IHP Dementia Knowledge Day - PowerPoint Presentation

Slide1

IHP Dementia Knowledge Day

LOROS Hospice, 14th July 2010Slide2

Welcome

Alan Heron, Senior Commercial Manager, IHP.Slide3

Achieving the National Dementia Strategy:

Prof. Jane Gilliard, National Dementia Strategy Programme Manager, Dept. of Health.Slide4

The National Dementia Strategy

Professor Jane GilliardNDS National Programme Manager (Implementation)

Social Care, Local Government and Care PartnershipsSlide5

Launched Feb 2009

The 3 themesPublic and professional awarenessEarly diagnosisQuality of care17 (+1) recommendations

National dementia strategySlide6

Currently 570,000 people with dementia in England (700,000 in UK)

Numbers likely to double in the next 30 yearsCost currently is £17 billionCosts likely to treble to more than £50 billionDementia is one of the main causes of disability later in life, ahead of some cancers, cardiovascular disease and stroke

40% of people admitted to hospital have dementia

30% of older people develop delirium during their stay in hospital

50% of hip fracture patients have dementia

At least 50% of long term care residents have dementia

40% of the work of the work of community matrons is focussed on people with dementias a co-morbid condition

Need to improve range and quality of support and services

Why a National Dementia Strategy?Slide7

End of Life Care for all terminal conditions –

burden of disability according to WHO (2003)

Medical condition

Proportion of Years Lived With Disability (YLD)

Dementia

11.2%

Stroke

9.5%

Musculoskeletal

8.9%

Cardiovascular

5.0%

Cancer

2.4%Slide8

Dying from and with dementia

60,000 die directly of dementia yearly Knapp & Prince 2007A common contributor or accompaniment to dying: 1 in 3 of over 65s will die with dementia Byrne 2006Slide9

People with dementia and their carers to be involved in planning end of life care which recognises the principles outlined in the Department of Health End of Life Care Strategy. Local work on the End of Life Care Strategy to consider dementia.

Objective 12- improved end of life care for people with dementiaSlide10

17 Objectives, of which seven are priorities:

Good-quality early diagnosis and intervention for allImproved community personal support servicesImplementing the Carers’ StrategyImproved quality of care for people with dementia in general hospitalsLiving well with dementia in care homes

An informed and effective workforce for people with dementia

A joint commissioning strategy.

Priorities for implementationSlide11

Leadership

People with dementia and carersProf Alistair Burns, National Clinical Director, DementiaSir Ian Carruthers, CE South West Strategic Health Authority Jenny Owen and Simon Williams, Association Directors Adult Social Services (ADASS)Martin Green, ECCA, Care Homes

National and Regional Programmes in place and working

Central implementation team: policy and implementation

A lead and implementation programme for each priority Objective

Regional implementation team

Making Connections

Policy: embedding dementia with Dignity, Carers and working with other key policy areas eg Personalisation

Professional bodies eg Royal Colleges

Other work programmes eg Enhancing the Healing Environment

Implementation projects

Advisory/project groups in place for the Objectives: building partnerships and buy-in

Projects commissioned and underway

Year 1: Building the foundationsSlide12

40 Demonstrator Sites for Dementia Advisors (22) and Peer Support (18)

Joint Commissioning Framework published June and national conference October 2009Cause, Care and Cure - major national research summit Regional leadership network establishedSkills for Health/Care mapping training and education Pocket guides issued for care home managers issued in October1st

national memory assessment conference Nov 2009

Anti-psychotics Review published November

Key events in the last yearSlide13

11 recommendations

Reducing use is a priority backed up by audit and explicit goals

Curricula needed

In reach to homes

Care Quality Commission

Access to Psychological Therapies Programme

People with dementia in their own homes.

Antipsychotics in dementiaSlide14

Established partnerships with EoLC Strategy team and National EoLC programmeLinks with NCPC and Dying Matters

NEoLC newsletter – Issue 17, Dec 2009NICE Commissioning Guidance – published ??Established a reference group to advise and steer workDeveloping online web-based resource guideDue to launch in Augustwww.endoflifecareforadults.nhs.ukObjective 12 – improving end of life care Slide15

Haringey audit toolPalliative care for people with dementia in Croydon

Gables Nursing Home in PeterboroughSouthwark modernisation initiativeGreater Manchester and Cheshire Cancer NetworkEoLC innovative practiceSlide16

Need to spread and adopt models of best practiceDementia Portal to diffuse best examples

We all need to innovate - a challenge for us all, but we all canBut avoid re-inventing of wheels, and learn from the bestRemember, always be ready to replicate.Implementing best practiceSlide17

Strategy widely welcomed

National and regional support in placeRange of national initiatives to support implementationHigh profile in terms media and other interestPriority indicated from the centreClinical leadership provided by new National Clinical Director

Focus on disseminating best practice

Are changes really happening on the ground?

ConclusionsSlide18

Jane.Gilliard@dh.gsi.gov.uk

Claire.Goodchild@dh.gsi.gov.ukwww.dementia.dh.gov.uk

www.endoflifecareforadults.nhs.uk

ContactsSlide19

Implementing end of life care:

Dr Sanjana Nyatsanza, MBBS, MD (Psychiatry), MRCPsych, Cambridgeshire

& Peterborough NHS Foundation Trust.Slide20

Implementing End of Life Care in Dementia 14th July 2010Dr Sanjana NyatsanzaConsultant Old Age Psychiatrist

Cambridgeshire & Peterborough NHS Foundation TrustSlide21

Outline

What is Palliative CareGovernment guidelinesHow to improve end-of-life careApplication of Mental Capacity Act CQC RegulationsSlide22

What is Palliative Care?

An approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering

by means of early identification and impeccable assessment and treatment of

pain and other problems, physical, psychosocial and spiritual.

(WHO)

“palliare” – to cloak or coverSlide23

Recent Reports

Dementia is a terminal condition Prognosis 3-9 yrs from diagnosis; avg - 4.5yrs60,000 deaths pa attributable to dementia - Dementia 2010 – Alzheimer’s Research Trust

RCP Report –

Palliative Care Services: Meeting the Needs of Patients

(2007)

Encourages move from charity-based hospices to mainstream NHS

To ensure standards & equitable services

*D Jolley & M Tapley -

Due respect & professional care in death

- The Psychiatrist - April 2010Slide24

Who does Palliative Care apply to?

Previously reserved for malignancyGovernment policies encourage application of palliative care principles in all terminal conditions, including dementiaTraditional models may not be appropriate Changes in service provision, attitude & education are neededSlide25

Challenges in providing good palliative care in Dementia

Difficulty viewing dementia as a terminal illnessLack of awareness among staff / carers Myths that patients do not experience pain or distressing symptomsAgitation attributed to ‘normal’ progression of dementiaUnrecognised symptomsLack of knowledge of assessment & symptom managementDifficulty in predicting start of the terminal phase

*S Bell -

Peterborough Palliative Care in Dementia GroupSlide26

Complex palliative care needs of people with dementia

Tend to be older; experience more pain in last months than cancer patients & spend last year of life in care homesSymptoms progress from memory impairment, to behavioural change Physical problems increase with falls, incontinence, difficulty swallowing & inanition. Terminal phase may include immobility, contractures, decubitus ulcers and recurrent infections;

with behaviour that seems to indicate distress and is unresponsive to most approaches to reassurance

* National Council for Palliative Care -

Exploring palliative care for people with dementia

* The Regional Study of Care of the DyingSlide27

Terminal phase of care in dementia is less than optimal

Symptoms of distress unresolved, sometimes with no attempt to ameliorate them.Repeated admissions to acute hospitals for assessment Given ill-informed, inappropriate, life-sustaining treatment that only prolongs suffering & adds to confusion & distressDevelopment of additional complications - decubitus ulcers or colonisation with MRSA.

Carers are rarely informed of the likely outcomes for patients with dementia

*RCP Report –

Palliative Care Services: Meeting the Needs of PatientsSlide28

NICE-SCIE Guidance on palliative care in dementia

‘Dementia care should incorporate a palliative care approach from the time of diagnosis until death. The aim should be to support the quality of life of people with dementia and to enable them to die with dignity and in the place of their choosing, while also supporting carers

during their bereavement, which may both anticipate and follow death.’Slide29

Living well with dementia: A National Dementia Strategy DoH, 2009

Objective 12: Improved end of life care for people with dementia. People with dementia and their carers to be involved in planning careDepartment of Health’s End of Life Care Strategy 2004 : requires integration of care across primary, secondary and tertiary healthcare and social services

Local work on the End of Life Care Strategy to consider dementiaSlide30

“Good” palliative care in dementia? (WHO 2002)

A team approach: to relieve distressing symptoms;to affirm life and to see dying as a normal process, to be neither hastened nor postponed;

to integrate the psychological and the spiritual;

to offer a support system to help patients live as actively as possible and to help the family cope, including during bereavement;

to enhance quality of life, which might positively influence the course of the illness;

to become involved early in the course of the illness and to work in conjunction with other therapeutic approaches

*J Hughes - Dementias 2010 ConferenceSlide31

CQC Regulations

involvement and information personalised care and treatment safety and safeguardingSlide32

What’s the evidence that a palliative care approach works? (Sampson, Ritchie, Lai, et al.

2005)Retrospective case-note studies demonstrate inadequate palliative care in both psychiatric and acute hospital wards (Lloyd-Williams, 1996; Sampson et al, 2006)Equivocal evidence of the efficacy of a palliative model of care in dementia

Increased interest, but little evidence: ethical difficulties, prognostic uncertainty, lack of clear outcome measures

*J Hughes - Dementias 2010 ConferenceSlide33

Solutions

Cross-specialty training Increased awareness – professionals, carers & publicCo-ordination of multi-agency careDevelopment of specialist hospice-style services, within the framework of continuing NHS careSlide34

The PEACE* programme

physical and psychological symptomsadvance care planningeducation about diseaseconnections to community resourcescoordination of care with an interdisciplinary team lead by a clinical nurse specialist

patient-family centred care

use hospice services for end-stage patients

*Palliative Excellence in Alzheimer Care Efforts - Shega JW, Sachs GA. (2010) Offering supportive care in dementia: reflections on the PEACE programme. In:

Supportive Care for the Person with DementiaSlide35

Application of Mental Capacity Act

Five principles:Presumption of capacitySupport to individual to reach the decisionThe right to make unwise or eccentric decisionsDecisions should be in patients “Best Interests”

Least restrictive decision or action

Be mindful of fluctuations in capacity

Respect patient’s past wishes & feelings and valid / applicable advance decisions

Involve IMCA, in case of serious medical treatment, esp. if harm or risks outweighs benefit (PEG)

LPA or court appointed deputy

Ultimate arbiter – Court of Protection - declaration

Preferred place of care disputes; with holding life-sustaining treatment

If subject to DOLS – death in custodySlide36

Advance Care Planning

Patients may still retain capacity to make informed choicesInvolve patient and carers as far as possible, in care plans, in advanceCarers can plan for the future and feel more supported in making decisions Better resolution of carers’ bereavement Reduction in admissions from care homes to hospital Slide37

The Last Months

“The surprise question”GSF & LCP give guidance re difficult decisions – hydration, nutrition; pain control & communicationGSF Prognostic indicator guidance Barthel score: activities of daily living <3

No consistent meaningful verbal communication

Significant weight loss (>10% body weight in 6m)

Pressure sores

Recurrent UTI / aspiration pneumoniaSlide38

Can we tell?

Trajectory for some cancers is predictable & shortFor dementia – longer, erratic time course (so cannot apply LCP rigidly)*G Evans – ‘Living Well & Dying Well in Dementia’ Symposium 2010Slide39

Palliative Care Indicator Guidance*

1. Does the patient have moderately severe or severe dementia?2. Does the patient also

have

a. Severe distress (mental or physical) which is not easily amenable to treatment?

b. Severe physical frailty which is not easily amenable to treatment?

c. Another condition (eg. co-morbid cancer) which merits palliative care services in its own right?

*National Council for Palliative Care

The Power of Partnership: Palliative Care in Dementia,

Dec 2009Slide40

Anticipatory Planning

Person with dementia and relatives Advance Directive/Living Will Lasting Power of Attorney for Health & Welfare Advance Care Plan

GP and Senior Care Home staff

Allow a natural death form

GSF Palliative care register

Preferred Priorities of Care Form

(not just place of care)

-

preferences / wishes are discussed & documented in advance; minimizes inappropriate admissions/ interventions *NHS End of Life Care ProgrammeSlide41

Contingency Plans

Active management of pain and distressCardiopulmonary resuscitationCancer chemotherapyComplex surgical proceduresHospital admission for injuries such as fracturesHospital admission for stroke

Hospital admission for chest or other severe infections

Swallowing difficulties

Dehydration

Terminal careSlide42

The Greenwich Care Home Illness Plan (GCHIP)

Examples from the GCHIP:Use of Acute hospitalsWe do/ do not recommend that hospital admission may be appropriate for injuries such as fractures

We

do/ do not recommend

that hospital admission may be appropriate for illness such as chest infections

Terminal care

When dying is imminent and the patient is distressed

we would expect

that medication (e.g. antibiotics) will be given to alleviate the distress that may occur during death

Patient has/ lacks capacity for this decision

Patient aware

Next of kin/ advocate aware

GP initials Date Slide43

Common symptoms in the terminal phase

PainNausea & vomitingBreathlessnessDistress/ restlessness/ agitationRespiratory secretions (‘death rattle’)*S Bell - Peterborough Palliative Care in Dementia GroupSlide44

Diagnosing dying

Profound weaknessDrowsy or reduced cognitionDiminished intake of food/fluidsDifficulty swallowing medication

Abnormal breathing patterns

Reduced peripheral perfusion with skin colour and temperature changesSlide45

General considerations

Review of all medication and other interventions:Can any drugs be stopped?Do routine obs need to continue?Can important drugs be given via an alternative route or changed to ones that can? e.g. syringe driver for SC drugs, PR NSAIDsIs enteral feeding/ fluids continuing to offer benefit or can they be stopped?Slide46

Nursing care

Quality nursing care is the basis of terminal care managementTry and involve the familyAttention to detailAnticipate and prevent problemsCareful positioningSkin carePressure area careMouth careBowel & bladder care

Eye careSlide47

Pain

Physical, psychological, spiritual distressCannot assume that a non-communicative / semi-conscious patient will not perceive pain~65% non-cancer patients will have painSubstantially undertreatedAssessment to elucidate underlying cause, reverse where possible & treat where notSlide48

Pain

Assessment Tools (PAINAD and DisDAT) to identify pain & monitor outcome of intervention in people with severe dementiaIn terminal phase, oral route can be lostFollow the WHO analgesic ladder & titrate carefullyDo not withhold strong analgesics if neededDo not remove patch - continue to change as previously; give additional analgesia via CSCIOpioid naive likely to need very small doses

Suppositories (Paracetamol, Diclofenac)

Sublingual (Fentanyl, alfentanil)

Parenteral (Morphine, Diamorphine, Oxycodone)

Transdermal (Fentanyl & Buprenorphine)Slide49

Distress/ restlessness/ agitation

Behaviour may be due to one of many causesCan lead to false positives on pain assessment scalesElucidate and target management at this cause Non-drug treatmentEnvironmental controlPresence, touch & reassuranceSpiritual supportDrug treatment

Consider drug withdrawal eg nicotine, alcohol

Benzodiazepines eg midazolam

Anti-psychotics eg haloperidol, levomepromazineSlide50

CQC Regulations

People who use services will have their needs met because they:Are involved in the assessment / planning & able to make choices and decisions about their preferred options, particularly pain managementAnd their families have information relating to death and dying

Are able to have those people who are important to them, with them at the end of their life

Can have a dignified death, because staff are respectful of their needs for privacy, dignity and comfort

Have a care plan which records their wishes with regards to how their body and possessions are handled after their death and staff respect their values and beliefs

Can have assessments by specialist palliative care services / other specialists

There are arrangements to minimise unnecessary disruption to the care, treatment, support and accommodation Slide51

‘How people die remains in the memory of those who live on.’

Dame Cicely Saunders - Founder of Modern Hospice Movement “Slowly, I learn about the importance of powerlessness.

I experience it in my own life and I live with it in my work.

The secret is not to be afraid of it – not to run away.

The dying know that we are not God,

All they ask is that we do not desert them.”

Cassidy S. Sharing the Darkness; the Spirituality of Caring.Slide52

How can collective procurement help?

Tracey Allford, Operations Manager, LOROS.Slide53

LOROS Hospice

Member since mid-2009Local registered Charity providing care and support in Leicestershire & Rutland

A specialist centre providing skilled nursing and medical focused on patient and relatives’ needs

31 in-patient Hospice and Day Centre with outreach facilities in the community Slide54

Key Facts 2010/11

Running Costs £7million p/a

No of employees

290

No of

volunteers 850

No of LOROS shops

21

No of individuals benefiting

from

LOROS services

2500

paSlide55

Why did LOROS join?

To save money = more money for patient and family needsTo work with similar independent health care providers to benefit from joint purchasing Slide56

What did we do?

Stationery – Office depotEnergy – 20 Charity shopsLinen – HospiceCateringKitchen EquipmentSlide57

Savings?

StationerySignificant savings on office consumables

Up to 50% savings achieved on furniture

Energy

20 Charity shops reviewed and one shops £2000 pa saved on electricity (40%)

Linen

New sheets, pillow cases and quilts purchased – saving of 30%

Catering

Eggs, Cooked meats – savings around 8%

Kitchen Equipment

Hostess Trolley and Dishwasher (£400) within IHP

MembersSlide58

Improving the quality of dementia services:

Jackie Crowther, Researcher, Academic Palliative and Supportive Care Studies Group (APSCSG). Slide59

Dementia:

what care do patients and carers need in the last year of life? Jackie Crowther PhD StudentProfessor Mari Lloyd-Williams Academic Palliative and Supportive Care Studies Group (APSCSG)University of Liverpool

Academic Palliative and Supportive

Care Studies GroupSlide60

Three year PhD project

Funded by St. Luke’s Hospice Cheshire

Qualitative methodology

Narrative = data collection method

Ethical approval to interview up to 40 bereaved carers

PROGRESS TO DATE:

N=38 bereaved informal carers

Female N=29 Male N=9

Age range of participants =19-86yrs

37 interviews, 1 written narrative

Various socio-economic backgrounds

Siblings and spouse

Deaths occurred mainly in 24 hr care environments

Deaths facilitated within family home to date N=4

Project Outline

Academic Palliative and Supportive

Care Studies GroupSlide61

Aims and Objectives

Communicate with carers of people with dementia

Inclusion

not exclusion

Carers = experts

Need to provide care people “want” and not care we

think we think they “need”

Support development and implementation of guidelines/

directives

Ongoing and continued research needed to facilitate

thisSlide62

Preliminary Analysis

Died in hospital environments N= 21

Died in care homes N=13

Died at home N=4

Interview recordings re-visited on several occasions

Transcripts read and re-read on several occasions

Initial coding: 15-30 per transcript

Searched for similarities across all

Academic Palliative and Supportive

Care Studies GroupSlide63

Commonalities/tentative categories

Knowledge

Intuition

+

ve

and –

ve

care

Information

Spirituality

Faith

Death talk

Moving on

Coping strategies

Kindness

Guilt

Carers as experts

Practicalities

Control

Trust

Anger

Deceit

“Being” with

Communication

Cultural issues

Language issues

Abandonment

Occupation/stimulation

Trauma

Release/relief

Life history

1

st

and 2

nd

death

Religion

Carer stress/burden

Physical health (both)

Finances

Academic palliative and Supportive

Care Studies GroupSlide64

Potential Themes Emerging

Communication:

ability for everyone to listen (more importantly to “hear” what is said). Vital to know life history of person e.g. loss of a child, war veteran, personal habits and preferences

Support for families:

at transitions of care e.g. decision to place relative in care home or admit to hospital, burden of guilt, lies and deceit

Academic Palliative and Supportive

Care Studies Group Slide65

Kindness and humanity:

appears to outweigh knowledge, examples of excellent care across all settings but also examples of very poor care even within family home, issues with co-ordination of care increasing stress on families, kindness of strangers

“Being with”:

support to “be with” the

pwd

at difficult times, emphasis is on “doing”, when the “doing” is “done” nobody is with the

pwd

, results in stress for families, isolation for

pwd

, carers find this difficult but can be supported with finding a way to connect

Academic Palliative and Supportive

Care Studies GroupSlide66

Knowledge of carers:

informal carers believe they have intimate and best knowledge of

pwd

, however this can be dismissed by formal carers

Knowledge of disease process:

knowing when to treat, when to admit to hospital appropriately, when to withdraw, lack of continuity and consistency across settings, uncertainty contributing to stress for carers

Language/cultural issues:

differing languages and cultural backgrounds of formal carers impacting upon care and informal carers

Academic palliative and Supportive

Care Studies GroupSlide67

THANK YOU !

Jackie

Crowther

crowther@liverpool.ac.uk

Tel: 01517948047

Academic Palliative and Supportive

Care Studies GroupSlide68

A joined up approach to dealing with dementia palliative care:

Morejoy Saineti, Dementia Palliative Voice Nurse, Housing 21.Slide69

Morejoy Saineti

Dementia Voice Nurse

Slide70
Slide71

Dementia Voice Nurse

Palliative care for people with Dementia;

Employed By: Housing 21

Funded By: Kings Fund and Friends

Period: Two years

B

orough: London, WestminsterSlide72

The drivers of the post

End of life Care strategy

Dementia Care Strategy

Carers like Barbra PointonSlide73

Why Palliative care?

A home for life?

Preferred place of death?Slide74

The difference between dementia and any other condition during end of life stage

Capacity to make decision

Communication problems

Behavioural problem versus pain reaction or distress versus pain

Other people making decisions for you

Co-occurring conditions

Coordination of services

Effective advocacy services

Accessible care plans and regular caring services

Slide75

What Dementia Palliative care does

Affirms life and regards dying as a normal process

Neither hastens nor postpones death

Relief from pain and other distressing symptoms

Integrates psychological and spiritual aspects of care

Coordinates services

Multi professional support

Support system for the family

Slide76
Slide77

DVN First year engagements

Planning

Networking

Raising awareness

Communication

Partnership working

Slide78

Source of Referrals

St John's Hospice 7

Housing 21 4

Social Services 4

CMHT 3

Pembridge Palliative Team (generic) 3

District Nurse 2

St Marys Hospital 2

Butterworth Centre (Continuing Care) 1

60 Penfold Street (Extra Care) 1

IMPS Team 1

St Charles Hospital 1

Total Referrals  29

Slide79

What Joint up working does

Reduces waiting time

non bureaucratic referral system

Standardises care plans and practice

Continuity of care

Holistic care

Fast and friendly

Sharing information and expertise

Seamlessness

Slide80

Examples of Joint working

Joint assessments; advanced care planning; team meetings; case discussions; referrals; key working; consultation work; training (bearing in mind Gold Standard frame work)

The person with dementia and family carer

District nurses

GPs

CMHT

Hospice Staff

Nursing home Staff

Admiral nurses

In service teams

IMPS team

Nursing home; Extra care home; e.t.c.

Slide81

Case Study

91 year old man living in a Dementia extra support unit for 5years

Vascular Dementia colorectal tumour

Social isolation

Return to Ireland

Care pathwaySlide82

People Involved

IMCA (independent mental capacity act advocate

Extra care housing staff

Community nurses

DVN, McMillan nurses

Care manager

In services care teamsSlide83

Continuing Care Action Plan

Palliation

A continuing care package

Community McMillan Nurses/ Hospice @ Home

Continence assessment.

Rapid response Community Nursing Service

Top up transfusions

Brisker bleeds

Infections

Carers’ awareness / trainingSlide84

Outcome

Discharged from hospital back to the Extra support care home

Unachievable wishes of visiting Ireland due to advanced illness

Died peacefully at home with support from professionals. Slide85

DVN Service Success:

improving quality of life, and quality of dying

improving availability of support, services and equipments

support to Housing 21 and staff from other organizations,

improving staffs’ skills.

Slide86

How do I access the service?

All it takes is a phone call

Morejoy

Saineti

is the Dementia Voice Nurse. She is available between 9.00am and 5.00 pm, Monday to Friday.

Telephone: 0207 641 7694

Mobile: 0759 5055544

Email:

Morejoy.Saineti@housing21.co.uk

Fax: 0207 641 1637

Address: Tresham Dementia Services, 27 Tresham Crescent, London, NW8 8TWSlide87

Questions?