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Carole A. Cohen MD March 10, 2008

Caring for the Caregiver: How to Make a Difference. Carole A. Cohen MD March 10, 2008. Learning Objectives. Understand the dementia journey over time Appreciate the challenges faced by all involved Describe helpful strategies to support caregivers. Reflective Thought.

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Carole A. Cohen MD March 10, 2008

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  1. Caring for the Caregiver: How to Make a Difference Carole A. Cohen MD March 10, 2008

  2. Learning Objectives • Understand the dementia journey over time • Appreciate the challenges faced by all involved • Describe helpful strategies to support caregivers

  3. Reflective Thought “When we walk to the edge of all the light we have and take a step into the darkness of the unknown, we must believe one of two things will happen …There will be something solid for us to stand upon. Or we will be taught to fly.” -Anonymous

  4. Introduction • Elements of fantasy: A new perspective • The Dementia journey • Being a caregiver guide & support Imagine & Reflect

  5. Elements of Fantasy: A New Perspective • Heroine (or Hero) • Companion • Quest • Obstacles • Magic

  6. Elements of Fantasy • Heroine = person with dementia • Companion = caregiver • Quest = quality of life • Obstacles • Magic = support

  7. Imagine & Reflect

  8. Preparing for a Journey • What kind of traveler are you? • How do you deal with the unknown, with obstacles etc.? • Who would you take on the journey? • Are they a good traveler? • Do you travel well together? • Would either of you ask for directions?

  9. The Dementia Journey • > 10 years duration • Multiple stages • Multiple settings • Multiple challenges

  10. The Dementia Journey • No road map or known destination • Not predictable • Changes in direction often precipitated by a crisis • Many choices; ethical dilemmas Imagine & Reflect

  11. Quest = Quality of Life “the individual’s perceptions of their position in life in the context of the culture and value system in which they live and in relationship to their goals, expectations and standards” -WHO definition

  12. Quality of Life & Dementia • Sense of identity • Meaningful activity • Adequate food, shelter, clothing • Companionship • Sense of security

  13. The Dementia Journey: Setting the Stage Heroine + Companion • personality • coping style • social support • cultural norms • previous experience with the health care system

  14. The Dementia Journey Begins Pre-diagnosis Behavioural Changes Interpretation of Changes Help Seeking

  15. The Dementia Journey: Entering the System • Diagnostic workup • Communicating the diagnosis • After the diagnosis

  16. The Dementia Journey: Navigating the System • Sharing the news • Asking for help • Using the help

  17. The Dementia Journey: The Long Haul • Progressive changes & losses • Challenges & positive experiences • Fatigue & frustration • Crises

  18. The Dementia Journey: Moving to a New Home • Promises made • Circumstances of the move • Disruption to the routine • Establishing a new routine

  19. The Dementia Journey: Nearing the End •  cognitive abilities • physical abilities • Ethical issues • Ideas re death & dying

  20. Magic = Support Caregiver Guide & Support

  21. Caregiver Guide • To show the way • To direct the course • To give instruction; to instruct

  22. CaregiverSupport • To carry or bear the weight of • To give courage • To give approval, faith, confidence • To help or comfort

  23. Caregiver Guide & Support • Try to see the client/caregiver in their journey • Look • Listen

  24. Caregiver Guide & Support • Questions to answer • Help you can give

  25. Questions to Answer • Caregiver + person with dementia • Caregiver beliefs & knowledge • Caregiver expectations • Caregiver challenges & rewards • Caregiver coping style

  26. Questions to Answer • Caregiver assistance & response • Where are you meeting the caregiver: • Place (home, care facility, clinic) • Time in the dementia journey • What lies behind and ahead

  27. Help You Can Give • Don’t make assumptions • Meet caregivers where they are • Remember they have not been on this journey before • Learn from caregivers about the person they know

  28. Help You Can Give • Help them “hope for the best and plan for the worst” • Recognize their grief • Recognize their successes

  29. Help You Can Provide • Provide “education” re illness • Provide “instruction” re coping with behaviours • Insure caregivers have emotional support • Help caregivers ask for help

  30. Conclusion • Dementia as a journey • “Imagine & reflect” to appreciate the experience • Strive to understand the individual caregiver experience • Help you can provide the caregiver

  31. Reflective Thought “When we walk to the edge of all the light we have and take a step into the darkness of the unknown, we must believe one of two things will happen …There will be something solid for us to stand upon. Or we will be taught to fly.” -Anonymous

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