Early Dementia Phase
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Information to address client and caregiver needs during the early phases

We met with early dementia support groups (for people diagnosed with early dementia) and with their caregiver support groups and asked these people to tell us their stories about:

  • when they first recognized there was a problem
  • their challenges in finding a diagnosis
  • their (mutual) worry about disclosing the diagnosis
  • their bewilderment in what happens next
  • how they can best cope with what lay ahead

They described in detail

  • which aspects of health care and information worked well for them, and what didn't
  • learning to cope, often in the absence of identifiable community supports

Consistently, when they were able to find help through Alzheimer's Society of British Columbia, their distress was significantly relieved.

Their stories had remarkably good alignment with clinical providers (ie: community case managers) who described:

  • frustration at not seeing people "early enough"
  • the challenges of trying to help persons with dementia
  • the challenges with their caregivers for the first time when they hit crisis (often in the middle stages)

In fact, the stories that arose out of early support groups are the "upstream stories", of these nurse's experiences. They are stories that are not well known, but which every health provider needs to hear and listen to.

Learn about the issues in the early dementia phase

Four "clinical pinch-points" were identified by persons with early phase dementia, their caregivers, and interdisciplinary health providers

Toolkit

The clinical toolkit for the Early Dementia Phase includes assessment tools, learning resources and practice support tools.

Other resources

 

MoH     PCQO