Learning Disability & Dementia Pathway 2018 update Learning Disability & Dementia Pathway Referral to Community Learning Disability Team (Single Point of Access) – (can be from Downs Syndrome Health Screening Clinic). Add to Psychology & OT waiting lists. Nursing / medical colleague identified as ‘interim coordinator’ and to send GP/referrer letters (see over). Screen 1. GP Physical Examination & Blood Screen: B12, FBC, Folic acid, Urea & electrolytes, blood sugar, thyroid function test, liver function test, lipid profile, bone profile & urine analysis. 2. Community Learning Disability Nursing Assessment. Tool to be used as clinically relevant, will cover: History: from client and main carer/referrer, collated over settings. Changes in mood, mobility sleep, memory, medication, behaviour, environmental factors, physical, appetite, life events. Vision & Hearing check . Confirm: Certificate of incapacity (Section 47 - AWI Act), social work involvement and consent to share information. Check : Results of GP tests and Advise client & carer to go back to GP for results (target 4 weeks) Health Needs Identified: PAUSE progression through pathway Address health need Do not assess while unwell Use clinical judgement to determine whether to repeat stage 1/2 Care pathway not appropriate: Inform referrer Discharge/refer onto appropriate service Provide Dementia Information Pack LD Nurse to complete sections 1-3 of evaluation form & submit Remove from Psychology & OT waiting lists 3. Multidisciplinary Team Discussion at CLDT meeting. Set date for Stage 8 meeting if possible. 4. Care pathway appropriate - continuing concerns about dementia Allocation of Case Co-ordinator (most relevant professional; no more than 3 on caseload). Inform Social Work of referral & assessment if open or refer to social work if not open. Period of assessment: With person and informant e.g. carer (target 16 weeks Steps 4 - 8) Provide Dementia Resource Pack Assessment 5. Psychiatric assessment: Attention to depressive disorder and assessment of mood. Referral to specialist assessment e.g. Neurology (EEG and Neuroimaging) if necessary. Assessment of need -Physiotherapy -Dietetics -Speech and Language Therapy -Podiatry -Pharmacy 6. Psychological assessment: Cognitive ability, memory and behaviour. 7. OT assessment Daily living skills. 8a. Professionals Diagnostic Meeting: Yes/No/Maybe/Don’t Know No: Mental health or behavioural issue diagnosed: Treat Refer on Discharge Complete evaluation / audit form 8b. Maybe/Don’t Know: Patients and carers offered appropriate information. Repeat Psychology & OT assessment after 6 months. Record on CLDT minutes date of review and close episode of care in meantime. 8c. Yes: Share diagnosis with patients/carers – 2 professionals present (target 4 weeks Steps 8a – 8c) Offer tailored information, if possible clarify dementia type SPOA MUST BE INFORMED of confirmed diagnosis. Diagnosis 9. Initial multi-agency review: Arrange meeting multi-agency review meeting Develop intervention plan – use Post Diagnostic Checklist to guide Future planning/provision, family/carer support. Staff training offered if required. Consider use of Quality Outcomes Measure for Individuals with Dementia (QOMID) to help inform the support as dementia progresses Allocate Post Diagnostic Co-ordinator to follow up for a period of one year (unless client / guardian specifically opts out > if this happens, let SPOA know). Use Post Diagnostic Checklist over this year as needed to monitor progress. Discharge from dementia pathway. Specific professions may remain involved if unmet care need remains. Ensure staff and Social Work aware of referral route back into Community Learning Disability Team. Cases with confirmed diagnosis should receive follow-up for a period of 1 year by post diagnostic coordinator. Page 1 of 2

7. AMPS assessing motor skills and adaptive functioning. 2018 update Assessment of need: Assessment of other issues relevant to client which may or may not be relevant to potential diagnosis (requires new referral to team). Based on issues raised at multidisciplinary meeting or by staff/carers. For example, Pharmacy: review of medication in order to identify and minimise use of drugs, including over-the-counter products, that may adversely affect cognitive functioning. Notes: Indicators for referral: Forgetfulness, confusion, loss of skills, behavioural or mobility change. Concerns raised in Downs Syndrome Health Clinic (depending on assessments completed in Clinic, may enter pathway at stage 1 or 3). Screening 1. In all cases GP will be asked to carry out physical examination and blood screen unless there are exceptional circumstances, when it will be dealt with if possible by the Community Learning Disability Team (CLDT). If referral comes through GP they will be sent standard letter asking for relevant tests (see letter). If referrer is not GP, GP sent standard letter informing them of referral and asking for tests; in this case letter to go to referrer asking them to ensure appointment is made for client with GP. Letters sent by most relevant individual in team – normally LD Nurse unless other profession already has significant involvement. 2. History: Information likely to be obtained via local nursing assessment, duplication is not required. Will cover: Nature of problems, origin, rate of progress, presence of epilepsy. Overall functioning and personality. Family and personal medical history; mental health problems, including past and present medical conditions. Environmental factors: staffing levels, quality of placements, other people currently involved e.g. day centre staff, respite etc. Checking health: medication, epilepsy, eyes, ears, mouth, feeling well, sleep, pain, sexual health, diet, exercise, mobility, continence, mental health, feelings, smoking and alcohol, health screening investigations. Other assessments done as required. Check results from GP tests. 3. Discussions to take place at CLDT meeting. Case notes of individual professions should be updated with relevant decisions and actions. If not appropriate for pathway nominate team member to inform referrer etc. Assessment 4. Continuing concerns: Provide Dementia Resource Pack. Allocate Case Coordinator (role not to always be done by nursing colleagues): point of contact for client and staff, inform social work, follow up on assessments, arrange professionals meeting and initial multiagency review, ensure minutes are taken and circulated. See additional information sheet for further guidance on case coordinator role. 5. Neuro-imaging: May not be practical or necessary as routine investigation for assessment of dementia but may be of value when vascular dementia or other brain lesion suspected. 6. CAMDEX-DS, DLD and ABDQ assess the skills and abilities which may change in the presence of dementia. Further assessments may also be considered. 7. AMPS assessing motor skills and adaptive functioning. Diagnosis 8a. Outcome of assessments agreed on by multidisciplinary team. 8b. If outcome unclear, repeat Psychology and OT assessment at 6 months as appropriate. Use clinical judgement in cases where other health needs are present to determine whether repeat of stage 1/2 assessment is required. 8c. If outcome ‘yes’, share diagnosis with family/carers after professionals meeting (8a), before multi-agency review. Diagnosis to be shared in sensitive and appropriate way by at lesat 2 professionals within the team, determined by who is best placed to do it. May not be Case co-ordinator in some cases. Attention must be given to explaining diagnosis to client if appropriate. SPOA must be informed of diagnosis so information can be passed on for HEAT target. Need to pass on Name, CHI, Area, Type of accommodation, Date of Diagnosis, Name & Profession of post diagnostic coordinator. 9. Professionals meeting outside of CLDT meeting. All relevant services invited including Social Work and GPs. Patient / Family attend if possible and appropriate. Consider holding meeting at local health centre. Use ‘Post Diagnostic Intervention Checklist’ to guide meeting and plan. Allocate Post Diagnostic Coordinator to follow up for one year (suggested four contacts, can be by phone). PD Coordinator role taken on by most appropriate professional for that case, and agreed by team. QOMID tool available on shared drive Interventions focused on needs of the individual: Physical health Continence Eating/drinking Mobility Strategies to aid communication Strategies, equipment and aids to maintain mobility. Prescribing of memory enhancing medication. Mental health and behaviour interventions. Self-help skills Occupation/activity Communication Training for staff, advice for staff and Social Work (future provision) All up to date paperwork is on shared drive Page 2 of 2