1. Dementia JSNA: emerging findings and themes Colin Brodie, Public Health Knowledge Manager Health and Wellbeing Voluntary Organisations Forum Tuesday 21 st April 2015

2. Page 2 Purpose and scope of JSNA The overall aim of the JSNA is to provide a comprehensive evidence base and information about the local population to inform the development of Dementia Strategy for the three boroughs. The report: Draws together the strategic drivers from central and local government Describes the local picture of need and models future trajectories to enable forward planning. Sets out the current pathways and services for people with dementia and their carers from diagnosis, to treatment, to community support, to acute hospital support with timely discharge Reviews guidance and evidence to inform best practice locally. To understand the possible gaps in service provision and make recommendations to align commissioning across the three boroughs and meet likely future needs.

3. Page 3 Process and methodology The development of the JSNA was undertaken by the Dementia JSNA Task and Finish Group and consisted of the following workstreams: – Strategy, guidance and policy review – Population level data analysis – Local audit 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 This information was collated and reviewed to identify gaps and develop the recommendations

4. Page 4 Dementia in our population 1.Current estimates of prevalence indicate the following numbers of people with dementia : – 1199 in Hammersmith and Fulham – 1457 in Kensington and Chelsea – 1806 in Westminster. 2.Through the aging of the population alone, we can estimate a 55% increase in the number of people across the three boroughs with dementia over the next 15 years. 3.The total across the three boroughs rises from 4,500 in 2015 to 7,000 in 2030 for those aged 65+. About half of these are in those aged 85+. 4.Around a quarter of carers known to Adult Social Care services in WCC and RBKC care for someone with dementia, rising to a third in LBHF 5.About 2/3 rds of care home residents have some evidence of dementia

5. Page 5 Estimated numbers with dementia aged 65+ in the three Boroughs

6. Page 6 Expected number of new cases of dementia each year by Borough

7. Page 7 Emerging themes and findings Expected increase in numbers of people with dementia. Adequate resource will be required to meet this challenge and may benefit from ways of delivering services more efficiently and sustainably. Most of the costs associated with providing care for people with dementia falls between unpaid carers and adult social care. It is important that we support, advise and empower carers to enable them to fulfil this role without detriment to their own quality of life. Dementia services are provided by acute and primary care, mental health services, social care and third sector. There is a need for better cohesion and collaboration between these services. This goal should be supported by well-coordinated information, advice and signposting, advocacy and outreach services. Dementia diagnosis is supported and rates are improving in the three boroughs. This must be followed by an equal input into post diagnostic care to ensure people are not left ‘on a cliff edge’ following diagnosis. It is important to keep people independent for longer, however there must also be appropriate escalation of care when needed. There is a need for increased training of paid and unpaid carers and residential care staff. People with dementia should receive parity of access to care for physical and mental health needs.

8. Page 8 Views of patients with dementia and their carers Views of patients with dementia and their carers are captured in the JSNA through: o local research by Healthwatch o ASC Carers Survey 2014/15 o literature review. View are expressed on a range of topics from diagnosis, hospital and care homes, day centres, memory cafes, to what carers thought helped them the most. Some areas for improvement highlighted in Healthwatch research: Integration of health and care services Staff training (inc. GPs, support staff, hospital staff) Information on how to access services, especially for self funders Respite and support for carers Personal control when choosing services

9. Page 9 Views of patients with dementia and their carers (cont) “My mother is unaware she has dementia and is very depressed and anxious and depends entirely on me. She refuses to pay for a carer insisting that I am there and care for her. She is scared of being left alone and I am afraid of leaving her for any length of time” (ASC Carers Survey 2014/15) “I am really suffering being my husband's main carer. As he rejects other people's help I have to do everything for him. I have no rest and haven't been on holiday for 12 yrs. Looking after someone with dementia is the most difficult job in the world” ASC Carers Survey 2014/15) “More resources for people with dementia living at home. More day centres for vulnerable people so all caregivers get a break. Improve communication between service providers and service users and their caregivers” (ASC Carers Survey 2014/15) ‘…(x) is great; she organises a book club… read book out loud, …royal academy workshop discuss paintings - once a month’ (Healthwatch, comment on Memory Café)) “…nursing staff were not differentiating between someone who has dementia and someone who did not, unclear if hospital staff have extra training to learn about the illness?” (Healthwatch)

10. Page 10 Living well with dementia – 6 Paths Respecting identity: ‘ It’s not one size fits all’ Embracing now: ‘ It’s a moment-living life’ Sustaining relationships: ‘ You don’t always need words’ Valuing contrast: ‘ Good days and bad days’ Supporting agency: ‘ What’s there to worry about?’ Maintaining health: ‘My priority in life’ Rowe, B., Brown, T., Holland, J., & ESRO. (2014). A good life with dementia? London: Alzheimer's Society/Red and Yellow Care

11. Page 11 Discussion The role of voluntary organisations in supporting people to “live well” with dementia

12. Page 12 Colin Brodie 3 rd floor, Westminster City Hall cbrodie@westminster.gov.uk 02076414632