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Understanding the educational and support needs of informal care-givers of people with dementia attending an outpatient geriatric assessment clinic

Published online by Cambridge University Press:  28 August 2018

Thom J. Ringer ,
Matthew Wong-Pack ,
Patricia Miller ,
Christopher Patterson ,
Sharon Marr ,
Brian Misiaszek ,
Tricia Woo ,
Richard Sztramko ,
Peter George Vastis  and
Alexandra Papaioannou
Thom J. Ringer*
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Mount Sinai Academic Family Health Team, Toronto, Ontario, Canada
Matthew Wong-Pack
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada University of Toronto Faculty of Medicine, Toronto, Ontario, Canada
Patricia Miller
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada School of Rehabilitation Sciences, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada
Christopher Patterson
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Department of Geriatric Medicine, McMaster University, Hamilton, Ontario, Canada
Sharon Marr
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Department of Geriatric Medicine, McMaster University, Hamilton, Ontario, Canada
Brian Misiaszek
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Department of Geriatric Medicine, McMaster University, Hamilton, Ontario, Canada
Tricia Woo
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Department of Geriatric Medicine, McMaster University, Hamilton, Ontario, Canada
Richard Sztramko
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Department of Geriatric Medicine, McMaster University, Hamilton, Ontario, Canada
Peter George Vastis
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Royal College of Surgeons in Ireland, Dublin, Ireland
Alexandra Papaioannou
Affiliation:
GERAS Centre, St. Peter's Hospital, Hamilton, Ontario, Canada Department of Geriatric Medicine, McMaster University, Hamilton, Ontario, Canada
*
*Corresponding author. Email: [email protected]
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Abstract

Informal (unpaid) care-givers of older people with dementia experience stress and isolation, causing physical and psychiatric morbidity. Comprehensive geriatric assessment clinics represent an important geriatrician-led model of dementia care. Our qualitative study examined the educational and support needs of care-givers of people diagnosed with dementia at a geriatric assessment clinic, resources used to address those needs and challenges experienced in doing so. We conducted structured thematic analysis of interviews with 18 informal care-givers. Participants’ narratives reflected four themes. First, care-givers sought information from varied sources, including the Alzheimer Society, the internet and clinic staff. Responsive behaviours, the expected progression of dementia and system navigation were topics of particular interest. Second, care-givers obtained assistance from public, for-profit and voluntary sources. Third, care-givers received little assistance. Two-thirds received fewer than four hours of help weekly from all sources combined, and none more than 15. Several received no assistance whatsoever. Publicly funded support workers’ tasks, and their timing, were often unhelpful. Finally, while numerous care-givers felt physical and emotional strain, and worried about how poor health impaired their care-giving, many hesitated to seek help. The needs of this unique population of informal care-givers can be met by improved home-care service flexibility, and access to trustworthy information about the expected progression of dementia and skills for managing behavioural and psychological symptoms.

Keywords

informal care-giversdementiaolder peopleeducationthematic analysis
Type
Article
Information
Ageing & Society , Volume 40 , Issue 1 , January 2020 , pp. 205 - 228
Copyright
Copyright © Cambridge University Press 2018 

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