RESOURCES
An individual young-onset dementia diagnosis is actually a family diagnosis. Spouses, partners, children and friends become unpaid care partners; this may lead to emotional conflicts, particularly for children whose parent has dementia.
The need for family-oriented support and person-centred care is essential for the ongoing health and well-being of the family unit. YouQuest responds by recognizing the importance of support resources for spouses, minor children, and other care partners.
“Understanding the family perspective will help reduce
direct and indirect costs of young-onset dementia”
DR. PAMELA ROACH, UNIVERSITY OF CALGARY
HELPFUL ARTICLES
THE DIAGNOSIS
Nobody would say that it is Alzheimer’s or dementia at this age
Roach, Drummond, Keady: 2016
Invisible carers: Young People Caring for People With Dementia
Hutchinson, Roberts, Kurrie: 2014
The social and economic burden of frontotemporal degeneration
Galvin, et al: 2017
Young-onset dementia and the need for specialist care: a national and international perspective
March 2017
Young-onset dementia in mental health services
Royal College of Psychiatrists: 2018
Young onset dementia: Internal Medicine Journal
Draper, Withall: 2016
Young Onset Dementia Gap Analysis Report
Alzheimer Society of Canada: 2016
Diagnosis and support for people with young onset dementia and their families
Young Dementia Network: 2016
By Us For Us – University of Waterloo
Research Institute for Aging: Schlegel – U Waterloo-Conestoga
Want to Know More about Dementia? Start Here
The End of Memory: A Natural History of Aging and Alzheimer’s – Jay Ingram
THE IMPACT
Why aren’t people with young onset dementia and their supporters using formal services?
Cations, et al: 2017
Walking in the neighbourhood: Performing social citizenship in dementia
Phinney, et al 2016
Job Loss After Diagnosis of Early-Onset Dementia: A Matched Cohort Study
Sakata, Okumura: 2017
Unmet needs and health-related quality of life in young-onset dementia
Bakker, et al: 2014
The Unique Experience of Spouses in Early-Onset Dementia
Ducharme, et al: 2013
The experience of caring for a partner with young onset dementia: how younger carers cope
Lockeridge, Simpson: 2013
The social experiences of spouses of persons with young-onset dementia
(YOD): Social change, support & resiliency
Hawkins, et al: 2013
Defy Dementia Podcast Series
Baycrest Centre
THE PATH FORWARD
It’s nice to have something to do’: early-onset dementia and maintaining purposeful activity.
Roach, Drummond: 2014
Rehabilitation in dementia care.
Cations, et al: 2018
Young onset dementia: Negotiating future workplace roles and identities
Roach, 2016
Dementia sets lives adrift. Research is finding a better way forward
Grierson: 2018
Exercise interventions for cognitive function in adults older than 50: a systematic review with meta-analysis.
Northey, et al: 2017
Leisure-time physical activity associates with cognitive decline
Willey, et al: 2016
Clearing the Fog of Dementia with Song
Stanton, 2017
Younger Onset Dementia: A Review of the Literature to Inform Service Development
Carter, Oyebode, Koopmans: 2016
Facilitating independence: The benefits of a post-diagnostic support project for people with dementia
Kelly, Innes: 2014
Rehabilitation for people living with dementia: A practical framework of positive support
Clare: 2017
Recreational Activities to Reduce Behavioural Symptoms in Dementia
Kolanowski, Fick, Buettner: 2009
Practice guidelines for recreation therapy in the care of people with dementia
Buettner, Kolanowski: 2013
Lifestyle Modifications That Can Affect Your Risk of Developing Dementia
Butler: 2024