The World Health Organization (WHO) has launched a new toolkit to provide practical guidance and tools that can support efforts, including planning and implementation activities, to create dementia-inclusive societies.
Dementia: Dementia is a syndrome due to disease of the brain – usually of a chronic or progressive nature – in which there is disturbance of multiple higher cortical functions, including memory, thinking, orientation, comprehension, calculation, learning capacity, language and judgement. Consciousness is not clouded. The impairments of cognitive function are commonly accompanied, and occasionally preceded, by deterioration in emotional control, social behaviour, or motivation.
This syndrome occurs in Alzheimer’s disease, in cerebrovascular disease, and in other conditions primarily or secondarily affecting the brain, such as motor neurone diseases, Prion disease, Parkinson’s disease and related disorders, Huntington’s disease, spinocerebellar ataxia, and spinal muscular atrophy.
The following International Classification of Diseases (ICD) codes relate to dementia – ICD-9: 290, 330–331; ICD-9 BTO: B222, B210; ICD-10: F01, F02, F03, G30–G31.
Carer/caregiver: A person who provides care and support to a person with dementia.
Such support may include:
- Helping with self-care, household tasks, mobility, social participation and meaningful activities.
- Offering information, advice and emotional support, as well as engaging in advocacy, providing support for decision-making and peer support, and helping with advance care planning.
- Offering respite services.
- Engaging in activities to foster intrinsic capacity.
Carers/caregivers may include relatives or extended family members as well as close
friends, neighbours and paid lay persons or volunteers.
Dementia-friendly initiative (DFI): The activities being undertaken to make society
more inclusive of people with dementia.
Dementia-inclusive society: A society in which people with dementia and their carers
fully participate in society and have a place in it. It is a society where they enjoy respect,
freedom, dignity, equality, accessibility and quality of life. It is one where they are
empowered to live independently, free from stigma, discrimination, exploitation,
violence or abuse.
Figure 1. Global burden of dementia
Dementia affects every aspect of an affected person’s life. In the early stages a person may experience loss of memory that causes them to forget how to perform simple day-to-day tasks, such as cooking or cleaning. As the illness progresses, the person may become more dependent on others.
Stigma heightens the already significant psychological, social, emotional and financial impacts that dementia has on individuals, their carers, families and communities. It also exposes people with dementia to potential human rights violations in their own communities. It is not uncommon for people with dementia to experience physical and emotional abuse, social isolation or loss of dignity. Supportive environments and societies are crucial in helping overcome stigma and discrimination against people with dementia.
Dementia awareness and friendliness feature prominently in the Global Action Plan on the Public Health Response to Dementia 2017-2025, adopted in May 2017 by the Seventieth World Health Assembly.
The global dementia action plan’s global target 2.2. which aims to establish
at least one dementia-friendly initiative to foster a dementia-inclusive society in
50% of countries by 2025. WHO developed ‘Towards a dementia-inclusive society: WHO toolkit for dementia-friendly initiatives’ to help communities and countries achieve this target. The toolkit will also support the implementation of other initiatives such as the Decade of Healthy Ageing 2020-2030.
- presents a common framework that identifies key components of, and partners that need to be involved in creating, dementia inclusiveness;
- provides guidance on how to use the framework to implement and scale up initiatives, as well as integrate dementia into related initiatives, such as age-friendly, healthy and barrier-free cities; and
- outlines steps to monitor progress in the initiatives’ implementation and evaluate their impact.
The toolkit is divided into two parts:
- Part I contains introductory information on dementia, and includes a theoretical framework.
- Part II includes four practical modules, each featuring a series of practical steps and exercises, focusing on: starting a new dementia friendly initiative (DFI), integrating dementia into an existing initiative, monitoring and evaluating a DFI, and scaling-up a DFI.
The modules can be used together or separately, and can be adapted to suit local needs and settings.
Figure 2. WHO framework for a dementia-inclusive society
The framework includes four key principles: participation, collaboration, leadership, and sustainability.
It provides a step-by-step template for carrying out, integrating, evaluating and scaling initiatives that are adaptable to local contexts, cultural norms, community practices and
population needs. It outlines the different components of the framework and defines key principles and actors such as key partners and target groups. The framework identifies the fundamental process and steps that will guide the implementation, evaluation and/or scaling of DFIs in different sections of the toolkit.
Link to the related WHO news release:
Link to the new WHO toolkit: