26. Management of patients with dementia


In this series featuring information for patients and professionals taken from evidence-based guidelines, we reproduce the 'information for discussion with patients and carers' section from the 2006 SIGN guideline Management of patients with dementia.

Supportive information for patients and carers

The research literature does not provide a clear consensus regarding the type of information people with dementia and their carers need at different stages of their journey of care. There is a consensus that both people with dementia and their carers are entitled to receive relevant information.

There may be a difference between the objective problems observed by clinicians and the patients' and carers' subjective need for information. Information should not only include issues considered relevant by clinicians, but be tailored to the needs of patients and carers.

"Patients and carers should be offered information tailored to the patient's perceived needs." (Grade C)

"Good communication between healthcare professionals, patients and carers is essential." (√)

Disclosure of diagnosis

Most of the evidence regarding information sharing relates to the point of diagnosis and how diagnosis is disclosed to individuals and carers. Reasons to inform individuals tend to be based on respect for patient autonomy and the value of truth telling in familial and professional relationships.

Evidence for diagnostic disclosure is inconsistent, limited and at variance with guidance regarding disclosure, with the perspective of people with dementia being largely neglected. It was found to be more common for carers to be routinely given information than patients, regardless of who delivered the information.

When their views and their reaction to their diagnosis were sought, most people with dementia identified positive opportunities for future planning, understanding what was happening to them and developing coping strategies with, for example, memory aids or social supports.

"Healthcare professionals should be aware that many people with dementia can understand their diagnosis, receive information and be involved in decision making." (Grade C)

Practitioners involved in assessing and diagnosing dementia are responsible for what people know of their diagnosis,or whether they know their diagnosis at all. Diagnosis disclosure can lead to mixed reactions, such as shock, distress, ambivalence or confirmation of existing suspicions. Uncertain diagnosis leaves questions unanswered and late diagnosis was reported by a group of 20 carers as being of little benefit to the person with dementia.

"Healthcare professionals should be aware that some people with dementia may not wish to know their diagnosis." (Grade C)

Whilst people have the right not to know their diagnosis, inappropriate withholding of the diagnosis, was a source of distress for some. Formal permission to disclose the diagnosis to carers should be sought.

Arguments against disclosure often cite the lack of useful treatments and the uncertainty of diagnosis and prognosis. Disclosure to patients may also be considered unhelpful if cognitive deficits limit their ability to understand the meaning and implications of their diagnosis. A consensus that diagnosis disclosure is favoured appears to be emerging among professional organisations, although practice lags behind.

"Healthcare professionals should be aware that in some situations disclosure of a diagnosis of dementia may be inappropriate." (Grade D)

"The wishes of the person with dementia should be upheld at all times." (√)

"The diagnosis of dementia should be given by a healthcare professional skilled in communication or counselling." (√ )

"Where diagnosis is not disclosed there should be a clear record of the reasons." (√)

Information at other stages of the patient journey

Little evidence was identified regarding information sharing at any other time or for any other issue for patients. Further studies on the process and outcome of disclosure are needed. Research is required to determine a uniform understanding of the issues, although preferences for practice may be highly individual.

Information provision at other stages of the patient's journey of care is generally more focused on carer needs than that of the patient.

In decision making, people with mild dementia are more involved, largely in a collaborative role. Beyond that carers generally make final decisions.

"Patients and carers should be provided with information about the services and interventions available to them at all stages of the patient's journey of care." (√)

"Information should be offered to patients and carers in advance of the next stage of the illness." (√)

Methods of disseminating information which may be appropriate for people with dementia and their carers include:

  • written information
  • individual education programmes
  • group education programmes
  • counselling
  • telemedicine service
  • communication workshops
  • cognitive behaviour therapy (CBT)
  • stress management
  • combinations of the above.

Not everyone benefits from such interventions. Further studies are required to identify confounding factors so that practitioners can provide relevant information tailored to the needs of the person and their carer, to improve understanding and enable more informed decision making at all stages.

Box 1: Sources of further information for patients and carers
Alzheimer's Society
Gordon House, 10 Greencoat Place, London, SW1P 1PH
020 7306 0606
0845 300 0336 (Helpline, Monday-Friday, 8.30am - 6.30pm)
020 7306 0808
Alzheimer Scotland – Action on Dementia
22 Drumsheugh Gardens, Edinburgh, EH3 7RN
0131 243 1453 0808 808 3000 (Freephone helpline)
0131 243 1450
Mental Health Foundation
9th Floor, Sea Containers House, 20 Upper Ground, London, SE1 9QB
020 7803 1100
020 7803 1111
Carers UK
Ruth Pitten House, 20-25 Glasshouse Yard, London, EC1A HJT
020 7490 8818
0808 8008 7777 (CarersLine,Wednesday & Thursday, 10am-12pm & 2pm-4pm)
Drivers Medical Group, DVLA, Swansea, SA99 1TU
0870 600 0301 (Monday to Friday, 8.15am to 4.30pm)
0845 850 0095
Medical condition(s) can be notified by telephone, fax and email, quoting full name, date of birth and/or driver number (if known), and medical case number if available
Adapted from Management of patients with dementia (SIGN 86)


Guidelines in Practice, June 2006, Volume 9(6)
© 2006 MGP Ltd
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