Integrated Care Pathway for Dementia – 2013

1. Integrated Care Pathway for Dementia – 2013 NHS Grampian

2. Overall Dementia Pathway Next Person worried about memory or Identified through screening Refer to Older Adults Mental Health Service GP General Hospital Confirm Diagnosis Post Diagnostic Support (Health/Social Care/Voluntary) Services (Health/Social Care/Voluntary) Living a full life (Health/Social Care/Voluntary) Difficulties/Concerns End of Life Care (Health/Social Care/Voluntary

3. GP Assessment for Dementia Next • GP Assessment • History from person & reliable informant • Cognitive function assessment • Screen for depression & anxiety • Physical examination to rule out any acute and/or treatable medical condition • Investigations to rule out any acute and/or treatable medical condition • Care needs • Associated behaviour that may be challenging for others Person with cognitive difficulties Dementia Confirmed. -Subtype identified -Cognitive enhancer prescribed as appropriate -Psychosocial management of cognitive impairment. Post Diagnostic Support • Dementia suspected but could not • be confirmed • Subtype could not be identified • Issues with ongoing management Not dementia Consider Referral to Older Adults MHS No further action under dementia pathway No challenging behaviour or co-morbid mental illness Challenging behaviour and/or co-morbid mental illness present Follow Challenging behaviour pathway Manage co-morbid mental illness as appropriate Consider referral to Older Adults Mental Health Services for co-morbid mental illness Consider Anticipatory Care Plan / Key Information Summary/Getting to Know Me Annual Review Back to Overall Dementia Pathway page

4. Investigations Next • Blood • Full Blood Count • Urea, Creatinine, Electrolytes • Liver function tests • Thyroid function tests • Vitamin B12 & Folate assay • Serum Calcium • Blood Glucose • Lipid profile • Urine • Dipstick/Culture, if appropriate • Structural Neuro-imaging (CT/MRI brain) (No access from primary care currently) • To exclude potentially reversible/other causes such as space occupying lesions • To be requested if there is history of • Sudden onset/deterioration/falls • Presence of focal neurological signs • Seizures early on in the course of illness • Lack of reliable information Back to GP Assessment page Back to Overall Dementia Pathway page

5. GP Annual Review Next Annual Review • GP Assessment • History from person & reliable informant • Cognitive function assessment • Screen for depression & anxiety • Physical examination to rule out any acute and/or treatable medical condition • Investigations to rule out any acute and/or treatable medical condition • Care needs • Associated behaviour that may be challenging for others • Discuss/consider Anticipatory Care Plan/Key Information Summary Care needs identified Acute and/or treatable medical condition identified Challenging behaviour present and/or co-morbid mental illness present Refer to Social Care Appropriate management Continue further annual reviews Continue further annual reviews Follow Challenging behaviour pathway Manage co-morbid mental illness as appropriate Consider referral to Older Adults Mental Health Services for co-morbid mental illness Back to GP Assessment page Back to cognitive enhancers page Back to psychosocial intervention page Back to Older Adults MHS Team Assessment page Back to Challenging Behaviour Assessment & Management page Back to Phamacological Management page

6. Assessment And Management in Older Adults Mental Health Services Community Mental Health Team Following Referral Next Referral Received (Via SCI Gateway) Urgent Routine • Back to Phamacological Management page Back to GP Assessment page Back to Overall Dementia Pathway page

7. Referral Criteria Next • For Diagnosis • Contact details for Next of kin • Onset & duration of symptoms • Current support & care needs • Physical examination & investigations to rule out other acute/treatable conditions • Cognitive function assessment • Screen for depression & anxiety • Associated behaviour that may be challenging for others • For management of Challenging behaviour • Confirmation of steps followed in Challenging behaviour pathway Back to Referral page

8. Next Assessment And Management in Older Adults Mental Health Services Community Mental Health Team Following Referral Urgent Referral Urgent Referral Received Discussion with referrer, if appropriate; allocation to a member of OAMHS Team for assessment if appropriate; time frame for assessment as per issues identified in referral & discussion with the referrer. Referral to be brought to the attention of an identified decision maker in the CMHT on the day of the referral, if received within working hours or the next working day if received out of hours Back to Referral page

9. Assessment And Management in Older Adults Mental Health Community Mental Health Team Following Referral Routine Referral Next Routine Referral Received Case allocation process Age Under 65 Known to Learning Disability Team Allocation to a member of Community Mental Health Team. First appointment within 6 weeks. Known Dementia Refer to Learning Disability Services Yes No Refer to General Psychiatry Accept Assessment Back to Referral page

10. OAMHS Team assessment • Psychiatric assessment • Cognitive Function assessment • Clinical supervision by consultant Next • Minimum Data Set • History of cognitive impairment • Assessment of mental health • Assessment of risks • Assessment of care needs • Assessment of behaviour that may • be challenging to others • FURTHER INVESTIGATIONS • (if necessary) • Neuropsychology • Neuro imaging • Bloods Post Diagnostic Support Dementia Diagnosis Yes No No further action under Dementia pathway • Appropriate Management • Cognitive enhancers, if appropriate • Psychosocial interventions • Social care referral, if appropriate • Ongoing Community Mental Health Team • involvement needed: • Co-morbid mental illness • Active ongoing treatment • Significant behaviour that others find challenging No Review Yes Stabilised Discharge to Primary Care Annual Review Back to Referral page

11. Post Diagnostic Support Next Post Diagnostic Support to be delivered by multi-agency partnership consisting of Primary Care, Social Care, Voluntary agency such as Alzheimer Scotland and Older Adults Mental Health Services. Diagnosis delivered to the person with dementia &/or carer • Informationprovided at the time of diagnosis regarding:- • Diagnosis • Medication • Driving • Other information as appropriate given at the time of diagnosis • Psycho-social interventions for cognitive impairment in dementia • Further information & support as per the 5 pillars model provided as per local arrangements with option • to opt out:- • Understanding the illness & managing symptoms • Planning for future decision making • Supporting community connections • Peer support • Planning for future care • Getting to Know Me Back to Overall Dementia Pathway page Back to Older Adults MHS Team Assessment page Back to Psychosocial Intervention page

12. Cognitive Enhancer: Prescription & Monitoring • Next • Person with dementia of following types:- • Alzheimer disease • Mixed vascular & Alzheimer disease • Dementia in Lewy Body disease • Parkinson’s disease dementia Yes No Cognitive enhancer not indicated Trial of cognitive enhancer to be considered Does the person with dementia have capacity to consent to treatment with cognitive enhancer? No Yes Complete Section 47 AWIA form & treatment plan Consent to treatment obtained Involve legal proxy in discussion, if appropriate No Yes • Annual Review • Discuss other psychosocial support Initiate cognitive enhancer treatment process Back to GP Assessment page Back to Older Adults Team assessment page

13. Cognitive Enhancer Treatment Process • Next Check ECG, medical history & investigations • Caution in: For ACheI • Heart disease, sick sinus, supraventricular arrhythmias, • Bradycardia, AV Block, prolonged QTc interval • Peptic ulcer disease • Asthma & COPD • Hepatic impairment • Seizures • Renal impairment • GI obstruction • Caution in: For Memantine • Prolonged QTc interval • Renal impairment Suitable for cognitive enhancers Unsuitable for cognitive enhancers • Annual Review • Consider other • psychosocial support Back to cognitive enhancer prescription & monitoring page

14. Suitable for cognitive enhancers • Next Consider support to ensure adherence Prescribed as per BNF guidelines Review in 3/12 to assess for side effects & adherence issues Consider alternative cognitive enhancers Unacceptable side effects No Yes • Review 6-12 months • Side Effects • Cognitive function • Activities of daily living/care needs • Behaviour that others may find challenging Benefit No Yes Further annual review in Primary Care • Back to Phamacological Management page Back to cognitive enhancer treatment process

15. Challenging Behaviour Pathway • Next Challenging Behaviour in Dementia • Initial assessment and investigations to include:- • Delirium • Other physical problems that can cause behavioural • change e.g. constipation, pain, dehydration, medication, etc. Physical Problem identified Yes No Manage appropriately Challenging Behaviour assessment and management Challenging Behaviour Settled No Monitor and prevent future recurrences Yes Back to referral criteria page Back to GP Annual review page Back to GP Assessment page

16. Challenging Behaviour Assessment And Management NO 1 3 NO YES NO YES NO YES NO YES NO YES YES 2 • Next Initial Assessment to exclude common medical problems including DELIRIUM PAIN CONSTIPATION DEHYDRATION MEDICATION Medical problems identified? Behaviour that Challenges Assessment Principles: 1. Identification of behaviours; 2. Identification of impact of behaviours on the person with dementia & others; 3. Identification of risk Assessment scales Explore potential physical, psychological, inter-personal, environmental triggers Manage appropriately Annual GP reviews BC resolved? Refer to OAMHS Medical review Person-centred care Environment Risk assessment Watchful waiting (4 weeks) Consultation with family First line interventions Non- pharmacological interventions Person centred Review care needs Third line interventions Comprehensive Behavioural Management Plan Medication review Review behavioural management plan. Second line interventions Behavioural management Reviewed as appropriate Consider pharmacological management of BC Prevention Medical review Person centred care Recognition of triggers and early signs Environmental issues Information sharing Assistive technology Monitor and prevent future recurrences of physical health issues. BC appropriately managed? BC appropriately managed? BC appropriately managed? BC appropriately managed? Multidisciplinary review ongoing Back to GP Assessment page Back to Challenging Behaviour Pathway

17. Challenging Behaviour Assessment • Next • Complete assessment tools depending on symptoms:- • Cornell (Depression) • Cohen-Mansfield • Challenging behaviour checklist • Abbey pain Scale (Pain) • Functional Assessment (ABC) • NPI • Pittsburgh Agitation Scale No BPSD Mild to moderate BPSD Severe BPSD Extreme Risk/Distress • Prevention • Medical Review • Person Centred Care • Recognition of triggers • and early signs • Environmental issues • Information sharing • Assistive technology First line intervention Psychosocialor Non-pharmacological intervention Consider referral to Older Adults Team Ongoing medical review Consider pharmacological intervention Unresolved • Ongoing Assessment • Care plan • Watchful Waiting • Consultation with family Resolved Back to Challenging Behaviour Assessment & Management page

18. Medical review • Next • To detect any general health problems • Delirium • Pain • Infections • Dehydration • Constipation • Malnourishment • Others • Medication review • Anticholinergic burden • Antipsychotic & benzodiazepines • Depression/Anxiety Back to Challenging Behaviour Assessment & Management page • Back to Challenging Behaviour Assessment page

19. Person-centred care • Next • Is the person treated with dignity and respect? • Do you know about their history, lifestyle, culture and preferences? • Do the carers try to see the situation from the perspective of the person with dementia? • Does the person have the opportunity for relationships with others? • Does the person have the opportunity for stimulation and enjoyment? • Has the person’s family or carer been consulted? • Does the person’s care plan reflect their communication needs and abilities? Back to Challenging Behaviour Assessment & Management page • Back to Challenging Behaviour Assessment page

20. Environment • Next • If the person is being cared for in a bed or chair, are they comfortable and free of pressure sores? • Is the TV or radio playing something that the person can relate to and enjoy? • If the person is mobile, can they move around freely and have access to outside space? • Does the person recognise the environment as home? Does it contain things to help them feel at home? • Could assistive technology be used to improve freedom or safety? • Does the person have the correct eye glasses, and are they clean? • Is their hearing aid turned on and working correctly? • Is it too hot or too cold? • Is the person hungry? People may forget to eat Back to Challenging Behaviour Assessment & Management page • Back to Challenging Behaviour Assessment page

21. Non-pharmacological interventions • Next • Soothing and creative therapies • Aromatherapy • Massage • Warm towels • Smells of cooking • Having one’s hair brushed • A manicure • Music can help improve a person’s mood. • Singing and dancing • Simple non-drug treatments • developing a life story book • frequent, short conversations (as little as 30 seconds has proven effective) • using personal care as an opportunity for positive social interaction. • Sleep hygiene • reducing daytime napping • increasing activities during the day • agreeing realistic expectations for sleep duration. Back to Challenging Behaviour Assessment page

22. Pharmacological Management of Behaviour That Challenges • Next Initial assessments, watchful waiting & first line interventions including non-pharmacological approach have been attempted Yes No Yes Response No Refer to guidance on management of challenging behaviour Prevention & annual GP reviews • Screen for:- • Pain • Depression • Delirium • Sleep disturbance Pain Optimise analgesic dose e.g. Paracetamol 1g 4 times/day Depression Consider anti-depressant (start low, go slow)for 6/12. Caution: hyponatraemia; GI Bleeding (all SSRIs); prolonged QTc with Citalopram Sleep disturbance Consider sleep hygiene; if not successful, short course (4/52) of Zopiclone/Zolpidem (as per BNF). Delirium Investigate for cause and manage appropriately Improved No Yes If open to OAMHS, review & discharge to Primary Care Annual GP Review • Back to Challenging Behaviour Assessment • & Management page • Back to Challenging Behaviour Assessment page

23. Pharmacological Management of Behaviour That Challenges • Next If suitable for cognitive enhancers, consider use or optimise dose or check adherence. Response No response Consider Risperidone 0.25mg Twice daily (max 1 mg/twice daily). Caution: in Parkinson Disease, Dementia in Lewy Body– avoid where Benzodiazepines may need to be used. Review every 2 weeks for response. Response No response If open to OAMHS, review & discharge to Primary Care Consider referral to OAMHS Consider tapering 6-12 weeks Annual GP Review Back to previous page

24. Psycho-social Interventions For Cognitive Impairment in Dementia • Next Person with dementia & carer or family members Older Adults MHS GP Post Diagnostic Support • Availability of following intervention • discussed with the person with dementia • & their carers/family members; • appropriate intervention to be offered. • Carers education on dementia & management • Environmental adaptation & dementia • friendly design • Assistive technology • Physical activity • Falls prevention • Recreational activity • Life story work • In addition to interventions offered • with the PDS, following can be • offered by specialist service, if appropriate; • Carer stress management • Specific carer interventions • i.e. Tailored Activity Programme • Cognitive Stimulation Therapy • Self management for people • with dementia Review by GP Review by Older Adults MHS Stable Stable Yes No Yes No Annual Review Consider referral to Older Adults MHS Discharge to Primary Care Consider alternative management strategies Back to Post Diagnostic Support page Back to Challenging Behaviour Assessment page

25. End of Life Care • Next • Use Supportive & Palliative care Indicators Tool (SPICT) as indicator tool and if appropriate, patient should be • added to palliative care register • Use Palliative Performance Scale (PPS) to assess functional status. Take into account – Functional Decline • (functional assessment), weight loss, Cognitive Decline, unplanned admission to hospital, recurrent infections, • increasing care needs, BPSD, inappropriate vocalisation. • Care plan completed to reflect needs and assess unmet needs • Consider Carer needs – Carer assessment. • Assess Capacity – if appropriate complete Section 47 Adults with Incapacity Act form and Treatment Plan • Involve legal proxies if available in discussions • Ongoing Review and Care • Review Capacity • Consider –Anticipatory care plan • Symptom management - Treat reversible causes of decline • Consider “Just in case box” • Complete/update ePCS • Consider/review DNACPR • Consider GMED out-of-hours alert sheets • Care plan reviewed to reflect needs • Carer needs reassessed Holistic approach – consider physical, psychological, spiritual and social needs Carer needs – Enable family/carer etc. to express their concerns Anticipatory care prescribing – for pain, nausea, agitation, BPSD, breathlessness, respiratory tract secretions. Comfort care measures. Back to overall pathway page

26. End of Life Care • Next • Living and Dying Well • Grampian Integrated Palliative Care Plan • DNACPR Back to End of Life Care page • Back to overall pathway page

27. Cognitive Function Assessment Tools • Next • MoCA Test or MoCA Alternative Version • Standardised MMSE • 6CIT • Addenbrooke’s Cognitive Examination – ACE-R • Abbreviated Mental State Test • 4AT Back to GP Assessment page Back to GP Annual Review page Back to referral criteria

28. Screen for Depression & Anxiety • Next • NICE Guideline for Depression • NICE Reference Guide • GDS Short Form • HADS Back to GP Assessment page Back to GP Annual Review page Back to referral criteria Back to Phamacological Management page

29. Challenging Behaviour Assessment Tools • Next • NPI • CMAI • Abbey Pain Scale, PAIN AD • ABC • Cornell • Pittsburgh Agitation Scale • Challenging behaviour checklist Back to Challenging Behaviour Assessment & Management page Back to GP Assessment page Back to Challenging Behaviour Assessment page

30. Living a full life • Next • 8 pillars model • Living well with Dementia • Alzheimer Scotland Back to Overall Dementia Pathway page

31. Pain • Next • Often patients with delirium/dementia will not be able to say that they are in pain • Be alert to the possibility of pain • Regular analgesics would be more beneficial • Back to Challenging Behaviour Assessment • & Management page • Back to Challenging Behaviour Assessment page

32. Next Constipation • PR exam? ..............(If impacted, consider enema) • Stop/reduce contributory drugs if able (opiates, iron, calcium channel blockers, amitriptyline) • Laxatives • Initially Movicol 1 sachet twice daily + Senna 2 tablets at night • Once bowels cleared, stop movicol and consider senna +/- other laxative • Back to Challenging Behaviour Assessment • & Management page • Back to Challenging Behaviour Assessment page

33. Dehydration • Next • Clinically dehydrated? • Biochemically dehydrated?Urea>Creat; Na ( = severe) • Push oral fluids: Maintain & monitor fluid intake chart • Intravenous fluids if severely dehydrated (clinically/biochemically) or if poor oral intake • Back to Challenging Behaviour Assessment • & Management page • Back to Challenging Behaviour Assessment page

34. Medication • Next • Review drug chart & attempt to stop/reduce drugs that may precipitate or worsen delirium • Common offenders include • Bladder stabilisers (Oxybutynin, Tolterodine, Solifenacin) • Tricyclic antidepressants (Amitriptyline, Imipramine)* • Anticholinergics (Hyoscine/Buscopan, atropine eyedrops) • Benzodiazepines (diazepam, lorazepam, Zopiclone)* • Antihistamines (particularly sedative antihistamines) • Digoxin (check blood levels) • Lithium (check blood levels) • Opiates (morphine, codeine, Tramadol)* • High dose Steroids* (*may be dangerous to withdraw abruptly) • Back to Challenging Behaviour Assessment • & Management page • Back to Challenging Behaviour Assessment page

35. Information • Next Information for Patients Facing Dementia Handbook Alzheimer Scotland Website Alzheimer Scotland Helpline Telecare services Information for Carer Coping with Dementia Alzheimer Scotland Website Alzheimer Scotland Helpline Benefit Agency Website Dementia Making Decisions Clinical Information Quick Reference to SIGN 86 Guidance to NICE 42 Legal Information Mental Health (Care & Treatment) (Scotland) Act 2003 Adult With Incapacity (Scotland) Act 2000 Adult Support and Protection (Scotland) Act 2007 Services Aberdeen City Aberdeenshire Moray Back to Post Diagnostic Support page

36. Next 5 Pillars Model Back to Post Diagnostic Support page

37. Alzheimer Scotland Dementia Helpline Back to Information page

38. 8 Pillars Model Back to Living a full life page

39. Telecare Service This page is under construction.

40. Aberdeen City Services This page is under construction.

41. Moray Services This page is under construction

42. Carers & Family • Alzheimer Scotland • Aberdeenshire Dementia Services Back to Psychosocial Intervention page

43. ICP Development • 2006 – Large scale workshop to gauge interest in developing Grampian Wide managed care network hosted by Old Age Psychiatry leading to the creation of ICP Dementia Steering Group. • 2008 – Launch of “Developing For Mental Health” and Commitment 6. • 2009 – Appointment of Mrs RoziSweetin as ICP (Dementia) Coordinator. • 2010 – Development of Minimum Data Set and process flow. • 2011 – Agreement with Primary Care Leads achieved for the “front” page generic pathway. • 2012-2013 – Development of the MS PowerPoint based hyperlinked ICP. • 2013 – Launch of ICP at AECC • 2014 – Transfer of ICP to CGI • The ICP could not have been produced without the support and direction from the 3 Clinical Directors, Mr Alasdair Walker, Dr Donald Mowat and Dr Sridhar Vaitheswaran, but the technical expertise provided by Mrs RoziSweetin was critical to the its delivery as a useful clinical tool. • Thank you to those involved in the work to produce this ICP.