Dementia Fairness in Lancashire ________________________________________________________________________________________ alzheimers.org.uk Deborah Parker Operations Manager Lancashire and Cumbria

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 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 Blackburn with Darwen1420 Blackpool2082 Burnley1084 Chorley1349 Fylde1497 Hyndburn961 Lancaster1994 Pendle1116 Preston1490 Ribble Valley905 Rossendale807 South Ribble1463 West Lancashire1544 Wyre2070

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?

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: /

Diagnosis rates in Lancashire Reported to be 46% - 56%

Waiting Times For a memory assessment 1 – 18 weeks 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 the knowledge and know-how to get what I need 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 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