dementia challenge conference presentations

NHS South of England

Dementia Challenge Conference

Tuesday 29 May 2012

Welcome and introduction

Dr Geoffrey Harris, Chair,

NHS South of England

Key note address

followed by Q&A session

Paul Burstow,

Minister for Care Services

The perspective of a person with

dementia

Dr Jennifer Bute

A glorious opportunity

Privilege of 3 Perspectives: GP-Carer-Patient My family and how I got my diagnosis

Memory & what I believe can be done

What I did not know as a GP & hints

I will cover

5 years

to get a diagnosis

Peter Garrard did work on

picking up clues on early signs

of Dementia in literature and

speeches

Iris Murdoch & Harold Wilson

reading aloud - mental arithmetic - writing

Prof Ryuta Kawashima

Unused muscles atrophy unused neurons die

Hallucinations Time Travel

As a GP I never asked

about hallucinations

I did not understand Time

Travel, visual spatial issues

There is always a reason

Feelings remain

Patterns continue

Coming on the wrong day

Misunderstanding Rx

Using items inappropriately

Loss of weight

Getting lost when driving

A Choice

How we view Dementia

What we do about it

How we support others

www.gloriousopportunity.org

The Dementia Challenge

Peter Watson

Uniting Carers Dementia UK

The Carer’s Perspective

What’s important to help a carer cope

What it’s like being a carer of a person with dementia

What you can do to help

Navigation

Work &

Interests Conversation

Social

Interaction

Forgetfulness

Appearance

Becoming

a Danger

Stopped

Caring

About Me Personal

Hygiene Continence

Frustration

Annoyance

Dislike

Uncertainty

Denial

Despair

Sadness

Change in Personality

I lost my beautiful, happy, jolly, friendly, loving, caring, wife

Struggle to have a life of your own

Struggle to earn a living

Lack of sleep

Funding to pay for help is a lottery

Loss of friends

Loss of social contact

Important things to help a carer cope

Timely Information Education / Advice

Financial Support Quality services

Respite Support

Ring-fence money to help carers

Do the straightforward practical things well

3 Things you can do to help

Be INNOVATIVE & provide emotional & psychological support for carers

Key note addresses

Question and answer session

Better research

Dr David Cox, Deputy Director –

Research Finance & Programmes

Research & Development Directorate,

Department of Health

www.dendron.org.uk www.dendron.org.uk

Delivering better research (or delivering more research!)

Professor Roy Jones

Dementia Research Director, SW DeNDRoN

RICE Bath and NHS Bath & NE Somerset

The PMs Challenge on Dementia

• Driving improvements in health and care

• Dementia friendly communities that understand how to help

• Better research

All change and actions should be underpinned by research,

eg change in acute hospitals, changes in social care, raising

awareness, new tools for diagnosis, assessment and

treatment.

Individual initiatives are important but often based largely on

the person(s) carrying it out and their enthusiasm – research

demonstrates its generalisability, cost-effectiveness etc

It is crucial therefore to integrate research with practice

Dementia Research in the South

• Pre-DeNDRoN

– 2 of the oldest memory clinics in the UK: Bristol, Bath

– 3 universities with a strong track record in dementia research:

Bristol, Oxford, Southampton

– 3 of the best established and most well-known UK centres for

dementia commercial clinical trials: Bath, Southampton, Swindon

• Post-DeNDRoN (since 2006)

– Three Local Research Networks (LRNs): South West, South

Coast and Thames Valley

– Extended opportunities with other memory clinics

– New universities developing dementia research portfolios

– More centres for commercial and non-commercial research

(0.1%)

(0.6%)

(0.0%)

(0.7%)

(0.5%)

(2.4%) 53

(1.1%)

(5.8%)

(0.6%)

(0.4%)

(0.3%)

NIHR Portfolio dementia research activity

across NHS South of England 2009-2012

Number of people in studies Total 1900

(Percentage of dementia prevalence) Average 1.1%

Top 10 recruiting trusts in region: 2009-2012

Oxford Health NHS Foundation Trust 506

Oxford University Hospital NHS Trust 310

NHS Bath and North East Somerset 174

Berkshire Healthcare NHS Foundation Trust 165

Southern Health NHS Foundation Trust 148

Sussex Partnership NHS Foundation Trust 114

Kent & Medway NHS & Social Care Partnership Trust 85 Avon and Wiltshire Mental Health Partnership NHS Trust 73

Devon Partnership NHS Trust 71

NHS Dorset 54

��

Delivering research to improve care: GERAS

“The study team are delighted with the UK

performance. I'm in no doubt, DeNDRoN played a critical

role in driving delivery and the UK success story.”

Dr Pearson

Dr Korenteng Dr Loughlin

Dr McCleery

Prof Jones

Dr Dukes

Dr Simpson

��

Delivering research to improve care: DOMINO (Donepezil and memantine for Alzheimer’s disease,

New Engl J Med 2012; 366: 893-903 )

“For the first time we have robust and compelling evidence

that treatment with these drugs can continue to help patients

at the more severe stages”

Dr Pearson

Dr McShane

Prof Katona

Prof Jones

Prof Holmes

Prof Howard, King’s

The portfolio is growing

• The NIHR has just completed a first-ever themed call for

dementia research proposals with up to 18 projects being

funded ranging from work on better diagnosis to

improving care in a wide range of settings (individual's

own homes, residential care & specialist hospitals)

• DeNDRoN gave advice on the feasibility and deliverability

of the proposals including site-level input and patient &

public involvement. We are well equipped to support

these projects and to work with both old and new centres

• DeNDRoN research studies in dementia in England have

grown from 25 in 2006/07 to 81 in 2011/12 with 64

studies open to recruitment in May 2012

Embedding dementia research in the NHS

Strategic Collaboration

• Clinical Commissioning Groups (CCGs)

• Clinical Senates

• Academic Health Science Networks (AHSNs)

Developing Registers in dementia/ memory clinic services

• 10% participation is the goal

• Memory service accreditation

• Nationally consistent system (RAFT: Recruitment and

Feasibility Tool)

Medical academics

• must “drive research into the DNA of the NHS”*

*Prof Michael Rees – BMA Medical Academic Staff Committee, May 2012

DeNDRoN RAFT: a nationally consistent

system for supporting participation in research

• Patients and carers offered - as part of core clinical

pathway – opportunity to register interest in being

contacted about appropriate research

• Routinely collected data used to conduct feasibility

assessments and to identify people for research

• Patients contacted according to the ethics approval and

research governance arrangements for specific studies

DeNDRoN is leading a partnership of Trusts, Universities,

Charities and commercial suppliers to deliver the tools

necessary for NHS dementia services in the region to

participate

Why get involved with research?

• Good for patients and their families

– Like to know that their medical team are aware of latest research;

chance to get the latest treatment

– Get more contact than usual with medical and other staff

– Altruism: like to feel even if not helping them that it may help others

(including their own family)

• Good for the NHS

– Only way to properly evaluate any new initiative or treatment

– Only way to develop new medicines, treatments, investigations etc

– Good to be embedded in the philosophy of every NHS organisation

– Research can provide funds and extra staff of a high calibre

• Good for society and the wider economy

Working together to deliver on the challenge

• The region has solid research foundation to build on

• The number of studies is increasing

• Research needs to be embedded in core NHS structures

• Each trust needs to run a register

Next steps:

• All NHS trusts to contact LRNs re RAFT

• Leaders developing CCGs, Clinical Senates and AHSNs

to include LRN Directors/ Research Directors in process

• If not a centre for a study, consider working with nearby

centres (to maximise patient involvement but minimise

travel)

Contact

Helen Collins

Research Network Manager

Thames Valley DeNDRoN

T: 01685 01865 234607

Email: helencollins1@nhs.net

David Higenbottam

South Coast DeNDRoN

T: 023 8047 5123

Email: david.higenbottam@southernhealth.nhs.uk

Mary Griffin

South West DeNDRoN

T: 0117 3784239

Email: mary.griffin@awp.nhs.uk

Better Research

Lunch and exhibition

Improving health and care

Sir Ian Carruthers OBE

Chief Executive NHS South of England

and Chair, Dementia Champion Group

Dr Kate Jefferies – Psychiatrist and EQ

Dementia Lead

Dr Terry Lynch - GP and EQ Primary Care

Dementia Lead

How Clinical Measurement Drives

Improvement in Assessment and

Diagnosis of Dementia

43% of people with Dementia in

the UK have been formally

identified

SEC Dementia Prevalence 2011 (Source: Mapping the Dementia Gap 2011 Alzheimer’s Society)

Brighto

ussex D

Hastings &

Coasta

ussex P

Diagnosis Rates – length of time

taken to receive a diagnosis

Up to 12 months 22%

1 – 2 years 37%

3 – 4 years 23%

5 – 6 years 5%

Over 6 years 3%

Don’t know 5%

Source: Dementia 2012: A National Challenge, Alzheimer’s Society

Usefulness of Diagnosis • People will have control over their lives

and support to do things that matter to

• People will have access to adequate

resources that enable choice of where and

how they live

• People can make decisions about the care

they want in later life

Clinical

Indicator

Patient Reported Outcome

Patient

Experience

Triangulating measures

FILM CLIP

Improving Outcomes Pneumonia 2010 Data 2011 Data

Reduction in Re-admissions 15.69% 15.00%

Reduction in Mortality 28.70% 25.36%

Reduction in length of Stay 10.24 9.75

Heart Failure

Reduction in Hospital Admissions (per 1000 admits) 5.74 5.47

Hip & Knees

P<0.05

Challenges

• Data sharing across all communities

• Different processes

• Different information systems

• ICD10 coding not used in all organisations

• Engagement with Primary Care & CCGs

Not a sprint

A marathon

Dementia Care in the acute hospital

Dr Chris Dyer, Consultant Geriatrician

1. To highlight improvements we can all make

in dementia care in hospital

2. To describe the RUH ward charter mark as a

driver for change

Common clinical situation Mrs Jones: 83 year old lady found on the floor

On admission, she seems to be talking to herself, but it is hard to understand what she is saying.

She has an anxious demeanour and repeatedly pulls at her nightclothes.

She argues with the staff, angrily refuses to have a blood sample taken, and won’t eat her breakfast.

Drivers for improved care

1. Size of problem:

670,000 people with dementia in England

A quarter of hospital beds

2. Evidence of inadequate care

CQC inspections

Recent hospital scandals

National dementia audit

3. National and NHS South priority

4. RUH Quality Accounts & CQUIN

Dementia Strategy Group

Kicked off by workshop 2008

Enthusiasts engaged

Alzheimer’s Society and Alzheimer’s Support

involved

Some early wins

RUH Dementia Strategy

Improved quality of care in general

hospitals

Awareness training for all

Review Paperwork

Develop MHLT Protocol for

referral

Identify cognitive

assessment tool

Develop ward based training

packages

Early assessment carers and

family

Develop Pathway

Some of our team

Emma Flannery, Rena Cottis Alzheimer’s Society

Stephany Bardzil Alzheimer’s Support, Wiltshire

Jane Davies Matron for Dementia Care

Sue Leathers Matron for Older People

Jacqui Young Quality Improvement lead

Sharon Manhi Head of Quality Improvement

Jon Willis Ward Manager

Alice Rigby Senior Sister

Theresa Hegarty Head of Patient Experience

What is needed?

1. Enthusiasm and

commitment

2. Clinical – executive

partnership

3. Trust board engagement

1. Respect, dignity and appropriate

5. Nutrition and hydration needs

are well met

7. Ensure quality of care at

the end of life

6. Promote the contribution of

volunteers

4. A dementia friendly hospital

environment; minimising

2. Agreed assessment,

admission and discharge

processes with a needs specific

care plan

3. Access to a specialist older people’s mental

health liaison service

8. Appropriate training and workforce

development

What are we proud of?

Good engagement, dementia events

Strong links with carer groups

Volunteer befriending scheme

Environmental change and funds

Ward charter mark a key driver

The RUH dementia charter mark

Set of standards developed by RUH Dementia

Strategy Group

Awards for wards and departments who have

made progress in achieving the standards

Incorporated into NHS South West standards

Key points

Patient focused and “stretching”

Within the ward’s power

17 categories

Assessment by observations of care and

audit by expert team

Standard - Respecting and caring

for people with dementia

Method of Measure

All staff talk to patients and visitors in a professional, caring and courteous manner

Observations of care

Feedback to the ward in terms of compliments and complaints

2. Patient care is person-centred as evidenced by observation of staff interaction with patients

Direct ward observation

3. Appropriate risk assessment will be done on all patients who are at risk of leaving ward

Medical records check

4. All patients newly prescribed anti-psychotic medication will be referred to Mental Health Liaison Service.

Check drug charts with ward pharmacist

Standard –Meeting nutritional needs

Method of Measure

All patients have a weight assessment on admission and at discharge (95% standard)

Nursing records

2. All patients will be assessed using the MUST tool – 95% standard

Nursing records

3. There should be flexibility in provision/ presentation of food – e.g. Snacks/ finger

foods offered; recognising some patients may take a long time to eat a meal

Inspection

4. Mealtimes – recognition of need to protect; carers encouraged to visit if they wish to

Lunchtime review

5. Staff will ensure all patients are able to reach and to eat their food & drink with assistance given if necessary

Inspection

Standard – The Ward Environment

Method of Measure

Signage must be appropriate for people with dementia

Ward audit using tools of National audit

2. Patients are able to see a clock from their bed area

Direct ward observation

3. Boredom is prevented by regular ward activities

Ward review and discussion with staff and patients

Standard – Suitability of staffing

Method of Measure

1. >50% of staff to have attended formal dementia

training in last 2 years

Review of training roll

Traffic Light Status of Spreading: Dementia Charter Mark: MIDFORD WARD

Measure Measure description Status Measurement method Detail / Comments

Respecting and Caring for People with Dementia

RCPD 1 There is a system to detect cognitive impairment in relevant patients on the ward

Ward inspection of notes Use of cognition screening

Good use of forget- me -not flower. Patients with FMN all had MMSE. Also evidence of documented capacity assessments for patents with dementia.

RCPD 2 There is literature on the ward that can be understood by patients with early dementia and that can be used by their carers, and is accessible e.g. on ward displays

Review of literature

Limited literature available for patients and carers. Display about dementia on ward notice board.

RCPD 3 All staff talk to patients and visitors in a professional, caring and courteous manner

Observations of care Feedback to the ward in terms of compliments and complaints

Staff professional, courteous, polite and appropriate in all interactions

RCPD 4 Patient care is person-centered as evidenced by observation of staff interaction with patients

Direct ward observation Excellent interactions between all staff, nursing, allied and support with patients noted. Supervision of a group of patients with dementia by HCA witnessed as part of assessment.

RCPD 5 Patients and carers feedback demonstrates high levels of satisfaction Standard = 90%

“Patient Experience Tracker” and / or compliments/ complaints

Patient satisfaction cards have been in use for the past 2-3 months. No feedback as yet. Not part of PET scheme. Only 1 new complaint in past 3 months.

RCPD 6 Appropriate risk assessment will be done on all patients who are at risk of wandering Standard = 90%

Medical records check

All dementia patient records checked and appropriate risk assessments in place with updates where necessary.

RCPD 7 All patients newly prescribed anti-psychotic medication will be referred to Mental Health Liaison Service. Standard =90%

Check drug charts with ward pharmacist

Evidence of mental health liaison referral for patients newly prescribed anti psychotic medication.

The Ward Environment

WE 1 Signage must be appropriate for people with dementia

Ward audit using tools from National Dementia Audit

WE 2 Patients are able to see a clock from their bed area

Ward check New clocks have been ordered for all bays and side rooms.

WE3 Boredom is prevented by regular therapeutic sessions or activities

Ward review – wards may include many activities such as art therapy, music, gentle hand massage etc

Therapeutic activities include a Wednesday morning coffee club run by the OT’s, PAT dog, music therapy. Cards, drafts & jigsaw puzzles on ward. At the time of assessment, a group of patients with dementia were sat in a bay all around a table conversing & looking at magazines.

Meeting Nutritional Needs

MNN 1 All patients will have a weight assessment on admission and at discharge -95% standard (exceptions: terminal illness, day cases, short elective or impossible to weigh clinically)

Nursing records

Levels of award and prizes

Gold: £1000 to ward for training & team of the month

Majority green, occasional yellow, no more than one amber, no red

Silver Majority yellow with some green and amber

Bronze Majority amber

Certificates signed by Director of Nursing and External

Assessor

Progress

Gold – One ward ( Midford)

Silver - Six wards ( 3 older people, Medical Assessment Unit,

Endocrine, Orthopaedics)

Gold Award -

‘We’re so proud that our striving

to do the very best for our patients is being recognised’

Terry Bolton, Ward manager

Known dementia

All emergency admissions aged over 75

Dementia

pathway

Care as

Has the person

been more

forgetful in the

last 12 months

to the extent

that it has

significantly

affected their

daily life?

No known dementia

Diagnostic

assessment

Dementia CQUIN: FAIR (Find, Assess and Investigate, Refer)

Feedback

Positive

Inconclusive

Negative

Diagnostic

review, if

indicated

Referral

1 Find 2 Assess and Investigate 3 Refer

Clinical

Diagnosis of

delirium

no yes

What is needed?

1. Enthusiasm

2. Executive – clinical partnership

3. Clear timeline for action and focus

Publicity

Carers rate RUH best

CARERS SAY RUH BEST FOR DEMENTIA CARE

Community Based Reablement

Ojalae Jenkins

Joint Commissioning Manager

Buckinghamshire County Council

Whole System Challenge

Buckinghamshire Citizen’s Jury

Whole System Challenge

Crisis Success

Buckinghamshire Citizen’s

• Selection

Process

• Witnesses

• Scrutiny

The Question?

We want dementia patients

and their families to receive

the best care possible.

Considering the services

we currently have in

Buckinghamshire, and what

we know is ‘good practice’,

which services does the

Jury believe should be

prioritised over the next 18

months for development?’

The Verdict:

• Providing people with

dementia and their carers

(one pack) information at

the point of diagnosis.

• The need to ‘de-stigmatise’

dementia. This they felt

would go a long way in

terms of encouraging people

to seek help at an early

stage.

Approach

Philosophy

Empowerment

Rebuild Confidence

Learning / Relearning

Community Access

Outcome Focus

Dynamic

Health and Well-Being

Social Model

Innovation in Buckinghamshire

Social Care Surgeries

in conjunction with

Thames Valley Police

Rapid Access and

Prevention Service

Movers and Shakers

To finish... It’s all

about...

Opportunity

Working Together

Empowerment

Contact Details:

Ojalae Jenkins

Tel: 01296 383 183

Email:

ojenkins@buckscc.gov.uk

Roundtable discussion

Raising awareness and dementia

friendly communities

Jeremy Hughes, Chief Executive,

Alzheimer’s Society and National

Taskforce leader

Ian Sherriff MA CQSW DMS Dip Cll

University of Plymouth

Dementia Friendly Communities

Prime Minister stated, ‘We are encouraging

more businesses to join this fight-back. I’m

delighted to see the progress being made

here. Already 20 big organisations like

Lloyds Group, Tesco and E.ON have signed

up to become more dementia friendly – and

over the coming months I want to see many

more follow suit.’

Without the sense of Caring there can be “No”

Sense of Community

►To develop Dementia Friendly Urban and

Rural Communities, that recognise the

great diversity among individuals with

dementia and their carers, promote their

inclusion in all areas of community life,

respect their decisions and lifestyle choice,

anticipate and respond flexibly to their

dementia related needs and preferences.

Devon Parish Councils around the Yealm

► Wembury

► Brixton

► Yealmpton

► Newton & Noss

► Holbeton

► The Yealm Project has: A Committee, Funding Stream for worker, Constitution Aims, Objectives, Work out puts for years 1 and 2 And a Bank Account

Plymouth Dementia Action Alliance

To develop the Plymouth Dementia Action Alliance

from the following groups within the city:-

Charity/Voluntary Agencies, Criminal Justice System,

Emergency Services, University of Plymouth

Digital/Communications/Networks, Health Care Sector,

Leisure/Tourism,

Local Authorities/Political Parties, Retail Sector, Transport,

Utility Companies,

Financial Sector, Church/Faith Communities, HM Forces,

the Press.

Examples of Organisations Support

►The Naval Base

►Naval Families Service

►Parish Councils

►City Council

►City Retail Sector

►Dartmoor Rescue

►Health and Social Care/GPs

Contact Details

isherriff@plymouth.ac.uk

University of Plymouth

Roundtable discussion

Closing comments

Dr Geoffrey Harris, Chair, NHS South

of England

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