Dementia
Fairness in Lancashire
Deborah Parker
Operations Manager
Lancashire and Cumbria
________________________________________________________________________________________
alzheimers.org.uk
Agenda
•
•
•
•
•
•
The National Picture
Lancashire
Our Vision for the Future
Alzheimer’s Society in Lancashire
Examples of Good Practice
Hot Spots and Aspirations
The Scale of Dementia
The Cost
• Dementia costs the UK £26.3 Billion a year
• That's enough to pay the annual energy bill of every
household in the country.

Total cost: £26.3bn

Unpaid care: £11.6bn

Health care: £4.3bn

State social care: £4.5bn

Individual social care: £5.8bn

Other costs: £0.1bn
Unpaid carers
Overworked, under-supported
• Two thirds of the cost of dementia is picked up by people
with dementia and their families
• Cost to people with dementia and their families: £17.4bn
• Cost to the state: £8.8bn
• 1,340,000,000 hours were spent caring for people for
dementia in 2013. That's more than 150,000 years
• 43% of carers don't receive enough support
Living Well with Dementia
Too many people with dementia aren't
living as well as they could

61% felt anxious or depressed recently

40% felt lonely recently.

52% don't feel they get enough support from the government.

34% don't feel part of their community.

28% aren't able to make decisions about how they spend their time.

18% aren't living well with dementia.
No two people with dementia are the same
Services need to reflect the needs of individuals.

1 out of 20 people living with dementia are under the age of 65.

7 out of 10 people are living with another medical condition or disability as
well as dementia.
Dementia across the country

England: 685,812

East of England: 82,516

East Midlands: 60,254

London: 72,009

North East: 34,289

North West: 89,783

South East: 121,512

South West: 84,413

West Midlands: 73,406

Yorkshire and Humber: 67,630
Lancashire
Lancashire
Blackburn with Darwen
Blackpool
Burnley
Chorley
Fylde
Hyndburn
Lancaster
Pendle
Preston
Ribble Valley
Rossendale
South Ribble
West Lancashire
Wyre
19782
1420
2082
1084
1349
1497
961
1994
1116
1490
905
807
1463
1544
2070
Sobering Thought
225,000 people develop
dementia every year
That is roughly one person every
three minutes
The Vision
A world without dementia
Key Goals
• change the face of dementia research.
• demonstrate best practice in dementia
care and support.
• provide the best advice and support to
anyone dealing with dementia.
• use our influence so that the state and
society enables those affected by
dementia to live as they wish to
Desired Outcomes
To :• have personal choice and control or influence over decisions
about me
• know that services are designed around me and my needs
• have support that helps me live my life
• have the knowledge and know-how to get what I need
• live in an enabling and supportive environment where I feel
valued and understood
• have a sense of belonging and of being a valued part of family,
community and civic life
• know there is research going on which delivers a better life for
me now and hope for the future
Alzheimer's Society
Alzheimer’s Society is the UK’s leading support and
research charity for people with dementia, their families
and carers.
We provide information and support to
people with any form of dementia and their carers
through our publications, National Dementia Helpline,
website, and more than 2,000 local services.
We campaign for better quality of life for people with
dementia and greater understanding of dementia. We
also fund an innovative programme of medical and
social research into the cause, cure and prevention of
dementia and the care people receive.
Delivering outcomes
•
•
•
•
•
•
•
•
•
Dementia Support Workers and Dementia Advisors
Dementia cafes
Singing or the Brain
Support groups
Befriending schemes
Carers Information Programme (CRISP)
Home Support Services
Dementia Friendly Communities
Dementia Action Alliances.
What about Lancashire?
What about Lancashire?
• Offices
– Blackpool (North Lancs)
– Burnley (East Lancs)
– Preston (Central and West Lancs)
East Lancashire
•Dementia Adviser Service – three workers 97 hours
per week;
•Dementia Support Service – two workers 56 hours per
week
•Carers Information and Support Programme (CRISP) –
four courses per year (each course five weeks long);
•Singing for the Brain – Two hours per week for 45
weeks/year
•Carers support groups: five groups
•Dementia Cafes: ten cafes
Central Lancashire
(Greater Preston and Chorley and South Ribble)
•
Dementia Adviser Service– 4 workers 104 hours per week
•
Dementia Support Service – two workers 70 hours per week
•
CrISP – 5 courses per year (each course four weeks long)
•
Singing for the Brain – one session per week for 45 weeks/year each in Preston,
Penwortham, Chorley (approx. 135 sessions a year in total)
•
Bookable blocks of Creative and Cognitive stimulation – 6 blocks per year. Each
block lasting between 5 and 8 sessions
•
Forget me not art group –three twelve week art blocks in Preston
•
Dementia Cafes: 4 monthly dementia café across the area. One a month in Preston,
Chorley and Penwortham and one Evening monthly one
West Lancashire
•
Dementia Adviser Service - 1 Staff member 35 hours per week
•
Dementia Support Service – 1 staff member 25 hours per week
•
Peer support group facilitator – 1 staff member 21 hours per week
•
CrISP – 5 courses per year (each course four weeks long);
•
CrISP 2- 1 or 2 courses depending on need per year
•
Singing for the Brain – Two hours per week in Ormskirk for 45 weeks/year; Two
hours per fortnight in Skelmersdale for 26 weeks/year
•
Dementia Cafes: three monthly 3 hour each facilitated cafes in Parbold, Ormskirk,
Skelmersdale (36 in year)
•
Bookable blocks of Creative and Cognitive stimulation – 6 blocks per year. Each
block lasting between 5 and 8 sessions. Has included Reading for the Brain,
Photography and Movement and Relaxation
North Lancashire
• Dementia Adviser Service - 4 Staff members 108 hours per week
• Dementia Support Service – 2 staff members 60 hours per week
• CrISP courses (8 per year)
• 3 Singing for the brain groups per week
• 4 Dementia Cafes
• Carers peer support group
• Home Support Service (190 hours per week)
Examples of Good Practice
• People living in Central and West Lancashire have access to a
holistic pathway of support for both people with dementia and those
who support them
• The provision is in place in Greater Preston, Chorley and South
Ribble and West Lancashire.
• Funded by three Clinical Commissioning Groups with a sub contract
from Age Concern and a significant element of voluntary income
from Alzheimer's Society
• Key Features
– Dementia Advisor and Dementia Support Service in each of the
three areas
– An automatic referral from Memory Assessment Service which
means that anyone who receives a diagnosis in Central and
West Lancashire can be referred directly for the support they
need at the point of diagnosis and throughout their dementia
journey.
Hot Spots and Aspirations
• Diagnosis
– The increase in diagnosis rates in England is
welcome, but too many people are still living
without a formal diagnosis.
– Variation in diagnosis rates within England
remains extreme, ranging from around 40% in
some areas to over 60% in others. Similarly,
waiting times for specialist assessment vary
depending on where people live.
Variable quality of care
• Quality of care for people with dementia should be consistent
across all health and social care settings.
• 72% of respondents to our survey were living with another
medical condition or disability as well as dementia, which
increases the complexity of their care needs.
• People with dementia in hospitals stay on average five days
longer than people without dementia in a comparable situation
(Alzheimer’s Society, 2009).
• The UK Homecare Association estimates that 60% of
people receiving care at home have a form of dementia
(UKHCA, 2013) and 15-minute visits are still common
(UKHCA, 2012).
Progress towards building
dementia-friendly communities
• Projects are now underway across England with the ambition of
making our communities easier places for people affected by
dementia to access services, socialise and live well.
• Over 50 communities have signed up to the Dementia
Friendly Communities recognition process, and the Dementia
Action Alliance now has over 1,400 national members.
• The Dementia Friends campaign is raising awareness of
dementia, improving attitudes towards the condition and creating
a more dementia-friendly society by encouraging 1 million people
to become Dementia Friends.
• This is being delivered by Alzheimer’s Society in partnership
with Public Health England.
Action Alliance in Lancashire
•
•
•
•
•
Rossendale *
Central Lancs Steering Group
Lancaster and Morecambe *
Fylde and Wyre
Blackpool
Developing Dementia Action Alliances across Lancashire, with a
view to signing up to the dementia friendly recognition process.
*have successfully joined this recognition process already:
Project Manager North West: Dementia Action Alliances
Tel: 01925 572 275 / 07715027605
E-Mail: grace.dyke@alzheimers.org.uk
Diagnosis rates in Lancashire
• Reported to be 46% - 56%
http://dementiachallenge.dh.gov.uk/map
Waiting Times
For a memory assessment
• 1 – 18 weeks
http://dementiachallenge.dh.gov.uk/map/
Post diagnosis (Alzheimer’s Society
services) 1 – 8 weeks
Action
• Action 1: All statutory health and/or social care bodies in England to set
targets for stepped yearly improvement in diagnosis rates up to 75% by
2017
• Action 2: Twelve weeks from referral to diagnosis
• Action 3: Establish a minimum standard of integrated post-diagnosis
support for people with dementia and carers
• Action 4: Government to build on progress and commit to an
appropriately resourced national strategy for England
• Action 5: An open debate with citizens on the funding of quality health
and social care that meets the needs of people affected by dementia
• Action 6: A fully integrated health and social care system that puts the
needs of people first
Actions
• Action 7: People with dementia and their carers must be involved
in the commissioning, design and development of services
• Action 8: High-quality mandatory training for all staff providing
formal care to people with dementia
• Action 9: All communities to become more dementia friendly
• Action 10: Everyone should have improved awareness of
dementia
• Action 11: All businesses and organisations to take steps
towards becoming dementia friendly
Actions
• Action 12: Dementia research should receive a level of
investment that matches the economic and human cost of the
condition
• Action 13: All people with dementia and carers should have
access to the best evidence-based care and research
• Action 14: People affected by dementia and their carers should
be given greater opportunity to participate in dementia research
Desired Outcomes
I have personal
choice and
control or
influence over
decisions about
me
I have support
that helps me
live my life
I know that
services are
designed around
me and my needs
I have the
knowledge and
know-how to get
what I need
I live in an
enabling and
supportive
environment
where I feel
valued and
understood
I know there is
research going on
which delivers a
better life for me
now and hope for
the future
I have a sense
of belonging
and of being a
valued part of
family,
community and
civic life
Thank you
________________________________________________________________________________________
alzheimers.org.uk