CArers of people with Dementia: Empowerment and Efficacy via Education (CAD: E 3 ) A multi-disciplinary study of the impact of educational interventions on the quality of life and outcomes for informal carers of people with dementia Despina Laparidou, Dr Jo Middlemass, Prof Terence Karran, Dr John Hudson, Paul Mansfield, Dr Karen Windle, Prof A. Niroshan Siriwardena.

Theoretical background The major issues faced by carers of people with Dementia include: –Psychological distress. Depression and anxiety Lower self-efficacy Feelings of entrapment and guilt –Physical strain, fatigue, burnout. –Poor coping skills, social isolation and lack of support. –Legal and financial matters. –Communication, safety and organisation in the home.

Theoretical background Education and skill-building programmes for carers. –Benefits include: increased caregiver knowledge; reduced stress and depression levels; increased coping ability; increased self-efficacy; delayed residential care placement. Multi-component interventions, that include active participation of carers and care recipients, produce the most significant results and are recommended in the National Dementia guidelines.

Theoretical background Carers are: –Able to identify subtle behavioural changes in people with dementia, –Invaluable sources of information, concerning the health of those in their care, –Ideally placed to assess and monitor the patient with dementia from initial suspicions of changes in behaviour, to ongoing monitoring progress and medication. Locally, a Consultation Evaluation Report highlighted the following areas that matter to people with dementia and their families: –Being involved in decision making on treatment and care, –Being given better information about the potential effects of dementia and the help and advice available. Using carers in a more formal monitoring role is an under-researched area.

Aim of the study The overarching aim is to improve carer and patient outcomes by developing an educational intervention for carers of people with dementia, with an emphasis on carers having a greater involvement by undertaking a more active and participative monitoring role.

Research questions 1.What patient and carer outcomes have been measured in studies of educational interventions? 2.What educational interventions have been found to be effective for carers of people with dementia? 3.What educational interventions have been found to be cost- effective?

Research questions 4.What research is there, if any, on the effect of carers of people with dementia using validated instruments to monitor the progression of dementia? 5.What are the perceptions and views of carers and patients on potential educational and monitoring interventions? 6.What are health professionals’ perceptions and views of a formal monitoring role for carers of people with dementia?

Research design Mixed methods: –Systematic Review, –Qualitative study, Interviews & focus groups with service users, Interviews & focus groups with healthcare professionals. –Leading to a feasibility study and a randomised controlled trial (RCT).

Phase A: Systematic review Evidence-base derived from educational interventions for carers of people with dementia. –Main aim: systematically review the literature on interventions that individually or in combination have been shown to be effective/cost-effective for improving outcomes for carers and patients with dementia, and particularly Alzheimer’s disease (AD). –Secondary aim: explore the perceptions and views of healthcare professionals, carers and patients on educational/monitoring interventions.

Phase A: Systematic review 81 papers reviewed –55 papers examined psychoeducational interventions, –19 papers examined educational interventions, –14 papers examined multicomponent interventions. Most studies were of fair/moderate methodological quality.

Phase A: Systematic review Most commonly reported care recipient outcomes: –Frequency and severity of behavioural problems; –Cognitive status; –Institutionalisation rates; –Quality of life (QoL); –Depression. Most commonly reported carer outcomes: –Burden; –Depression; –Self-efficacy; –Knowledge around dementia; –QoL; –Reactions to patients’ cognitive, functional and behavioural problems; –Well-being; –Stress/distress.

Phase A: Systematic review Psychoeducational interventions –Successful in improving a number of carer-related outcomes, such as depression, burden, self-efficacy and knowledge. –Less successful in improving patient-related outcomes, such as QoL, functional and behavioural problems, & institutionalisation.

Phase A: Systematic review Educational interventions –Successful in improving most carer and patient related outcomes. –Except for carer depression, care recipient symptomatology and institutionalisation. Multi-component interventions –Effective across various outcomes. –Mixed results for care recipient institutionalisation.

Phase A: Systematic review Cost-effectiveness –One study reported that psychoeducational interventions for carers of people with dementia were not cost- effective. –One study showed that a multi-component study alleviated some costs of caregiving. –A systematic review reached no conclusion.

Phase A: Systematic review No studies were identified to address Research Questions 4, 5 and 6, supporting the notion that the area of carers undertaking a more active monitoring role of their care recipients’ disease is a new and under-researched field.

Phase B: Qualitative study with carers Focus Groups and Interviews with carers & their care-recipients: –Preferences on future educational interventions, –Perceptions of the feasibility of the proposed intervention, –Advantages, disadvantages and implementation of an educational/monitoring intervention.

Phase C: Qualitative study with healthcare professionals Focus groups & interviews: –Perceptions, views and attitudes to carer input into monitoring, –What factors would enhance their readiness to accept the results of formal monitoring by carers.

Phase D: Feasibility study Feasibility study –Based on results from: Systematic Review, Qualitative study with carers, Qualitative study with health care professionals. –Cluster randomised controlled study of a complex educational intervention for improving outcomes for carers of people with dementia and their care recipients. –Demonstrate whether such an intervention/study is feasible, and prepare a randomised controlled trial protocol suitable for further research funding.

CAD: E 3 Multidisciplinary Project Team (in alphabetical order) Dr John Hudson –Senior Lecturer in Cognitive Neuroscience and Neuropsychology Professor Terence Karran –Professor of Higher Education Policy & Study Lead Despina Laparidou –Research Assistant (Background in Health Psychology) Paul Mansfield –Senior Lecturer in Social Work & Policy Dr Jo Middlemass –Research Fellow & Research Lead of the study (Background in nursing) Professor A. Niroshan Siriwardena –Professor of Primary & Pre-Hospital Health Care and Academic General Practitioner Dr Karen Windle –Reader in Health (Background in Health & Social Care Policy)

Thank you for listening! For more information on the CAD:E 3 Project Contact Despina Laparidou: