Embodiment and dementia: Exploring critical narratives of selfhood, surveillance, and dementia care

In the last decade there has been a notable increase in efforts to expand understandings of dementia by incorporating the body and theorizing its interrelationship with the larger social order. This emerging subfield of dementia studies puts the body and embodied practices at the center of explorations of how dementia is represented and/or experienced. This shift towards a greater recognition of the way that humans are embodied has expanded the horizon of dementia studies, providing the intellectual and narrative resources to examine experiences of dementia, and their interconnections with history, culture, power, and discourse. Our aim in this paper is to critically explore and review dimensions of this expanding research and literature, specifically in relation to three key narratives: (1) rethinking selfhood: exploring embodied dimensions; (2) surveillance, discipline, and the body in dementia and dementia care; and (3) embodied innovations in dementia care practice. We argue that this literature collectively destabilizes dementia as a taken-for-granted category and has generated critical texts on the interrelationship between the body and social and political processes in the production and expression of dementia.

[1]  L. Flicker Dementia Reconsidered: the Person Comes First , 1999, BMJ.

[2]  G. Andrews Managing challenging behaviour in dementia , 2006, BMJ : British Medical Journal.

[3]  Murna Downs,et al.  The Emergence of the Person in Dementia Research , 1997, Ageing and Society.

[4]  Jacalyn Duffin,et al.  Music, memory, and Alzheimer's disease: is music recognition spared in dementia, and how can it be assessed? , 2005, Medical hypotheses.

[5]  P. Kontos Musical Embodiment, Selfhood, and Dementia , 2014 .

[6]  Paul Higgs,et al.  Ageing, Corporeality and Embodiment , 2013 .

[7]  H. Chaudhury,et al.  Exploring personhood in dining experiences of residents with dementia in long-term care facilities , 2011 .

[8]  N. Darko Book Reviews: The Body in Society , 2005 .

[9]  Wasting Away: The Undermining of Canadian Health Care , 1998 .

[10]  Gary Naglie,et al.  Expressions of Personhood in Alzheimer's Disease: An Evaluation of Research-Based Theatre as a Pedagogical Tool , 2007, Qualitative health research.

[11]  K Diaz Moore,et al.  Dissonance in the dining room: a study of social interaction in a special care unit. , 1999, Qualitative health research.

[12]  P. Kontos,et al.  Bridging theory and practice , 2007 .

[13]  Alison Kenner,et al.  Securing the Elderly Body: Dementia, Surveillance, and the Politics of "Aging in Place" , 2002 .

[14]  K. Lyman Living with Alzheimer's disease: the creation of meaning among persons with dementia. , 1998, The Journal of clinical ethics.

[15]  S. Allen Broadening the dementia debate: Towards social citizenship , 2010 .

[16]  C. Ballard,et al.  Quality of care in private sector and NHS facilities for people with dementia: cross sectional survey , 2001, BMJ : British Medical Journal.

[17]  Deborah O'Connor,et al.  From personhood to citizenship: Broadening the lens for dementia practice and research , 2007 .

[18]  L. McGillis Hall,et al.  A narrative approach to understanding the nursing work environment in Canada. , 2005, Social science & medicine.

[19]  R. Beard,et al.  In their voices: Identity preservation and experiences of Alzheimer's disease , 2004 .

[20]  G. Galster,et al.  What is neighbourhood , 1986 .

[21]  Rom Harré,et al.  The Construction and Deconstruction of Self in Alzheimer's Disease , 1992, Ageing and Society.

[22]  Bernie Warren Using the creative arts in therapy and healthcare : a practical introduction , 1993 .

[23]  P. van Schaik,et al.  The impact of early dementia on outdoor life , 2008 .

[24]  R. Cohen Time, space and touch at work: body work and labour process (re)organisation. , 2011, Sociology of health & illness.

[25]  P. Kontos,et al.  Embodied selfhood in Alzheimer's disease , 2005 .

[26]  K. Day,et al.  The therapeutic design of environments for people with dementia: a review of the empirical research. , 2000, The Gerontologist.

[27]  Terence Turner,et al.  The Body and Society: Explorations in Social Theory.Bryan S. Turner , 1986 .

[28]  Pierre Bourdieu,et al.  Outline of a Theory of Practice , 2020, On Violence.

[29]  Pia Kontos,et al.  Rethinking sociability in long-term care: An embodied dimension of selfhood , 2012 .

[30]  Julia Twigg,et al.  Bathing - The Body and Community Care , 2000 .

[31]  Pia Kontos,et al.  Ethnographic reflections on selfhood, embodiment and Alzheimer's disease , 2004, Ageing and Society.

[32]  L. Birke,et al.  Debating biology: sociological reflections on health, medicine and society , 2003 .

[33]  E. Wiersma,et al.  Pathologizing behavior: Meanings of behaviors in dementia care , 2012 .

[34]  James L. McClelland,et al.  Phenomenology of perception. , 1978, Science.

[35]  P. Kontos,et al.  Using drama to improve person-centred dementia care. , 2010, International journal of older people nursing.

[36]  A. Leibing,et al.  Thinking About Dementia , 2006 .

[37]  Lyman Ka,et al.  Living with Alzheimer's disease: the creation of meaning among persons with dementia. , 1998, The Journal of clinical ethics.

[38]  P. Landreville,et al.  Disruptive vocalizations: A means to communicate in dementia? , 2003, American journal of Alzheimer's disease and other dementias.

[39]  S. Rodiek,et al.  Outdoor Environments for People with Dementia , 2013 .

[40]  B. Callaghan A kiss is still a kiss , 1994 .

[41]  Roma Chatterji An Ethnography of Dementia , 1998, Culture, medicine and psychiatry.

[42]  P. Kontos,et al.  Neglecting the Importance of the Decision Making and Care Regimes of Personal Support Workers: A Critique of Standardization of Care Planning Through the RAI/MDS , 2009, The Gerontologist.

[43]  J. Mintzer,et al.  Time for Change: The Role of Nonpharmacological Interventions in Treating Behavior Problems in Nursing Home Residents With Dementia , 2005, Alzheimer disease and associated disorders.

[44]  S. Sabat,et al.  Surviving Manifestationsof Selfhood in Alzheimer’s Disease , 2002 .

[45]  H. Keller,et al.  Honouring identity through mealtimes in families living with dementia , 2010 .

[46]  P. Harris,et al.  The person with Alzheimer's disease : pathways to understanding the experience , 2002 .

[47]  D. Aarsland,et al.  The effect of staff training on the use of restraint in dementia: a single‐blind randomised controlled trial , 2005, International journal of geriatric psychiatry.

[48]  J. Twigg The body in health and social care , 2006 .

[49]  Jill Manthorpe Dementia, mind, meaning and the person , 2007 .

[50]  C. Chesla,et al.  The lived body in dementia , 2003 .

[51]  A. Martyr,et al.  Outdoor environments for people with dementia: an exploratory study using virtual reality , 2007, Ageing and Society.

[52]  W. Martin Embodying 'active' ageing : bodies, emotions and risk in later life , 2007 .

[53]  Claudine McCreadie The perspectives of people with dementia: Research methods and motivations , 2004 .

[54]  S. Katz,et al.  Neuroculture, active ageing and the 'older brain': problems, promises and prospects. , 2012, Sociology of health & illness.

[55]  N. Spiro Music and dementia: Observing effects and searching for underlying theories , 2010, Aging & mental health.

[56]  W. Martin Visualizing risk: Health, gender and the ageing body , 2012 .

[57]  J. Teresi,et al.  The therapeutic design of environments for people with dementia: further reflections and recent findings from the National Institute on Aging Collaborative studies of Dementia special care units. , 2000, The Gerontologist.

[58]  J. Twigg Deconstructing the ‘Social Bath’: Help with Bathing at Home for Older and Disabled People , 1997, Journal of Social Policy.

[59]  C. Victor,et al.  Embodying Gender, Age, Ethnicity and Power in ‘the Field’: Reflections on Dress and the Presentation of the Self in Research with Older Pakistani Muslims , 2012 .

[60]  Deborah Reed‐Danahay,et al.  ‘This is your home now!’: conceptualizing location and dislocation in a dementia unit , 2001 .

[61]  James A. Holstein,et al.  The nursing home as a discursive anchor for the ageing body , 1999, Ageing and Society.

[62]  J. Hughes,et al.  Dancing as a psychosocial intervention in care homes: a systematic review of the literature , 2013, International journal of geriatric psychiatry.

[63]  E. Burton,et al.  Designing Dementia‐Friendly Neighbourhoods: Helping People with Dementia to Get Out and About , 2010 .

[64]  Murna Downs,et al.  Meaningful social interactions between older people in institutional care settings , 2003, Ageing and Society.

[65]  J. Hughes Views of the person with dementia , 2001, Journal of medical ethics.

[66]  Marco Trabucchi,et al.  Efficacy of Music Therapy in the Treatment of Behavioral and Psychiatric Symptoms of Dementia , 2008, Alzheimer disease and associated disorders.

[67]  C. Archibald,et al.  Sexuality, dementia and residential care: managers report and response. , 1998, Health & social care in the community.

[68]  S. Arber,et al.  Time spent in bed at night by care-home residents: choice or compromise? , 2011, Ageing and Society.

[69]  P. De Graaf Placing health: neighbourhood renewal, health improvement and complexity , 2007, International Journal of Integrated Care.

[70]  R. Hendriks Tackling Indifference—Clowning, Dementia, and the Articulation of a Sensitive Body , 2012, Medical anthropology.

[71]  J. Snaedal,et al.  Music therapy in moderate and severe dementia of Alzheimer's type: a case–control study , 2006, International Psychogeriatrics.

[72]  Brendan McCormack,et al.  Person-centredness in gerontological nursing: an overview of the literature. , 2004, Journal of clinical nursing.

[73]  Julia Twigg,et al.  Clothing and dementia: A neglected dimension? , 2010 .

[74]  H. Sung,et al.  Working in long-term care settings for older people with dementia: nurses' aides. , 2005, Journal of clinical nursing.

[75]  The New Medical Sociology: Social Forms of Health and Illness , 2004 .

[76]  Lawrence Cohen,et al.  Thinking About Dementia: Culture, Loss, and the Anthropology of Senility , 2006 .

[77]  L. Hydén,et al.  Narrative and identity in Alzheimer's disease: A case study , 2009 .

[78]  P. Spitzer,et al.  Laughing to longevity—the work of elder clowns , 2011, The Lancet.

[79]  L. Palo-Bengtsson,et al.  Emotional response to social dencing and walks in persons with dementia , 2002, American journal of Alzheimer's disease and other dementias.

[80]  D. Leder The Absent Body , 1990 .

[81]  R. Ward,et al.  ‘If I look old, I will be treated old’: hair and later-life image dilemmas , 2010, Ageing and Society.

[82]  Daniel H. Davis Dementia: sociological and philosophical constructions. , 2004, Social science & medicine.

[83]  P. Kontos,et al.  Implementation Science BioMed Central Debate , 2009 .

[84]  Steven R. Sabat Mind, meaning, and personhood in dementia: the effects of positioning , 2005 .

[85]  P. Topo,et al.  Design and dementia: A case of garments designed to prevent undressing , 2012 .

[86]  Aviad E. Raz,et al.  The Mask of Dementia: Images of ‘Demented Residents’ in a Nursing Ward , 1996, Ageing and Society.

[87]  L. Richardson Age Matters: Realigning Feminist Thinking , 2007 .

[88]  B. Turner Biology, vulnerability and politics , 2005 .

[89]  Colm Cunningham,et al.  Supporting Older People in Care Homes at Night , 2008 .

[90]  B. Mark What Explains Nurses’ Perceptions of Staffing Adequacy? , 2002, The Journal of nursing administration.

[91]  H. Bartlett,et al.  The Social Significance of Sleep for Older People with Dementia in the Context of Care , 2007 .

[92]  H. Chaudhury,et al.  Personhood in dementia care , 2007 .

[93]  S. O. Lauritzen,et al.  Expressive bodies: demented persons’ communication in a dance therapy context , 2005, Health.

[94]  J. Stirling Dementia, discourse, difference and denial : "who did I become?" , 1995 .

[95]  P. Kontos,et al.  Tacit knowledge of caring and embodied selfhood. , 2009, Sociology of health & illness.

[96]  Gemma M. M. Jones,et al.  Designing care environments for persons with Alzheimer's disease: visuoperceptual considerations , 2008 .

[97]  S. Millett Self and embodiment: A bio-phenomenological approach to dementia , 2011 .