Supporting Adults with Learning Disabilities who Present with Dementia Collaborative project between:  Gwent Healthcare NHS Trust  Monmouthshire Local Authority  Unit for Development in Intellectual Disabilities (University of Glamorgan)

People with learning disabilities who develop dementia  Dementia is more common in people with a learning disability than in the general population  The implication of dementia for the person and their carers is great  Implications for the person with dementia include not only the distressing symptoms of dementia but associated problems such as poor psychological well- being, placement breakdown and loss of contact with family and friends.  Implications for carers may be increased stress, poor physical and psychological health, severe disruption to social activities and additional financial costs  What can we do in order to support people with dementia and their carers in the best way?

The Dementia Care Pathway Aims of the pathway  Provide a co-ordinated multi-agency approach to diagnosis and intervention  Ensure appropriate and early diagnosis  To develop an intervention plan that will support the person with dementia and his/her carers  Provide a process for monitoring the person over time and making necessary changes to the intervention package  To provide appropriate information to carers and service users

The Dementia Care Pathway Essential elements of the pathway  Pathway triggered. Could be from a number of potential routes e.g. concerns identified by a carer/professional, screening programme for people with Down’s Syndrome, concerns identified by an initial assessment for another referral issue  Care co-ordinator appointed  All relevant assessments undertaken in order to make an accurate diagnosis and ensure other issues are identified and treated appropriately

The Dementia Care Pathway  Assessments will need to be multi-disciplinary and cover a wide range of areas e.g. bloods, CT/MRI scans, mental state examination, cognitive assessment, assessment of daily living skills  Intervention plan developed and implemented which should include consideration of medication, psychological interventions, environmental interventions, wider support package, identifying training/information needs of carers and risk assessment/management  Intervention plan monitored and changed over time to meet changing needs of the person with dementia and their carer

Background to UDID  Brings together staff based at the School of Care Sciences, University of Glamorgan and staff based within Bro Morgannwg NHS Trust  ‘UDID will enhance quality of life and quality of service provision for people with learning disabilities and their families/ carers via an integrated programme of research, education and practice development’  Partnership working With people with learning disabilities With their families and carers With a range of professionals and agencies

Stage 1  Staff need to understand the issues in order for the pathway to be ‘triggered’ and its potential maximised  Evaluation of staff knowledge and confidence in working with people with learning disabilities and dementia  Training in issues and role of care pathway  Survey pre and post training and at six months

Stage 2  Interviews with families  Liase with clinicians to find suitable families  Draft questions What are the key experiences of families living with learning disability and dementia? What are the views of families on care provided as part of the ‘dementia care pathway’? What lessons can be learnt about the care priorities of families living with learning disability and dementia?

Next challenges  Stage 1 Complete training and data collection Analyse surveys  Stage 2 Seek R&D approval Seek LREC approval Identify potential families Visit families and begin consent process Conduct interviews (approx May 2007)