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New knowledge

Transition from cognitive impairment to dementia. Older people's experiences

Purpose

Little is known of the experiences of people with suspected dementia about processes of assessment and initial information exchange and provision. This study aims to fill this gap by exploring people’s experiences. 

Research team

Jill Manthorpe, SCWRU (Principal Investigator)
Kritika Samsi, SCWRU
Kalpa Kharicha, University College London
Steve Iliffe, University College London
John Bond, University of Newcastle
Louise Robinson, University of Newcastle
John Keady, University of Manchester
Sue Watts, Salford Memory Service
Claire Goodman, University of Hertfordshire
Vari Drennan, St George’s, University of London & Kingston University
James Warner, Imperial College

Funding

SDO (National Institute for Health Research)

Background

Demographic change is increasing the numbers of older people with cognitive impairment and dementia syndromes. The new National Dementia Strategy in England will promote public awareness campaigns to increase early recognition of memory problems or other symptoms suggestive of dementia. The experiences of people being assessed, thinking about medication and planning ahead are largely unknown. Practitioners need to know what is the best way of providing support, advice and treatment.

Methods

This is a three-centre study (London, Newcastle and Manchester). The first objective is to capture and analyse the experiences of a group of people undergoing or recently completed assessment for possible dementia, seeking their views on what information and advice were provided by professionals. The second objective is to explore the same people’s views of what they have been told about accessing services once the initial process of assessment is completed. Within this objective we will explore the views of people who have been prescribed dementia medication and those who have not (for a variety of reasons) to gain insight into whether there are differences between these two groups.

Findings

Few people experienced the system of memory assessment as patient-centred. Waiting times could be long and unexplained; tests and assessments were sometimes distressing or confusing, Managing expectations better at initial contact may produce positive outcomes overall.

Timetable

2008 – 2010

Output

Final report

Manthorpe, J., Samsi, K., Campbell, S., Abley, C., Keady, J., Bond, J., Watts, S., Robinson, L., Gemski, A., Warner, J., Goodman, C., Drennan, V. & Iliffe, S., (2011), 'The Transition from Cognitive Impairment to Dementia: Older People’s Experiences. Final Report. [pdf, 648 KB], National Institute for Health Research: Service Delivery and Organisation programme'.

Manthorpe, J., Samsi, K., Campbell, S., Abley, C., Keady, J., Bond, J., Watts, S., Robinson, L., Gemski, A., Warner, J., Goodman, C., Drennan, V. & Iliffe, S., (2011), 'The Transition from Cognitive Impairment to Dementia: Older People’s Experiences. Final Report EXECUTIVE SUMMARY [pdf, 52 KB], National Institute for Health Research: Service Delivery and Organisation programme'.

Articles

Campbell, S., Manthorpe, J., Samsi, K., Abley, C., Robinson, L., Watts, S., Bond, J. & Keady, J. (2016) 'Living with uncertainty: Mapping the transition from pre-diagnosis to a diagnosis of dementia', Journal of Aging Studies, 37: 40-47.

Samsi, K., Abley, C., Campbell, S., Keady, J., Manthorpe, J., Robinson, L., Watts, S. & Bond, J. (2014) 'Negotiating a Labyrinth: experiences of assessment and diagnostic journey in cognitive impairment and dementia', International Journal of Geriatric Psychiatry, 29(1): 58-67.

Abley, C., Manthorpe, J., Bond, J., Keady, J., Samsi, K., Campbell, S., Watts, S. & Robinson, L. (2013) 'Patients' and carers' views on communication and information provision when undergoing assessments in memory services', Journal of Health Services Research & Policy, 18(3): 167-173. 

Manthorpe, J., Samsi, K., Campbell, S., Keady, J., Abley, C., Bond, J., Robinson, L., Watts, S., Warner, J. & Iliffe, S. (2013) 'From forgetfulness to dementia: clinical and commissioning implications of diagnostic experiences', British Journal of General Practice, 63(606): e69-e75.

Robinson, L., Gemski, A., Abley, S., Bond, J., Keady, J., Campbell, S., Samsi, K. & Manthorpe, J., (2011), 'The transition to dementia - individual and family experiences of receiving a diagnosis: A review ', International Psychogeriatrics, 23(7):1026-1043. 

Professional press

Manthorpe, J., (2011), 'Centring the diagnosis of dementia', INsite, July, p. 25.

Manthorpe, J. (2011) 'Placing the person at the centre in the diagnosis of dementia', Journal of Dementia Care, 19(4): 37.  

Presentations

Samsi, K. & Manthorpe, J. (2011) 'The transition from cognitive impairment to dementia. Older people's experiences' [ppt, 337 KB], International Psychogeriatrics Association, The Hague, 6 September.

Samsi, K., (2011), 'Capturing the diagnostic narrative of dementia through a qualitative longitudinal study. OIder people's experiences' [pdf, 126 KB], British Society of Gerontology 40th Annual Conference, Plymouth, 7 July.

Manthorpe, J. & Samsi, K., (2010), 'Transition from cognitive impairment to dementia [poster presentation]', International Dementia Development Centre Conference, London, 20 October.

Samsi, K., (2010), 'The transition from cognitive impairment to dementia. Older people's experiences' [ppt, 269 KB], Delivering Better Health Services, Manchester, 2 June.

Manthorpe, J., (2008), 'Timely recognition of dementia: the role of community professionals', Bonn, Germany, 11 December.

Media

Living with Dementia, the national magazine of the Alzheimer's Society, focuses on the Transition project on pp 20-21 of its May 2010 issue.

Impact

The findings of the study will inform the development of the National Dementia Strategy.

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