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

  • Jess R. Baker (a1), Yun-Hee Jeon (a2), Belinda Goodenough (a3), Lee-Fay Low (a4), Christine Bryden (a5), Karen Hutchinson (a6) and Laura Richards (a7)...

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.

Copyright

Corresponding author

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: jessica.baker@unsw.edu.au.

References

Hide All
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, 11291137.
Alzheimer's Australia SA (2013). Is it Dementia?. http://isitdementia.com.au.
Alzheimer's Australia (2012). Exploring Dementia and Stigma Beliefs. Available at: http://www.fightdementia.org.au/common/files/NAT/FDC_Budget_2014_FINAL.pdf.
Alzheimer's Disease International (2012). World Alzheimer Report 2012: Overcoming the Stigma of Dementia. London: Alzheimer's disease International.
Alzheimer's Society (2015). Available at: www.alzheimers.org.uk/site/scripts/news_article.php?newsID=2328.
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/abs@.nsf/mediareleasesbyCatalogue/4DC6126B38D9921BCA257B3B001AF6E8?OpenDocument.
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.
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, 182189.
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, 619631.
Castelán Cargile, A. (2016). Can empathy improve concern for secondary group members? Testing an emotionally engaging video intervention. Communication Research Reports, 33, 265268.
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, 332352.
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, 18.
Coleman, L. (2012, Oct 22). Early onset dementia video. Available at: https://www.youtube.com/watch?v=2iHUXSVv8Mg.
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, 544550.
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, 963973.
Cowley, K. (2005). Assessing children's views of dementia. Journal of Dementia Care, 13, 3637.
Crabtree, J. and Mack, J. (2010). Designing a training programme to improve staff attitudes towards people with dementia. Nursing Times, 106, 1416.
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.
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, 568578.
Eagly, A. H. and Chaiken, S. (1993). The Psychology of Attitudes. Fort Worth, TX: Harcourt Brace Jovanovich.
Fox, C., Buchanan-barrow, E. and Barrett, M. (2008). Children's understanding of mental illness: an exploratory study. Child: Care, Health and Development, 34, 1018.
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, 2935.
Guba, E. G. (1981). Criteria for assessing the trustworthiness of naturalistic inquiries. Educational Communication & Technology, 29, 7591.
Howard, K. and Singleton, J. F. (2001). The forgotten generation. Activities, Adaptation & Aging, 25, 4557.
Howard251a (2010, April 13). Alzheimer's Sundown Syndrome – Awake All Night. Available at: https://www.youtube.com/watch?v=9Ak1tgzv_0Q.
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, 657668.
Marepuwaterloo, (2014, June 6). Cursing. https://www.youtube.com/watch?v=oYsACPYV5lw.
Morse, J. M. (1995a). The significance of saturation. Qualitative Health Research, 5, 147149.
Morse, J. M. and Field, P. A (1995b). Qualitative Research Methods for Health Professionals Thousand Oaks, CA: Sage.
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.
NHSlocal (2012, July 20). Dementia in Schools Teaching Aid – Part 2. Available at: https://www.youtube.com/watch?feature=player_embedded&v=AHuK34VzSbg.
Patton, M. Q. (2002). Qualitative Evaluation and Research Methods. CA: Sage.
Purves, B. A. (2011). Exploring positioning in Alzheimer disease through analyses of family talk. Dementia, 10, 3558.
QSR International Pty Ltd (2012). NVivo qualitative data analysis software. Version 10.
Rollnick, S. and Miller, W. R. (1995). What is motivational interviewing?. Behavioural and Cognitive Psychotherapy, 23, 325334.
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, 584591.
Sambi1968 (2010, Sept 22). My Mum Alzheimer's (2 years on) Available at: https://www.youtube.com/watch?v=1LKannoS6OI.
Svanberg, E., Stott, J. and Spector, A. (2010). Just helping: children living with a parent with young onset dementia. Aging and Mental Health, 14, 740751.
Williams, A., O'Driscoll, K. and Moore, C. (2014). The influence of empathic concern on prosocial behavior in children. Frontiers in Psychology, 5, 18.
Wolf, M. S. et al. (2009). Literacy and learning in healthcare. Pediatrics, 124, S275S281.
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International Psychogeriatrics
  • ISSN: 1041-6102
  • EISSN: 1741-203X
  • URL: /core/journals/international-psychogeriatrics
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