the family be told?

Most people with dementia want their family to know. However, where the person does not or cannot consent, there are complex issues. The family does not have a legal right to know the diagnosis. It is the responsibility of the doctor to balance the desire or need of the family or carers to know with the rights and best interests of the person with dementia. There may be conflicts of interest - financial or emotional, between the person with dementia and the family.

Recommendation

To respect the rights of the person with dementia, the diagnosis should normally only be given to the person’s family with his or her consent, except in exceptional cases. The person may need time to come to terms with the diagnosis and should be offered counselling.

Good practice in giving a diagnosis

The diagnosis should normally be given directly to the patient. However this may sometimes not be appropriate, depending on the capacity of the person to understand, and whether the person wishes to be told.

For people at an early stage in the illness, repeat information, try to engage the person in a therapeutic alliance, encourage sharing of the diagnosis with significant others and provide written information.

In later stages of the illness, the person with dementia may not be able to make informed choices. Decisions about informing the family may have to be made on behalf of the person with dementia. Efforts must be made to include the person with dementia as much as possible.

Key principles and guidelines for giving the diagnosis of dementia

• Choose a suitable setting with support during or afterwards from the family or carer where possible.
• Explore how much the person knows already and how much he or she wants to know.
• Determine who other than the patient is to be told
• Discuss the diagnosis and the future
• Explain what help is available
• Leave information and sources of support

Conclusion

People with dementia are entitled to autonomy and to the information and support they need to exercise their autonomy as much as possible. They also have a right to confidentiality, and the family or others should not be told the diagnosis without consent except in exceptional circumstances.

Both people with dementia and their families and carers need support after the diagnosis.

The benefit of early diagnosis needs to be more widely recognised; positive intervention can improve the quality of life of people with dementia and their families.

To view this information in portable document format (pdf) click on the link below:
The Right to Know: Sharing the Diagnosis of Dementia (pdf, 52 pages - 140 kb)

Large print and audio versions of Alzheimer Scotland information