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Dying with Dementia Integrating a Palliative Approach

Explore the challenges and strategies for implementing a palliative care approach for individuals with late-stage dementia. Learn how to communicate effectively, recognize signs of dying, and support family members. Gain insights into non-effective interventions and the importance of focusing on the certainties of dying with dementia. Discover policies, guidelines, and the importance of keeping death on the table. Grow your end-of-life program with additional resources and education.

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Dying with Dementia Integrating a Palliative Approach

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  1. Dying with Dementia Integrating a Palliative Approach 26th Conference of Alzheimer’s Disease International Toronto, Ontario March 2011 Janice Robinson, RN, MN, GNC(C) Clinical Nurse Specialist The Lodge at Broadmead, Victoria, BC, Canada Operating The Lodge at Broadmead and Veterans Health Centre

  2. Janice Robinson, RN, MN, GNC(C)Clinical Nurse SpecialistThe Lodge at Broadmead Has no real or apparent conflicts of interest to report. Operating The Lodge at Broadmead and Veterans Health Centre

  3. The Lodge at Broadmead • Home to 225 people • 60% Veterans • 75% have Cognitive Impairment • 100% have families • Non-profit residential care [complex care] • Committed interdisciplinary team • Learning organization • Dementia Care Project – funded by Veterans Affairs Canada since 2003

  4. The Dementia Difference: A palliative approach to caring for people with late-stage dementia Workshop Goal – To increase caregivers capacity to provide excellent care through to death, through the application of palliative care principles, specifically focusing on issues that are unique to caring for people with dementia.

  5. Challenges to implementing a palliative approach

  6. Challenges to implementing a palliative approach – workshop participants • How to communicate with people with late stage dementia • How you know when a person with dementia is dying • Responding to a concerned family member • If there are different views on what is “best” for the person with dementia

  7. Challenges to implementing a palliative approach – workshop facilitators • Shifting language away from labelling • Consistent messaging • Differing understandings amoung staff regarding what is ‘best’ practice • Making meaning for people with late stage dementia

  8. Strategy Positive Person Work • Recognition – acknowledged, known by name • Play – exercise in spontaneity & self-expression • Timalation – interaction that is primarily sensory • Celebration – any moment that is joyful • Relaxation – may need to ‘relax’ with others around in order to feel safe • Facilitation – enabling people to do what otherwise they would be unable to do • Kitwood, T. (1997)

  9. Strategy Honest, clear, compassionate information sharing • Listen • Acknowledge the person’s feelings • Talk about the ambiguous dying syndrome

  10. Strategy Focus on the certainties of dying with dementia • Overall trajectory will be a decline. • Death is certain. • Co morbidities will affect the trajectory. • Certain interventions are ineffective in late stage dementia. • There are indicators that often precede the active dying phase.

  11. Strategy “Could he/she be dying” • Changes in status – ask the question • Communicate to family members • Involve the interdisciplinary team • Ensure adequate symptom management – BEFORE this question…

  12. Strategy Non-effective interventions • CPR • Gastric tubes • IV antibiotics • Hospitalization

  13. The Dementia Difference in practice • Keeping death on the table • Balancing living and dying • Policies to support evidence – especially regarding ineffective interventions for people with late stage dementia • Guidelines to support symptom management • Not labelling people “palliative”

  14. Growing the EOL program - our next steps • More written information for staff and family members • Education for volunteers • Continue to grow a culture that embraces a palliative approach

  15. Contact Information Janice Robinson, RN, MN, GNC(C) Clinical Nurse Specialist The Lodge at Broadmead Janice.Robinson@broadmeadcare.com Thanks to Veterans Affairs Canada for generously funding of the BCS Dementia Care Program since 2003

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