National Service Framework (NSF) for Older People in Wales:
supplementary guidance on developing services for assessment and diagnosis of memory loss associated with possible dementia
Author: Sian Price - NPHS vulnerable adults team
Date: 30/11/ 07 / Version: 4
Status: Approved
Intended Audience: Welsh Assembly Government
Purpose and Summary of Document:
This document has been produced by the National Public Health Service for Wales (NPHS) vulnerable adults team to assist Welsh Assembly Government in producing supplementary guidance to support the National Service Framework (NSF) for Older People in Wales. The paper sets out the role and good practice requirements, of memory assessment services as advocated within the NSF.
Publication/Distribution:
· The document will be distributed to Welsh Assembly Government and be placed on the NPHS Vulnerable Adults Team website
Contents
2 / Approaches to service delivery / 3
2.1 / Overview / 3
2.2 / Memory clinics / 4
3 / Location and staffing of a memory assessment service / 5
3.1 / Service location / 5
3.2 / Staffing / 5
4 / Client group / 6
5 / Specialist memory assessment / 6
5.1 / Purpose / 6
5.2 / Assessment process / 7
5.2.1 / Patient history / 7
5.2.2 / Functional and lifestyle assessment / 7
5.2.3 / Physical examination / 7
5.2.4 / Neuroimaging / 8
5.2.5 / Other investigations / 8
6 / Care after diagnosis / 8
7 / Mental Capacity Act / 9
8 / References / 10
© 2007. National Public Health Service for Wales
Background
Older people, their families and health professionals may perceive mental health problems, such as memory loss, as an inevitable consequence of ageing and not something that can be treated or managed. The National Service Framework (NSF)1 for Older People in Wales addresses mental health in older people (and includes younger adults with dementia). The standard states;
Older people who have a high risk of developing mental health problems and others with related diagnosis have access to primary prevention and integrated services to ensure timely and appropriate assessment, diagnosis, treatment and support for them and their carers.
For memory loss the NSF outcome identifies the following requirement:
‘Prompt access to a comprehensive range of effective and responsive mental health services for older people when required’ and the availability of and access to ‘services for (older) people with a cognitive impairment (memory clinics)’ will be measured.
1. Purpose of this paper
The NSF acknowledges the importance of early identification of people with dementia. This paper has been produced as supplementary guidance to support its implementation. The paper sets out the role, and good practice requirements, of memory assessment services as advocated within the NSF. This guidance is intended to support health care commissioners and providers in implementing the NSF.
This guidance does not address the management of dementia or other causes of memory loss. The management of dementia is comprehensively addressed in recently published National Clinical Practice Guideline2 (NICE guidance).
2. Approaches to service delivery
2.1. Overview
Some of the initial assessment of individuals with memory impairment may be undertaken in primary care, for example completion of the Mini Mental State examination and routine blood tests, but referral to a specialist memory service is the most appropriate method of ensuring that the extent and probable causes of memory loss and causes of dementia are identified. Specialist assessment may be provided by a stand alone service with this specific function or as part of services provided by a community mental health team (CMHT) for older people.
In order to facilitate access the model developed will need to take into account local geography, demography and existing service provision. There should be close working links with other relevant services, especially care of the elderly, old age psychiatry and rehabilitation.
A number of models for delivering specialist memory assessment are currently in use. These include;
· A specialist, assessment and diagnostic team who provide interventions and follow up if indicated
· A service provided as an integral part of the Older Persons CMHT
· A specialist, stand alone service providing assessment and diagnosis without being directly responsible for interventions and follow up. This model is dependant on the development and implementation of clearly agreed referral routes and protocols with other services.
A dedicated memory clinic is one example of a service model providing specialist memory assessment.
2.2. Memory clinics
The first memory clinics in the UK were set up in the 1980s. They are widely seen as a useful instrument for identifying, investigating and treating memory disorders, including dementia. They are provided in a variety of settings (for example psychiatry, neurology, geriatric medicine, and primary care) with the operational policy of each clinic being determined by its setting. (Memory clinics not associated with mental health services are seen by some as avoiding the stigma that may be attached to such services).
Their overarching purpose is to facilitate early referral of patients. There is some evidence that suggests that where memory clinics are available patients with dementia are seen at least 2 years earlier in the course of their disease3.
The benefits of memory clinics for patients and families are considered to be4;
· Early identification and intervention
· Specialist assessment and robust diagnosis, including non-dementia illness
· The effective targeting, monitoring (and cessation where appropriate) of anti-dementia drugs
· Education and support for patients and carers
· Anxiety management
· Advice on memory aids and memory training
· Access to research studies
The benefits for service providers have been described as4;
· Encouragement of earlier referral and development of awareness of dementia in primary care
· Standardised assessment and diagnosis within a multidisciplinary setting
· Efficient targeting and monitoring of medication
· Facilitation of audit and evaluation of services
· A response to the increasing demand for expert diagnosis and treatment
· A focus on research activity
3. Location and staffing of a memory assessment service
3.1. Service location
The location of specialist memory services and the provision of dedicated clinics or sessions should be appropriate to local need and circumstances. There will inevitably be differences in the delivery of the service between rural and more urban communities.
Clinics could be located or sessions delivered in5;
· General hospitals
· Community hospitals
· Primary care facilities
· CMHT bases
· Day hospitals
The clinic/session location will need to provide accommodation to allow several clinicians from different disciplines to undertake assessments in privacy and a room big enough to allow team members to discuss their findings. It may take between 1 and 1 ½ hours to assess each patient, reach a diagnosis and agree initial management6.
3.2. Staffing
Staffing of the memory assessment service will depend on the particular approach and model adopted. The service will need to be lead by a clinician with specialist knowledge, skills and experience in this area. This might be a psychiatrist, physician or neurologist5.
Ideally in all complex cases a cognitive assessment would be undertaken by a clinical psychologist, However, other members of the multidisciplinary team with appropriate training and supervision (e.g. psychology technician, specialist nurse, speech and language therapist, occupational therapist) can undertake this role in straightforward assessments.
Specialist nurses (with experience of psychosocial interventions) to support patients and carers in the clinic and by home visits in the period following diagnosis and disclosure should be part of the team.
(Whatever model /staffing mix is provided there is a need to ensure that clear care pathways are established to ensure appropriate referral on and continuity of care Some users of memory assessment services will inevitably require formal intervention from mental health services, often at a late stage in their illness. Where assessment services are not integrated with mental health services or there are not established pathways for referral that ensure continuity of care, problems may occur).
4. Client group
Clients who will need a comprehensive assessment of apparent memory loss will usually be;
· Individuals with suspected dementia
· Those with mild cognitive impairment of any cause, e.g. organic disease or alcohol misuse
· Those with significant mood related problems presenting as memory impairment
· Rarely the ‘worried well’, who appear not to have quite as good as memory as their peers and are anxious they are have dementia, and have repeatedly failed to be reassured by initial cognitive assessment .in primary care.
5. Specialist memory assessment
5.1. Purpose
The purpose of specialist memory assessment is to4, 5;
· Identify individuals with mild cognitive impairment and dementia at an early stage of the disease
· Provide direct advice, information and support to the patient and their family/carer and refer them to other sources of advice/information/support
· Provide advice on management and support to the referrer
· Exceptionally to reassure the ‘worried well’ who do not have dementia but remain exceptionally anxious
In addition memory clinics will usually4, 5;
· Initiate and monitor pharmacological treatment
· Provide psychosocial interventions
· Follow up and review those with dementia
· Ensure timely referral to other specialist health and social services as needed
· Promote the involvement of patients and their family/carers in appropriate clinical research.
5.2. Assessment process
Bayer and Reban4 recommend a comprehensive memory assessment which is summarised below. The recently published NICE document also contains guidance on the diagnosis and assessment of dementia2.
5.2.1. Patient history
Information should be sought from the patient and another reliable informant, ideally a close relative or friend. The following elements should be included;
· Presenting symptoms
· Other symptoms of organic brain disturbance
· Psychiatric/behavioural symptoms
· Ability to carry out day to day activities
· Past and present medical status
· Current medication
· Family history
· Education and occupational history
· Past and present alcohol intake
· Smoking habit
· Previous personality and coping ability (and any recent change)
· Social background.
5.2.2. Functional and lifestyle assessment
The following domains should be covered;
· Cognitive assessment, using a standardised test schedule (e.g. Mini-mental State Examination, Addenbrooke’s Cognitive Assessment) and supplemented with more detailed neuropsychological testing as needed.
· Neuropsychiatric assessment. Psychiatric problems such as anxiety and depression can interfere with cognitive function and may be confused with dementia. In addition people with dementia may also have depression.
· Activities of daily living
· Quality of life, global assessment and dementia staging
· Assessment of carer well-being.
5.2.3. Physical examination
· This may help to clarify the cause of the illness, identify its physical consequences and identify coexisting morbidities. Medical examination should focus on the cardio respiratory system, central nervous system, gait and vision and hearing.
5.2.4. Neuroimaging
· Where clinically indicated this may contribute to differential diagnosis and provide prognostic information. MRI is preferable, but CT scanning could be used.
5.2.5. Other investigations
· Routine blood tests (haematology, electrolytes, calcium, glucose, renal and liver function, thyroid function and serum vitamin B12 and folate levels). These could be done in primary care prior to referral.
· Chest X-ray, ECG and midstream urine test as determined by presentation.
· For younger people with dementia, those with atypical presentations or evidence of systemic illness a more extensive range of investigations (e.g. EEG, syphilis serology, cerebrospinal fluid etc) may be indicated.
6. Care after diagnosis
Opinions on the appropriateness of disclosure of a diagnosis of dementia vary. Generally it is good practice to ask people who are being assessed for possible dementia whether they wish to know the diagnosis and with whom it should be shared. The following are situations when disclosure of diagnosis might be considered inappropriate4;
· When dementia is severe and the person is unlikely to understand the diagnosis
· When the patient is severely depressed
· When the patient clearly states they do not wish to know.
When disclosing the diagnosis the following recommendations have been made4;
· Communication about the diagnosis should normally take place in a joint meeting with the patient and their family (with the patient’s consent)
· Simple language should be used and jargon avoided
· Using a graded approach allows the information given to be matched with what the patient wants to know
· Sufficient time should be available to explain and answer questions
· The patient and their families understanding should be assessed
· Arranging follow up allows information provided to be reinforced, misunderstandings clarified and outstanding questions answered
· Use of the term ‘Alzheimer’s Disease’ (or other appropriate medical diagnosis) rather than just the term dementia helps to ensure understanding of both these terms
· Conveying the feeling that ‘nothing more can be done’ should be avoided. Information about available therapies (not just drugs) should be given
· The patient should be given information about the possibility of taking decisions about their future.
The patient and their family/carer should be given face-to-face advice and information on interventions, prognosis and the sources of help and support available to them. This may be an appropriate role for a specialist nurse.
Verbal information should be backed up by written information and recommendations for further reading.
7. Mental Capacity Act 2005
The implications of the Mental Capacity Act on services such as this have yet to be fully established7. NHS Trusts will need to ensure that all their staff are trained to work within the requirements of the Act and within Trust policies.
8. References
1. Welsh Assembly Government. National service framework for older people in Wales. Cardiff: WAG; 2006.
2. National Institute for Health and Clinical Excellence Dementia: supporting people with dementia and their carers in health and social care. London: NIHCE; 2006. Available from http://www.nice.org.uk/guidance/index.jsp?action=byID&r=true&o=10998 [Accessed 22nd Nov 2007]