DELIVERING BETTER OUTCOMES DELIVERING BETTER OUTCOMES FOR PEOPLE WITH DEMENTIA FOR PEOPLE WITH DEMENTIA

THE NATIONAL DEMENTIA STRATEGY THE NATIONAL DEMENTIA STRATEGY AND THE LONDON CENTRE FOR AND THE LONDON CENTRE FOR

DEMENTIA CAREDEMENTIA CARE

Maria S. ParsonsMaria S. ParsonsExecutive DirectorExecutive Director

London Centre for Dementia CareLondon Centre for Dementia CareUniversity College LondonUniversity College London

Dementia in the UKDementia in the UK

• 2008 estimated 700,000 people with dementia2008 estimated 700,000 people with dementia• 2021 rise of 38% to just over 1,700,000 2021 rise of 38% to just over 1,700,000 • 68% over 8068% over 80• 62% Alzheimer’s disease62% Alzheimer’s disease• 66.5% live in the community66.5% live in the community• 36.5% in care homes36.5% in care homes• 36% of estimated £18 billion costs of care 36% of estimated £18 billion costs of care

borne by familiesborne by families• No cure -it helps to understand dementia as a No cure -it helps to understand dementia as a

disabilitydisability

London Borough of SuttonLondon Borough of Sutton

Fig 3. People aged 65 in Sutton predicted to have dementia 2008 - 2025

0

200

400

600

800

1000

1200

1400

2008 2010 2015 2020 2025

65-69

70-74

75-79

80-84

85+

Challenges in LondonChallenges in London

• Increases in prevalence of dementia in London Increases in prevalence of dementia in London boroughs estimated as circa 10% (Inner) and boroughs estimated as circa 10% (Inner) and 32% (Outer) over next 17 years.32% (Outer) over next 17 years.

• Disparities of income and wealth – groups Disparities of income and wealth – groups dependent on public services & ‘self payers’dependent on public services & ‘self payers’

• Cross cutting inequalities – dementia + low Cross cutting inequalities – dementia + low health status, social deprivation, ethnicity and health status, social deprivation, ethnicity and discrimination, social isolation and living alone.discrimination, social isolation and living alone.

• Diversity of workforce Diversity of workforce • Low level of skills and specialist knowledge Low level of skills and specialist knowledge • Complexity/gaps in health and social care Complexity/gaps in health and social care

servicesservices• Cost pressuresCost pressures

Drivers and leversDrivers and levers

• Demographic pressuresDemographic pressures• Overall low quality services and integration patchyOverall low quality services and integration patchy• November 2006 November 2006 Supporting People with dementia and Supporting People with dementia and

their Carers in Health and Social Care their Carers in Health and Social Care NICE/SCIE - NICE/SCIE - evidence base evidence base

• February 2007 February 2007 Dementia UKDementia UK Alzheimer’s Society – Alzheimer’s Society – major report – prevalence and costsmajor report – prevalence and costs

• 4 July 2007 4 July 2007 Improving services and support for people Improving services and support for people with dementia and their familieswith dementia and their families, NAO – services poor , NAO – services poor value for moneyvalue for money

• August 2007 Ivan Lewis announces work on National August 2007 Ivan Lewis announces work on National Dementia Strategy (NDS)Dementia Strategy (NDS)

NDS programme and timescaleNDS programme and timescale

• DH Lead David Behan, Director General of DH Lead David Behan, Director General of Social Care Social Care

• Professor Sube Banerjee, Professor of Mental Professor Sube Banerjee, Professor of Mental Health and Ageing at the Institute of Psychiatry, Health and Ageing at the Institute of Psychiatry, King's College London, & Jenny Owen, King's College London, & Jenny Owen, Executive Director of Adults, Health and Executive Director of Adults, Health and Community Wellbeing in Essex joints lead Community Wellbeing in Essex joints lead

• Neil Hunt, CE, Alzheimer's Society chairs Neil Hunt, CE, Alzheimer's Society chairs programme's External Reference Group - main programme's External Reference Group - main ‘core group’ & 3 ‘sub-groups’ ‘core group’ & 3 ‘sub-groups’

• 3 key themes: Raising Awareness, Early 3 key themes: Raising Awareness, Early diagnosis and intervention and quality of carediagnosis and intervention and quality of care

NDS TimetableNDS Timetable

• Listening and Engagement Exercises Listening and Engagement Exercises December – March 2008December – March 2008• Report from work streams to Minister March Report from work streams to Minister March

20082008• Formal consultation on the draft Strategy Formal consultation on the draft Strategy

between June and August 2008 between June and August 2008 • The final National Dementia Strategy and The final National Dementia Strategy and

Implementation Plan will be published in Implementation Plan will be published in Autumn 2008Autumn 2008• Must dos?Must dos?• Who will provide leadership at regional level?Who will provide leadership at regional level?

Improving AwarenessImproving Awareness

• Developing a better understanding of dementia Developing a better understanding of dementia by public and professionals alike by public and professionals alike

• Ensuring that better information is provided on Ensuring that better information is provided on how to seek help and what help and treatment how to seek help and what help and treatment is available; and is available; and

• Tackling the stigma and misunderstandings Tackling the stigma and misunderstandings

that currently existthat currently exist• Not confined to general public – low in healthNot confined to general public – low in health

services particularly acute sectorservices particularly acute sector

Early Diagnosis and InterventionEarly Diagnosis and Intervention

• GPs reluctant to diagnose or misdiagnoseGPs reluctant to diagnose or misdiagnose• Only a third of people with dementia receive a Only a third of people with dementia receive a

formal diagnosis at any time in their illness.formal diagnosis at any time in their illness.• Late diagnosis reduces ability to plan and Late diagnosis reduces ability to plan and

make choice. make choice. • Early diagnosis and intervention services not Early diagnosis and intervention services not

universal or comprehensiveuniversal or comprehensive• Inherent tension between early diagnosis and Inherent tension between early diagnosis and

social services as stringent eligibility criteria social services as stringent eligibility criteria of CSSRs mean those deemed eligible for of CSSRs mean those deemed eligible for services have critical needs/severe dementiaservices have critical needs/severe dementia

Improving the Quality of Care for Improving the Quality of Care for People with DementiaPeople with Dementia

• Quality of careQuality of care• CommissioningCommissioning• Supporting the workforceSupporting the workforce• Monitoring and regulationMonitoring and regulation• Care pathwaysCare pathways• Acute hospital careAcute hospital care• Liaison and linksLiaison and links• Whole systems/integrationWhole systems/integration

London Centre for Dementia CareLondon Centre for Dementia Care• Established 1998 at University College London Established 1998 at University College London • A Dementia Services Development Centre for A Dementia Services Development Centre for

the capital (DSDCs provide information, the capital (DSDCs provide information, education, consultancy and research for education, consultancy and research for professionals and care staff professionals and care staff

• Executive Director: Maria Parsons. Chair of Executive Director: Maria Parsons. Chair of Strategy Group: Professor Martin Orrell + CEs Strategy Group: Professor Martin Orrell + CEs and senior managers from statutory & and senior managers from statutory & voluntary sector and academiavoluntary sector and academia

• 2006 2006 for dementiafor dementia provided 2 year Strategic provided 2 year Strategic Partnership grantPartnership grant

VisionVision

The London Centre for Dementia Care will The London Centre for Dementia Care will promote and facilitate the dissemination promote and facilitate the dissemination and implementation of best practice in and implementation of best practice in dementia caredementia care

Strategic AimsStrategic Aims

• Act as a hub and portal for professionals and Act as a hub and portal for professionals and care staff to information and knowledge in care staff to information and knowledge in dementia caredementia care

• Contribute to developing a skilled workforceContribute to developing a skilled workforce• Facilitate the transfer of knowledge from Facilitate the transfer of knowledge from

researchresearch

• Provide expertise to commissioners and Provide expertise to commissioners and providersproviders

LCDC Development and eventsLCDC Development and events

• 2007 Feasibility study2007 Feasibility study• 2008 Business Plan, Governance and 2008 Business Plan, Governance and

Fundraising Strategy Spring 2008Fundraising Strategy Spring 2008• What works in dementia care? April 8, UCLWhat works in dementia care? April 8, UCL• Dementia Summer School July 1 UCLDementia Summer School July 1 UCL• Programme of development includes website Programme of development includes website

and database of good practiceand database of good practice• Dementia NetworkDementia Network

LCDC Services and activitiesLCDC Services and activities

• Information and inquiry service Information and inquiry service • Dissemination of researchDissemination of research• Quarterly Margaret Butterworth Care Homes Quarterly Margaret Butterworth Care Homes

ForumForum• LCDC Newsletter (1000 circulation) 3 times a LCDC Newsletter (1000 circulation) 3 times a

yearyear• Quarterly Dementia Education and Training Quarterly Dementia Education and Training

Network (DETN) withNetwork (DETN) with for for dementiadementia • Seminars and conferencesSeminars and conferences• Consultancy projects Consultancy projects

Current projectsCurrent projects

• DBA Inclusive Challenge DBA Inclusive Challenge (Dementia) with Helen (Dementia) with Helen Hamlyn Centre, RCAHamlyn Centre, RCA

• Sutton Council population Sutton Council population needs and servicesneeds and services

• DementiaSpace and DementiaSpace and Dementia Forum – Dementia Forum – workforce development workforce development for national care home for national care home companycompany

People at the London Centre for People at the London Centre for Dementia CareDementia Care

• Professor Martin Orrell, Professor Martin Orrell, UCL, Chair, LCDC Strategy UCL, Chair, LCDC Strategy GroupGroup

• Barbara Stephens, Chief Barbara Stephens, Chief Executive, Executive, for dementiafor dementia

Vice Chair, LCDC Strategy Vice Chair, LCDC Strategy GroupGroup

• Maria Parsons, Executive Maria Parsons, Executive Director, LCDCDirector, LCDC

Do contact usDo contact us

Maria S. ParsonsMaria S. ParsonsExecutive DirectorExecutive DirectorLondon Centre for Dementia CareLondon Centre for Dementia CareUniversity CollegeUniversity College67-73 Riding House Street67-73 Riding House StreetLondonLondonW1W 7EJW1W 7EJm.parsons@ucl.ac.ukm.parsons@ucl.ac.ukT 0202 7679 9588T 0202 7679 9588M 07801 509993M 07801 509993

www.ucl.ac.uk/dementia www.ucl.ac.uk/dementia