Dementia: Palliative and End of Life (EoL) Care Is Everyone's Business

1. Dementia: Palliative and End of Life (EoL) Care Is Everyone's Business Beke Tshuma Palliative and End of Life Care (EoL)for People with Dementia in Hertfordshire Project Lead Hertfordshire Partnership NHS Foundation Trust (HPFT) Wendy Ward Strategic Liaison Dementia Nurse for Hertfordshire Hertfordshire Partnership NHS Foundation Trust

2. Dementia:National Influences and drivers of palliative and EoL care. • 2001 - National Service Framework for Older People • 2003 - Building on the Best: Choice, responsiveness and equity in the NHS. - Funding for implementation of EoL Care initiatives. • 2004 - End of life Care Programme - NICE Clinical Guidance on ‘Improving Supportive and Palliative Care’ • 2006 - NICE Clinical Guidance 42 “ Dementia: Supporting people with dementia and their Carers in health and social care”. • 2008 - Darzi report ‘Next stage review’ - National End of Life Care Strategy - East of England ‘Towards the Best Together’ - Delivering Quality Healthcare for Hertfordshire. • 2009 - Living Well with Dementia: A National Dementia Strategy • 2006 – Date - National Council for Palliative Care: The dementia Project

3. National and Local Initiatives: Palliative and EoL Care for People with Dementia Steering Group National Council for Palliative Care Link into Department of Health (DoH) National Dementia Strategy (NDS) Implementation Steering Group Link into Strategic Health Authority End of Life Care (EoL) Strategy Network NDS Quality of Care Group NDS Objective 12 “Living Well with Dementia in Care Homes” NDS Obj.:11

4. Objective 11: “Living Well with Dementia in Care Homes” • Improving quality of care for people with dementia • Develop explicit leadership for people with dementia • In reach from mental health community services • Defining care pathways – integrating palliative and end of life care through the care pathway from diagnosis – death. • Defining outcome measurements – quantitative but also qualitative

5. Palliative Care Palliative Care • “..the active holistic care of service users with advanced illness. • Managing pain and other symptoms and provision of psychological, social and spiritual support is paramount. • The goal...achievement of best quality of life and for service users and their families/carers, to die with dignity and in a place of their choice.” NICE 2006

6. Palliative and End of Life Care Dementia care should: • Incorporate palliative care from the time of diagnosis till death • Support the quality of life • Enable people to live and die with dignity in a place of their choice • Support the carers with their anticipatory grief and at bereavement Nice 2006 Definition: End of Life Care • Care that helps all those with advance, progressive, incurable illness to live as well as possible until death. NCPC 2009

7. Take a moment to think about What makes you who you are? What experiences in life have you had? How do these experiences effect what you say and do? What do you like? What do you dislike? What are you routines?

8. Recovery in Dementia • R Read about dementia • E Encourage strengths • C Communicate from the heart • O Observe non verbal cues • V Value the person beyond diagnosis • E Emotional wellbeing • R Review what works and repeat • Y Yes the patient is always right

9. Verbal insult Shouting Physical aggression Hitting Biting Spiting Throwing objects Scratching Wanting to go to work Waiting for the bus Looking for parents Restlessness Pacing Excessive fidgeting Hand wringing Following people around Abnormal vocalization Apathy Seeing things that are not there Hearing things that are not there Beliefs that are untrue and cannot be reasoned out from Distressed behaviour NOT Challenging behaviour

10. Case Studies

11. References: Department of Health (2001). The National Service Framework for Older People. London: Department of Health. Department of Health (2001). Building on the best, choice, responsiveness, and equity in the NHS. London : Department of Health. Department of Health (2005). Mental Capacity Act. London: Department of Health Department of Health, (2008) End of Life Care Strategy. London: Department of Health Department of Health (2006). Our Health, Our Care, Our Say: A New Direction for Community Services. London: Department of Health. Department of Health, (2009) Living Well with Dementia: The National Dementia Strategy. London: Department of Health Hertfordshire Partnership NHS Foundation Trust http://www.hertspartsft.nhs.uk/about-us/

12. References: National Council for Palliative Care (2006). Exploring Palliative Care for People with Dementia. London National Council for Palliative Care (2007). Progress with Dementia: Moving Forward Addressing Palliative Care for People with Dementia. London National Council for Palliative Care (2008). Creative Partnerships: Improving Quality of Life at the End of Life for People with Dementia. London. National Council for Palliative Care (2009). Out of the Shadows: End of life care for people with dementia. London. National End of Life Care Programme (2004). http://www.endoflifecareforadults.nhs.uk/ National Institute for Health and Clinical Excellence (2006). Dementia: Supporting people with dementia and their carers. London: www.nice.org.uk Office of the Public Guardian. http://www.publicguardian.gov.uk/

13. Contact details: Beke Tshuma beke.tshuma@hertpartsft.nhs.uk 07768557524 Wendy Wardwendy.ward@hertspartsft.nhs.uk 07900652700