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What do children need to know about dementia? The perspectives of children and people with personal experience of dementia

Published online by Cambridge University Press:  02 October 2017

Jess R. Baker ,
Yun-Hee Jeon ,
Belinda Goodenough ,
Lee-Fay Low ,
Christine Bryden ,
Karen Hutchinson  and
Laura Richards
Jess R. Baker*
Affiliation:
Psychiatry Research and Teaching Unit, University of New South Wales, Liverpool Hospital, NSW, Australia
Yun-Hee Jeon
Affiliation:
Sydney Nursing School, University of Sydney, Camperdown, NSW, Australia
Belinda Goodenough
Affiliation:
Dementia Training Australia, University of Wollongong, Wollongong, NSW, Australia
Lee-Fay Low
Affiliation:
Faculty of Health Sciences, University of Sydney, Lidcombe, NSW, Australia
Christine Bryden
Affiliation:
School of Theology, Charles Sturt University, Queensland, Australia
Karen Hutchinson
Affiliation:
Sydney Medical School, University of Sydney, Hornsby Kur-ring-gai Hospital, NSW, Australia
Laura Richards
Affiliation:
Randwick Public School, Randwick, NSW, Australia
*
Correspondence should be addressed to: Jess R. Baker, Psychiatry Research and Teaching Unit, University of New South Wales, Liverpool Hospital, NSW 2170, Australia. Phone +61 2 9616 4294. Email: [email protected].
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Abstract

Background:

The vision for dementia-friendly communities is challenged by limited public awareness and stigma about dementia. The study aim was to elicit stakeholder priorities for the message content of an education program to improve dementia awareness among youth; specifically, what do children need to know about dementia?

Methods:

A qualitative inquiry using interviews and focus groups was used. Purposive sampling achieved maximum variation in dementia experience and participant characteristics. Focus groups with Scouts in the community aged 9–12 years old (n = 22) used innovative techniques to explore children's attitudes towards people with dementia. Participants with personal experience of dementia were five people with early-stage dementia; 12 adult primary carers; four non-primary carers; and six grandchildren of a person with dementia. They were asked what is important for children to understand about dementia and what attitudes they may like an education program to confer. Content analysis was performed using NVivo10.

Results:

Strong themes to emerge were that children need to know the whole truth about dementia; that individuals with dementia are “still people,” that it is “not the fault” of the person with dementia; and that dementia is different and typically unpredictable for everyone. Discussions also indicated a need to educate children about ways to relate to a person with dementia, and to appreciate “positives” within a relationship.

Conclusions:

Children are our future citizens. Developing an education program for children with this message content may be fundamental to de-stigmatizing dementia and laying the foundation to dementia-friendly communities.

Keywords

dementiachildrenstigmaattitudeseducation
Type
Research Article
Information
International Psychogeriatrics , Volume 30 , Issue 5: Issue Theme: Brain Imaging , May 2018 , pp. 673 - 684
Copyright
Copyright © International Psychogeriatric Association 2017 

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References

Alfieri, T., Ruble, D. N. and Higgins, E. T. (1996). Gender stereotypes during adolescence: developmental changes and the transition to junior high school. Developmental Psychology, 32, 1129–1137.Google Scholar
Alzheimer's Australia SA (2013). Is it Dementia?. http://isitdementia.com.au.Google Scholar
Alzheimer's Australia (2012). Exploring Dementia and Stigma Beliefs. Available at: http://www.fightdementia.org.au/common/files/NAT/FDC_Budget_2014_FINAL.pdf.Google Scholar
Alzheimer's Disease International (2012). World Alzheimer Report 2012: Overcoming the Stigma of Dementia. London: Alzheimer's disease International.Google Scholar
Alzheimer's Society (2015). Available at: www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2328.Google Scholar
Australian Bureau of Statistics (2013). New Data from the 2011 Census Reveals the Most Advantaged and Disadvantaged Areas in New South Wales. Available at: http://www.abs.gov.au/ausstats/[email protected]/mediareleasesbyCatalogue/4DC6126B38D9921BCA257B3B001AF6E8?OpenDocument.Google Scholar
Baker, J. R., Goodenough, B., Jeon, Y. H., Bryden, C., Hutchinson, K. and Low, L. F. (in press). The Kids4Dementia education program is effective in improving children's attitudes towards dementia. Dementia.Google Scholar
Barraza, J. A. and Zak, P. J. (2009). Empathy toward strangers triggers oxytocin release and subsequent generosity. Annals of the New York Academy of Sciences, 1167, 182–189.Google Scholar
Batson, C. D., Batson, J. G., Todd, R. M., Brummett, B. H., Shaw, L. L. and Aldeguer, C. M. R. (1995). Empathy and the collective good: caring for one of the others in a social dilemma. Journal of Personality and Social Psychology, 68, 619–631.CrossRefGoogle Scholar
Castelán Cargile, A. (2016). Can empathy improve concern for secondary group members? Testing an emotionally engaging video intervention. Communication Research Reports, 33, 265–268.Google Scholar
Celdrán, M., Triadó, C. and Villar, F. (2011). “My grandparent has dementia”: how adolescents perceive their relationship with grandparents with a cognitive impairment. Journal of Applied Gerontology, 30, 332–352.CrossRefGoogle Scholar
Celdrán, M., Villar, F. and Triadó, C. (2014). Thinking about my grandparent: how dementia influences adolescent grandchildren's perceptions of their grandparents. Journal of Aging Studies, 29, 1–8.Google Scholar
Coleman, L. (2012, Oct 22). Early onset dementia video. Available at: https://www.youtube.com/watch?v=2iHUXSVv8Mg.Google Scholar
Corrigan, P. W., Lurie, B. D., Goldman, H. H., Slopen, N., Medasani, K. and Phelan, S. (2005). How adolescents perceive the stigma of mental illness and alcohol abuse. Psychiatric Services, 56, 544–550.Google Scholar
Corrigan, P. W., Morris, S. B., Michaels, P. J., Rafacz, J. D. and Rüsch, N. (2012). Challenging the public stigma of mental illness: a meta-analysis of outcome studies. Psychiatric Services, 63, 963–973.Google Scholar
Cowley, K. (2005). Assessing children's views of dementia. Journal of Dementia Care, 13, 36–37.Google Scholar
Crabtree, J. and Mack, J. (2010). Designing a training programme to improve staff attitudes towards people with dementia. Nursing Times, 106, 14–16.Google Scholar
Davis, S., Fleming, R. and Marshall, M. (2009). Environments that enhance dementia care: issues and challenges. In Nay and Garratt (eds.), Older People: Issues and Innovations in Care Australia. Chatswood, NSW: Elsevier Australia.Google Scholar
Denny, S. S. et al. (2012). Caring for children of parents with frontotemporal degeneration: a report of the AFTD task force on families with children. American Journal of Alzheimer's Disease & Other Dementias, 27, 568–578.CrossRefGoogle ScholarPubMed
Eagly, A. H. and Chaiken, S. (1993). The Psychology of Attitudes. Fort Worth, TX: Harcourt Brace Jovanovich.Google Scholar
Fox, C., Buchanan-barrow, E. and Barrett, M. (2008). Children's understanding of mental illness: an exploratory study. Child: Care, Health and Development, 34, 10–18.Google Scholar
Gelman, C. and Greer, C. (2011). Young children in early-onset Alzheimer's disease families: research gaps and emerging service needs. American Journal of Alzheimer's Disease and other Dementias, 26, 29–35.Google Scholar
Guba, E. G. (1981). Criteria for assessing the trustworthiness of naturalistic inquiries. Educational Communication & Technology, 29, 75–91.Google Scholar
Howard, K. and Singleton, J. F. (2001). The forgotten generation. Activities, Adaptation & Aging, 25, 45–57.Google Scholar
Howard251a (2010, April 13). Alzheimer's Sundown Syndrome – Awake All Night. Available at: https://www.youtube.com/watch?v=9Ak1tgzv_0Q.Google Scholar
Hutchinson, K., Roberts, C., Daly, M., Bulsara, C. and Kurrle, S. (2016). Empowerment of young people who have a parent living with dementia: a social model perspective. International Psychogeriatrics, 28, 657–668.CrossRefGoogle ScholarPubMed
Marepuwaterloo, (2014, June 6). Cursing. https://www.youtube.com/watch?v=oYsACPYV5lw.Google Scholar
Morse, J. M. (1995a). The significance of saturation. Qualitative Health Research, 5, 147–149.Google Scholar
Morse, J. M. and Field, P. A (1995b). Qualitative Research Methods for Health Professionals Thousand Oaks, CA: Sage.Google Scholar
National Health and Medical Research Council (2015). NHMRC National Dementia Research & Translation Priority Framework: Research. Available at: https://www.nhmrc.gov.au/research/boosting-dementia-research-initiative/nhmrc-consultation-dementia-research-priorities.Google Scholar
NHSlocal (2012, July 20). Dementia in Schools Teaching Aid – Part 2. Available at: https://www.youtube.com/watch?feature=player_embedded&v=AHuK34VzSbg.Google Scholar
Patton, M. Q. (2002). Qualitative Evaluation and Research Methods. CA: Sage.Google Scholar
Purves, B. A. (2011). Exploring positioning in Alzheimer disease through analyses of family talk. Dementia, 10, 35–58.CrossRefGoogle Scholar
QSR International Pty Ltd (2012). NVivo qualitative data analysis software. Version 10.Google Scholar
Rollnick, S. and Miller, W. R. (1995). What is motivational interviewing?. Behavioural and Cognitive Psychotherapy, 23, 325–334.Google Scholar
Sakai, E. Y., Carpenter, B. D. and Rieger, R. E. (2012). “What's wrong with grandma?”: depictions of Alzheimer's disease in children's storybooks. American Journal of Alzheimer's Disease and other Dementias, 27, 584–591.Google Scholar
Sambi1968 (2010, Sept 22). My Mum Alzheimer's (2 years on) Available at: https://www.youtube.com/watch?v=1LKannoS6OI.Google Scholar
Svanberg, E., Stott, J. and Spector, A. (2010). Just helping: children living with a parent with young onset dementia. Aging and Mental Health, 14, 740–751.Google Scholar
Williams, A., O'Driscoll, K. and Moore, C. (2014). The influence of empathic concern on prosocial behavior in children. Frontiers in Psychology, 5, 1–8.Google Scholar
Wolf, M. S. et al. (2009). Literacy and learning in healthcare. Pediatrics, 124, S275–S281.Google Scholar