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Patient stories

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Stories can lead to change

Your health care experiences reveal authentic patient priorities, including

  • Where health care design or delivery could be improved
  • What constitutes patient and family-centred care
  • Ways to improve the patient experience
April 2014
Apr 15, 2014 11:34 AM

This narrative is written by the son of a woman who was in late stage Alzheimer’s disease and unable to express herself. The narrative shows some of the problems which may occur when the patient is unable to express herself in words or physical actions and the health care personnel, have limited knowledge, understanding, or experience of Alzheimer disease and related dementia.

What we learned:

The following are the observations of her son:

1. People with Alzheimer’s disease experience pain in exactly the same way and intensity as people without cognitive impairment; people with dementia simply lack the words and physical reactions to express the intensity of the pain they experience in ways that can be readily understood by healthcare providers
2. People with dementia must be accompanied by a caregiver/spokesperson to speak on their behalf or else a comprehensive medical dossier, which can speak to a medical specialist or hospital admissions
3. Healthcare personnel at all levels and specialities rarely have more than the most basic knowledge of the impact of dementia on the physical, mental, and psychological well-being of the frail elderly patient
4. Professional expectations/ financial remuneration for custodial/health care staff are much less for people working in long term care institutions than those for health care personnel working in hospitals

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All stories, All caregiver stories, Long-term care, Patient-provider relationship, Degenerative disorder  
February 2014

Feb 25, 2014 10:46 AM

This story is told from a friend's perspective: an elderly couple with chronic illnesses is grappling with hospitalization and living at home without the appropriate support and effective communication between caregivers, social workers and health care providers.

What we learned:

1. The names and activities of car givers, involved neighbours, social workers should be recorded and available to all in a diary in the home of the elderly patient
2. The privacy considerations should not inhibit effective communication that helps the patient
3. The criteria should be “what is best for the patients well-being”, not just “we cannot give out that information”

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All stories, All patient stories, Patient-provider relationship, Degenerative disorder  
October 2013

Oct 28, 2013 8:29 PM

This patient story is told from the perspective of a daughter. She explains how her once independent and intelligent mother underwent mental and physical deterioration at the hands of dementia.

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All stories, All caregiver stories, End-of-life care, Degenerative disorder  
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