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Luton’s Annual Dementia Conference 18 th July 2014. Welcome to. Photo Disclaimer. Toilets & Fire Alarm. Mobile Phones. Presentation Slides. House- Keeping. Cllr. Mahmood Hussain Portfolio Holder – Adult Social Care Luton Borough Council Welcome & Opening Address. Pam Garraway - PowerPoint PPT Presentation
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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
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
C:\Users\radfordk\Desktop\big lottery The Silver Line Sue Johnson Talks about Bob.mov
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: [email protected]
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
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 [email protected]
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