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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

 
September 2014
Sep 30, 2014 3:23 PM

An elderly woman is diagnosed with colorectal cancer and her daughter sheds light on the incidents that lead to her premature death.

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All stories, All patient stories, Long-term care  
  
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  
  
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