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Dementia
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Components of coordinated care

A new instrument to assess caregivers' and care recipients' experiences with networks of dementia care

Rhonda Cockerill

Susan Jaglal

Louise Lemieux Charles

University of Toronto, Canada

Larry Chambers

University of Ottawa and SCO Health Service, Canada

Kevin Brazil

McMaster University and St Joseph's Health System Research Network, Hamilton, Canada

Carole Cohen

University of Torontoand Sunnybrook and Women's College Health Sciences Centre, Ontario, Canada

This article reports on the development of an instrument to measure dementia patients' and their families' experiences with care provision. Using the responses of 267 care recipient/caregiver dyads, exploratory factor analysis was used to extract an underlying structure of the dyads' assessments of their experiences with dementia networks of care. The results suggested that from the perspective of the care recipient and caregiver, it is the individuals who they interact with in their care journey that define and shape the evaluation of their experiences. In the early stages of dementia, the family physician plays a central role in helping dyads understand the disease and the networks of care that are available to them; in later stages of the disease, it is the activities of the health care worker who is central to the dyad's lived experiences of the care they are receiving. The third important construct linked to the period when a care recipient and caregiver dyad was increasingly aware that dementia services may be needed and the process of assessment and placement was underway. Having information about what resources are available and how they can be accessed, and being able to complete assessments and placements in a timely fashion, was central to their assessment of care networks.

Key Words: continuity of care • effectiveness • program evaluation

Dementia, Vol. 5, No. 1, 51-66 (2006)
DOI: 10.1177/1471301206059754


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This article has been cited by other articles:


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M. J. Yaffe, P. Orzeck, and L. Barylak
Family physicians' perspectives on care of dementia patients and family caregivers
Can Fam Physician, July 1, 2008; 54(7): 1008 - 1015.
[Abstract] [Full Text] [PDF]


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AM J ALZHEIMERS DIS OTHER DEMENHome page
S. Jaglal, R. Cockerill, L. Lemieux-Charles, L. W. Chambers, K. Brazil, and C. Cohen
Perceptions of the Process of Care Among Caregivers and Care Recipients in Dementia Care Networks
American Journal of Alzheimer's Disease and Other Dementias, April 1, 2007; 22(2): 103 - 111.
[Abstract] [PDF]