Palliative care and dementia

1. Palliative care and dementia Sarah partington

2. Background. • Palliative care emphasises quality of life. It should not be a philosophy of no hope. • There is a lack of recognition of advanced dementia as a life limiting, incurable disease. • Currently no standardised pathway for end stage dementia. • Lack of research into palliation and dementia. • Little or no guidance on when a person is reaching end stages of dementia.

3. What’s the difference in dementia? • Prolonged and varied illness trajectory. • Traditional palliative care associated with malignant disease. • Lack of understanding , skills, and knowledge among health providers. • Lack of research. • Hancock. K. et al (2006)

4. WHY DOES IT MATTER? • Advanced planning not crisis management. • Prevent inappropriate hospital admissions. • Open honest discussions with MDT and family members. • Advanced symptom management planning, appropriate to that individual and taking into account their uniqueness. • Ensure staff have the knowledge and skills required to deliver high quality effective care. Improved team working – MDT. • Ensure comfort, dignity and reduce distress at end of life.

5. Aims of the research study • To evaluate and implement an end of life assessment tool for people with dementia. • To develop a local tool that will identify end stage dementia. • To educate and support staff and relatives in dementia & advanced care planning. • To develop resources and pathways to guide care.

6. Methodology • Two methods of data collection -Questionnaire & observation • Two specialist dementia care homes (110 beds and 80 beds), 10 residents. • Formal training, resource file, ongoing support and education. • Analysed using descriptive statistics and actions identified.

7. Conclusions & recommendations • Tool found to be useful in practice, alterations made. • Training and support probably most important element. • Common misconception that palliative either: cancer or sent home on poor prognosis package. • Still a believe palliative care means ‘nursed in bed’. • Having experienced care co-ordinator. • Having resource file which included information to give to family. • 1 out of 10 hospitalisation, so not completely prevented and may be appropriate. • Increased carer satisfaction and confidence.

8. 1ST we have to identify the patient’s

9. The surprise question • ‘ would you be surprised if this person was to die in the next 6- 12 months?’ • Think of a person you know or have known………..

10. Patients with dementia must show all of the below characteristics. (tick all that apply) Patients must have had one of the following within the past 12 months. (tick all that apply) NB. This tool is designed to guide care pathways and is not a diagnostic instrument.

12. Thinking Ahead – Advanced Care Planning Discussion. This is not a legal document, but a guide to care and can alter at any time following discussion of any changes. The aim of any discussion about thinking ahead (sometimes called advanced care planning) is to develop a better understanding and recording of individual priorities, needs and preferences and those of their families/ carers. This should support planning and provision of care, and enable better planning ahead to best meet these needs. This philosophy of ‘hoping for the best, but preparing for the worst’ enables a more proactive approach, and ensure that it is more likely that the right thing happens at the right time. It also reduces the need for difficult and emotive decisions to be made at a time of crisis. At any time this plan can change, this is a dynamic planning document to be adapted and reviewed as needed.

13. COPIES TO ALL PRESENT AND GP, ONE COPY TO BE HELD IN PATIENTS RECORDS.

14. End Stage Dementia Resource File • Care pathway • End stage dementia assessment tool • Advanced care planning handover form • Contact numbers • Thinking ahead- advanced care planning discussion form • Steps to discussion making in feeding problems guide • Liverpool care pathway document • Abbey pain scale • Prescription charts • Useful research and leaflets for relatives.

15. FUTURE RECOMMENDATIONS/ RESEARCH • Implementation of tool, education and support package across B & A. • Specialists to support care homes. • Integration with acute trust and hospice. • Further research into symptom control in end stage dementia required.

16. Remember • Palliative care means living well until the point of death. • Don’t be afraid to talk about death and dying. • Continued nutrition and hydration are not always appropriate and may not offer comfort, but prolong suffering and death. • Antibiotics may be appropriate if they provide symptom relief. • Stop inappropriate interventions and medications. • YOU know your clients, ensure their symptoms are managed and use appropriate tools to help. • People can and do improve! So need to reassess on regular basis and alter plans to meet need.

17. References Hughes. J. C. (2006) Palliative care in severe dementia. MA Healthcare Ltd. Hancock. K. et al (2006) Palliative care for people with advanced dementia. Alzheimer’s care quarterly. 7. 1. pp49-57. Henderson. J. 2009 Beyond Barriers: learning together. Journal of Dementia Care. Vol 17 No2 Pp 30-32. Aminoff. B. Adunsky. A. 2006 Their last 6 months: suffering and survival of end stage dementia patients. Age and Ageing. Vol 10. Pp 1093. The Comptroller and auditor general. 2007. Improving services for people with dementia. London. National Audit Office. Rogers. A. 2003. Alzheimer’s disease: Unravelling the mystery. New York. US Department of Health and Human Sciences. Schonwetter. R. Han. B. Small. B. Martin. B. Tope. K. Haley. W. Predictors of six month survival among patients with dementia: an evaluation of hospice Medicare guidelines. American Journal of Hospice Palliative Care. 2003. 20. 105-13. National Institute for Clinical Excellence (2006) Dementia: Supporting people and their carers in health and social care. National Clinical Practice Guideline Number 42. London, NICE Alzheimer’s Society (2007) Dementia UK. London, AS • Cormack, DFS. 1991. The research process in nursing (2nd ed) Oxford. Blackwell Scientific Publication.