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Caregiver stories

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The unsung partners

Family caregivers are the unsung partner in a patient's care team, yet their enormous contribution to the health care system is often overlooked. As they move through the health care system beside their loved one, family caregivers experience firsthand the gaps in care and poor transitions between care settings. We have much to learn from the experiences of family caregivers.

Caregiver and patient - Make your experience count

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  
March 2014

Mar 25, 2014 10:59 AM

This patient story is told from a spouse's perspective as he navigated Ontario's healthcare system alongside his wife as she received treatment for a rare form of leukemia. It highlights some of the challenges facing patients living with chronic conditions, such as poor coordination of care and gaps in communication.

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All stories, All patient stories, All caregiver stories, Patient-provider relationship, End-of-life care  
December 2013

Dec 18, 2013 11:40 AM

A fractured hip becomes a nightmare of cascading problems because of errors and miscommunication in a Toronto hospital.

What we learned:

To fully understand this story we would need more information, however, here is what we were able to learn:

1.  Community care transportation should be free to patients
2.  Communication between local hospital and Toronto larger hospital must be clear
3.  The number of transfer requests from the patient and family caregivers could be used as quality indicators
4.  Is there a process of tracking incoming information between hospitals?
5.  Is the phone discussion recorded, or is there any other way of tracking information?

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All stories, All patient stories, All caregiver stories, Patient-provider relationship  
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  

Oct 28, 2013 8:00 PM

This story reveals the difficulties of protecting a frail 93 year old from the hospital, hospital tests, procedures and long wait times.

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All stories, All caregiver stories  
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