Harris, Phyllis Braudy

Keady, John

English

John Carroll University

John Carroll UniversityCarroll CollectedSociology2011The Journal's 10 year anniversary - looking back andmoving forwardPhyllis Braudy HarrisJohn Carroll University, pharris@jcu.eduJohn KeadyFollow this and additional works at: http://collected.jcu.edu/soc-facpubPart of the Family, Life Course, and Society Commons, and the Medicine and Health CommonsThis Editorial is brought to you for free and open access by Carroll Collected. It has been accepted for inclusion in Sociology by an authorizedadministrator of Carroll Collected. For more information, please contact connell@jcu.edu.Recommended CitationHarris, Phyllis Braudy and Keady, John, "The Journal's 10 year anniversary - looking back and moving forward" (2011). Sociology. 7.http://collected.jcu.edu/soc-facpub/7EditorialThe Journal’s 10 yearAnniversary – Looking backand moving forwardPhyllis ‘‘Penny’’ Braudy Harris and John KeadyThis issue marks the 10th year of the Journal, whose guiding mission has been, ‘‘To providea major international forum for social-behavioral research and practice that has directrelevance on improving the quality of life (QOL) and quality of care for people withdementia and their families’’ (Keady & Harris, 2002). For where the main focus ofbiomedical research has been on the cause of dementia, the focus of social–behavioralresearch is on the consequences of living with dementia. On a daily basis, persons withdementia and their family members must face alone and together this ‘‘lived experience,’’with its ever constant changes, surprises, challenges, disappointments, and sometimesrewards; and most of all they must learn to cope. Social–behavioral research can help.Pearlin et al. (2001) identified five research domains essential for future social research onthe consequences of dementia: 1) the person with dementia, 2) the family and household, 3)the physical and social environment, 4) effective services and interventions, and 5) directionsfor health policy. This schematic was presented as a heuristic device to stimulate thinkingabout future research. Over the years, this Journal has played an important role inpublishing articles that further deepened our understanding in all five recommendedresearch areas. Reviewing the Journal’s last 10 years of publications, below are just a fewexamples of articles that reflect research in each of the domains.Articles in the Journal have increased our understanding of the ‘‘inner worlds’’ of both theperson with dementia and their care partner. Articles that explored ‘‘the inner world’’ ofpeople with dementia were ones such as: 1) the very first paper published by the Journal,Sterin’s (2002) eloquent personal essay on how being diagnosed with dementia and thestigma that entailed, forever changed one’s social interactions and self-concept; Krause’sand Moyer’s (2006) discussion on how her diagnosis spurred them into becoming advocatesfor people with AD, and the meaning such work has brought to their lives; and Fazio’s andMitchell’s study (2009), which demonstrated through evidence from remaining language andvisual recognition that the self of the person with Alzheimer’s disease persists along thejourney, expanding the work of Steven Sabat (2001). Each article and many othersdeepened our understanding of the lived experience.A few notable articles about the ‘‘inner world’’ of carer experience were: 1) Weyl’s (2009)description of her journey with her husband Peter diagnosed with AD, as she loves and caresfor him, and copes, recorded in a memoir, entitled, ‘‘Love song at the end of the day’’; 2)Aubeeluck’s and Buchanan’s (2006) article that captured the Huntington’s disease spousalcarer experience, a group that is often forgotten, using the methodology of photovoice. Thisstudy visually presented the carers’ quality of life, encompassing loss, loneliness, neglectedneeds and desire for escape; and 3) one of the most unique articles published over the years,Dementia10(1) 3–6! The Author(s) 2011Reprints and permissions:sagepub.co.uk/journalsPermissions.navDOI: 10.1177/1471301211401685dem.sagepub.coman article (and accompanying Editorial) by Parker, Young and Rogers (2010) in which aDeaf daughter described her Deaf mother’s experiences with dementia, focusing on theproblematic nature of recognizing dementia amongst Deaf people and the lack ofappropriate diagnostic, care and support services. For Jacqueline Parker’s mother to diein an environment where she was not understood and where no specialist services existed tointerpret her communication and language is a reality which should stop us all in our tracksand ask the most searching of questions. These articles plus so many of other published inthe Journal expanded our understanding of the care partner’s perspective and their variedservice needs.In the realm of physical and social environmental effects on people with dementia, therewere published studies such as: 1) the research by Cloffi, Fleming, Wilkes, Sinfield, and LeMlere (2007) where through conducting focus groups with families and staff, researcherswere able to document positive changes in behavior and functioning of residents in a specialcare unit when smaller more home-like units were initiated; 2) Van Hoof’s and Kort’s (2009)concept paper on designing a dementia friendly home in terms of architectural features,interior design, the indoor environment, and technological assistive devices all to facilitatepeople with dementia to remain independent and in their own homes as long as possible; and3) Davis, Byers, Nay, and Koch (2009), who in their article argued that it is the livedexperience of people with dementia that should guide the building of residential facilitiessuggesting seven living experiences to be considered in architectural design: eating, bedroom,family and community connections, personal enjoyment, staff, and end-of –life experiences.As relates to service and intervention studies to improve quality of life and quality of care,the Journal published research such as:1) Tremont’s, Davis’, Bishop’s, and Fortinsky’s(2008) randomized control pilot study on a new accessible and low cost telephonepsychosocial intervention to reduce caregiver burden, which showed much promise; 2)Hicks-Moore’s and Robinson’s (2008) randomized control study on the use of handmessage and music to lessen agitation in nursing home residents, where the datademonstrated some significant results; and 3) Malone’s and Camp’s (2007) work onMontessori-based dementia programming with residents in various institutional settingsthat used individually designed every day type activities, based on a person’s pastinterests, which positively reinforced remaining skills.In the domain of health policy, articles such as: 1) Wilkinson’s and Weaks’ (2008)editorial on the collaboration between Scottish policy makers, researchers, practitioners,people with dementia, and their families demonstrated how meaningful policy thatimpacts quality of life can be co-created; 2) Iliffe’s and Manthorpe’s (2007) discussion ofEngland’s National Institute of Health and Clinical Excellence and the Social Care Institutefor Excellence guidelines on providing quality dementia care provided a insightful reviewand critique of a national policy, one of the few national policies on dementia care; and 3)Cayton’s (2004) use of narratives as a way to inform and question the choices and challengessocieties must make as they struggle to care for and develop policy to protect the rights anddignity of people with dementia.So, yes, over the last 10 years the Journal has published articles in the five major domainsof social-behavioral research and pushed the knowledge base further, and yet the Journal hasdone more than that. The Journal has also focused on the needs of special groups within thedementia population, who get little attention. The Journal published special issues devotedto people with intellectual difficulties affected by dementia, issue 4(4), and people withdementia at the end-of–life, issue 8(3). In addition, the Journal has advocated for moving4 Dementia 10(1)beyond the person-centered paradigm of care to a relationship-based center of care (Adams& Gardiner, 2005; Harris & Keady, 2006; Nolan and Keady, 2007) and recognizedthe importance of having people with dementia and their families more involved in theco- construction of research (Keady, Williams, & Hughes-Roberts, 2007; Mckillop &Wilkinson, 2004), and programs and product development (Orpwood, Bjorneby, Hagen,Maki, Faulkner, & Topo, 2004). And the Journal gave a forum to researchers and healthcare practitioners who questioned from epistemological, ethical and semantic perspectivesthe wisdom of clinically using the widely accepted term, mild cognitive impairment(Whitehouse & Moody, 2006). Work undertaken by Jo Moriarty on the InnovativePractice section and Heather Wilkinson on the Book Reviews section (and prior to thisSue Hahn) have made significant contributions to the field and our thanks to them andall contributors over the years.But where does the Journal go from here? Our role as social behavioral scientists is tocontinue asking critical questions that challenge strongly held assumptions and develop newconceptual models about how best to measure, treat, deliver service, and care for people withdementia and their families. The Journal needs to continue its role as being an open forum todiscuss cutting edge ideas and an arena to present data that test and re-test accepted andproposed interventions that have the potential to improve the quality of life and quality ofcare for people with dementia and their families. For as one man with dementia oncetold one of the editors, ‘‘I’m dying with Alzheimer’s disease. I know that. . .What youneed to do –what they [researchers] need to do – is help me figure out how to live with it’’(Harris, 2002, xiii).ReferencesAdams, T., & Gardiner, P. (2005). Communications and interactions with dementia care triads.Dementia: The International Journal of Social Research and Practice, 4(2), 185–205.Aubeeluck, A., & Buchanan, H. (2006). Capturing the Huntington’s disease spousal carer experience.Dementia: The International Journal of Social Research and Practice, 5(1), 95–116.Cayton, H. (2004). Telling stories: choices and challenges on the journey of dementia. Dementia: TheInternational Journal of Social Research and Practice, 3(1), 9–17.Cloffi, J. M., Fleming, A., Wilkes, L., Sinfield, M., & Le Mlere, J. (2007). The effects of environmentalchange on residents with dementia. Dementia: The International Journal of Social Research andPractice, 6(2), 215–231.Davis, S., Byers, S., Nay, R., & Koch, S. (2009). Guiding design of dementia friendly environments inresidential care settings: Considering the living experience. Dementia: The International Journal ofSocial Research and Practice, 8(2), 185–203.Fazio, S., & Mitchell, D. (2009). Persistence of self in individuals with Alzheimer’s disease: Evidencefrom language and visual recognition. Dementia: The International Journal of Social Research andPractice, 8(1), 39–39.Harris, P. B. (2002). The Person with Alzheimer’s disease: Pathways to Understanding the Experience.Baltimore, MD: The Johns Hopkins University Press.Harris, P. B., & Keady, J. (2006). Editorial. Dementia: The International Journal of Social Research andPractice, 5(1), 5–9.Hicks-Moore, S. L., & Robinson, B. A. (2008). Favorite music and hand message. Dementia: TheInternational Journal of Social Research and Practice, 7(1), 95–108.Iliffe, S., & Manthorpe, J. (2007). Editorial: Following the trajectory of dementia: The NICE/SCIEguidelines. Dementia: The International Journal of Social Research and Practice, 6(1), 7–9.Editorial 5Keady, J., & Harris, P. B. (2002). Editorial. Dementia: The International Journal of Social Research andPractice, 1(1), 5–6.Keady, J., Williams, S., & Hughes-Roberts, J. (2007). ‘Making Mistakes’: using Co-ConstructedInquiry to illuminate meaning and relationships in the early adjustment to Alzheimer’s disease –a single case study approach. Dementia: The International Journal of Social Research and Practice,6(3), 343–364.Knauss, J., & Moyer, D. (2006). The role of advocacy in our adventure with Alzheimer’s disease.Dementia: The International Journal of Social Research and Practice, 5(1), 67–72.Malone, M. L., & Camp, C. L. (2007). Montessori-based dementia programming: Providing tools forengagement. Dementia: The International Journal of Social Research and Practice, 6(1), 150–156.McKillop, J., & Wilkinson, H. (2004). Make it easy on yourself! Advice to researchers from someonewith dementia on being interviewed. Dementia: The International Journal of Social Research andPractice, 3(2), 117–126.Nolan, M., & Keady, J. (2007). Editorial. Dementia: The International Journal of Social Research andPractice, 6(3), 323–326.Orpwood, R., Bjorneby, S., Hagen, I., Maki, O., Faulkner, R., & Topo, P. (2004). User involvement indementia product development. Dementia: The International Journal of Social Research andPractice, 3(3), 263–279.Parker, J., Young, A., & Rogers, K. (2010). ‘My Mum’s Story’: A Deaf daughter discusses her Deafmother’s experience of dementia. Dementia: The International Journal of Social Research andPractice, 9(1), 5–20.Pearlin, L. I., Harrington, C., Lawton, M. P., Montgomery, R. J. V., & Zarit, S. H. (2001). Anoverview of the social and behavioral consequences of Alzheimer’s disease’’. Aging & MentalHealth, 5(Supplement 1), S3–6.Sabat, S. (2001). The Experience of Alzheimer’s disease: Life through a Tangled Veil. Oxford, UK:Blackwell.Sterin, G. (2002). Essay on a word: A lived experience of Alzheimer’s disease. Dementia: TheInternational Journal of Social Research and Practice, 1(1), 7–10.Tremont, G., Davis, J. D., Bishop, D. S., & Fortinsky, R. H. (2008). Telephone-delivered psychosocialintervention reduces burden in dementia caregivers. Dementia: The International Journal of SocialResearch and Practice, 7(4), 503–520.Van Hoof, J., & Kort, H. S. M. (2009). Supportive living environments: A first concept of a dwellingdesigned for older adults with dementia. Dementia: The International Journal of Social Research andPractice, 8(2), 293–316.Weyl, M. (2009). Love song at the end of the day: A wife’s journey. Dementia: The InternationalJournal of Social Research and Practice, 8(1), 9–15.Wilkinson, H., & Weaks, D. (2008). Editorial: Hearing the voices in the policy-practice-research nexus:the importance of the knowledge exchange process for people with dementia. Dementia: TheInternational Journal of Social Research and Practice, 7(4), 427–233.Whitehouse, P. J., & Moody, H. R. (2006). Mild Cognitive Impairment: The hardening of thecategories. Dementia: The International Journal of Social Research and Practice, 5(1), 11–25.6 Dementia 10(1)

The Journal\u27s 10 year anniversary - looking back and moving forward

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The Journal\u27s 10 year anniversary - looking back and moving forward

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