Quality statement 2: Diagnosis
Referral to dementia specialist diagnostic services ensures that diagnosis is timely and accurate, and dementia subtypes, such as Alzheimer's disease and dementia with Lewy bodies, can be identified. It also means that people can access support and treatment sooner. The benefits of a timely diagnosis include the person and their family and carers knowing what to expect so that they can consider future mental capacity and make plans early (advance care planning).
Evidence of local referral criteria and pathways to ensure that people with suspected dementia are referred to a specialist dementia diagnostic service.
Data source: Local data collection, for example, local commissioning agreements and service specifications.
Proportion of people with dementia who have a record of attending a specialist dementia diagnostic service up to 12 months before entering on to the GP practice register.
Numerator – the number in the denominator who were referred to a specialist dementia diagnostic service up to 12 months before entering on to the GP practice register.
Denominator – the number of people with dementia on the GP practice register.
Data source: Local data collection. An indicator was piloted and shown to be feasible by the NICE indicator programme. See NICE indicator NM65.
Self-reported or carer-reported quality of life of people with dementia.
Data source: Local data collection, for example, a survey of people with dementia. The Dementia Quality of Life Measure (DEMQOL) is a patient-reported outcome measure to enable the assessment of health-related quality of life of people with dementia.
Service providers (general practices, secondary care services, memory clinics, tertiary referral clinics, neurology clinics and geriatric medicine clinics) ensure that systems are in place to investigate reversible causes of cognitive decline. Specialist dementia diagnostic services and referral pathways should be in place so that people with suspected dementia can be referred after reversible causes have been investigated.
Healthcare professionals (such as GPs, neurologists and geriatricians) investigate reversible causes of cognitive decline, such as delirium, depression, sensory impairment (such as sight or hearing loss) or cognitive impairment from medicines associated with increased anticholinergic burden. If dementia is still suspected, they discuss referral with the person with suspected dementia, and refer them to a specialist dementia diagnostic service if the person agrees.
Commissioners (clinical commissioning groups and NHS England) ensure that they commission services that have referral pathways to a specialist dementia diagnostic service for people with suspected dementia and no reversible causes of cognitive decline.
People with symptoms of dementia have checks to see if something else is causing their symptoms. If dementia is still suspected, they have a discussion with the doctor about referral and, if they agree to it, they are referred to a specialist service for tests to find out whether they have dementia and, if so, what type they have.
Family members and carers of people with suspected dementia are involved in checks to see if something else is causing the person's symptoms, and in discussions about referral as appropriate. Their involvement might be needed if, for example, the person with symptoms of dementia lacks mental capacity or needs support in identifying their symptoms.
Dementia: assessment, management and support for people living with dementia and their carers. NICE guideline NG97 (2018), recommendation 1.2.6
Dementia that is suspected after reversible causes of cognitive decline (including delirium, depression, sensory impairment [such as sight or hearing loss] or cognitive impairment from medicines associated with increased anticholinergic burden) have been investigated.
[NICE's guideline on dementia, recommendation 1.2.6]
A specialist dementia diagnostic service might be a memory clinic or community old age psychiatry service. A referral to a diagnostic service does not have to involve a clinic appointment. People can be seen in community settings (such as their home or a care home), or advice can be provided to the referrer without a formal appointment being made. The key is to ensure that dementia specialists are involved, both for advice on diagnosis and to ensure appropriate access to support and treatment after diagnosis. Specialists are those with the appropriate knowledge and skills, and include secondary care medical specialists (for example, psychiatrists, geriatricians and neurologists) and other healthcare professionals (for example, GPs, nurse consultants and advanced nurse practitioners) with specialist expertise in assessing and diagnosing dementia.
[NICE's guideline on dementia, recommendation 1.2.6 and terms used in this guideline]
People with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating. Healthcare professionals caring for people with dementia should establish the person's cognitive status, and whether they have any speech, language or other communication needs; they should also establish a person's current level of understanding and whether they would like a person important to them to be present when discussing symptoms and referral. All information provided should be accessible, as far as possible, to people with cognitive problems; people receiving information should have access to an interpreter or advocate if needed.
Recommendation 1.1.2 in the NICE guideline on dementia highlights that if needed, other ways of communicating (for example, visual aids or simplified text) should be used.