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Understanding Social Changes in the Experience of Dementia

ROGER, KERSTIN STIEBER PHD, MED

FEATURE TOPIC: HEARING AND HEALING THE HURTS OF DEMENTIA, PART II
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People living with dementia have largely been neglected from research participation. This has resulted in little available information regarding how they may experience social changes as part of this end-of-life trajectory. This article discusses empirical data derived from research participants living with dementia regarding their experience of social changes. Primary themes include public social sites, friendships, family, and home care interactions. The discussion frames these data in light of previous work done on personhood and dementia, revealing how personhood continues after diagnosis. Sustaining the dignity of people with dementia is proposed in conclusion, and recommendations for improved care are stated.

Kerstin Stieber Roger, PhD, MEd, is a sociologist with an interest in ethics, and training and experience as a clinical psychotherapist at the Manitoba Palliative Care Research Unit. Dr. Roger is soon ending her second year as a Post Doctoral Health Sciences Center Fellow at the University of Manitoba.

Address correspondence to: Kerstin Stieber Roger, PhD, MEd, Manitoba Palliative Care Research Unit, CancerCare Manitoba, 675 McDermot Ave, Winnipeg, Manitoba, Canada R3E OV9. E-mail: rogerk@cc.umanitoba.ca.

©2006Lippincott Williams & Wilkins, Inc.