1. Dying with Dementia Family members experiences and observations of end-of-life care Operating The Lodge at Broadmead, Veterans Health Centre and Nigel Services

2. Fiona Sudbury, RN, MHSc, GNC(C) Director of Care, The Lodge at Broadmead Has no real or apparent conflicts of interest to report.

3. 3 The Lodge at Broadmead Victoria, B.C., Canada A publicly-funded, non-profit care home to 225 people 60% are Veterans 75% have cognitive impairment Dementia Care Program since 2003 Focus on end-of-life dementia care “The Dementia Difference” education includes content on support for family members

4. Study Goals To identify aspects of end-of-life care most important to family members To identify implications for practice

5. 5 Central Research Question How did family members of Veterans who died within the last 12 – 18 months experience the care they and their relative received?

6. Methods Semi-structured interview External consultant 12 family members 1:1 or telephone Content analysis

7. 7 Interview topics for family members: Preparedness for resident’s dying/death Sources of information about dying/death Experiences of inclusion during the dying process Observations of the relative’s quality of life until death Experiences of comfort and support Aspects of physical, emotional and spiritual care Grief and sources of support What was well done/could be improved What was most important

8. Results – what family members valued Knowing the person Quality of life until death Acts of kindness

9. What family members wanted Accurate health info Care conferences as health declines Spiritual care Information on grief and PTSD

10. 10 Conclusions Confirmed the value of a person-centred approach right through to death Caring behaviours make an lasting impression Clear 1:1 and team communication essential The staff were applying the information learned in The Dementia Difference education

11. Implications for Practice Personal histories Death on the table Clarify goals of care through conferences Share appreciation for care with staff

12. 12 Contact Information Fiona Sudbury, RN, MHSc, GNC(C) Director of Care The Lodge at Broadmead Fiona.Sudbury@broadmeadcare.com Thanks to Veterans Affairs Canada for funding the Dementia Care Program.

13. 13 References Alzheimer’s Australia. (2006). Palliative Care and Dementia. Discussion Paper 7. [Electronic version]. Retrieved November 1, 2006 from http://www.alzheimers.org.au/upload/PalliativeCare.pdf.http://www.alzheimers.org.au/upload/PalliativeCare.pdf Bern-Klug, M. (2004). The ambiguous dying syndrome (Electronic Version). Health and Social Work, 29(1), 55-65. Canadian Hospice Palliative Care Association. (2002). A model to guide hospice palliative care. Retrieved from www.cpca.net.www.cpca.net Dempsey, M. & Baago, S. (1998). Latent grief – The unique and hidden grief in carers of loved ones with dementia. Alzheimer Society of Niagara Region, 1-10. Kristjanson, L. J., Walton, J., Toye, Christine. (2005). End-of-life challenges in residential aged care facilities: a case for a palliative approach to care. International Journal of Palliative Nursing, 11(3), 127-129.

14. 14 References Lucero, M. (2004). Enhancing the visits of loved ones of people in late stage dementia. Alzheimer’s Care Quarterly, 5(2), 173-177. Missouri’s End of Life Coalition’s End of Life in the Nursing home task force. (2003). Guidelines for end of life care in long term care facilities: Emphasis on developing palliative care goals. Murray, K. (2006). Essentials in palliative care: A resource for caregivers. Saanichton, BC: Life & Death Matters. Small, N., Froggatt, K. & Downs, M. (2007). Living and Dying with Dementia: Dialogues about palliative care. Oxford: Oxford University Press.