Resources and Information

About Dementia

Dementia is seriously disabling for those who have it and is often devastating for their caregivers and families. With an increasing
number of people being affected by dementia, almost everyone knows someone who has dementia or whose life has been touched by it. The number of people living with dementia worldwide is currently estimated at 35.6 million. This number will double by 2030 and more than triple by 2050.

The high global prevalence, economic impact of dementia on families, caregivers and communities, and the associated stigma
and social exclusion present a significant public health challenge.  The global health community has recognized the need for action
and to place dementia on the public health agenda.  The World Health Organization and Alzheimer’s Disease International,
an international NGO in official relations with WHO, jointly developed the report, Dementia: a public health priority. The
purpose of this report is to raise awareness of dementia as a public health priority, to articulate a public health approach and to advocate
for action at international and national levels based on the principles of evidence, equity, inclusion and integration.

A recent WHO report aims to encourage country preparedness by strengthening or developing policy and implementing it through plans and programmes which enhance dementia care in order to improve the social well-being and quality of life of those living with dementia and their caregivers. The reports includes an overview of global epidemiology and the impact of dementia, national-level approaches to
dementia including the role of health and social care systems and workforce, issues around caregiving and caregivers, and awareness
raising and advocacy for dementia.

The report is expected to be a resource that will facilitate governments, policy-makers, and other stakeholders to address the impact of dementia as an increasing threat to global health. It is hoped that the key messages in the report will promote dementia as a public health and social care priority worldwide.

The world’s population is ageing. Improvements in health care in the past century have contributed to people living longer and
healthier lives. However, this has also resulted in an increase in the number of people with noncommunicable diseases, including
dementia. Although dementia mainly affects older people, it is not a normal part of ageing. Dementia is a syndrome, usually of a chronic
or progressive nature, caused by a variety of brain illnesses that affect memory, thinking, behaviour and ability to perform everyday

Dementia is overwhelming not only for the people who have it, but also for their caregivers and families. It is one of the major causes
of disability and dependency among older people worldwide. There is lack of awareness and understanding of dementia, at some level,
in most countries, resulting in stigmatization, barriers to diagnosis and care, and impacting caregivers, families and societies physically,
psychologically and economically. Dementia can no longer be neglected but should be considered a part of the public health
agenda in all countries.

The objective of this report is to raise awareness of dementia as a public health priority, to articulate a public health approach and to
advocate for action at international and national levels based on the principles of inclusion, integration, equity and evidence.


A & TSI Aboriginal and Torres Strait Islander
ADI Alzheimer’s Disease International
ADL Activities of daily living
AIDS Acquired Immunodeficiency Syndrome
APOE Apolipoprotein E
CI Confidence interval
CRPD Convention on the Rights of Persons with Disabilities
CSAP Carer’s Strategy and Action Plan
DLB Dementia with Lewy bodies
DSM Diagnostic and Statistical Manual of Mental Disorders
EuroCoDe European Collaboration on Dementia
EURODEM European Community Concerted Action on the
Epidemiology and Prevention of Dementia
FTD Frontotemporal dementia
GBD Global burden of disease
GDP Gross domestic product
HAART Highly Active Antiretroviral Therapy
HAND HIV-associated neurocognitive disorder
HHS Health and Human Services
HIV Human Immunodeficiency Virus
HR Hazard ratio
IADL Instrumental activities of daily living
ICD International Statistical Classification of Diseases and
Related Health Problems
IMPACT Important Perspectives on Alzheimer’s Care and
LMIC Low- and middle-income countries
MAIA Maisons pour l’Autonomie et Intégration des malades
mhGAP Mental Health Gap Action Programme
MNS Mental, neurological and substance use
NIH National Institutes of Health
OECD Organisation for Economic Co-operation and
PAR Population attributable risk
PPP Purchasing power parity
REACH Resources for Enhancing Alzheimer’s
Caregiver Health
RR Relative risk
SEK Swedish krona
VaD Vascular dementia
WHO World Health Organization
YOD Young onset dementia

Preparedness for Dementia

The challenges to governments to respond to the growing numbers of people with dementia are substantial. A broad public health
approach is needed to improve the care and quality of life of people with dementia and family caregivers. The aims and objectives of the
approach should either be articulated in a stand-alone dementia policy or plan or be integrated into existing health, mental health or
old-age policies and plans. Some high-income countries have launched policies, plans, strategies or frameworks to respond to the
impact of dementia.
There are several key issues that are common to many national dementia policies and plans, and these may be necessary to ensure
that needs are addressed in an effective and sustainable manner.
These include: scoping the problem; involving all the relevant stakeholders, including civil society groups; identifying priority areas for
action; implementing the policy and plan; committing resources; having intersectoral collaboration; developing a time frame; and
monitoring and evaluation.
The priority areas of action that need to be addressed within the policy and plan include raising awareness, timely diagnosis, commitment
to good quality continuing care and services, caregiver support, workforce training, prevention and research. People with dementia and their families face significant financial impact from the cost of providing health and social care and from reduction or loss of income. Universal social support through pensions and insurance schemes could provide protection to this vulnerable group.
Formal recognition of the rights of people with dementia and their caregivers through legislation and regulatory processes will help
reduce discriminatory practices. Fundamental to upholding a person’s rights is the recognition of capacity in persons with dementia.
Where capacity is impaired due to dementia, legal provisions should recognize and protect the right to appropriate autonomy and selfdetermination including substitute or supported decision-making and procedures for implementing advance directives. Education and
support relating to ethical decision-making and human rights should be an essential part of capacity-building for all involved in providing
dementia care, including policy-makers, professionals and families.

Health and Social Systems Development

The health and social care needs of the large and rapidly growing numbers of frail dependent older persons should be a matter of
great concern for policy-makers in all countries. This is particularly so for LMIC which will experience the greatest increase in ageing in
the coming decades.

This challenges governments to develop and improve services for people with dementia, focusing on earlier diagnosis, provision of
support in the community, and a responsive health and social care sector. Integrated and coordinated health and social pathways and
services will be needed to cater for the changing needs of people with dementia and their caregivers. Such pathways should ensure that the needs of specific or minority population groups are taken into account.

Improved community support will assist families to provide care for longer and to delay or reduce reliance on high-cost residential care. Where resources are finite, especially in LMIC, a focus on community outreach could be an efficient use of scarce resources to improve the quality of life of people with dementia and their caregivers. The effectiveness of task shifting (with appropriate guidelines and training) in LMIC should be further evaluated as a solution to the under-supply of a professional workforce.

Capacity-building of the workforce is essential to improve knowledge and awareness of the benefits of a coordinated response to care.
Dementia care, long-term care and chronic disease management incorporating a multidisciplinary team should form part of professional
education and should be supported by the development of appropriate practice guidelines. In a world with an increasingly
mobile population, the migrant workforce brings its own set of challenges that need to be understood and addressed.

Early Stage

The early stage is often overlooked. Relatives and friends (and sometimes professionals as well) see it as “old age”, just a normal part of
ageing process. Because the onset of the disease is gradual, it is difficult to be sure exactly when it begins.
• Become forgetful, especially regarding things that just happened
• May have some difficulty with communication, such as difficulty in finding words
• Become lost in familiar places
• Lose track of the time, including time of day, month, year, season
• Have difficulty making decisions and handling personal finances
• Have difficulty carrying out complex household tasks
• Mood and behaviour:
– may become less active and motivated
and lose interest in activities and hobbies
– may show mood changes, including
depression or anxiety
– may react unusua

Middle Stage

As the disease progresses, limitations become clearer and more restricting.
• Become very forgetful, especially of recent events and people’s names
• Have difficulty comprehending time, date, place and events; may become lost at home as well as in the community
• Have increasing difficulty with communication (speech and comprehension)
• Need help with personal care (i.e. toileting, washing, dressing)
• Unable to successfully prepare food, cook, clean or shop
• Unable to live alone safely without considerable support
• Behaviour changes may include wandering, repeated questioning, calling out, clinging, disturbed sleeping, hallucinations (seeing or
hearing things which are not there)
• May display inappropriate behaviour in the home or in the

Late Stage

The last stage is one of nearly total dependence and inactivity. Memory disturbances are very serious and the physical side of the disease becomes more obvious.
• Usually unaware of time and place
• Have difficulty understanding what is happening around them
• Unable to recognize relatives, friends and familiar objects
• Unable to eat without assistance, may have difficulty in swallowing
• Increasing need for assisted self-care (bathing and toileting)
• May have bladder and bowel incontinence
• Change in mobility, may be unable to walk or be confined to a wheelchair or bed
• Behaviour changes, may escalate and include aggression towards carer, nonverbal agitation (kicking, hitting, screaming or moaning)
• Unable to find his or her way around in the Home