Understanding dementia and the person behind the diagnostic label

Main Article Content

Dawn Brooker


The growing number of people living with dementia presents a worldwide challenge for society and for healthcare generally. The progressive cognitive impairments that are the hallmark of dementia can make it appear the person is disappearing as the disease progresses. Since the seminal theoretical work of Kitwood in the 1990’s, a person-centered model for understanding the experience of dementia and the way in which treatment is delivered has developed. This challenged the assumption that dementia is the death that leaves the body behind. Indeed, Kitwood asserted that the maintenance of personhood was what we should be aiming for in our care and support. He charged us with honouring the person struggling to be heard behind the diagnostic label that threatens to take personhood away. Kitwood’s theories have been developed into a practical framework for person-centered care delivery – the VIPS framework that asserts valuing all people regardless of their cognitive ability or age; recognising people as unique individuals; respecting the perspective of the person with dementia and uses that as a starting point for care provision and providing a supportive psycho-social milieu which enables people with dementia to feel socially confident and that they are not alone. Whilst there have been many developments within person-centered care practice, the research evidence is only just beginning to emerge. How these ideas and practices become part of regular care remains a challenge.

Article Details

Person-centered care and chronic disease


Wimo, A. & Prince, M. (2010). World Alzheimer Report 2010: The Global Economic Impact of Dementia, Alzheimer’s Disease International.

Alzheimer’s Research Trust (2010). Dementia 2010: The economic burden of dementia and associated research funding in the United Kingdom. Health Economics Research Centre, University of Oxford for the Alzheimer’s Research Trust.

Robert, P.H., Verhey, F.R., Byrne, E.J., Hurt, C., De Deyn, P.P., Nobili, F., Riello, R., Rodriguez, G., Frisoni, G.B., Tsolaki, M., Kyriazopoulou, N., Bullock, R.A., Burns, A. & Vellas, B. (2005). Grouping for behavioral and psychological symptoms in dementia: clinical and biological aspects. Consensus paper of the European Alzheimer disease consortium, European Psychiatry, 20 (7) 490-496.

Lawlor, B. (2002). Managing behavioural and psychological symptoms in dementia. British Journal of Psychiatry 181, 463-465.

Alzheimer’s Society (2011). Optimising treatment and care for people with behavioural and psychological symptoms of dementia, London: Alzheimer’s Society.

Banerjee, S. (2009). The use of anti-psychotic medication for people with dementia: A time for action, London: DoH.

Fujii, M., Ishizuka, S., Azumi, M. & Sasaki, H. (2010). Hypothesis of behavioral and psychological symptoms of dementia. Psychogeriatrics 10 (3) 113-116.

Kitwood, T. (1987). Dementia and its pathology: in brain, mind or society? Free Association, 8, 81-93.

Kitwood, T. (1987). Explaining senile dementia: The limits of neuropathological research. Free Associations Press 10, 117-138.

Kitwood, T. (1988). The technical, the personal, and the framing of dementia. Social Behaviour 3, 161-179.

Kitwood, T. (1989). Brain, mind and dementia: With particular reference to Alzheimer’s disease. Ageing and Society 9 (1) 1-15.

Kitwood, T. (1990). The dialects of dementia: With particular reference to Alzheimers’s disease. Ageing and Society 10 (2) 177-196.

Kitwood, T. (1990). Understanding senile dementia: A psychobiographical approach. Free Associations 19, 60-76.

Kitwood, T. (1992). Quality assurance in dementia care. Geriatric Medicine 22, 34-38.

Kitwood, T. (1993). Person and Process in Dementia. International Journal of Geriatric Psychiatry 8, 541-545.

Kitwood, T. (1993). Towards a Theory of Dementia Care: The Interpersonal Process. Ageing and Society 13, 51-67.

Kitwood, T. (1993). Towards the reconstruction of an organic mental disorder. In: Worlds of illness: Biographical and cultural perspectives on health and disease. (Radley, A. ed.) pp. 143-160. Routledge: London.

Kitwood, T. (1995). Building up the mosaic of good practice. Journal of Dementia Care 3 (5) 12-13.

Kitwood, T. (1995). A dialectical framework for dementia. In: Handbook of Clinical Psychology of Ageing, pp. 267-282. (Woods, R.T. et al eds.) Wiley:England.

Kitwood, T. (1997). Dementia Reconsidered: the person comes first. Buckingham: Open University Press.

Nolan, M., Ryan, T., Enderby, P. & Reid, D. (2002). Towards a More Inclusive Vision of Dementia Care Practice and Research. Dementia 1 (2) 193-211.

Brooker, D. (2004). What is person-centred care for people with dementia? Reviews in Clinical Gerontology, 13, 212-222.

NICE-SCIE (National Institute for Health and Clinical Excellence- Social Care Institute for Excellence) (2007). Dementia: A NICE–SCIE Guideline on supporting people with dementia and their carers in health and social care. National Clinical Practice Guideline Number 42.

Brooker, D. (2007). Person-centred dementia care: making services better. Jessica Kingsley: London.

Brooker, D. (2008). Person Centred Care; In: Psychiatry in the Elderly 4th Edition. (Jacoby, R., Dening, T. & Thomas, A. eds.). Oxford: Oxford University Press.

Brooker, D. (2009). What is person centred care in dementia? In: Mental Health Still Matters. (Reynolds, J., Muston, R., Heller, T., Leach, J., McCormick, M., Wallcraft, J. & Walsh, M. eds.) Basingstoke: Palgrave MacMillan.

Brooker, D. (2011). Good Practice Inside. In: Mental health and Care Homes. (Dening, T. & Milne, A. eds). Oxford: Oxford University Press.

Brooker, D. (2008). Person-zentriert pflegen: Das VIPS-Modell zur Plfege und Betreuung von Menschen mit einer Demenz (Deutschsprachige Ausgabe herausgegeben von Christian Muller-Hergl und Detlef Rusing). Bern: Verlag Hans Huber.

Worcestershire Health and Care NHS Trust (2011). Stand by Me: DVD assisted education resource for promoting good communication with people living with dementia and their families. Worcester: Association for Dementia Studies, University of Worcester.

Prince, M., Bryce, R. & Ferri, C. (2011). World Alzheimer Report 2011: The Benefits of Early Intervention and Diagnosis, Alzheimer’s Disease International.

Brodaty, H., Green, A. & Koschera, A. (2003). Meta-analysis of psychosocial interventions for caregivers of people with dementia. Journal of the American Geriatrics Society 51 (5) 657-664.

Mittleman, M., Brodaty, H., Wallen, A. & Burns, A. (2008). A three-country randomized controlled trial of a psychosocial intervention for caregivers combined with pharmacological treatment for patients with Alzheimer disease: effects on caregiver depression. American Journal of Geriatric Psychiatry 16 (11) 893-904.

Ulstein, I., Sandvik, L., Wyller, T. & Engedal, K. (2007). A One-Year Randomized Controlled Psychosocial Intervention Study among Family Carers of Dementia Patients – Effects on Patients and Carers. Dementia and Geriatric Cognitive Disorders 24 (6) 469-475.

Moniz-Cook, E.D., De Vugt, M., Verhey, F. & James, I. (2008). Functional analysis-based interventions for challenging behaviour in dementia. Cochrane Database of Systematic Reviews, Issue 1. Art. No.: CD006929.

Cohen-Mansfield, J., Libin, A. & Marx, M.S. (2007). Nonpharmacological treatment of agitation: a controlled trial of systematic individualized intervention. Journal of Gerontology Series A: Biological Sciences Medical Sciences 62 (8) 908-916.

Ballard, C.G., O'Brien, J.T., Reichelt, K. & Perry, E.K. (2002). Aromatherapy as a safe and effective treatment for the management of agitation in severe dementia: the results of a double-blind, placebo-controlled trial with Melissa. Journal of Clinical Psychiatry 63 (7) 553-558.

Brooker, D., Snape, M., Johnson, E., Ward, D. & Payne, M. (1997). Single case evaluation of aromatherapy and massage on disturbed behaviour in severe dementia. British Journal of Clinical Psychology 36, 287-296.

Cohen-Mansfield, J., Dakheel-Ali, M., & Marx, M.S. (2009). Engagement in persons with dementia: the concept and its measurement. American Journal of Geriatric Psychiatry 17 (4) 299–307.

Ballard, C., Brown, R., Fossey, J., Douglas, S., Bradley, P., Hancock, J., James, I.A., Juszczak, E., Bentham, P., Burns, A., Lindesay, J., Jacoby, R., O'Brien, J., Bullock, R., Johnson, T., Holmes, C. & Howard, R. (2009). Brief psychosocial therapy for the treatment of agitation in Alzheimer disease (the CALM-AD trial). American Journal of Geriatric Psychiatry 17 (9) 726-733.

Brooker, D. & Woolley, R. (2007). Enriching Opportunities for People living with Dementia: The Development of a Blueprint for a Sustainable Activity-Based Model of Care. Aging and Mental Health 11 (4) 371-383.

Brooker, D., Woolley, R. & Lee, D. (2007). Enriching Opportunities for People living with Dementia in Nursing Homes: An evaluation of a multi-level activity-based model of care. Aging and Mental Health 11 (4) 361-370.

Brooker D., Argyle, E., Clancy, D. & Scally, A. (2012). Enriched Opportunities Programme: A cluster randomised controlled trial of a new approach to living with dementia and other mental health issues in ExtraCare housing schemes and villages. Aging and Mental Health. In press.

May, H., Edwards, P. & Brooker, D. (2009). Enriched Care Planning for People with Dementia: A Good Practice Guide to Delivering Person-Centred Care. London: Jessica Kingsley Publications.

Skills for Care (2007). National Survey of Care Workers. Final Report. London: Skills for Care.

Moniz-Cook, E., Millington, D. & Silver, M. (1997). Residential care for older people: job satisfaction and psychological health in care staff. Health and Social Care in the Community 5 (2) 124-133.

Cole, R.P., Scott, S. & Skelton-Robinson, M. (2000). The effect of challenging behaviour, and staff support, on the psychological wellbeing of staff working with older adults. Aging and Mental Health 4 (4) 359-365.

Todd, S.J. & Watts, S.C. (2005). Staff responses to challenging behaviour shown by people with dementia: An application of an attributional-emotional model of helping behaviour. Aging and Mental Health 9 (1) 71-81.

Choi, N.G., Ransom, S. & Wyllie, R. (2008). Depression in Older Nursing Home Residents: The Influence of Nursing Home Environmental Stressors, Coping, and Acceptance of Group and Individual Therapy. Aging and Mental Health 12 (5) 536-547.

Fossey, J., Ballard, C., Juszczak, E., James, I., Alder, N., Jacoby, R. & Howard, R. (2006). Effect of enhanced psychosocial care on antipsychotic use in nursing home residents with severe dementia: cluster randomised trial. British Medical Journal 332, 756-761.

Commission for Social Care Inspection – CSCI (2008). See me, not just the dementia: Understanding peoples’ experiences of living in a care home. London: CSCI.

Chenoweth, L., King, M.T., Jeon, Y-H., Brodaty, H., Stein-Parbury, J., Norman, R., Haas, M. & Luscombe, G. (2009). Caring for Aged Dementia Care Resident Study (CADRES) of person-centred care, dementia-care mapping, and usual care in dementia: a cluster-randomised trial. The Lancet Neurology 8, 317-325.

Deudon, A., Maubourguet, N., Gervais, X., Leone, E., Brocker, P., Carcaillon, L., Riff, S., Lavallart, B. & Robert, P.H. (2009). Non-pharmacological management of behavioural symptoms in nursing homes. International Journal of Geriatric Psychiatry 24 (12) 1386-1395.

Rosvik, J., Engedhal, K., Brooker, D. et al (2012). VIPS person centred operational framework in Norwegian Nursing homes A model for using the VIPS framework for person-centred care for persons with dementia in nursing homes: A qualitative evaluative study. International Journal of Older Peoples Nursing. In press.