Dementia

The standard set

The ICHOM Standard Set for Dementia is the result of hard work by a group of leading physicians, measurement experts and patients. It is our recommendation of the outcomes that matter most to persons with Dementia. We urge all providers around the world to start measuring these outcomes to better understand how to improve the lives of their patients.

1 Includes anxiety, depression, behavior, apathy, and psychosis. Tracked via the Neuropsychiatric Inventory (NPI).

2 Includes memory, orientation, verbal fluency, and executive function. Tracked via the Montreal Cognitive Assessment (MoCA).

3 Includes community affairs and relationships.

4 Includes instrumental and basic activities of daily living. Tracked via the Bristol Activity Daily Living Scale (BADLS).

5 Includes finance, enjoyment of activities, pain, and side effects of medication. Tracked via the Quality of Life-AD (QOL-AD) and Quality of Wellbeing Scale-Self Administered (QWB-SA).

6 Tracked via the EuroQol-5D (EQ-5D).

7 Tracked via the Clinical Dementia Rating (CDR).

Implement with ICHOM

STANDARD SET MATERIALS

Standard Set materials have moved to ICHOM Connect and are still available free of charge. Please log in or register to gain access to unlimited ICHOM resources at a single click of a button. There, you can also indicate your interest in receiving updates about and implementing the Standard Set.

Available materials:

Flyer – a brief overview of the most important outcomes for patients relating to this ICHOM Standard Set.
Reference Guide – a complete overview of the ICHOM Standard Set, including definitions for each measure and selected PROM instruments, time points for collection, and associated risk factors.
Data Dictionary – an index of the outcomes and case-mix variables included in the standard set, how to code them, and the information you need to collect when implementing the outcomes in practice.
Press Release
Published Articles
Additional materials

ICHOM Connect

Team that developed this standard

Australia

Jan Sansoni | Australian Health Services Research Institute; University of Wollongong
Kate Swaffer* | Dementia Alliance - International and University of Wollongong

France

Philippe Robert | Nice Memory Centre for Care and Research; Cognition, Behavior and Technology Unit; University of Nice

Ireland

Helen Rochford-Brennan*

Japan

Kentaro Horibe | National Center for Geriatrics and Gerontology

Peru

Mariella Guerra | Instituto de la Memoria

South Korea

Ki-Woong Kim | National Institute of Dementia

Sweden

Maria Eriksdotter | Karolinska Institute; Swedish Dementia Registry (SveDem)
Miia Kivipelto | Karolinska Institute

United Kingdom

Beth Britton**
Alistair Burns | NHS England; Manchester Mental Health and Social Care Trust
Geoff Huggins | Scottish Government
Vicky Leah | University College Hospital - NHS Foundation Trust
Gary Morrison | Mental Welfare - Commission for Scotland
Ann Netten | University of Kent
Keith Oliver***
Emma Revnish | Stirling University
Robert Woods | Bangor University

Switzerland

Norman Sartorius | Association for the Improvement of Mental Health

United States

Soo Borson | University of Washington - Schools of Medicine and Nursing
Laura Gitlin | Johns Hopkins Center for Innovative Care in Aging
Nancy Hodgson | Johns Hopkins School of Nursing

*Person with dementia
**Former carer, dementia campaigner and policy consultant
***Person with demetia, with Rosemary Oliver | Keith’s wife and Carer - Jess Amos & Ingrid Tamuyeye | Keith’s Supporters and University of Kent Psychology Students

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Dementia

The standard set

STANDARD SET MATERIALS