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Dying with Dementia Family members experiences and observations of end-of-life care

Dying with Dementia Family members experiences and observations of end-of-life care. Operating The Lodge at Broadmead, Veterans Health Centre and Nigel Services. Fiona Sudbury, RN, MHSc, GNC(C) Director of Care, The Lodge at Broadmead. Has no real or apparent

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Dying with Dementia Family members experiences and observations of end-of-life care

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  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. The Lodge at BroadmeadVictoria, 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. 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. 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. 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. 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.

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