1. A Dementia Care Pathway for People with a Learning Disability Dr Clare Trudgeon Dr Chris O’Connor Learning Disability Service Gwent Healthcare NHS Trust

2. 2 Session Aims Provide participants with an overview of our Dementia Care Pathway Consider the benefits and challenges that have risen in impementing the pathway and how we plan to develop the pathway further Give an overview of research undertaken to support the introduction and evaluation of the pathway Engage in discussion around others experiences of Dementia Care Pathways Share our experience rather than expertise

3. 3 Exercise Consider: –What are the areas of good practice in your service in relation to the assessment of and intervention with people with a learning disability and dementia? –What challenges do you face in your service in relation to the assessment of and intervention with people with a learning disability and dementia?

4. 4 Why develop a Care Pathway? Perception that there were a high number of single profession mis-diagnoses being made Lack of evidence based practice being used in relation to assessment and interventions Poor multi-disciplinary approach to supporting service users and carers Increased referrals to Psychology and our ability to meet these requests in a timely manner The increasing ageing population of individuals with LD and the subsequent issues this brings for service provision. The potential early onset of dementia in those with Down’s syndrome and the subsequent issues this brings for service provision.

5. 5 What is a Care Pathway? Care Pathways are a systematic approach to describing and delivering the services and interventions that should shape care and treatment for a particular condition. They can be utilized in the translation of national guidelines into local protocols and clinical practice (Campbell et al 1998) The challenge facing healthcare services is to make the best use of limited resources. Integrated care pathways (ICP’s) provide high quality, evidence based best practice that collects variations between planned and actual care (national library for health – www.library.nhs.uk/Pathways)

6. 6 What is a Care Pathway? A Care Pathway aims to have: The right people In the right order In the right place Doing the right thing In the right time With the right outcomes All with attention to the patient experience

7. 7 Care Pathways for Dementia There is little published research on the impact of dementia care pathways in practice Clinically they are widely seen in generic older adult services and recommended by NICE guidelines Increasing reports of their implementation in Learning Disability services – often specific to those with down’s syndrome (Westminster LD Partnership, Scarborough, NE Yorkshire Healthcare Trust, Gloucestershire Partnership NHS Trust).

8. 8 Care Pathways for Dementia McKenzie et al (2000), developed a multi- disciplinary care pathway for people with Down’s syndrome who develop Alzheimer's disease. They followed the guidelines described by the AAMR/IASSID Wide range of professionals working in a co- ordinated way contributing their specialist knowledge at different stages of the pathway

9. 9 Care Pathways for Dementia Evaluation suggested the care pathway helps clearer communication between professionals, improves consistency of care and generates information on clients need to help future service planning. Authors suggest that for success of the pathway, clients & carers have to be aware that such services exist Emphasis was placed on the need for an on- going commitment to the implementation of a care pathway

10. 10 Developing a Dementia Care Pathway in Gwent Multi-agency working group established to look at developing a pathway – Psychology, Psychiatry, OT, Nursing, Social worker (No SALT available) The aim was to develop a pathway to support all service users with Dementia or where a query of dementia arises- not just those with DS given the potential increased prevalence of dementia in individuals with a learning disability

11. 11 Developing a Dementia Care Pathway in Gwent Aims of the pathway: Ensure early and appropriate diagnosis Provide a co-ordinated approach to assessment and intervention Develop intervention plans that will support both client and carers Provide a process for monitoring the person over time Support carers, clients and professionals via information and training

12. 12 The Pathway Process May be triggered from DS screening (developed alongside the pathway), via direct referral to the team or via an internal referral of an already worked with client where concerns arise Individuals over 65 years with no previous contact with LD services should be supported by Older Adult services. Pathway can be triggered if there is a query of dementia or if the client already has a diagnosis

13. 13 The Pathway Process Initial MDT discussion of the referral – any obvious causes for the presenting concerns? Case co-ordinator identified and initial information gathering undertaken Health assessment initiated Health assessment outcomes brought back to MDT discussion – if concerns exist, further multi-disciplinary assessment initiated Referral to Psychiatry Referral to OT and Psychology

14. 14 The Pathway Process Following all assessment a multi- agency review meeting is held to consider assessment outcomes, address diagnosis and begin intervention planning. On-going multi-agency review Variation recording

15. 15 Multi-agency review agenda Aim to include all professionals, carers and service user if appropriate Share and discuss assessment outcomes and diagnosis Discuss use of medication and monitoring of this Develop or amend care plans and intervention programmes Identify training and information needs – for family, paid carers, friends and relatives of the person. Consider additional referrals Review current support package e.g. day service, residential placement, level of support Risk assessment

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17. 17 Care Pathway Co-ordinator Taken on by community nurse Central point of contact for people Makes referrals to other professionals Co-ordinates and chairs multi-agency reviews Produces and circulates action plans Initiates on-going reviews and ensures action plans are reviewed and amended as appropriate

18. 18 Roles of main professionals within the pathway Community Nurse: Pathway Co- ordinator, initiates health check, ABS, Stress index Psychiatry: Assess mental state & behaviour, prescribe and monitor anti- dementia medication OT: Assessment of motor and processing skills – AMPS

19. 19 The role of Psychology in the Pathway Assessment: Detailed cognitive battery based on the recommendations of the working group for the establishment of criteria for the diagnosis of dementia in individuals with intellectual disability (AMR & IASSID 2000) Carer based assessments include: –DMR or DSDS –Reiss screen for maladaptive behaviour

20. 20 The Role of Psychology in the Pathway Service user assessments: –Test for severe impairment –Fuld object memory evaluation (modified) –Memory for sentences –Spatial recognition span –Autobiographical memory –Orientation –Simple commands –Boston naming test –McCarthy verbal fluency –the developmental test for visual motor integration Battery used flexibly dependent on service users presentation

21. 21 The Role of Psychology in the Pathway Psychological interventions: Facilitation of multi-agency case workshops to deliver training and develop intervention plans Environmental management strategies Memory aids Supporting effective communication Managing behaviours Individual and group work around ageing & dementia Leading the pathway development in the service

22. 22 Reflections on the Pathway: The pathway working group is ongoing in order to support the implementation, development and audit of the pathway. Audit undertaken after pilot period of approximately one year (to gain enough referrals to benefit undertaking an audit)

23. 23 Reflections: Benefits Systematic approach to supporting service users and carers More evidenced based approach to assessment Starting to introduce wider range of interventions for service users and carers Increased knowledge base around dementia Improved multi-disciplinary working

24. 24 Reflections: Challenges Supporting the implementation across 5 boroughs – large no of professionals to target with different working systems Selling a pathway as structuring people’s working practice rather than creating more work! Staff owning the pathway Developing a core knowledge base around Dementia

25. 25 Reflections: Challenges Training staff in the use of assessment measures e.g. OT’s with AMPS, nursing in ABS & stress index Triggering referrals to the pathway Waiting lists and how this is influenced by care pathways Takes time to develop good practice

26. 26 Reflections: Further Developments Introduce additional documentation to support the pathway Develop clearer guidelines around referral, monitoring and discharge Assessments – introduce OT screening, earlier in the pathway, carers assessments, alternatives to the ABS? Extending links with Older Adult services Additional research e.g. survey on prescribing practices for anti-dementia medication Respond to feedback from research projects currently underway in the service

27. 27 Research related to the Pathway Two projects Both undertaken with the Unit for Development in Intellectual Disabilities, University of Glamorgan

28. 28 Research related to the Pathway Project One – An evaluation of the impact of Dementia Care Pathway training workshops delivered to direct care staff Initiation of pathway depends on a person raising concerns about a service user One day workshops were delivered to 105 direct care staff Workshop comprised of lectures, small group exercises, video material, provision of references and further contacts/info

29. 29 Research related to the Pathway Training Content included; Introduction to dementia – definition, signs and symptoms, stages, different types Dementia in people with a Learning Disability – prevalence, signs and symptoms, dementia and Downs syndrome, differential diagnosis Dementia Care Pathway Interventions for supporting people with a Learning Disability who have dementia What to do if you are concerned about a service user you support

30. 30 Research related to the Pathway Methodology – Repeated measure design with all attending a workshop asked to complete a questionnaire prior to, at end of day and after 6mths Questionnaire attempted to consider knowledge base, perceived confidence and belief in ability to help a person with dementia Response rate – 100% completed questionnaires A and B, 27% completed C

31. 31 Research related to the Pathway Results; Still completing detailed statistical analysis Significant improvement in knowledge immediately post training which did reduce at 6 mths (but still significant improvement compared to pre training) Staff reported significant improvement in confidence in recognising signs and symptoms and knowing what to do post training which remained high at 6 mths

32. 32 Research related to the Pathway Discussion points; Due to relatively low response rate for questionnaire C did this introduce bias? Seemed an effective way of increasing knowledge and confidence in direct care staff What about family carers? Are there more efficient and effective ways to support staff to develop knowledge and confidence? e.g. e-learning? workbooks? bibliotherapy?

33. 33 Research related to the pathway Project Two – A qualitative study examining the experience of carers who support a person who is placed on the Dementia Care Pathway Methodology – Small scale grounded theory qualitative study using face to face interviews 6 carers to be interviewed

34. 34 Research related to the Pathway Key areas explored within the interviews; Experiences of carers supporting the person with a Learning Disability and Dementia Carer views of interventions and support provided Exploration of how the carers experience key elements of the pathway process Carers views on how the pathway process could be improved

35. 35 Research related to the Pathway Data Analysis – Themes and categories will be produced from transcripts. NVivo will be used to support coding of data. Dissemination of Findings – Pathway Working Group, those who were involved in the project, range of stakeholders who attend local planning forums

36. 36 Contact Details: Dr Clare Trudgeon Clinical Psychologist Torfaen CLDT Alders House LLanfrechfa Grange Cwmbran Torfaen NP44 8YN Clare.trudgeon@gwent.wales.nhs.uk Tel: 01633 623438 Dr Chris O’Connor Head of Psych. Services Alders House Llanfrechfa Grange Cwmbran Torfaen NP44 8YN Chris.oconnor@gwent.wales.nhs.uk Tel: 01633 623574