Service specification for dementia: memory
service for early diagnosis and intervention
DH INFORMATION READER BOX
Policy
HR / Workforce
Management
Planning /
Performance
Clinical
Estates
Commissioning
IM & T
Finance
Social Care / Partnership Working
Document Purpose
Best Practice Guidance
Gateway Reference
16035
Title
Dementia Commissioning Pack
Author
DH
Publication Date
21 Jul 2011
Target Audience
PCT CEs, SHA CEs, Local Authority CEs, Directors of Adult SSs, GPs
Circulation List
#VALUE!
Description
Commissioning Packs are tools to help commissioners improve the quality of
services and minimise unwarranted variation in service delivery. Each Pack
provides a tailored set of guidance, templates, tools and information to assist
commissioners in commissioning services from existing providers or for use in
new procurements.
Cross Ref
Superseded Docs
Action Required
N/A
N/A
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Timing
N/A
Contact Details
Gill Ayling
Quarry House
Leeds
West Yorkshire
LS2 7UE
0113 25 46359
www.dh.gov.uk
For Recipient's Use
Dementia Commissioning Pack
Handbook
Commissioning Framework & Assessment Tool
2. Care at home / care home
3. Care in hospital
5. Patient
information
4. Cost / benefit tool
3. Specification
2. Action Plan /
Inserts
1. Case for change
1. Early diagnosis
Procurement templates and guidance
4. Antipsychotic medication
Contents
A.
B.
C.
D.
User note
Key service outcomes
Purpose of the service
B.1 National and local context
B.2 Aims and objectives
Scope
C.1 Patients
C.2 Target groups
C.3 Equity of access to services
C.4 Geographical coverage/boundaries
C.5 Referral sources
C.6 Interdependencies with other services
C.7 Location of service
C.8 Days/hours of operation
Service delivery
Stage 0 – Identify and refer patient
Stage 1 – Manage referral and arrange assessment
Stage 2 – Assessment and diagnosis
Stage 3 – Communicate diagnosis and develop care plan
Stage 4 – Early interventions
Stage 5 – Discharge and transition to GP care
3
4
5
5
8
9
9
9
9
9
10
10
10
10
11
12
15
20
24
31
35
E.
F.
G.
Indicators
Dashboard
Activity
G.1 Activity plan
G.2 Individual patient agreements (cost per case)
Finance
H.
Annex 1: Information business flow for early diagnosis and interventions
Annex 2: Referral template for memory service
38
40
41
41
41
42
43
45
User note
This specification has been designed to assist commissioners in the delivery of one element of high-quality care for dementia:
memory services for early diagnosis and intervention. The text within square brackets [ ] in this document should be completed by
commissioners in order to reflect local needs and to help inform responses from the Provider(s).
The specification is not mandatory and commissioners should review the whole of the specification to ensure that it meets local
needs and, once agreed with Providers, it should form part of a renegotiated contract or form the relevant section of the NHS
Standard Contract.
The Dementia Commissioning Pack should be used in conjunction with:
Call to Action:
Reducing inappropriate use of antipsychotics for people with dementia
Together with the Dementia Action Alliance, the NHS Institute for Innovation and Improvement has launched a Call to Action to
work together in a way that will unite us in our common cause to improve the quality of life of people with dementia and their carers
by reducing the inappropriate use of antipsychotics.
To find out more and access resources which will support this Call to Action please visit:
www.institute.nhs.uk/qipp/calls_to_action/dementia_and_antipsychotic_drugs or you can email C2ADementia@institute.nhs.uk
5
A. Key service outcomes
Expected high-level outcomes of the service are listed in the table below:
No.
Outcome
Related NICE
Quality Standard
1
Increase in the proportion of people with dementia having a formal diagnosis
compared with the local estimated prevalence
2
2
Increase in the proportion of people with dementia receiving a diagnosis while they
are in the mild stages of the illness
3
Increase in the number of patients and carers who have a positive service
experience1
1, 3, 4
NHS Outcomes
Framework
2, 4
Guidance on measuring outcomes is provided in Section E.
1
Commissioners should consider how the patient and carer experience survey covers the relevant aspects of the NICE Quality Standards.
6
B. Purpose of the service
B.1 National and local context
‘Dementia’ is a term used to describe a syndrome that may be caused by a number of illnesses in which there is progressive
decline in multiple areas of function, including decline in memory, reasoning, communication skills and the ability to carry out daily
activities. Alzheimer’s disease is the most common type of dementia, with other types of dementia including vascular dementia,
dementia with Lewy bodies and frontotemporal dementia. Although dementia is predominantly a disorder of later life, there are at
least 15,000 people in the UK under the age of 65 who have the disease.
Dementia is one of the major health problems facing health and social care services. Worldwide, dementia affects 35 million
people, is set to treble by 2050 and has an estimated annual cost of US$600 billion (i.e. 1% of world gross domestic product). If this
were expressed in revenue terms, dementia as a country would be the 18th largest, between Turkey and Indonesia, and as a
company would be the world’s largest, worth more than Walmart or Exxon Mobil.2
There are currently 750,000 people in the UK living with dementia and the cost to the UK economy as a whole is more than £20
billion annually.3 Over the next 40 years the number of people with dementia in the UK will more than double to 1.7 million.4
Currently, around two thirds of people with dementia never receive a diagnosis.5 International comparisons suggest that the UK is
in the bottom third of European performance in terms of diagnosis, with less than half the activity of France, Sweden, Ireland and
Spain. Within the UK there is a 24-fold variation between highest and lowest activity by commissioning organisation.
Investment in research for dementia is 12 times lower than it is for cancer.6
2
Alzheimer’s Disease International (2010), World Alzheimer Report 2010: The Global Impact of Dementia, edited by A Wimo and M Prince. ADI.
3
King’s Fund (2008), Paying the Price: The cost of mental health in England to 2026. London: King’s Fund.
4
Dementia UK (2007), Dementia UK: A report into the prevalence and cost of dementia prepared by the Personal Social Services Research Unit (PSSRU) at
the London School of Economics and the Institute of Psychiatry at King’s College London, for the Alzheimer’s Society. London: Alzheimer’s Society.
5
National Audit Office (2007), Improving services and support for people with dementia. London: TSO.
7
When a diagnosis is made, it is often late in the disease trajectory, when it may be too late for those suffering from the disease to
make decisions and choices. Diagnosis is often made at a point of crisis that could potentially have been avoided had the diagnosis
been made earlier. One of the core aims of the National Dementia Strategy is to ensure that there are effective memory services to
enable early diagnosis and intervention for all on a nationwide basis.
It has been established that memory services can release substantial funds back into health and social care systems.7 The
evidence points to the value of early diagnosis and intervention to improve quality of life and to delay unnecessary admissions into
hospitals and care homes. Positive impacts set out in the National Dementia Strategy8 include:
 reductions in care home placement of up to 28% by providing carer support and counselling at diagnosis
 improvement in the quality of life of people with dementia following early diagnosis and intervention
 positive effects on the quality of life of family carers following early diagnosis and intervention.
The service to be commissioned is for good quality early diagnosis and intervention for patients with mild and moderate dementia.
The service will include:
 making the diagnosis well (i.e. high diagnostic accuracy including sub-typing) and making it early in a timely manner
 communicating the diagnosis well to the person with dementia and their family
 advising on appropriate treatment, information, care and support after diagnosis.
6
www.alzheimersresearchuk.org/dementia-statistics/
7
Department of Health (2007), The NHS in England: the Operating Framework for 2008/09. London: TSO.
8
Department of Health (2009), Living Well with Dementia: A National Dementia Strategy. London: TSO.
8
Local context
[Commissioners should insert information relating to the memory service for early diagnosis and intervention in dementia which is
relevant to local factors that influence the way the Provider delivers the service, e.g. issues linked with:
 demographics
 epidemiology
 the organisations commissioning the services
Mild to moderate
need
The memory service might be delivered in a number of
different settings, including in the community, in GPs’
surgeries, in clinics or in patients’ own homes. It is for
people with mild to moderate dementia whose dementia
has not been diagnosed. Patients with more severe
dementia may be diagnosed and managed in primary care.
Those at all stages of severity with complex mental health
needs or risk may need direct referral to specialist
dementia services. The diagram to the right indicates some
of the different means of support and inter-relationships
between services that people with dementia and their
carers may need. The person with dementia and carer will
need different services at different times and the memory
service is only one of a number available. The Provider
shall work with other organisations to help ensure
continuity of care across the pathway.
Memory
Service
More complex
need
 Joint Strategic Needs Assessment and strategy from the Health and Well-being Board.]
Specialist
Dementia
Service
Mental Health
Liaison
Service
Care Home
Liaison
9
Care Home
Hospital
Community
GP
B.2 Aims and objectives
The aim of the memory service is to deliver early diagnosis and intervention for people with mild to moderate dementia. It will
provide all patients who fulfil the referral criteria with a person-centred service, which empowers people with dementia and their
carers to make informed decisions about care and which helps maximise quality of life. The service should help reduce the risk of
crises later in the illness and enable the patient to be cared for at home for as long as possible while this is the preferred place of
care. The objectives of the service are:
 to promote and facilitate early identification and referral and encourage eligible patients to attend assessment
 to provide a high-quality accurate diagnosis of dementia that is communicated in a person-centred way to both the person with
dementia and their carers and which meets the individual needs of the person with dementia and their carers
 to provide diagnosis early in the disease
 to ensure that the service is readily accessible and meets the range of needs of the local population, including minority groups
 to ensure that people with dementia and their carers have appropriate information that allows them to manage their care more
effectively along the pathway and understand how to access other assistance
 to engage people with dementia and their carers in decisions about the care options available to them, including the
development of personal care plans
 to ensure continuity of care across the pathway and integration with other care providers
 to ensure that the service is delivered in a considered, timely and co-ordinated manner
 to provide opportunities for people with dementia to be included in research studies.
10
C. Scope
C.1 Patients
The memory service is designed to meet the needs of adults of all ages with symptoms of mild to moderate dementia who have not
already received a diagnosis. General practitioners shall refer patients who they suspect may have mild to moderate dementia that
is beginning to impact on the person’s day-to-day living.
C.2 Target groups

people with memory problems, where a diagnosis of dementia is suspected;

people with dementia, where confirmation of the sub type and/or specialist advice is required.
C.3 Equity of access to services
[Describe the Provider’s required policy and practices for ensuring that its services are accessible to all, regardless of age,
disability, gender reassignment, pregnancy and maternity, race, religion or belief, sex or sexual orientation, and deal sensitively
with all service users and potential service users and their family/friends and advocates. Explain policies and practices to actively
engage with, and provide culturally sensitive services to, minority groups in the population served]
C.4 Geographical coverage/boundaries
[Include details of any required geographic coverage/boundaries, geographical restrictions and eligible GP practices in respect of
provision of the timely diagnosis and intervention service.]
11
C.5 Referral sources
The Provider shall accept referrals from:
 General practitioners.
[Commissioners should state here if direct referrals from other sources may be accepted, for example from hospital clinicians or
from adult social care services.]
C.6 Interdependencies with other services
[Describe any relationships between the service and other providers of health, social care and other services in which a relationship
of ‘dependency’ exists. This may include GPs, information and advice services, and community mental health teams.]
C.7 Location of service
[Include address details of any premises used by the Provider to deliver any of the services covered in the service model.] The
Provider shall ensure that services are arranged to suit the person’s needs, including provision of the service in people’s homes or
at specified external venues. Commissioners should note that the National Dementia Strategy9 states that the service may be
delivered in different settings and by different Providers. Venues shall be easily accessible by public transport.
C.8 Days/hours of operation
[Include full details of times at which the Provider offers services.]
9
Department of Health (2009), Living Well with Dementia: A National Dementia Strategy. London: TSO.
12
D. Service delivery
Memory service for early diagnosis and intervention – pathway
The following diagram sets out the pathway for a memory service for early diagnosis and intervention. It shows six stages in the
pathway, though certain elements may take place in parallel rather than in series. Stages 1 to 5 reflect the delivery of the
commissioned memory service. Stage 0 is included in the service specification to confirm the obligations to be placed on the Stage
0 Provider by the commissioner. This is important, since Stage 0 reflects the prerequisites that should be in place for Stages 1 to 5
to be effective.
The detailed requirements for each stage are set out below, including the key deliverables and associated indicators at each stage.
Patient
presentation
0
Identify and refer
patient
1
Manage referral
and arrange
assessment
Patient discharged
2
Assessment and
diagnosis
13
33Communicate
diagnosis &
develop care plan
5
4
Early
interventions
Discharge and
transition to GP
care
Stage 0 – Identify and refer patient to memory service
Patient
0.1
GP consultation
0.2
0.3
Confirm eligible
patients
Patient presents to
GP
14
Refer eligible
patients to
memory
assessment
0.4
Share information
& provide
reassurance
Patient referred
to memory
assessment
Guidance for commissioners – what to expect from Stage 0
The purpose of this guidance is to provide information for commissioners about Stage 0; primarily what should be good practice in primary care. At
a high level, this guidance identifies the patient groups that should be eligible for the memory service and includes a proforma referral protocol that
could be put in place. This guidance reflects best practice as set out in NICE Clinical Guideline 42.10
Eligible patients (0.1 and 0.2)
Because of the complexity and heterogeneity of symptoms for dementia it is not possible to provide a list of referral criteria; instead referral to the
memory service will be a clinical decision based on the possibility that the individual presenting in primary care has mild to moderate dementia.
This will be on the basis of presenting symptoms, a review of past history, collateral history from an informant and exclusion of other acute medical
reasons such as delirium by physical examination and investigations. Together with a brief, objective measure of cognition, this information is
likely to form part of the referral information arrangements (see below) and is consistent with NICE Clinical Guideline 42.
The memory service as defined in Stages 1 to 5 is for people with mild to moderate dementia. Identifying people earlier in the disease pathway
enables more people suffering from the disease to make choices rather than at a point when it is too late. There is also evidence that a service of
this nature can release funds back into health and social care systems.11 Diagnosis of people with severe dementia should take place in primary
care, with or without the support of specialist dementia services.
Inclusion criteria
The service specification for dementia: support to primary care for people living at home and in care homes sets out arrangements for people who
are likely to be better supported outside the memory service. Adults should be referred to the memory service if they meet the following criteria:
 The person is presenting with symptoms consistent with suspected dementia rather than a physical or functional mental illness.
 The person does not have an existing clinical diagnosis of dementia.
10
National Institute for Health and Clinical Excellence (2007), Dementia: The NICE–SCIE Guideline on supporting people with dementia and their carers in
health and social care, National Clinical Practice Guideline Number 42. London: British Psychological Society/Gaskell.
11
Department of Health (2009), Living well with Dementia: A National Strategy. London: TSO
15
Due to the relative openness of the referral criteria, commissioners may wish to review the numbers of people who are referred to the memory
service but who have no illness or who have an illness of depression in order to ensure the most appropriate groups are referred to the service.
Guidance for commissioners – what to expect from Stage 0
Referral arrangements (0.3 and 0.4)
The proforma referral protocol (Annex 2) is consistent with NICE Clinical Guideline 42. In order to secure greater efficiency and minimise
duplication, commissioners may wish for certain information to be supplied by primary care to the memory service.
In compliance with NICE Clinical Guideline 42, permission should also be sought from the person in primary care to speak to another point of
contact, for example a family member. Consideration could also be given to the Nuffield Bioethics report12 in relation to dementia and involving
carers in decision making in the best interest of patients. The commissioner may wish to assess the quality of information sharing and involvement
of the patient in decision making in line with recent White Paper recommendations.13 This may form part of the patient and carer experience survey
shown in Section E.
Although no specific timelines are set in NICE Clinical Guideline 42, commissioners may wish to consider the following timelines as good practice:
All referrals to the memory service should be made within [3] operational days of the initial assessment or where appropriate within [7] days, where
a blood test has been requested. This information may be transferred by secure email, letter or fax.
12
Nuffield Council on Bioethics (2009), Dementia: ethical issues. London.
13
Department of Health (2010), Equity and Excellence: Liberating the NHS. White Paper, Cm 7881. London: TSO.
16
Stage 1 – Manage referral and arrange assessment
Patient
1.1
Receive patient
referral
Is patient
eligible?
1.2
Is patient willing
and ready?
1.3
yes
Contact and invite
eligible patients to
assessment
1.4
Patient continues
to assessment and
planning [2/3]
1.6
yes
Confirm memory
assessment
booking
Patient
identified and
referred
Discharge and
transition to GP care
[5]
yes
no
Is patient willing
and ready?
willing but not ready
1.5
Re-offer memory
assessment date
Interval
no
17
not
willing
Overview
The memory service Provider shall ensure that all eligible referred patients are offered a memory assessment to inform a diagnosis.
The Provider is responsible for stimulating the referral of as many eligible patients as possible into the memory service.
The Provider shall involve patients and carers in decisions and choices about the memory service and in making appropriate onward referrals.
Indicators
Outcomes
There is no specific indicator for Stage 1
This stage contributes to:
Outcome 1. There will be an increase in the proportion of people
with dementia having a formal diagnosis compared with the local
estimated prevalence
1.1 Receive patient referral
The Provider shall collate transferred patient information within [3] operational days of receiving referral and shall send an
acknowledgement of receipt of the referral back to the referrer. If the referral information is not complete, the Provider may reject
the referral and request that standard tests are completed in line with referral procedures.
The Provider shall liaise appropriately with all relevant staff and key providers regarding referred patients within [3] operational days
of receipt of the referral, in order to achieve integration across the system and increase uptake.
1.2 Confirm referral is appropriate
The Provider shall check the referral within (3) operational days of receiving it and confirm assessments to be offered.
18
The Provider shall accept or reject the referral to the memory service based on the patient and referrer information described in
Annex 2.
If the referral is rejected, the Provider shall record the reason and refer the patient on to GP-supported management or another
appropriate service.
1.3/1.4 Contact and invite patients for assessment
The Provider shall contact patients and carers in person or by telephone within [3] operational days of receipt of referral. The
patient shall be offered a memory assessment (initial offer).
The Provider shall send patients who cannot successfully be contacted after [2] attempts and within [8] operational days, an offer of
an assessment date in writing. If the offer is not accepted, or the patient cannot be contacted within [3] attempts, the patient shall
be referred on to GP-supported management and the GP shall be asked to discuss reasons for non-attendance with the patient
and undertake a review for a possible re-referral in 6 months.
The Provider shall follow NICE/SCIE guidelines on sharing information with patients and their families.
In consultation with the patient, and where appropriate the carer, the Provider shall determine whether the patient is willing and/or
ready to attend an assessment.
Where the patient is ready and willing, they shall be offered an assessment date that is within [10] operational days of successful
contact.
Patients shall be encouraged to be accompanied by a carer at the initial assessment and only in extreme circumstances where the
carer is unable to attend shall the first assessment with the carer take place separately via telephone.
The Provider shall record the date of successful contact and the proposed assessment date.
19
The Provider shall record the number of patients willing and ready for assessment and those not willing and/or not ready for
assessment.
1.5 Re-offer assessment date
The Provider shall make a second offer of an assessment date to patients who are not ready and/or not willing within a mutually
agreed timeframe of the initial offer.
Where a patient accepts a second date for assessment, the Provider shall record the date when the patient confirms that
acceptance.
Where a patient is not willing to accept a second date for assessment, the Provider shall record the date when the patient confirms
that s/he is not willing to accept the second assessment date. If the patient is not willing to accept the second assessment date s/he
shall be referred to GP-supported management and the GP shall be asked to discuss reasons for non-attendance with the patient
and undertake a review for a possible re-referral in 6 months.
Where a patient is willing but not yet ready to accept a second date for assessment, the Provider shall record the date when the
patient confirms that he/she is willing but still not ready. The patient shall be offered a third date for assessment within a mutually
agreed timeframe of the previous offer.
The Provider shall record the onward referral of unwilling patients to GP-supported management and the date the onward referral is
made. This is shown in the table below.
20
Decision process for Stages 1.3 to 1.5
Patient
Offer 1
Offer 2
Not willing
Not ready
Offer 3
Refer to General Practitioner
Within [3] operational
Within [8] operational days
GP to consider management of patient within their
days from receipt of
from receipt of referral
service and discuss reasons for non-attendance with
referral
unless firm refusal at offer 1
the patient and consider re-referral in 6 months’ time
Within [3] operational
On date agreed with patient
On date agreed with patient
days from receipt of
referral
Not contactable
Three-week period
Contact 1
Contact 2
Contact 3
Within [3] operational
Within [8] operational days
Within [15] operational days
days from receipt of
from receipt of referral
from receipt of referral. If no
referral
response; written letter
offering assessment date
1.6 Confirm memory assessment booking
Once the patient and carer have accepted a proposed assessment date, the Provider shall send confirmation of the date, time and
all information relevant to the patient and carer regarding the memory assessment.
21
Stage 2 – Assessment and diagnosis
2.2
History taking
Patient
Patient
continues to
assessment
2.1
Record patient
attendance at
assessment
2.3
Cognitive &
mental state &
physical
examination
2.4
Other appropriate
investigations
22
1.3.2
2.5
Make diagnosis
Patient care
plan developed
[3]
Overview
At this stage, the Provider shall undertake an assessment of the patient, which may take place in a clinical setting, in a patient’s home or in
another suitable setting.
A diagnosis of dementia shall only be made after a comprehensive assessment including, where appropriate (NICE/SCIE CG 42):
 history taking
 cognitive and mental state examination
 physical examination as needed and other appropriate investigations
 a review of medication.
From the assessment date, the Provider shall complete the diagnosis within [2] weeks and where a brain scan is required within [4] weeks. The
timeframe may be adjusted to take account of local provision (e.g. of scanning) but ideally there shall be no more than [8] weeks between
assessment and diagnosis.
The details of the assessment process are set out in Stages 2.1 to 2.5 below.
Indicators
Outcomes
Indicator 1
This stage contributes to:
[80%] of people will receive a formal diagnosis of dementia
compared to local estimated prevalence
Outcome 1. There will be an increase in the proportion of people
with dementia having a formal diagnosis compared with the local
estimated prevalence
Indicator 2
[20%] of people assessed will be in the mild cognitive impairment
(MCI) category
Outcome 2. There will be an increase in the proportion of people
with dementia receiving a diagnosis while they are in the mild
stages of the illness
23
2.1 Record patient attendance at assessment
The Provider shall undertake an assessment of the patient. This assessment shall take place within [10] operational days of the
patient being deemed to be willing and ready in accordance with Stages 0 and 1.
2.2 History taking
History taking shall be undertaken by a suitably qualified and trained professional and shall include, but shall not be limited to:
 a subjective and objective assessment of the patient’s life, social, family and carer history, circumstances and
preferences, as well as their physical and mental health needs and current level of functioning and abilities, including
an interview with an informant (usually carer/family) to generate a collateral history
 assessment of history and impacts of impairments of vision, hearing and mobility
 assessment of history and impacts of impairments of medical co-morbidities
 assessment of key psychiatric and behavioural features, including depression, wandering and psychosis
 risk assessment covering all areas appropriate to the individual, e.g. falls, risk to self, childcare or carer
responsibilities, driving and financial and legal issues
 carer assessment including burden, health and function.
The Provider shall note NICE/SCIE CG42 to confirm that the patient wishes to know the outcome of the diagnosis and with whom
the diagnosis should be shared and the Provider shall explain the process and timelines for making and communicating the
diagnosis.
2.3 Cognitive and mental state examination and physical examination
The Provider shall undertake a cognitive and mental state examination. The cognitive and mental state examination shall be
undertaken by a professional with specialist expertise in diagnosis and sub-typing and shall include an examination of attention and
concentration, orientation, short and long-term memory, praxis, language and executive function. The Provider shall, where
appropriate undertake a physical examination of the patient.
24
The Provider shall be qualified to undertake and interpret formal detailed cognitive testing using standardised instruments.
However, in undertaking these tests the Provider shall also have experience of taking into account other factors known to affect
performance (educational level, skills, prior level of functioning and attainment, language and any sensory impairments, psychiatric
illness or physical/neurological problems).
2.4 Other appropriate investigations
The Provider may need to undertake further investigations to inform diagnosis or sub-typing and these shall include, but not be
limited to:
 review of medication in order to identify and minimise the use of drugs that may adversely affect cognitive functioning
 ECG/EEG
 structural imaging (magnetic resonance imaging, MRI, or computer tomography, CT)
 formal neuropsychological testing where appropriate
 other investigations as appropriate.
2.5
Make diagnosis
A diagnosis of dementia and its sub-type shall be made by healthcare professionals with expertise in differential diagnosis of
dementia using international standardised criteria as set out in NICE/SCIE Clinical Guideline 42
Where the patient has a diagnosis of dementia, the Provider shall develop a draft care plan in consultation with other relevant
disciplines, to discuss with the patient and their carer. The development of a good quality care plan for people with dementia and
their carers requires the involvement of a number of different disciplines and the Provider will need to demonstrate how this will be
achieved.
25
Stage 3 – Communicate the diagnosis and develop care plan
Patient
Patient
assessed
3.1
Organise meeting
to communicate
diagnosis
3.2
Communicate
diagnosis
Agree and
document
personalised care
plan
3.4
3.3
Share
information and
signpost services
26
3.5
Organise the next
meeting
3.6
Communicate
serious illness
notification to GP
Patient commences
support interventions
[4]
Overview
Once the diagnosis has been made the Provider shall contact the patient to organise a meeting to communicate the outcome of the diagnosis.
The Provider shall communicate the diagnosis in a manner that minimises unwarranted anxiety and shall provide information and reassurance
that empowers the patient and carer to make informed decisions about the management of the condition and their individual well-being.
The Provider shall agree and document a personal care plan and talk through timely intervention options to empower the patient and their
carer/family regarding the condition and its management.
Indicators
Outcomes
There is no specific indicator for this stage
This stage contributes to:
Outcome 3. There will be an increase in the number of patients
and carers who have a positive service experience
3.1 Organise meeting to communicate diagnosis
The Provider shall contact the patient and the carer within [7] days of the diagnosis having been made, in order to organise a time
and venue to communicate the outcome of the diagnosis. This shall be within [14] days of the diagnosis having been made. The
Provider shall note the importance of a carer being present at this meeting to provide support to the patient and to contribute to the
development of the personal care plan. The Provider shall follow NICE/SCIE guidelines on sharing information with patients and
their carers/families.
The communication of the diagnosis shall take place face-to-face in a quiet, private and comfortable setting.
27
The Provider shall ensure that sufficient time is allowed to communicate the diagnosis sensitively, for the patient to assimilate the
news of the diagnosis and to address any initial concerns and questions the patient and carer/family may have. The Provider shall
allow at least one hour to communicate the diagnosis to the patient and their carer/family.
Wherever possible, the communication of the diagnosis shall be undertaken by the same person(s) who undertook the initial
assessment and may include other team members as appropriate. Patient and carer/family feedback shall be sought regarding the
quality of this process.
3.2 Communicate diagnosis
The Provider shall communicate the diagnosis to the patient in simple, direct language avoiding use of medical jargon, and shall
communicate in a warm, caring and respectful manner. Outcomes and actions should fall in to five categories:
Outcome
Action
1. No illness
Advise outcome of assessment to GP including any recommendations
2. Other illness (including
depression)
Initiate urgent treatment or referral for physical or mental disorder if required or discharge to
GP with advice on treatment or referral
3. Dementia (no medication)
Talk through timely interventions; signpost and refer to resources/support available. Advise
GP of outcome and recommended next steps
4. Dementia (medication)
Talk through timely interventions, including medication. Signpost and refer to
resources/support available. Advise GP of outcome and recommended next steps
5. Possible dementia (MCI)
Advise GP to re-refer if symptoms persist or increase
28
1. No illness
Where the diagnosis is one of no illness, the patient shall be notified of this outcome and this information shall be shared with the
patient’s GP.
2. Other illness (including depression)
The Provider shall share the diagnosis with the patient, and where appropriate the Provider shall initiate urgent treatment or referral
for physical or mental disorder if required and then discharge to GP. The Provider shall give advice on further treatment needed
and shall share this information with the patient’s GP.
3. Dementia (no medication)
The Provider shall give a clear and full explanation of:
1. the diagnosis
2. the prognosis
3. the treatment plan/next steps.
The Provider shall address any initial concerns or requests for information from the patient and carer/family.
4. Dementia (medication)
Where medication is available, the Provider shall follow the same process as that outlined in 3 above, but shall discuss medication
as part of the treatment plan.
5. Possible dementia (MCI)
Where the diagnosis is one of mild cognitive impairment (MCI) the Provider shall share the diagnosis with the patient and the
patient’s GP. The patient shall be discharged to their GP, who shall be encouraged to re-refer the patient if the clinical picture
changes.
29
[Commissioners should state here if the Provider should arrange directly for a review appointment in [12] months’ time.]
3.3 Share information and signpost services
The Provider shall share relevant information with the patient and carer and help them to understand options and make informed
choices in line with NICE/SCIE Clinical Guideline 42. However, the Provider shall be mindful of not overburdening the patient with
information during the meeting to communicate the diagnosis and some information may be shared at the subsequent timely
intervention meeting(s) as appropriate. The Provider shall explain the interventions to be offered (see Stage 4) and that the
Provider will work with patient and carer over the next [7 to 9] weeks before discharging the patient back to the care of the GP.
Where other interventions are appropriate, the Provider shall explain what they are and the timeline in which they will be delivered.
The Provider shall share information about:
 the signs and symptoms of dementia
 the course and prognosis of the condition
 options for care and treatment, including coping methods and strategies and including immediate care or support needs.
The Provider shall signpost:
 groups run by the Provider or other local providers
 local care and support services/support groups
 local information sources, including libraries and voluntary organisations such as the Alzheimer’s Society.
The Provider shall take into account the needs of the carer/family and signpost the carer for a carer’s assessment as appropriate.
The carer’s needs shall be reflected in the patient’s personal care plan.
30
3.4 Agree and document personalised care plan
Having informed the patient and carer of the available support options open to them, and having discussed the patient’s needs and
preferences, the Provider shall talk through the contents of the draft personalised care plan in line with NICE Clinical Guideline 42.
The personal care plan shall cover both patient and carer needs and preferences. As a minimum, the care plan should address the
following factors:
 prevention
 physical health
 psychological well-being
 medication
 social care and support
 activities
 carer’s needs and issues
 risk and safeguarding.
3.5 Organise the next meeting
The Provider shall organise the venue and date of the next meeting. The Provider shall explain to the patient and carer/family that
further face-to-face information sessions are available if required in order to talk through specific concerns and issues – and that
the patient and carer should think of questions and issues they might want to raise at the next meeting. The Provider shall
emphasise that continuing support and information will also be provided by a dementia adviser (if available), local support groups
and by the GP. The Provider shall inform the patient and carer that they may contact the Provider via telephone, prior to their next
scheduled meeting, should they need to do so.
31
The timeframe for the next meeting shall be by mutual agreement with the patient and the carer at a time when both can attend
together wherever possible, although in some instances separate meetings with the patient and the carer may be required.
3.6 Communicate serious illness notification to GP
Where a diagnosis of dementia is made, the Provider shall provide a ‘serious illness notification’ to the patient’s GP within [1] day of
the diagnosis being shared with the patient. The serious illness notification may take a format similar to that used for a diagnosis of
cancer and shall be transmitted via fax or secure email.
32
Stage 4 – Early interventions
Patient
Patient , carer and
health professional
have discussed
appropriate care
plan based on
assessment
Patient discharge and
transition to GP care
[5]
4.1
Information,
support and
follow-up
4.2
Additional
interventions
33
Overview
The Provider shall offer timely interventions and support for patients (and their carers) who have received a diagnosis of dementia. This support
shall, as a minimum, include information sharing, support and follow-up. The patient and carer shall be informed about:
 education sessions in dementia
 therapeutic activities for dementia
 peer support/self-help groups
 support for carers
 medication, where appropriate.
The content and the number of the information sharing and support meetings will vary according to individual patient and carer needs.
However, as a minimum, all patients and carers shall have at least one subsequent meeting post diagnosis to share information and finalise a
personal care plan.
Where the Provider is directly responsible for delivering other interventions, the Provider shall have appropriate systems and resources in place
to ensure that waiting times for the commencement of the programme do not exceed [30] operational days from the date the diagnosis is
communicated to the patient.
Where available, and where appropriate, the Provider shall offer the patient the opportunity to participate in research studies.
Indicators
Outcomes
There is no specific indicator for this stage
This stage contributes to:
Outcome 3. There will be an increase in the number of patients
and carers who have a positive service experience
34
4.1 Information, support and follow-up
The Provider shall deliver information, support and follow-up to patients with a diagnosis of dementia. In sharing information and
providing support, the Provider shall ascertain the topics of most interest and relevance to the patient and carer/family and assist
them in identifying services and support that are best suited to their needs. The Provider shall allow at least one hour for this
meeting – although in some cases several shorter meetings may be appropriate.
Information and support shall include, but shall not be limited to:
 support for carers of patients who have non-cognitive symptoms (e.g. mood disorders, psychotic symptoms and
behaviour that challenges)
 advice and support to assess and manage pharmacological treatment
 medico-legal issues, including driving
 guidance on how people with dementia can improve their general health, live positively and maximise their quality of
life after diagnosis, e.g. using mental exercise, physical activity, dietary advice alongside drug therapy
 services to support people with dementia and their carers that may be available from other organisations
 services that can offer information, advice and support with communication problems
 services that can advise on welfare benefits
 local dementia support services, including dementia adviser services and useful websites for patients and carers
 peer support services
 assessment of carer needs
 advice and support on planning for the future, including legal matters associated with loss of capacity, including power
of attorney, managing finances and benefits, and advance directives
 services to support people with other health or care needs
 opportunities for involvement in research studies.
35
Printed information materials shall be kept up-to-date and shared with general practices.
The content and number of these sessions will vary according to patient preference. However, at the final session the Provider shall
emphasise that long-term support will continue to be available via local dementia support services, including dementia adviser
services (if available) and their GP. Where dementia adviser services are available, the Provider shall notify the patient and
carer/family that the dementia adviser will contact them via telephone. In general, the expected period of contact and support from
the Provider shall be [12] weeks from acceptance of assessment date.
Where anti-dementia medication is prescribed, the Provider shall follow the local shared care protocol.
The relationship with the local specialist dementia service provider is of primary importance and no referrals shall be made to this
service unless the commissioner has agreed to it. However, there will be some individuals who require referral because of the
nature and severity of symptoms and risk and this referral should be via their GP in all but emergency situations. The specialist
dementia service provider shall not be used as a non-specific follow-up service for those discharged from memory services unless
it is specifically commissioned to do so.
[Commissioners should note here any additional referral arrangements they would like to put in place with the specialist dementia
service provider.]
4.2 Additional interventions
Where commissioned, or where available, the Provider shall deliver or signpost/refer on to services that will provide interventions in
line with NICE/SCIE guidelines, which shall include, but not be limited to:
 education sessions in dementia
 therapeutic activities for dementia (e.g. cognitive stimulation therapy, reminiscence groups)
 peer support/self-help groups
 carer support.
[Commissioners should describe the scope of any additional interventions to be provided.]
36
Stage 5 – Discharge and transition to GP care
Patient
5.1
5.2
Confirm care plan
Produce discharge
letter
Patient has
completed
information and
support sessions
37
Patient discharged
and transitioned GP
care
Overview
This stage reprises the main deliverables for a successful transition to GP care, although in practice the finalisation of the personal care plan for
the patient and carer will occur at or shortly after the final information and support session.
The personal care plan shall provide the patient and carer with details of continuing points of contact and interventions to support their wellbeing, as well as arrangements for follow-up in primary care and with the Provider if appropriate.
A copy of the personal care plan shall be made available to the patient, carer and GP.
Indicators
Outcomes
Indicator 3
This stage contributes to:
[85%] of patients and carers will be satisfied with the memory
service (based on >50% of people who have used the service
returning the survey)
Outcome 3. There will be an increase in the number of patients and
carers who have a positive service experience
5.1 Confirm care plan
At or within [5] operational days of completion of the final meeting, the Provider shall complete a written personal care plan for the
patient and their carer and this shall be agreed with the patient and the carer. The patient shall receive a copy of the care plan; the
carer shall receive a copy of the personal care plan where the patient’s permission has been given.
Page 38
5.2 Produce discharge letter
When the patient has agreed the personal care plan, it shall be copied to the patient’s GP, alongside a discharge letter
summarising the main points of the personal care plan. This shall include confirmation of the diagnosis and a recommendation that
the patient is entered on to the Quality and Outcomes Framework (QOF) dementia register. GP-supported management shall
include the monitoring and management of elements in the personal care plan relating to activities to promote health and wellbeing, for both the patient and the carer, and review at agreed intervals.
Page 39
E. Indicators
Outcomes and indicators which the commissioner may find useful are shown below:
Outcome
1. There will be an
increase in the
proportion of
people with
dementia having a
formal diagnosis
compared with the
local estimated
prevalence
2. There will be an
increase in the
proportion of
people with
dementia
receiving a
diagnosis while
they are in the
mild stages of the
illness
14
Expected
outcomes
Yr 1 Yr 2
Yr 3
TBA
[80%]
TBA
Indicator
description
Indicator
threshold
Measurement
Remedy
1. The number of
people with a formal
diagnosis of
dementia as a
percentage of the
local predicted
prevalence
[80%]14
(x) Number of people with a formal diagnosis
of dementia
Conversation at quarterly review
(y) Local predicted prevalence of dementia in
local area
[Commissioners to insert any bespoke
consequences to apply in accordance with
Clause 31.6 of the NHS Standard Contract.]
[x/y] x 100 = percentage of people with a
formal diagnosis of dementia
TBA
TBA
[50%]
2. The number of
people with a
diagnosis of MCI as a
percentage of
referrals15
[50%]16
(x) Number of people with a diagnosis of MCI
Conversation at quarterly review
(y) Number of referrals
[Commissioners to insert any bespoke
consequences to apply in accordance with
Clause 31.6 of the NHS Standard Contract.]
[x/y] x 100 = percentage of patients with a
diagnosis of MCI
Indicator thresholds should be set annually at the expected outcome target.
15
On its own MCI may not be a reliable proxy and commissioners may also wish to consider prevalence and QOF data, as well as the throughput of patients
utilising the memory service (e.g. number of patients with a diagnosis of depression).
16
Commissioners will need to determine a baseline position prior to agreeing expected outcome measures.
Page 40
Outcome
3. There will be an
increase in the
number of patients
and carers who
have a positive
service
experience
17
Expected
outcomes
Yr 1 Yr 2
Yr 3
TBA
[85%]
TBA
Indicator
description
Indicator
threshold
Measurement
Remedy
3. Percentage of
patients and carers
surveyed satisfied
with the memory
service (based on
>50% of people who
have used the
service returning the
survey)
[85%]17
(x) Number of surveys with satisfactory score
Conversation at quarterly review
(y) Total number of surveys received
[x/y] x 100 = percentage of patients and
carers who are satisfied with the memory
service
Indicator thresholds should be set annually at the expected outcome target.
Page 41
[Commissioners to insert any bespoke
consequences to apply in accordance with
Clause 31.6 of the NHS Standard Contract]
F. Dashboard
The Provider shall report performance using the dashboard template below:
Proforma Memory Service Dashboard Report
Activity for GP Consortia
Financials
Patients
completing early
interventions in
month
Savings: Year to date
1010
1000
990
980
970
960
950
940
930
920
£000s
Referrals made
in month
£000s
Spend:Year to date
Budget
16
14
12
10
8
6
4
2
0
Actual
Budget
£0 00 s
Practice A
Practice B
Practice C
5 10
5 00
4 90
4 80
4 70
4 60
4 50
4 40
4 30
4 20
Bu dge t
Performance
Outcome
Increase in the proportion of people having a
formal diagnosis of dementia compared to
predicted prevalence
Month
X
Actual
Sav ings: Curre nt month
S pe nd : C ur ren t mon th
£000s
GP Practice
9
8
7
6
5
4
3
2
1
0
A ctu al
Budget
Actual
Provider analysis
Yr to
date
Provide a description of the key performance issues for
the provider. Where possible this information should be
benchmarked. Where relevant, outline contractual levers
being used, e.g. withholding monies
Increase in the proportion of people receiving a
diagnosis of dementia while they are in the mild
stage
Increase in the number of patients and carers
who have a positive experience of the service
Patient complaints:
The commissioner should agree these information requirements with the Provider and these should be inserted into the NHS
Standard Contract.
Page 42
G. Activity
G.1 Activity plan
Eligible patients
Assessments for period
Patients who are diagnosed as having no illness
Patients who are diagnosed with another illness (including depression)
Patients who are diagnosed with dementia (no medication)
Patients who are diagnosed with dementia (medication)
Patients who are diagnosed with MCI
TOTAL
G.2 Individual patient agreements (cost per case)
Page 43
H. Finance
Annual contract value
Service
Basis of contract
Currency
Price
Thresholds
Total annual
expected cost
£
Cost per case
Total
Page 44
Annex 1: Information business flow for early diagnosis and interventions
Stage 0
Refer in-scope
patients to
memory service
Stage 1
Referral and
referral
information
received by
memory service
provider
Provision of patient education,
information and reassurance
Is patient inscope?
No
Is patient
willing and
clinically
ready?
No
Referral closure
GP-supported management
Yes
Referral to assessment waiting
time commences
Referral
accepted
Within 3 days
Patient
contacted /
invited to
assessment
Yes
Stages
2 and 3
Referral to assessment waiting
time clock stops
(10 days)
Assessment to commencement
waiting time commences
Re-offer cycle
(3 times if not
clinically ready)
Waiting time
clock pause
Initial patient
assessment
complete / data
recorded
Other
appropriate
investigations
& undertake
diagnosis
Organise meeting to
communicate outcome of
diagnosis
Communicate
diagnosis,
share
information &
signpost
services
Care plan discussed
Stage 4
To stage 4
Page 45
No
Referral closure
GP-supported mgt
Early interventions
Stage 4
1. Information, support and follow-up
All patients with a diagnosis of dementia and their carer(s) will receive at least one further
session post diagnosis to receive information, support and follow-up. Where the patient is
prescribed medication the memory service will continue to monitor the patients prior to referring
them back to the long-term management of their General Practitioner.
2. Additional interventions
Where available or where commissioned the Provider shall deliver or signpost or refer on to
services that provide:
► Education sessions
► Therapeutic activities
► Peer support / self help groups
Stage 5
Finalise care
plan
Discharge letter sent
to GP
Early diagnosis and
interventions closed
Page 46
Annex 2: Referral template for memory service
[Name of service
Address
Telephone/fax]
Patient identification (name DoB, address, telephone number,
NHS no.: all populated from electronic medical record (EMR))
Date of referral
Carer information (name, relationship, address, telephone
number)
Blood test battery results [FBC, B12, TSH, renal function,
glucose, calcium] (populated from EMR)
Co-morbidities (populated from EMR)
Current medication (populated from EMR)
Alcohol consumption (populated from EMR)
Other services used
Social circumstances
Other risk factors identified
GP’s clinical suspicions/any other relevant information
Practice identification
Local authority of residence
Page 47
Referral criteria:
 working-age adults and older adults
 subjective memory problems
 change in everyday function
over period of >6 months
 carer’s report of change in client
 no previous or definitive diagnosis of dementia.
The service will not see any cases where urgent treatment is needed, for example:
 more complex behavioural and psychological problems
 suicidal ideation
 psychotic behaviour
 crisis situation from carer’s perspective.
These cases should be referred directly to [
]
Page 48