Living and Dying with Dementia (a Hospital Perspective)

1. Living and Dying with Dementia(a Hospital Perspective) Dr Oliver J Corrado, Consultant Geriatrician, Leeds Teaching Hospitals and LTHT ‘Dementia Champion’

2. Setting the Scene • Dementia affects 800,000 people in England and Wales • Not just older people, 17,000 in UK are aged under 65 years • 8400 people in Leeds with dementia, will rise to 12000 by 2026 • 25% of adult general hospital beds used by people with dementia • Common cause of admission to hospital particularly due to falls (and fractures) and infections (which make people more confused)

3. Setting the Scene • Although dementia is very common it is under recognised (even by health professionals) and under diagnosed • only 45% (data from 2013) of people with dementia in UK have a formal diagnosis • Prime Minister has set a challenge to increase the number of people diagnosed with dementia to 66% by 2015

4. Dementia Diagnosis Rates for Yorkshire & Humber Data source: State of the Nation report Dec 2013. Based on QOF data 2012/13.

5. 90% of people with dementia in Leeds have another long term condition eg heart disease, chest disease etc Proportion of those on dementia diagnosis registers in Leeds Number of long-term conditions (including dementia)

6. What Is Dementia? • It is nota normal part of ageing process • It is a condition which affects the brain and causes • Memory loss(particularly for recent events) • Difficulty thinking things through and planning • Being confused in time or place • Can affect mood and behaviour • Communication difficulties • It progresses with time • Commonest causes areAlzheimer’s disease (50%) and vascular dementia due to poor blood flow to brain (20%)

7. Improving Dementia Care in Hospital • Help identify/diagnose people with dementia • Better and safer prescribing • Person-centred care • Betterinformation, advice and support for patients and carers • Reducing risk and aids and adaptations • Dementia friendly hospital environments

8. Help identify/diagnose people with dementia • < 50% have a diagnosis currently • Frequently admitted to hospital • Department of Health introduced a hospital screen (called a CQUIN) in 2012 for all people aged over 75 admitted to hospital. Patients who are ‘confused’ in hospital or admit to being increasingly forgetful are given a quick memory test and if they score low referred for further review and assessment. Helping to increase diagnostic rates

9. Better and safer prescribing • People often come to hospital on lots of medication • Risk of not taking them or taking too many • The side effects of medication can make people drowsy or more forgetful • Hospital admission is a good opportunity to review medication, assess need and use devices to improve compliance

10. Person-centred care • Valuing the person with dementia, treating them with dignity and respect. Finding out more about them as individuals, their interests, likes and dislikes “Know Who I Am” / “This Is Me” to find out more about person “Forget Me Not” symbol to raise awareness • Providing assistance with eating, toileting and other aspects of personal care when needed. Also recreational activities. Finger food and snacks, cake at tea time, picture menus, “dementia friendly crockery and cutlery”. Volunteers to provide assistance with eating and for recreational activities

11. Better information, support and advice for carers • 7 million carers in the UK (1 in 10 people) • 60% of people will be a carer at some time in their life • 65% of carers aged 60-94 have health problems of their own • Ill health, depression and financial problems are common • Do hospitals do enough to support them ?

12. Leeds Carers’ Survey

13. Leeds Carers’ Survey

14. Leeds Carers’ Survey

15. Carers’ Support • With Carers Leeds appointed a Hospital Support Worker for carers of people with dementia • Better signposting to support agencies • Better information and advice eg on benefits such as attendance allowance • Lots of support available in Leeds (www.leedsdirectory.org)

16. Advice to People with Dementia • Get financial affairs in order (if mental capacity to do so) Make Will Lasting Power of Attorney Benefits Advanced decisions/directives • Keep active, books, newspapers, life story, cognitive stimulation, scrap books, photos music playlists

17. Reducing Risk and Adaptations Occupational Therapist • Reduce risk, fires, cookers • Smoke detectors and alarms • Body-worn alarms • Assistive technology eg for wandering • Timers • Downstairs living • Remove clutter Physiotherapist • Mobility assessments and walking aids

18. Dementia Friendly Hospital Environments • Signage • Lighting • Paint • Colour • Photos • Pictures • Calendars • Big face clocks • Matt even flooring • Lighting • Domestic seating • Avoid clutter

19. Bradford Hospitals DF Wards

20. Dementia and Dying A ‘good death’ Ensure people die in comfort and with dignity Forward planning is important, (wherever possible) respect wishes about place of death, funeral arrangements, readings (or not), choice of music etc. We are very bad at talking about death. Involve families and friends in process Ensure spiritual needs are met

21. Dementia and Dying Avoid unnecessary hospital admission when the best place for the person to have end of life care is home/ their care home. Improve communication with families and between health professionals in hospital and in primary care (GP) about treatment decisions and end of life care. Recognise when someone is dying and when further active treatment is not in their best interests. Good palliative care support and hospice care if needed (these are not just for people with cancer !) Bereavement support

22. Dementia and Dying You only live once ….. but you also only die once ! (Dying Matters)