Luton’s Annual Dementia Conference

18th July 2014

Welcome to

House-Keeping

PhotoDisclaimer

Toilets & Fire Alarm

Mobile Phones

Presentation Slides

Cllr. Mahmood HussainPortfolio Holder – Adult Social Care

Luton Borough Council

Welcome & Opening Address

Pam GarrawayDirector Housing & Community Living

Luton Borough Council

The Luton Perspective

Keynote Speaker

Barbara Pointon M.B.E.

Think Relationships!

THINK RELATIONSHIPS!

Towards excellent care and support for carers’ and those we care for.

Barbara Pointon MBEFormer carer

Ambassador for Alzheimer’s Society and Dementia UKMember of the Standing Commission on Carers

barbara@pointon.name

Malcolm, aged 51 just after diagnosis(apologies to Harry Worth)

Pre-diagnosis: tell-tale signs and ‘forgetfulness’

• Family thinks “Something’s wrong”. Uncharacteristic changes: • Unusual behaviour, getting lost in familiar places, managing

cash or basic maths, leaving a pan on the hob to boil dry, • General confusion, making mistakes in an ingrained skill

• Not the usual kind of forgetfulness, brain ceases to lay down new memories, no memory there to ‘jog’.

• Conversations – keep to the right now and the distant past• Repetitive questions – reply as though for 1st time• Save yourself annoyance and protect your relationship

Carer’s role in process of diagnosis

• “I’m fine – nothing wrong with me” (No memory laid down of recent difficulties)

• Mini-Mental State only tests cognition• Just as important: functions in everyday living – the carer is

the only one who can give a true picture.• ‘Patient confidentiality’.• Carer wanting to give important information, not seeking it.• Seeing patient and carer together – can produce a big row!• Triangle of trust between the person with dementia, the

person who knows them best and the professional. • Treating the family carer as a partner in care

Supporting the carer in the early years

• Because of gradual loss of cognition, caring for people with dementia is significantly different from caring for the frail elderly. Requires special skills and information.

• Providing ongoing, good personalised information, practical advice, guidance and emotional support for the carer.

• Unwittingly giving the wrong kind of care• What not to do: contradict, correct, treat like a child, take

over or be bossy..• May have ‘child-like’ problems, but has adult feelings

Giving the right kind of care and support

• The majority of people with Alzheimer’s have visuo-spatial perceptual problems. Can be at the root of strange behaviour

• The eye sees fine, but the brain misinterprets what is seen – e.g. that people or animals on TV are in the room

• It’s not what we do, but the way that we do it. Do with, not for people

• Give choice – e.g. garments – preserve autonomy• Communication – silence - wait for a reply.• Celebrate and encourage what can still be done, rather than

bemoan what can’t.

Celebrate what can still be done

Enjoy good times together

Giving the right kind of care and support

• Past likes and dislikes may not persist – new ones may appear• Hiding and hoarding – not done to deliberately annoy!• When you understand, you can stop scolding and make

allowances.• First ‘accident’ – can’t find the loo – keep the door open.• Clinging to social and hygiene norms may not be appropriate• Advice: “Who is it a problem for? Go with the Flow, however

bizarre it seems”. Caring suddenly got a lot easier• Without good advice, carers get stressed, the relationship

suffers and they may find they can’t go on caring

Who can help?

• Every carer now has to be seen by a professional to discover their needs, which should create a gateway to support.

• Top of the list: access to someone with dementia care expertise to supply personalised information, practical advice about the right kind of care, and emotional support. One named person.

• Support, gently drip-dripped and ongoing, possibly commissioned from the voluntary sector, will protect family relationships, give confidence to the carer thus delaying or preventing expensive crises further down the line.

• Challenge the current situation where carers can only get help when their needs become substantial or critical.

A word in a Commissioner’s ear

• Crisis management is not the best use of scant budgets.• ‘When carers are well supported, they can provide better care

for the person they care for and report better well-being outcomes themselves’.( Ablitt, Jones and Muers 2009)

• Two good outcomes for the price of one!• Support is still very patchy nationwide• Family carers save the State £119 billion a year. Surely they

should have something in return?• More opportunities to meet other carers and gain peer

support.

Using services

• Domicilliary care – all adequately dementia-trained.• Takes time to build a trusting relationship – end miniscule

time slots - people with dementia shouldn’t be rushed• Continuity, reliability and the right attitude make for good

care and support• Poor quality paid services simply add yet more to the carer’s

heavy load.• Informal help from the community. The dogwalkers: good for

Malcolm and a precious break from 24/7 vigilance for me.• New friendships were forged and still stand today.

Perplexing behaviours

• There’s nearly always a reason• The story of the mirror• Travelling backwards in time; visuo-spatial problems;

aggression.• Antipsychotics – should only be used in the last resort and in

the short term.• And Still the Music Plays. Graham Stokes (Hawker 2009)• Eight Caregiving Maxims for Dealing with perplexing

behaviours (BP) handout.

From home to carehome

• Agency live-in carers; lack of training and continuity – 14 different people in 8 months.

• Malcolm’s aggression and my exhaustion led to placing Malcolm in a home.

• Most people these days are self-funding. They pay good money for care and have a right to expect high, not just minimal standards.

• Carehome staff did not involve me as a partner in care – impact on Malcolm. Absence of the triangle of trust

• Carers now have a right to be involved in making decisions.

December 1999

April 2000

The dining room, turned into Malcolm’s room, with electrically-operated recliner chair, hospital bed, hoist and manual wheelchair

Towards excellent care in the advanced stage

• All medication doses, including those for other conditions should be reduced in line with the severity of the dementia.

• Catheterisation is not recommended in dementia. Essential to use continence pads of the right size, absorbency and snug fit.

• Swallowing problems: cold drinks are more easily controlled than tepid ones. Speech and Language therapists advise on which of 16 levels of soft food to use. (Check in carehomes)

• Regular breaks are important : another careworker replaced me one day a week- the same person each time. Regular health checks in the pipeline.

• Access to expert dementia nursing advice is essential

Out-of-Hours

Doctors/Paramedics

GPDistrict Nurses

Social Worker

Malcolm &Barbara

Consultant Continence Adviser

Speech & Language Adviser

Dietician

CommunityDentist

OccupationalTherapist

Equipment Service

PhysiotherapistAlternating

Mattress technician

Wheelchair Service

Oxygen serviceDirect

PaymentsTeam; Rowan

Org.

Alzheimer’sSoc outreach

worker

Care team2 live-in carers (alternating weekly)Replacement carer[Some night nursing – Health]Emergency carers & Barbara

The Web of Care

(Last 7 yrs)

DementiaAdvisoryNurse?

COGNITION, ABSTRACT THINKING,

KNOWLEDGE, FINER SKILLS

ESSENCE/SPIRIT

CONTROL OF BASIC PHYSICAL FUNCTIONS

PSYCHE,

5 SENSES AND

EMOTIONS

Sensory/emotional/psychological/spiritual needs

• The person is not “a vegetable” and should not be made to feel isolated. TIME needed to stimulate 5 senses:

• Sight: smiley faces; changes of viewpoint; red/yellow spectrum• Taste: oral feeding; sweeter, stronger flavours; • Smell: of cooking, aromatherapy; favourite perfume.• Hearing: favourite music, humming, basic human need to be talked

to. • Touch – the most important. Stroking hands & face; hugs; calming

night fears.• Love is at the centre of all major faiths, but religious or not, we all

would want to feel safe and cherished

Barbara and Malcolm, January 2006

What do you as family carers want?

• Given the unique nature of dementia you need to be recognised and given special help to deal with it?

• Involved in decisions; treated as a partner in care in a triangle of mutual trust in all situations?

• Easy access to expert personalised advice throughout the journey in order to offer the right kind of care?

• Regular breaks and assessments to maintain your own health and well being?

• High quality services for both yourself and the person you care for?

Dementia Action Alliance

The Carers’ Call to Action

Supporting the needs and rights for family carers of

people who have dementia

Sophie Andrews Chief Executive

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Back by 11.40am please.

Back by 11.40am please.

Keith Conway

A Personal Journey

Anna Flynn

Luton’s Programme

Christina Christian

CrISPCarer Information & Support

Programme

Helen Crawford

Cognitive Stimulation

Sessions

What is it?An intervention for people with dementia

Suitable for early to moderate stages

Provides a range of activities that stimulate cognitive and social functioning

Based on programme developed and evaluated by UCL

Combines features of existing interventions such as reminiscence, reality orientation and other psychosocial approaches

NICE GUIDELINES"People with mild / moderate dementia of all

types should be given the opportunity to participate in a structured group cognitive stimulation programme. This should be commissioned and provided by a range of health and social care workers with training and supervision. This should be delivered irrespective of any anti-dementia drug received by the person with dementia".

Why CS?Research showed improvements in cognitive

function as measured by tools such as the Mini Mental State Examination (MMSE)

Participants reported significant improvement in quality of life

No side-effects have been reported

SessionsGroup of up to 8 people1-1.5 hoursTrained facilitator with 1 or 2 additional

helpersAssessment at referral to ensure it is

appropriate

What happens?Each session has a different theme

Consistent structure including a chosen song, reality orientation board and discussion on newspaper article.

All activities shared as a whole group

Guiding PrinciplesNew ideas and

associationsStimulate languageOpinion rather than

factChoiceInvolvementInclusion

Building relationships

Continuity and Consistency

Providing triggers to recall

RespectFun

Denise Noice

Singing Café

Tent Project?

• Stopsley Tent Project was the vision of a carer of someone living with dementia and was launched in 2011

• It is run by and for the community by volunteers

What is the Tent Project?

• Two activities delivered under the umbrella of the Project by a team of volunteers once a week:– A Singing Cafe for people with dementia and

their carers– A Social Group for the more able to meet for a chat

over a cup of tea

Aims & Objectives

The aim of the Project is to provide a safe haven for vulnerable people and their carers and to provide the opportunity of meeting new people, making friends and supporting each other.

Aims and Objectives• Create moments of success by focussing on

their remaining skills• Focus on their achievements• Ensure carers have a forum to share their

experiences

How is Project Run?• Steering Group of Volunteers from local Churches

and the wider community• All Volunteers are required to sign up to a

Vulnerable People’s Policy• No qualifications required, just a

caring disposition• Some of our Volunteers have a

nursing background

Who can attend & how much does it cost?

• Anyone living with Dementia and their Carers• If you would like to join us, then please do so

as you would be most welcome• Tea and cakes are provided at both activities• There is no charge, but donations

are welcome

How do people find out about us?

• We advertise locally via posters in local churches, shops, GP surgeries, etc and by word of mouth

• Through Age Concern and Luton Borough Council

• We need your help to spread the word further!

How have we progressed?• Signed up to the Luton Dementia

Action Alliance– As a result all volunteers are undergoing training

in dementia awareness• We’re working with Stopsley High School• The Singing Cafe started by meeting once a

month; the success of the Project means we now meet weekly and continues to grow

Our Thanks to:• Stopsley Baptist Church and

St Thomas’ Parish Church for their general support and the free use of venues

• Luton Borough Council and Age Concern for their continuing support

• Volunteers• To you for listening today

Any Questions?

Information• Further further information please call

01582 401480• The Singing Cafe is open every Thursday from

10 – 11.30am at The Greenhouse, St Thomas’ Road, Stopsley, Luton LU2 7UY

• The Tent Social Group is open every Thursday, from 2-4pm at St Thomas’ Church Hall, Hitchin Road, Luton LU2 7UL

Please join us, everyone is welcome

Back by 1.55pm please.

Back by 1.55pm please.

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Louise Langham

Carers Call to Action

Dementia Action AllianceThe Carers’ Call to Action

Supporting the needs and rights for family carers of people who have

dementia

Louise Langham Carers’ Co-ordinator

The Core Steering Group of The Carers’ Call to Action

The 5 Aims of our shared vision1. Carers of People with dementia

have recognition of their unique experience – 'given the character of the illness, people with dementia deserve and need special consideration... that meet their and their caregivers needs'

World Alzheimer Report 2013

Journey of Caring

2. Carers of people with dementia have access to expertise in dementia care for personalised information, advice, support and co-ordination of care for their own health and well-being

The 5 Aims of our shared vision

The 5 Aims of our shared vision

3. Carers of People with dementia are recognised as essential partners in care - valuing their knowledge and the support they provide to enable the person with dementia to live well

4. Carers of people with dementia have assessments and support to identify the on-going and changing needs to maintain their own health and well-being

The 5 Aims of our shared vision

5. Carers of people with dementia have confidence that they are able to access good quality care, support and respite services that are flexible, culturally appropriate, timely and provided by skilled staff for both the carer and the person for whom they care

The 5 Aims of our shared vision

A Road Less Rocky - Supporting People with Dementia' Carers Trust, Social Policy Research

Unit, The University of York, FireflyA report from Carers Trust has found that carers of

people with dementia are not getting the support and advice they often desperately need. 

www.carers.org'The Triangle of Care Carers Included: A Guide to Best Practice for Dementia Care' - Carers Trust,

Royal College of Nursing

Examples of Carers’ Resources on CC2A website

Top 20 Checklist for Commissioners - Examples of Services Supporting

Family Carers

We are starting to collate examples of good practice where services support family carers of people living with dementia. If you provide, or

know of, a good service supporting family carers needs and rights. We really need your input in

developing this really important resource.

Please Sign Up & Tell Everybody about our shared vision

www.dementiaaction.org.uk/carers Email: admin@dementiaaction.co.uk

Twitter: @DAAcarers

Diane Campbell

Culture Dementia UK

Young Onset Dementia in the BAME community

David Truswell

Culture Dementia UK

The Impact of Dementia on BAME Communities in the UK

Where are we now?

The Impact of Dementia on

Black and Minority Ethnic Communities

Luton 18th July 2014

David Truswell

Black and Minority Ethnic Communities and Dementia

Briefing Paper published in November 2013

Dementia is recognised as a worldwide health priority but research on dementia in general is poorly funded.

Implementing the National Dementia Strategy should take into account the information and support needs of black and minority ethnic communities

The prevalence of dementia in black and minority ethnic communities in the UK has been significantly underestimated

Dementia is misunderstood and highly stigmatised in many UK black and minority ethnic communities

There is an economic case for financing improvements in ‘living well’ with dementia for people in black and minority ethnic communities

Estimated Dementia prevalence for England and Wales black and minority ethnic population (2011 Census) all those over 65

Estimated Dementia prevalence for England and Wales black and minority ethnic population (2011 Census) all those over 65 by age cohort

Why is this a particular concern for black and minority ethnic communities?

1. There will be a seven fold increase in dementia BME communities over the next 30 years compared with a two fold increase in the indigenous White population

2. Within these broad trends there is projected to be a substantial increase of older people in some black and minority ethnic populations, notably the Irish, Indian and African-Caribbean populations, reflecting historic migration patterns

3. Lack of awareness as well as social and cultural factors reduce help seeking behaviours in black and minority ethnic populations, especially for mental health problems

4. There is an expectation of discrimination and/or lack of cultural competence from mental health services by black and minority ethnic populations

5. There are known predisposing health factors e.g. South Asian and African Caribbean groups are at increased risk of developing vascular dementia - the second most common form of the dementia - due to enhanced levels of diabetes and hypertension

6. Professionals’ assumptions about lifestyle and care giving cultural norms of black and minority ethnic communities may inhibit help-giving behaviour

7. Use of appropriately standardised diagnostic tools in assessments needs to be considered

Family member with increasing memory loss & erratic behaviour

Increased carer burden & isolation

Carer has health crisis

Patient Person living with dementia has health crisis

Hospital Admission

Residential Care Admission

Carer unable to continue with care

CRISIS POINT

What does this mean for individual families?

Impact of stigma

and lack of information

No suitable home based care can be provided

What could a culturally informed care pathway look like?

Family member with increasing memory loss & erratic behaviour

Approach GP with concerns

Information themed for BME Communities

Understanding within BME

Communities

Early Diagnosis by Memory Service

Advance Directives and community based support

Carer understanding

from BME Communities

Appropriate peer support & community

participation

Advanced stage and end-of-life care

Spiritual preparationHeld in

Community & Family Memory

Consistent culturally informed support from care professionals

GP confidence in availability of

appropriate post-diagnostic

support

An ‘invest to save’ illustration for using cost saving benefits of delayed transfer to residential home to fund community support services

PSSRU Provider category

Cost per resident per week

Cost per resident per day

Cost saving per week for 100 cases by1week delay in transfer

Less cost of 1 week of Social Care PackageCritical care package costs £363 per person per week

Private sector nursing homes for older people

£736 £105.14 £73,600 Less cost of Critical care - saves £37,300 per 100 cases per week

Private sector residential care for older people

£522 £74.57 £52,200 Less cost of Critical care - saves £15,900 per 100 cases per week

Local authority residential care for older people

£1,007 £143.86 £100,700 Less cost of Critical care - saves £64,400 per 100 cases per week

Extra care housing for older people

£428 £61.14 £42,800 Less cost of Critical care - saves £6,500 per 100 cases per week

Costing for early interventions

Voluntary adult befriending

£87 for 12 hrs per week

This could support development of 'black and minority ethnic dementia navigator'

Targeted black and minority ethnichealth promotion campaign

Unknown as depends on the scale of health promotion campaign

This could be partly directly invested in black and minority ethnic community groups. It is anticipated that economic benefits would be comparable with those found by Knapp et al.* in reviewing the benefits of mental health promotion

*Mental health promotion and mental illness prevention: The economic case (2011) Knapp M., McDaidand D. and Parsonage M. (eds.) Personal Social Services Research Unit, London School of Economics and Political Science

Contact Details

David TruswellSenior Project Manager, CNWL

david.truswell@nhs.net

Mobile: 07969 692315 

or via Linked-In

Cheryl Jackson

Culture Dementia UK

Change: The Way Forward

The Way ForwardLuton Conference 2014

Dementia

Excellence In Dementia Care Within The BAME Communities

•It doesn't exist

•Why?

Explore The ReasonsExplore The Reasons

Foundation

•Culture•History•Migration History

The Formula

CQC Essential Standards Person Centerd Care

Providing care, treatment and support that meets people's needs

Home Care

•More emphasis to be given to main carer

•The culture of the main carer

•One carer on the care package should be culturally matched to service user

Care HomesPerson Centered Care

Must be delivered in Care HomesEven if the Service User is a minority resident

More Emphises Must Be Given To

•Diet

•Methods of Mental Stimulation

Gaps In Services

•Before Diagnosis

•After Diagnosis

Communities will have to play a major roll in change

If we are to see a differenceIn how Dementia Services are delivered

When Culture Matters

Uphold the Dignity of People Living With Dementia

Culture Dementia UK

Sgt. Ruth Connelly

Bedfordshire Police

Perspective on Dementia

Luton Dementia Action Alliance Bedfordshire Police

Sergeant Ruth Connelly

Local Policing Team

North and West Luton

Bedfordshire Police

Bedfordshire is a county force, split into 3 local community policing areas:

Luton

Central Bedfordshire

Bedford and surrounding areas

Fighting Crime /Protecting the Public

We aim to do all we can to safeguard and protect those living with dementia and their carers; by working in partnership with the local authority, health professionals, fire service, neighbourhood watch, voluntary and community sectors

How can we do this?

Training - ensure our staff have the right skills and knowledge

Reassurance and crime prevention

Target harden / protect home addresses

Working with other agencies, effective communication to help with safeguarding

Luton Pilot Scheme

Referral received from Memory Clinic if patient/family consent – referrals taken from anywhere!

Visit to home address by PCSO by appointment for crime prevention / nominated neighbour / Bobby Van referral / found “missing person” information and photograph taken for police systems / Memo minder

Referral to Vulnerable Adults Team in Police who link in with Local Authority

Referral to Fire Service for Community Fire Safety Visit

Discussion re Nominated Neighbour/Neighbourhood Watch support and current Alzheimer’s Society information given

and the rest of the county?

Senior Management in Central and Bedford Policing areas agree to take up Scheme

Liaison with local Memory Clinic to establish referral system

Dementia Action Alliance

Bedfordshire Police became a member on 5th February 2014At the last meeting we were asked for each member to try to recruit more …We will continue to promote this initiative to help make Luton “Dementia Friendly” Have you signed up yet?

Now a question for you …

Have we missed anything from our Action Plan?I would like to hear your ideas ruth.connelly@bedfordshire.pnn.police.uk

Do you have any questions for me?

Thank you for listening

Panel

Question & Answer Session

Chair – Kimberly Radford

Cllr. Mahmood HussainPortfolio Holder – Adult Social Care

Luton Borough Council

Closing Remarks