Psycho-social interventions for Younger People with Dementia

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1 Psycho-social interventions for Younger People with Dementia Personal Practice & Professional Perspectives Chris Norris Reinhard Guss Jan Oyebode 1 13 October, 2016 YOUNG ONSET DEMENTIA FOR MSNAP

2 Chris Norris: a personal perspective 2 13 October, 2016 YOUNG ONSET DEMENTIA FOR MSNAP

3 A practice perspective Reinhard Guss Consultant Clinical Psychologist Kent & Medway NHS & Social Care Partnership Trust 3

Statistics and Geography 11 Memory Services 6CCGs? 1.100 pw YOD?

4 Statistics and Geography 11 Memory Services 6CCGs? pw YOD?? 94 new diagnoses Max 23, min 4/team Poor public transport All roads lead to London Gravesham, Dartford, Sevenoaks, Tonbridge, Tunbridge-Wells, Hythe, New Romney, Deal, Sandwich 4

5 Post diagnostic interventions offered All YOD seen for cognitive assessment by Psychology All assessed by Psychology have one individual post-diagnostic appointment: feedback, strategies, groups Living well with dementia courses/groups: 4 6 sessions CST Groups: 8 double sessions 5

6 Adaptations for YOD Living well with YOD, CST for YOD Joining across localities Delaying starting on programmes Evening/weekend groups Changes to content Language use Music Issues covered, e.g. benefits in YOD Art materials, reminiscence cards 6

7 Limitations & learning Geography and transport: rural vs city Rarer dementias more varied types genetics More diversity of needs Where next? Back to all age groups? Specialist rarer dementia groups, e.g. Queens Square Individual sessions 7

8 The published perspective Jan Oyebode Professor of Dementia Care University of Bradford 8

9 Increased interest but lack of research evidence 9 13 October, 2016 YOUNG ONSET DEMENTIA FOR MSNAP

10 Richardson et al. three studies of psychosocial interventions All concerned with meaningful activity: 2 hr a week gardening programme, Voluntary day a week work at a zoo Half day a week work in a hardware store Small numbers (12,6,7). Huge range of positive outcomes October, 2016 YOUNG ONSET DEMENTIA FOR MSNAP

11 Other intervention studies Football (Carone et al., 2014) Life enhancing activities for family caregivers of people with FTD (Dowling et al., 2014) Tailored activities programme (O Connor et al, 2015) Assistive technologies (Jentoft et al., 2014) 11 For carers: APTITUDE for carers of people with FTD (Mioshi et al.,2013) Life enhancing activities for family caregivers of people with FTD (Dowling et al., 2014) 13 October, 2016 YOUNG ONSET DEMENTIA FOR MSNAP

12 RHAPSODY: Ongoing intervention study To produce an educational, web-based, interactive, e-learning programme for carers Based on a thorough understanding of needs and services across 6 countries. UK team: Heather Gage, Surrey, Jan Oyebode and Sube Bannerjee with Bridget Jones, researcher 12

Conclusions Having age appropriate services is vital Content Delivery time, place and mode Suitable for wide range of types of dementia Research evidence lags behind clinical practice Focus on needs

13 Conclusions Having age appropriate services is vital Content Delivery time, place and mode Suitable for wide range of types of dementia Research evidence lags behind clinical practice Focus on needs & experiences not interventions Studies are small scale, often not controlled More small scale, controlled studies needed Joining personal, practice and research perspectives is important to deliver CANS 13

14 References Carone et al. (2014) Football and dementia: A qualitative investigation of a community based sports group for men with early onset dementia. Dementia. E-Pub. Dowling G. et al. (2014) Life Enhancing Activities for Family Caregivers of People With FTD. Alz Dis Assoc Dis 28: Jentoft, R. et al. (2014) The use of assistive technology in the everyday lives of young people living with dementia and their caregivers. Can a simple remote control make a difference? Int Psychogeriat., 26, Mioshi, E. et al. (2013) Improving burden and coping skills in frontotemporal dementia caregivers: A pilot study. Alz Dis and Assoc Dis 27, McKinnon, C. et al. (2013) Qualitative results of a structured group program for carers of people with FTD. Int J Geriat Psychiat 28, O Connor et al (2016) Enhancing caregivers understanding of dementia and tailoring activities in frontotemporal dementia: two case studies. Disability and rehabilitation, 38, Van Vliet et al., (2010) Research protocol of the NEEDYD-study: a prospective cohort study on the needs and course of early onset dementia. BMC Geriat. 10, October, 2016 YOUNG ONSET DEMENTIA FOR MSNAP

The Dementia Community Awareness Programme: Understand Together Campaign & Dementia Elevator Project

The Dementia Community Awareness Programme: Understand Together Campaign & Dementia Elevator Project Ann-Marie Coen Dementia Elevator Project, Dublin City University What is the Dementia Community Awareness