Joint guidelines for the general hospital on the diagnosis of dementia, placement decisions, capacity assessment and the referral of patients with dementia to Adult Social Care / Adult Services and Older People’s Mental Health

Reference Number TBC

Version 2 Medicine for Older People Divisional Policy Group Name of responsible (ratifying) committee PHT Ratifying Committee Date ratified 07/12/2011 William Cutter - Consultant OPMH, Southern Health Document Manager (job title) NHS Foundation Trust Date issued 19/12/2011

Review date December 2012

Electronic location Clinical Guidelines

Related Procedural Documents Diagnosis, dementia, placement decisions, capacity assessment, referral, patients, Adult Social Care, Adult Key Words (to aid with searching) Services, Medicine for Older People, Older People’s Mental Health

Diagnosis of dementia Draft 10.08.2009 (review date TBC) Page 1 of 12 CONTENTS

QUICK REFERENCE GUIDE...... 3 1. Introduction ……………………………………………………………………………………………….4 2. Purpose ……………………………………………………………………………………………………..4 2.1. Diagnosing Dementia...... 4 3. Placement Decisions / Continuing Healthcare assessments...... 5 4. Mental Capacity Act / Best Interests Decisions...... 6 APPENDIX A …………………………………………………………………………………………8 Flowchart for the diagnosis of dementia…..……………………………………………………...... 8 APPENDIX B …………………………………………………………………………………………………..9 Checklist for the Review and Ratification of Procedural Documents……………………………. 9 APPENDIX C…………………………………………………………………………………………………..11 Equality Impact Assessment………………………………………………………………………. ..11

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 2 of 12 QUICK REFERENCE GUIDE

This policy must be followed in full when developing or reviewing and amending Trust procedural documents.

For quick reference the guide below is a summary of actions required. This does not negate the need for the document author and others involved in the process to be aware of and follow the detail of this policy.

1. Patients with cognitive impairment may be already known to an Older People’s Mental Health (OPMH) team (or in the case of someone with a learning disability (LD) the LD team). A phone call to the relevant OPMH or LD team will provide this information. The OPMH team can then fax relevant documentation.

2. Before diagnosing dementia, delirium should be excluded.

3. Consultant geriatricians and consultant physicians can make diagnoses of dementia in straightforward cases where they feel confident to do so. Adult Social Care Adult Services (Hampshire County Council) and (Portsmouth City Council) ASC/AS have agreed to accept these diagnoses.

4. If an OPMH assessment is required, this can occur either as an inpatient, or where the issues are not urgent the OPMH team may assess the patient as an outpatient.

5. Where there are issues that require OPMH input, provided the OPMH assessment is unlikely to substantially alter the outcome for the patient, then the ASC/AS assessment should proceed while the OPMH assessment is awaited.

6. In some situations, particularly where the OPMH assessment may substantially alter the outcome for the patient (e.g. uncertain diagnosis, severe behavioural issues) and therefore the nature of the package of care that will be suitable for the patient, the ASC/AS assessment may need to occur after the OPMH assessment.

7. Where someone has LD and a suspected dementia, the LD team should always be involved in the assessment.

8. OPMH assessment may sometimes be required to supplement the Healthcare Needs Assessment, especially where there are significant mental healthcare needs or where the outcome of the OPMH assessment may affect the type of placement sought. The OPMH team are not able to say what kind of placement is required, they are only able to comment on the mental health risks and needs that the person has.

9. The OPMH team will usually only contribute to Continuing Healthcare assessments where they are actively involved already with the patient. Where there are significant mental health needs, OPMH advice may be sought.

10. Where decisions are being made in someone’s best interests who lacks capacity, where possible multiple decision makers should be involved. Ultimately a ‘decision maker’ needs to take responsibility for the decision: in the case of healthcare decisions this is the consultant responsible for the patient, for social care decisions, this is the ASC/AS care manager for the patient.

11. The medical team looking after the patient needs to make an initial assessment of capacity. OPMH can provide a second opinion about mental capacity where capacity assessment is complex or capacity uncertain.

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 3 of 12 1. Introduction There are often occasions when people with dementia will require an assessment by Adult Social Care (Portsmouth City Council) or Adult Services (Hampshire County Council) ASC/AS, whether with a view to a package of care at home, or to placement. An OPMH (older person’s mental health) assessment may in some cases be required before ASC/AS can assess the patient, but in many cases may either not be necessary at all, or the referral can be made at the same time as a referral to ASC/AS, and often OPMH could see the patient after discharge. Sometimes an outpatient or home assessment by OPMH can be more useful than one in hospital, as a better picture of the functioning of the patient can be obtained. Some doctors in Portsmouth Hospitals Trust have the expertise to make some diagnoses of dementia. ASC/AS will accept these diagnoses of dementia, provided the diagnostic procedure follows the guidelines below. These guidelines set out under what circumstances doctors in PHT can make a diagnosis of dementia, when an OPMH assessment is necessary prior to referring to ASC/AS, and when an OPMH referral can occur at the same time as a ASC/AS referral.

2. Purpose These guidelines have been developed jointly between Portsmouth Hospitals Trust, Southern Health NHS Foundation Trust, Primary Care Trusts within SHIP, Solent NHS Trust, Hampshire County Council, Portsmouth City Council. They are designed to guide hospital medical and nursing teams in the diagnosis of dementia and the referral of people with dementia to OPMH teams and to ASC/AS teams. They set down who can make a diagnosis of dementia that will be acceptable to ASC/AS teams. They also provide guidance as to the process for assessing mental capacity and when to refer people for a second opinion regarding mental capacity to OPMH. They further provide guidance with regard to the role of OPMH in Continuing Healthcare Assessments.

2.1 Diagnosing Dementia

2.2 In all cases of cognitive impairment, the doctor looking after the patient should ensure that delirium has been excluded. If present, the underlying cause should have been treated and the delirium has resolved as far as possible before referring either to ASC/AS and/or OPMH. The delirium guidelines outline this process (HYPERLINK HERE).

2.3 Where there is cognitive impairment in the absence of delirium (established by collateral history, patient observation by the ward team, and an approved cognitive test, e.g. MMSE), firstly the ward doctors should ensure that the patient is not already known to OPMH services. This can be done by the ward clerk or team member contacting the OPMH secretaries for the area. The back of the OPMH referral form gives these telephone numbers. The teams are organised according to which GP practice the patient is under. Where the patient is known, a diagnosis of dementia may already have been made, and relevant letters and documentation can be faxed to the ward team. A referral can then be made to ASC/AS

2.4 Where dementia is suspected in someone with a learning disability, a dementia diagnosis may have already been made by the Learning Disability Consultant Psychiatrist. Whether the person has had contact with the local Learning Disability team can be checked by contacting the appropriate team. ASC/AS’ own specialist Learning Disability Teams may also be able to provide some information. It is advisable to seek specialist learning disability advice due to the complexities of the dual diagnosis of a LD and a dementia, along with the difficulty of assessing and diagnosing dementia in someone who already has a long standing cognitive impairment.

2.5 If the patient does not already have a diagnosis of dementia from an OPMH team, the consultant in charge of the patient’s care may make a diagnosis of dementia, (provided a collateral history has been obtained where possible and an MMSE or similar test has been performed, and delirium excluded) under the following circumstances:

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 4 of 12 a) In straightforward cases of Alzheimer’s disease, vascular dementia and Lewy Body dementia, a consultant geriatrician or neurologist may make the diagnosis b) In straightforward cases of Alzheimer’s disease and vascular dementia, a consultant physician may make the diagnosis.

2.6 Once such a diagnosis has been made, a referral can be made to ASC/AS. These diagnoses will be accepted by ASC/AS. On the form, it is very important to give details to ASC/AS about why an OPMH assessment is not needed or why not essential to the ASC/AS assessment and can wait (and, if thought more suitable for an outpatient assessment, why).

2.7 When a physician makes the diagnosis of dementia – it is very important that they discuss the diagnosis with the patient (where appropriate) and / or with the carers, and document that this discussion has taken place. Although people are often reluctant to discuss a diagnosis of dementia with patients / carers, there is good evidence to suggest that the diagnosis, sensitively given, is not badly received. In many respects it is no different from breaking the news regarding other serious illnesses.

2.8 A new diagnosis of dementia must always be communicated to the patient’s GP.

2.9 Where a diagnosis of dementia has been made, there is likely to be a need for ongoing follow up from OPMH services (or Learning Disability services depending on the individual). It is important to identify new cases of dementia opportunistically while patients are being treated for other conditions, and where appropriate, the OPMH service is keen to provide assessment and follow up after discharge. For example in a new case of mild dementia, it may be appropriate for the medical team to refer for an outpatient assessment by the OPMH team (there is a box on the referral form to tick for this).

2.10 However there will also be occasions when no OPMH referral is necessary – for example in a case of severe dementia where physical needs predominate, there are no behavioural problems and where nursing home placement is proposed. In such cases, where a physician has made the diagnosis of dementia and no OPMH referral is being made, the GP should be informed and may refer to OPMH in the future if the need arises. The relevant consultant or their colleague in OPMH will be happy to discuss cases on the telephone where there is uncertainty.

2.11 If there are also low level mental health needs (e.g. co-morbid mild behavioural problems, mild psychiatric problems, issues over whether the patient needs a CPN once discharged or whether they may benefit from acetylcholinesterase inhibitors) that require an inpatient assessment by OPMH, then the referral to and assessment by ASC/AS can proceed while the OPMH team is awaited, as these needs are unlikely to substantially alter the assessment of ASC/AS. Where needs that will impact on care provision are likely to change, an OPMH assessment may be required first (see 4 below).

2.11 Under certain circumstances, there will be a need for an OPMH assessment before the ASC/AS referral / assessment can go ahead. These are: i) The diagnosis remains uncertain (e.g. still uncertain whether there is a sub-acute delirium despite efforts to rule this out, uncertain type of dementia, possible rarer type of dementia e.g. fronto-temporal, ?depressive pseudo-dementia). ii) Co-morbid significant behavioural problems or mental illness (e.g. depression / psychosis) – these may respond to treatment by OPMH and therefore could affect the outcome of an ASC/AS assessment.

2.12 Where the patient has a learning disability and dementia is suspected, LD services should always be involved in making the diagnosis.

2.13 In the unusual situation where a person under the age of 65 is suspected of having a dementia, the referral should be made as usual to the OPMH team rather than the adult mental health team.

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 5 of 12 3. Discharge Decisions (see PHT Discharge Policy – INSERT HYPERLINK HERE)

3.1 The presently used PHT Healthcare Needs Assessment is a useful tool to help ASC/AS and the family to make placement decisions, as well as a useful part of the handover to care homes, and supplement to the ASC/AS panel form.

3.2 Straightforward decisions requiring a very small package of care do not need the PHT Healthcare Needs Assessment to be filled out – the Social Worker/Care Manager can make the decision with the family.

3.3 In more complex cases, where a more significant package of care or placement is required, the Healthcare Needs Assessment may be filled out and a Continuing Healthcare Checklist may be needed (discuss with ASC/AS).

3.4 An OPMH assessment may be needed to supplement the Healthcare Needs Assessment under the following circumstances:

i) If the Healthcare Needs Assessment identifies a significant and challenging mental health need ii) The MDT feel there may be potential for improvement with treatment which may influence the placement decision

3.5 Discharge decisions will be informed by the multidisciplinary team in consultation with the patient and their carers/family, however ultimately the decision lies with ASC/AS or the Continuing Healthcare Team. Therefore clinical teams should not pre-empt the decision about the discharge destination (e.g. by saying “your mother needs a nursing home”) as the final decision may be different.

3.6 People with dementia or other mental health care needs do not necessarily require EMI (now called: ‘care home with dementia’ or DE (dementia) placement etc) placement, non-dementia / mental health. However, if the reason for placement results from the dementia, then the placement must be DE or MD (mental disorder) registered. It is only if the physical needs substantially outweigh the DE/MD needs that an OP (older person’s) placement should be considered.

3.7 It is not acceptable for clients to be placed in OP homes that cannot fully meet their needs because that is the only bed available.

3.8 The Healthcare Needs Assessment should be used as part of the handover to care homes.

4. Continuing Healthcare assessments

3.9 For Continuing Healthcare assessments, the ward team will usually be best placed to fill in the Mental Health Needs Nursing Assessment; an RMN background is not necessary to fill out this document. OPMH may contribute if they are currently actively involved. For example if a community mental health nurse (CMHN) has a patient on their caseload, they may advise the ward team on aspects of their mental health problems (and sometimes to attend a meeting to help fill in the Decision Support Tool). There is an expectation in the Continuing Care process that where there are needs in relation to cognition, that “active thought should be given to a referral to an appropriate specialist”. If this is not considered necessary, there is an expectation that a “record” is made regarding ”the reason for the decision not to refer.” Where there are significant mental health needs, or where any member of the multi-disciplinary team feel they need advice about the individual’s mental needs/management, the OPMH team may contribute to the assessment process.

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 6 of 12 4Mental Capacity Act / Best Interests Decisions

4.1 The official Portsmouth Hospitals Trust paperwork for recording MCA assessments / best interests decisions is located at INSERT HYPERLINK HERE. Mental capacity assessments and best interests decisions must be documented on the correct forms.

4.2 Multiple decision makers are allowed and encouraged to be involved in mental capacity assessments, best interests decisions and particularly decisions about IMCA referrals (e.g. the social worker and one or two members of the MDT).

4.3 The Social Worker or Continuing Healthcare Team should take the lead when placement and funding decisions are required (the ‘decision maker’ in MCA terms). Where decisions are about healthcare treatment, the decision maker is the consultant responsible for the patient. If the decision maker is uncertain about capacity, verbal discussion should be encouraged, and if required, verbal discussion with the OPMH team should be sought.

4.4 An exception to the above is where a patient lacking capacity has a valid and applicable health and welfare lasting power of attorney, in which case the attorney makes the decision on behalf of the patient

4.5 Referral to OPMH for assessment of capacity and/or to contribute to the best interests decision making process is only needed when the assessment is very complex and there are particular mental health needs (for example depression, delusions etc). OPMH will not accept referrals such as ‘? has capacity to decide on accommodation’ where no assessment of capacity has been made by any member of the MDT. OPMH may provide a second opinion where there is disagreement between parties about capacity.

4.6 In general, the Mental Capacity Act applies first in most situations, however where the condition is not transient, then the Deprivation of Liberty Safeguards or Mental Health Act may be required.

Definition: The term Adult Social Care (ASC) refers to the department formerly known as Social Services Department for Portsmouth City Council. The term Adult Services (AS) similarly refers to the former Social Services Department for Hampshire County Council. Throughout the document the abbreviation ASC/AS will therefore be used.

Glossary of Terms:

Dementia – a group of disorders that are characterised by progressive cognitive decline (e.g. memory loss) and functional impairment. Dementia includes disorders such as Alzheimer’s disease, Vascular dementia and Lewy Body Dementia.

Delirium – a temporary state of impaired consciousness, characterised by a wide variety of symptoms including confusion, fluctuating conscious level and hallucinations. Delirium is caused by an underlying physical condition of some kind (commonly an infection or medication side effects) and resolves once the underlying condition is successfully treated.

Cognitive impairment – an impairment of the processes of thought and memory. This can include a wide variety of symptoms, but commonly manifests in impairment of short term memory, concentration and ability to find one’s way around.

Learning disability – ‘a state of arrested or incomplete development of mind'. Somebody with a learning disability is said also to have 'significant impairment of intellectual functioning' and 'significant impairment of adaptive/social functioning’.

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 7 of 12 APPENDIX A Patient with cognitive impairment

Exclude delirium: blood etc investigations, collateral history +/- CT scan Consider other causes e.g. Mild Meets criteria for dementia? N o Cognitive Impairment, depression etc Y e Already known s to Yes Y OPMH? (phone e s relevant secretary / check if known) No Get copies of Consultant physician letters/assessments reviews available faxed information

Consultant Dementia subtype physician able to uncertain or severe make diagnosis behavioural / psychiatric issues

Other issues e.g. ?AChE inhibitors, mild behavioural / psychiatric OPMH assessment disturbance, ?needs CPN etc: ASC/AS assessment goes ahead while waiting for OPMH assessment ASC/AS referral for assessment

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 8 of 12 APPENDIX B

Checklist for the Review and Ratification of Procedural Documents and Consultation and Proposed Implementation Plan To be completed by the author of the document and attached when the document is submitted for ratification: a blank template can be found on the Trust Intranet. Home page -> Policies -> Templates

CHECKLIST FOR REVIEW AND RATIFICATION YES/NO TITLE OF DOCUMENT BEING REVIEWED: COMMENTS N/A 1 Title Yes Is the title clear and unambiguous? Yes Will it enable easy searching/access/retrieval?? Yes Is it clear whether the document is a policy, guideline, procedure, Yes protocol or ICP? 2 Introduction Yes Are reasons for the development of the document clearly stated? Yes 3 Content Yes Is there a standard front cover? Yes Is the document in the correct format? Yes Is the purpose of the document clear? Yes Is the scope clearly stated? Yes Does the scope include the paragraph relating to ability to comply, in the event of a infection outbreak, flu pandemic or any major No Not relevant incident? Are the definitions clearly explained? Yes Are the roles and responsibilities clearly explained? Yes Does it fulfill the requirements of the relevant Risk Management N/A Standard? (see attached compliance statement) Is it written in clear, unambiguous language? Yes 4 Evidence Base N/A Is the type of evidence to support the document explicitly N/A identified? Are key references cited? N/A Are the references cited in full? N/A Are associated documents referenced? N/A 5 Approval Route Does the document identify which committee/group will approve it? Yes 6 Process to Monitor Compliance and Effectiveness Are there measurable standards or KPIs to support the monitoring No of compliance with the effectiveness of the document? 7 Review Date Is the review date identified? Yes 6 Dissemination and Implementation Is a completed proposed implementation plan attached? No 7 Equality and Diversity Is a completed Equality Impact Assessment attached? Yes

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 9 of 12 APPENDIX B cont……

Checklist for the Review and Ratification of Procedural Documents and Consultation and Proposed Implementation Plan

CONSULTATION AND PROPOSED IMPLEMENTATION PLAN Date to ratification committee Groups /committees / individuals involved in the Initial special committee of interested parties development and consultation process to develop guidelines on 27/08/08, attended by representatives from Portsmouth City Adult Social Care, Hampshire County Council Adult Services, Portsmouth Hospitals Trust, Hampshire Partnership NHS Foundation Trust, Portsmouth City Teaching Primary Care Trust, Hampshire Primary Care Trust. Present: Dr Bill Cutter (Co-chair and Consultant Old Age Psychiatrist, HPT), Dr Carol Trotter (Co-chair and Consultant Old Age Psychiatrist, PCPCT), Gill Gould (), Dr Claire Spice (Consultant Geriatrician, PHT), Leslie Humphrey (Divisional Manager, DMOP, PHT), Olive Brown (Hospital Discharge Team), Michelle Ennis (HPCT), Pauline Mundy (Team Leader, Hospital Team, HCC), Liz Leray (Team Leader, Hospital Team, PCC), Dr Ed Neville (DCD Medicine), Dr Zoe Hemsley (Consultant Geriatrician, PHT). Subsequently all parties have agreed the present version of guidelines. Department of Medicine for Older People Consultants’ Meeting approved the document 12/10/09 Vulnerable Adults and Older Persons’ Committee 06/11/2009 Version 2 – meeting of interested parties on 15/04/11 to revise guidelines: attended by: Dr Cutter (Southern Health NHS Foundation Trust), Diane Wilson (NHS Hampshire), Gemma Rainger (NHS Portsmouth), Paula Hardy (Portsmouth City Adult Social Care), Julia Lake and Dr Zoe Hemsley (Portsmouth Hospitals Trust), Liz Hierons-Leith (Solent NHS Trust), Nadia Martin (Hampshire County Council Adult Services Department). Is training required to support implementation? Yes

If yes, outline plan to deliver training Dr Cutter to present document to relevant physicians and social workers

Outline any additional activities to support implementation

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 10 of 12 Individual Approval

If, as the author, you are happy that the document complies with Trust policy, please sign below and send the document, with this paper, the Equality Impact Assessment and NHSLA checklist (if required) to the chair of the committee/group where it will be ratified. To aid distribution all documentation should be sent electronically wherever possible.

Name Dr William Cutter Date

Signature

Committee / Group Approval

If the committee/group is happy to ratify this document, would the chair please sign below and send the policy together with this document, the Equality Impact Assessment, and NHSLA checklist (if required) and the relevant section of the minutes to the Trust Policies Officer. To aid distribution all documentation should be sent electronically wherever possible.

Name Date

Signature

If answers to any of the above questions is ‘no’, then please do not send it for ratification.

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 11 of 12 APPENDIX C

EQUALITY IMPACT ASSESSMENT To be completed by the author of the document and attached when the document is submitted for ratification: a blank template can be found on the Trust Intranet. Home page -> Policies -> Templates

Title of document for assessment Joint guidelines on the diagnosis of dementia, placement decisions, capacity assessment and the referral of patients with dementia to Adult Social Care / Adult Services and Older People’s Mental Health Date of assessment 12/01/10 Job title of person responsible for assessment Consultant Old Age Psychiatrist Division/Service Department of Older People’s Mental Health, Hampshire Partnership NHS Foundation Trust

Yes/No Comments Does the document affect one group less or more favourably than another on the basis of: No  Race No  Gender (including transgender) No  Religion or belief No  Sexual orientation, including lesbian, gay and bisexual people No  Age (for HR policies only) No  Disability – learning disabilities, physical disabilities, sensory impairment and mental health problems Does this document affect an individual’s human No rights? If you have identified potential discrimination, are the exceptions valid, legal and/or justified?

If the answers to any of the above questions is ‘yes’ you will need to complete a full Equality Impact Assessment (available from the Equality and Diversity website) or amend the policy such that only an disadvantage than can be justified is included. If you require any general advice please contact staff in the Equality and Diversity Department on 02392 288511

Diagnosis of dementia Draft 03.07.2009 (review date TBC) Page 12 of 12