Supporting Adults with Learning Disabilities who Present with Dementia

1. 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)

2. 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?

3. 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

4. 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

5. 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

6. 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

7. 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

8. 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?

9. 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)