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When Dementia is in the House: Needs Assessment Survey for Young Caregivers

Published online by Cambridge University Press:  23 September 2014

Katherine R. Nichols ,
David Fam ,
Cheryl Cook ,
Michelle Pearce ,
Gail Elliot ,
Sylvia Baago ,
Kenneth Rockwood  and
Tiffany W. Chow
Katherine R. Nichols
Affiliation:
Honolulu, Hawaii
David Fam
Affiliation:
Rotman Research Institute, Baycrest Centre for Geriatric Care
Cheryl Cook
Affiliation:
Dalhousie University Geriatrics, Halifax, Nova Scotia
Michelle Pearce
Affiliation:
Young Carer's Initiative, Hamilton, Ontario
Gail Elliot
Affiliation:
Gilbrea Centre for Studies in Aging, McMaster University, Hamilton, Ontario
Sylvia Baago
Affiliation:
Young Carer's Initiative, Hamilton, Ontario
Kenneth Rockwood
Affiliation:
Dalhousie University Geriatrics, Halifax, Nova Scotia
Tiffany W. Chow*
Affiliation:
Rotman Research Institute, Baycrest Centre for Geriatric Care University of Toronto, Toronto
*
Rotman Research Institute, Baycrest, 3560 Bathurst Street, 8th Floor Posluns Bldg., Toronto, Ontario, M6A 2E1, Canada. Email: tchow@research.baycrest.org
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Abstract:

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Objective:

To learn more about the needs and experiences of young carers for patients of frontotemporal dementia (FTD) in order to create a relevant support website for young caregivers to dementia patients.

Methods:

Two focus groups were held with a total of fourteen young carers aged 11-18. The data corpus was collected through a semi-structured interview facilitated by a medical journalist who had prior experience as a caregiver to a patient with FTD. The transcripts were narrowed to a dataset for descriptive analysis using a coding scheme to reveal the main themes of their responses.

Results:

Seven overlapping theme areas were: emotional impact of living with a parent with FTD, caregiving, coping, symptoms, diagnosis, relationships, and support. Based on the participants' responses, a website was launched providing supportive information and counsel for young carers.

Conclusion:

Young carers saw the experience of caring for a parent with early-onset dementia as positive overall, but identified opportunities for professionals to assist them in overcoming stigma and the challenge of balancing childhood and adolescent development within this context.

Type
Original Article
Information
Canadian Journal of Neurological Sciences , Volume 40 , Issue 1 , January 2013 , pp. 21 - 28
Copyright
Copyright © The Canadian Journal of Neurological 2013

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