LIVING AND DYING WITH DEMENTIA

1. LIVING AND DYING WITH DEMENTIA Bradford and Airedale Palliative Care Managed Clinical network

2. THE FACTS – Numbers of people with Dementia 1 in 20 people at 65 will develop dementia. 1 in 5 people over 80 will develop dementia. There are approx 15,034 people with young onset dementia in the UK (only based on referral to services – could be 3 times higher) There are around just under 700,000 people with Dementia in the UK, and the figure is rising rapidly Between 50 and 60% people in care homes will have Dementia

3. THE FACTS – What happens to people with advanced dementia ? • outcome of acute medical illness in the latter stages of dementia is known to be poor. • 41% people with dementia will die in residential or nursing home care, 19% at home and the rest in hospital

4. LIVING WELL WITH DEMENTIA is crucial to helping people DIE WELL with dementia Manchester Admiral Nurse Service 2009

5. POLICY and STRATEGY • A New Ambition For Older Age 2006 • NICE Dementia Guidelines 2006 • End of Life Care Strategy 2008 • National Dementia Strategy 2009 • EOLC for people with Dementia - NHC, Marie Curie • Dementia:ethical issues - Nuffield Council for Bioethics 2009

6. NATIONAL DEMENTIA STRATEGY 2009 • 3 key themes : • Improving public and professional awareness of dementia • Early diagnosis and intervention • High quality support for people with dementia and their • carers

8. Implementing the strategy in Bradford and Airedale • Strong emphasis on joint commissioning of services between health and social care • Development of Memory Clinics • Appointment of Dementia Advisors • Establishing ‘specialist in-reach teams’

9. END OF LIFE CARE STRATEGY 2008 Promoting high quality care for all adults at the end of life CARE PATHWAY 1. Identification of people approaching the end of life and initiating discussions about preferences for end of life care 2. Care planning : assessing needs and preferences, agreeing a care plan to reflect these and reviewing these regularly 3. Co-ordination of care 4. Delivering high quality services in all locations 5. Management of the last days of life 6. Care after death; and 7. Support for carers, both during a person’s illness and after their death.

10. Identification -End of life prognostication and dementia • Gold Standards Framework prognostic indicators for dementia : • Unable to walk without assistance, and • Urinary and feacal incontinence, and • No consistently meaningful communication, and • Unable to dress without assistance, and • Barthel score < 3 • Reduced ability to perform ADL’s • Plus any one of the following : • 10% weightloss in the previous 6 months , without other causes, pyelonephritis or UTI, serum albumin 25 g/l , severe pressure sores e.g.stage 3 or 4, recurrent fever, reduced oral intake , aspiration pneumonia

11. Health care needs of people with dementia – last year of life • GP’s saw people with dementia less often in their last year of life than cancer patients. • Carers of people with dementia were less satisfied with the GP than those of cancer patients. • Carers of people with dementia needed more help at home than cancer sufferers with 78% needing help at night • Only 35% of carers of people with dementia found caring rewarding compared to 60% of carers for cancer patients • People with dementia received more social services input than cancer patients.

12. Health care needs of people with dementia – last year of life The main symptoms of people with dementia were : (most common symptoms only detailed here) Urinary incontinence (72%) Pain (64%) Low mood (61%) Constipation (59%) Loss of appetite (57%) When they were present, the symptoms lasted much longer than in cancer patients

13. We must become proactive at supporting people with Dementia to think about advance planning as this is the only way we can empower them to be cared for the way they want to be cared for at end of life. Many families are asked to support decision making at end of life and have never had the conversations.The current issue is, when should it be done ?????????????…………. It should be done shortly after diagnosis, but skilfully to avoid promoting helplessness ADVANCE PLANNING FOR PEOPLE WITH DEMENTIA

14. Carers NEEDS Carers of people with dementia experience greater strain , distress and higher levels of psychological morbidity than carers of other older people and need more support. Advanced discussions with families around end of life care and planning is essential Carers need help to understand what is ahead Carers need help to think about end of life care decisions before they are ‘asked to decide’ Families need to be supported to understand why food and fluids may not be helpful /possible at end of life

15. We need to improve basic dementia care Professionals should : see the PERSON and not the dementia ! • Help the person to feel SAFE • ACCEPT their diagnosis, memory ,cognitive problems and symptoms • JOIN the person with dementia in their reality – keep connected with them • UNDERSTAND what factors affect dementia symptoms. • Improve recognition of PAIN • LISTEN to and support families

16. Routinely plan ahead for end of life care • Understand end of life prognostication and dementia • Routinely encourage advance planning

17. End of life prognostication and dementia • I have seen people with dementia live months and years who have met the LCP criteria !. • Prognostic indicators for eligibility for the LCP are that a team agrees the person is thought to be dying , all reversible causes of the condition have been considered and that they meet at least 2 of the following : • 1. Unable to take tablets 2. The person is semi-comatose • 3. The person is bed bound 4.The person is only able to take sips of fluids

18. HOW CAN WE TAKE THINGS FORWARD • RESEARCH • MONITORING • RAISING AWARENESS • EDUCATION • SUPPORT