Timely diagnosis

When is diagnosis timely?

We consider diagnosis to be timely when it is established at a point on the trajectory of dementia progression when people with dementia and their family first notice changes in cognitive function, daily activities, behaviour and/or interpersonal relationships and become worried enough to seek help and come to the attention of health and social professionals. This is the time when they can use the information provided by the diagnosis to understand what is happening, make lifestyle changes, and plan for the future.

Currently, the diagnosis is delayed in many cases or established only at the moderate or late stage of dementia. Major reasons include low public awareness of the early signs of dementia, denial of problems in people with dementia and other defence mechanisms, concerns of physicians regarding diagnostic uncertainty, poor treatment options, emotional distress of Alzheimer’s and other dementias on family members, and misperceptions about Alzheimer’s and other dementias.

Changing the current practice and making a timely diagnosis possible requires increasing public and professional awareness of the initial symptoms of dementia as well as improving knowledge among healthcare professionals about the benefits of a timely diagnosis and early intervention.

Diagnosis is timely when people are worried about changes in abilities and behaviours

Timeline of dementia progression

What are the benefits of timely diagnosis?

Timely diagnosis has benefits for people with dementia, caregivers, professionals and healthcare providers. Earlier and more accurate diagnosis avoids “medical nomadism” which begins with help seeking and ends with receiving a definitive diagnosis and treatment. It may reduce feelings of uncertainty and anxiety in people with memory complaints and their families. Prompt evaluation also facilitates the detection and treatment of alternative or concomitant causes for memory problems and behaviour change (e.g., depression, anxiety, sleep disorders) as well as the identification of conditions that require immediate action (e.g. delirium, intoxication). Furthermore it may prevent the prescription of medications that worsen cognitive function.

Timely diagnosis provides benefits to people with dementia, carers, and professionals

Advantages and disadvantages of timely diagnosis

Benefits, barriers and risks of timely diagnosis for different stakeholders

GroupBenefitsBarriersRisks
People with dementia• Reduces anxiety by addressing concerns about early symptoms
• Improves quality of life, social skills and future safety
• Enables early counselling and support
• Symptoms considered to be part of normal ageing
• Worry about losing driver’s licence, work, or income
• Limited access to services and financial resources
• Self-harm behaviour
• Social isolation
Family carers
• Clarifies concerns about cognitive and functional impairment
• Enables care plan
• Provides access to support
• Enables prevention of crises
• Person with dementia and family living far apart
• Anxiety
• Concern about changes in family dynamics
• Desire to maintain autonomy of the individual
• Time constraints
• Limited financial resources
• Reluctance to take on the burden of caregiving
• Limited access to support
• Feelings of loss, anger, uncertainty, frustration, anxiety, depression
Professionals• Better relationship with carers and family
• Prerequisite for providing information, advice, treatment and support
• Better interaction with peers
• Lack of knowledge and skills in early diagnosis of dementia
• Reluctance to disclose diagnosis
• Poor communication skills
• Poor care coordination in network
• Insufficient reimbursement
• Time constraints
• Risk of misdiagnosis
• Uncertainty about prognosis