One Day at a Time: How Families Manage the Experience of Dementia
When I was at a conference about COPING with chronic illness in the UK in the late 1980’s, I wondered why, when they spoke about families, they did not use the word " managing "—that is, shaping the situation as best as they could. And I heard one of the audience members discussing caregiving among staff in long-term care settings say: If that’s caring, save me from it. Both of these happenings fostered reflection on what I had learned several years earlier from my colleague, Tom Kitwood, a professor of Social Psychology at the University of Bradford in the UK, and Director of the Bradford Dementia Group. During his visit with his sister, who was a Registered Nurse at the time in Edmonton, Alberta, he reviewed what I came to call Tom Kitwood’s personhood-well-being caring model and the new culture of caring for people with dementia.
The many families participating in my study subsequently revealed two styles of managing. Those with an open style of managing tended to seek supportive care, such as day centres where music, dance, singing, and poetry were prevalent. They found that this fostered enhanced feelings of well-being for both the index person and the family members. And most of these families indicated, using different expressions, that they take life one day at a time—let's concentrate on today and make it a happy day. Their emotional attachment remained as strong as it had been prior to the onset of the illness.
By contrast, those families with a closed style of managing were often not in a position to find non-medical supports. This aspect might have been related to them having fewer family members/long-term friends in nearby areas. This often resulted in the index person being sent to a long-term care institution.
Following completion of the stories of families in this book, I did a series of conference presentations following Kitwood’s teaching, regarding short case studies (or what some of us call Vignettes) regarding how to meet the following 5 needs of families experiencing dementia: (1) Comfort; (2) Attachment; (3) Inclusion; (4) Occupation; (5) Identity. And all 5 needs of families experiencing dementia converge in the central need for love. A copy of this subsequent paper is available upon request—send note to Carole-Lynne (cllenave@ucalgary.ca)
By Carole-Lynne Le Navenec, RN, PhD-Clinical Sociology, University of Toronto, is a member of the Professors Emeriti at the University of Calgery, and a CURAC Board member and Chairperson. Later Live Learning (LLL) Committee, Colleage of University Retirees Association of Canada.
