1. Dementia JSNA London Boroughs of Hammersmith and Fulham Kensington and Chelsea Westminster Colin Brodie, Public Health Knowledge Manager Andrew Rixom, Senior Public Health Analyst Neha Shah, Specialist Registrar in Public Health Medicine 21 st May 2015 London public health knowledge and intelligence network

2. Page 2 Dementia JSNA Our JSNA process and challenges Analytical challenges Mapping and qualitative work Dementia JSNA Outputs Questions

3. Page 3 Process, Governance & Challenges: Deep Dive JSNA Request submitted to JSNA Manager Initial Scoping of JSNA Application submitted to JSNA Steering Group for approval JSNA Task and Finish Group identified and established Work undertaken by T&F Group Quality Assurance and JSNA Steering Group Final sign-off by Health and Wellbeing Board Publication and dissemination Governance Three Health and Well Being Boards Representatives on single JSNA Steering Group JSNA Programme Manager Task and Finish Group Challenges Reasons for request Ownership Resources Politics Other JSNA Also have standard demographic descriptions

4. Page 4 What did we do? Work Streams – Strategy, guidance and policy review – Population level data analysis – Local audits of Adult Social Care service users – Mapping of local service provision and pathways for people with dementia and carers – Interviews with local clinicians – Collation of views and experiences of patients with dementia and their carers – Evidence review of best practice and interventions – Recommendations

5. Page 5 Prevalence (age standardised 65+ in 2015) CFAS 1 (1998) in UK Age standardised prevalence 7.5% Consensus rates (2007) from Alzheimer’s UK Delphi process – Age standardised prevalence 7.1% – Used in prevalence model Consensus rates (2009) from Alzheimer’s World Wide Delphi process – Age Standardised prevalence 8.6% CFAS 2 (2013) in UK – Age standardised prevalence 6.4% – Most age/gender specific rates lower Consensus rates (2014) from Alzheimer’s UK Delphi process and meta analysis – Age standardised prevalence 7.1% Difference for the UK is between 850,000 and 640,000 with dementia in 2015

6. Page 6 How much does it matter? Almost all those with more severe dementia already use services These are associated with a very high proportion of the total cost The number does not change whatever the underlying prevalence There will still be a 30%+ increase in numbers and cost, whatever the underlying prevalence GPs have 75% of the high prevalence on their register Low 31% increase High 2015 33% increase Demographic change 2025 increase =

7. Page 7 Care Homes The three boroughs have the lowest care home provision in England (1/3 rd ) – 2/3 rds of care home residents have dementia – 1/3 rd of those with dementia are in a care home Adult social care fund care home places for residents at time of need – 40% in boroughs (borough and CCG responsibility) – 40% rest of London (borough responsibility but not CCG) – 20% outside London (borough responsibility but not CCG) – £25,000 a year 1,800 places (NHS Funded places up to £50,000 a year) We have no idea how many people move to a care home outside the boroughs without funding from the borough. Care home deaths – 40% of people admitted to a nursing home die within 6 months – 30% of people admitted to a residential home die within 6 months – Incidentally exporting deaths to less deprived areas and increasing our LE

8. Page 8 Care Homes Yellow maggots – Capture – release to estimate numbers 1% (4) of deaths in our registered population who are resident in a care home are in care homes outside London Patients will have died shortly after moving – Re registration process to local CCG is rapid as automatic for care home staff – If patient dies they will have been ill and needed local medical services If 80% of those who move to a care home outside London re register in 2 weeks If death rate 33% over 6 months, but twice average in first week (rates return to background) Then, we would be exporting 500+ deaths a year, and a lot of others to care homes 2/3rds of who have dementia. Major assumptions and truly massive confidence intervals if valid. But qualitatively, a lot.

9. Page 9 Not covered Chose not to include hospital activity – Multiple providers with very different levels of recording – 33% of elderly patients are in hospital with dementia – 4% patients with dementia are in hospital because of their dementia Chose not to look at effect of prevention in this JSNA – Preventative measures are generic/universal – Opinion that those currently at highest risk of dementia have led healthier lifestyles than those about to be at highest risk Could not look at quality of Care Homes Only able to look at limited number of Adult Social Care records – rarely coded. 9

10. Mapping: referral pathways 10

11. Page 11 Mapping: services

12. Page 12 Qualitative analysis Semi-structured interviews were conducted with 9 different clinicians: Aims: Better understand the strengths and weakness of current service Understand interaction between different providers Explore clinicians’ attitudes towards key themes in dementia care Generate ideas for improvement 2 psychiatrists KCW, HF 2 psychiatrists KCW, HF 3 Geriatricians KCW, HF 3 Geriatricians KCW, HF 1 Neurologist HF 1 Neurologist HF 4 GPs KCW, HF 4 GPs KCW, HF 1 Nurse KCW 1 Nurse KCW

13. Page 13 Question prompts for semi-structured interviews 1.What parts of the local dementia service do you feel work well? 2.Could you comment on the quality of life of the patients under your care? 3.What are the key challenges and problems that your patients face? 4.Could you describe the referral pathways that are locally used for management and diagnosis of dementia? 5.Is there anything lacking in current dementia service provision across inpatient, residential and community services? 6.What, if anything, would you change about current dementia services? How and why? 7.How do you expect your patient base to change, if at all, in the coming years? (probe regarding research, severity of dementia, do people move away post diagnosis?) OPTIONAL: 8.How do you think the proposed enhanced payment for dementia diagnosis to GPs will affect patient care and diagnosis rates? 9.What role do you think the voluntary sector and unpaid carers have to play in care of people with dementia? 1.What parts of the local dementia service do you feel work well? 2.Could you comment on the quality of life of the patients under your care? 3.What are the key challenges and problems that your patients face? 4.Could you describe the referral pathways that are locally used for management and diagnosis of dementia? 5.Is there anything lacking in current dementia service provision across inpatient, residential and community services? 6.What, if anything, would you change about current dementia services? How and why? 7.How do you expect your patient base to change, if at all, in the coming years? (probe regarding research, severity of dementia, do people move away post diagnosis?) OPTIONAL: 8.How do you think the proposed enhanced payment for dementia diagnosis to GPs will affect patient care and diagnosis rates? 9.What role do you think the voluntary sector and unpaid carers have to play in care of people with dementia?

14. Page 14 Diagnostic screening should not take place without links to further care Hospital is a key place to pick up those that do not self present to GP Little cross referral between the two memory services in XX lack of understanding or overview of the ‘myriad’ of different services available in the community New integrated care models proposed Training on dealing with challenging behaviour, dementia friendly environments and preserving independence/living well with dementia indicated Diagnosis Service Design Quality of Care Attitude & environment Quality of Life

15. Page 15 LIMITATIONS: Labour intensive Quality limited by capacity Careful interpretation required: 9 clinicians’ experiences not representative of all Better cohesion and collaboration is needed via well-coordinated information, advice & signposting, advocacy and outreach services Dementia services are provided by a range of agencies - acute and primary care, mental health services, social care and third sector “Very simply there should be a single front door to the (memory) service where there is someone there with enough clinical knowledge to decide where they should go” “There are literally dozens of agencies involved often with overlapping remits often working on their own projects with little overall co-ordination” Allows triangulation of multiple viewpoints Rich detail captured STRENGTHS: JSNA themes supported by clinicians’ quotes

16. Page 16 High level themes and broad recommendations There may be a need for increased training for paid and unpaid carers and residential care staff 4. Whilst it is important to maintain independence for longer, there needs to be appropriate escalation of care when needed Better cohesion and collaboration is needed via well-coordinated information, advice & signposting, advocacy and outreach services 5. Dementia services are provided by a range of agencies - acute and primary care, mental health services, social care and third sector People with dementia need to receive parity of access across mental and physical health 6. People with dementia do not always receive fair access to services which support their mental and physical health needs We need adequate resource to deal with this challenge and we need to provide services more efficiently and sustainably 1. Numbers of people locally who have dementia will continue to increase over the next few decades, primarily due to a greater number of older people (aged 80+) This has to be followed by an equal input into post- diagnostic care to ensure people are not left on a ‘cliff edge’ once diagnosed 2. Dementia diagnosis rates have been rising in each of the three boroughs We need to support, advise and empower carers to fulful this enhanced role without a detriment to their own quality of life 3. Most of the cost of supporting those with dementia falls on unpaid carers and adult social care. With more care provided at home, pressure on carers may increase

17. Page 17 RAG Rating by borough for specific recommendations Nice Guidelines National Strategy Care Act 8 pages! Guidance Local Obs RAG Gap Recommend

18. Page 18 Questions ? Thoughts? What could we do differently?