Welcome to
Luton’s Annual
Dementia Conference
th
18 July 2014
Photo
Disclaimer
Presentation
Slides
Mobile
Phones
HouseKeeping
Toilets &
Fire Alarm
Cllr. Mahmood Hussain
Portfolio Holder – Adult Social Care
Luton Borough Council
Welcome &
Opening Address
Pam Garraway
Director 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 MBE
Former carer
Ambassador for Alzheimer’s Society and Dementia UK
Member 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 electricallyoperated 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
The Web of
Care
(Last 7 yrs)
Care team
2 live-in carers
(alternating weekly)
Replacement carer
[Some night nursing
– Health]
Emergency carers
& Barbara
Out-ofHours
Doctors/
Paramedics
Continence
Adviser
Consultant
GP
District
Nurses
Dietician
Dementia
Advisory
Nurse?
Community
Dentist
Malcolm &
Barbara
Occupational
Therapist
Social
Worker
Direct
Payments
Team;
Rowan
Org.
Oxygen
service
Alzheimer’s
Soc outreach
worker
Speech &
Language Adviser
Wheelchair
Service
Equipment
Service
Physiotherapist
Alternating
Mattress technician
COGNITION, ABSTRACT THINKING,
KNOWLEDGE, FINER SKILLS
CONTROL OF BASIC
PHYSICAL FUNCTIONS
PSYCHE,
5 SENSES AND
EMOTIONS
ESSENCE/
SPIRIT
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.
Keith Conway
A Personal Journey
Anna Flynn
Luton’s Programme
Christina Christian
CrISP
Carer Information & Support
Programme
Helen Crawford
Cognitive
Stimulation Sessions
Cognitive Stimulation
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
Sessions
 Group of up to 8 people
 1-1.5 hours
 Trained facilitator with 1 or 2 additional helpers
 Assessment 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 Principles
 New ideas and
 Building relationships
associations
 Stimulate language
 Opinion rather than fact
 Choice
 Involvement
 Inclusion
 Continuity and
Consistency
 Providing triggers to
recall
 Respect
 Fun
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.
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Louise Langham
Carers Call to Action
Dementia Action Alliance
The 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 vision
1. 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
The 5 Aims of
our shared vision
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
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
The 5 Aims of
our shared vision
4. Carers of people with
dementia have assessments
and support to identify the ongoing 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
Examples of Carers’ Resources on
CC2A website
A Road Less Rocky - Supporting People with Dementia'
Carers Trust, Social Policy Research Unit, The University
of York, Firefly
A 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
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 AfricanCaribbean 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
What does this mean for individual families?
Carer has
health crisis
Family member
with increasing
memory loss &
erratic behaviour
Increased
carer burden &
isolation
Impact of stigma
and lack of information
Carer unable to
continue with care
CRISIS
POINT
No suitable home
based care can be
provided
Patient Person living with
dementia has health crisis
Hospital
Admission
Residential
Care
Admission
What could a culturally informed care pathway look like?
GP confidence in
availability of
appropriate postdiagnostic
support
Understanding
within BME
Communities
Family member
with increasing
memory loss &
erratic behaviour
Approach GP
with concerns
Information
themed for BME
Communities
Carer
understanding
from BME
Communities
Early Diagnosis by
Memory Service
Appropriate peer
support & community
participation
Advance Directives and
community based
support
Held in
Community &
Family Memory
Spiritual
preparation
Advanced stage
and end-of-life care
Consistent culturally informed support from care professionals
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 by
1week delay in transfer
Less cost of 1 week of Social Care Package
Critical 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
Voluntary adult
befriending
£87 for 12 hrs
per week
Targeted black and
minority ethnic
health promotion
campaign
Unknown as depends on
the scale of health
promotion campaign
Costing for early interventions
This could support development of 'black and minority ethnic dementia navigator'
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 Truswell
Senior Project Manager, CNWL
david.truswell@nhs.net
Mobile: 07969 692315
or via Linked-In
Cheryl Jackson
Culture Dementia UK
Change: The Way Forward
Dementia
Luton Conference 2014
The Way Forward
Excellence In Dementia Care Within The BAME Communities
•
It doesn't exist
•
Why?
Explore The Reasons
Foundation
The Formula
• Culture
• History
• Migration History
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 Homes
Person Centered Care
Must be delivered in Care Homes
Even 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 difference
In how Dementia Services are delivered
Culture Dementia UK
When Culture Matters
Uphold the Dignity of People Living With Dementia
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 2014
At 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 Hussain
Portfolio Holder – Adult Social Care
Luton Borough Council
Closing Remarks