When you reach age 65, you have a one in 10 chance of developing dementia—the gradual loss of intellectual functions, such as memory, judgment and abstract thinking—during your remaining lifetime. (Alzheimer's disease is the most common form of the condition.) For people who live to 85, the risk rises to one in three.

Many people are diagnosed in the later stages of dementia. But researchers and clinicians are now making a concerted effort to diagnose dementia in the early stages when patients may still have the capacity to understand the disease's course and make important decisions about future care and interventions. An early diagnosis can give patients and their families the opportunity to reach out for support, advice and financial and legal counseling.

An early diagnosis also has a psychological and social impact on individuals and their loved ones. A number of studies have been undertaken to help experts gain a clearer understanding of the psychosocial changes individuals face after an early dementia diagnosis and the adequacy of resources available to those affected.

Reactions and preferences can vary widely among individuals newly diagnosed with early-stage dementia. For example, one person may want to absorb as much information as possible about dementia, while another may feel there's no point in learning more about the inevitable. But the studies did find some common reactions.

The emotional impact

It doesn't take a scientist to figure out that being told you have an incurable disease that slowly robs intellectual functioning can take an emotional toll. Adjusting to a diagnosis at any stage of dementia is a complex, evolving process for the person diagnosed and his or her family. You may experience mixed feelings and a range of reactions, including:

A loss of self. Feeling as if you're losing your identity is a typical response.

Dementia poses a threat to personality and character. Understandably, dementia's symptoms, such as forgetting faces and struggling to express yourself, can leave feelings of loss, uncertainty and frustration. Experiencing acute grief and mourning your loss of self-identity is common. Research suggests that engaging in meaningful activities, such as keeping a journal, can help in coming to terms with a changing sense of identity.

Some people turn to holistic practices or spiritual pursuits. Others choose to join a clinical drug trial, not only to gain access to new, potentially effective therapies, but also to contribute to the advancement of dementia research. Eventually, some people "reprioritize" the condition and approach it as just one part of their identity.

Family members can help, too, by focusing on remaining abilities instead of drawing attention to mistakes. Many people are reassured by the idea that they’ll remain close to their family no matter how ill they become.

Unawareness. Most individuals with Alzheimer's disease aren't aware they have impaired memory and thinking. For others, unawareness increases as the disease progresses. This suggests that unawareness is part of the brain disease in some individuals. Arguing with them or repeatedly demonstrating to them that they're forgetful won't help and is likely to upset them more.

Denial. Other individuals outwardly deny or ignore the diagnosis but seem to be aware from their behavior that they have a problem. Research suggests that this reaction can sometimes be a self-monitoring strategy in an attempt to be seen by others as a person, not an object, and maintain self-esteem. Studies have shown, though, that these feelings eventually evolve into acceptance.

Relief. Certain individuals and their loved ones report feeling relief upon hearing the news. The anxiety of not knowing what’s causing symptoms like forgetfulness can be a tremendous burden. A diagnosis can confirm suspicions that dementia is the cause and legitimizes the need for support and therapeutic interventions. A similar reaction is seen in many other illnesses in which the initial symptoms are unexplained.

Secretiveness or embarrassment. It's common for individuals with insight to conceal or be reluctant to talk about their diagnosis for fear of how others might perceive them or because they need time to adjust while trying to maintain an appearance of normalcy. As a result, these individuals are often tempted to stop seeing friends or family members and become socially isolated—outcomes that are clearly undesirable, since studies show that maintaining social connectiveness is key to coping with the psychological impact of a dementia diagnosis.

Anxiety, anger, sadness or depression. These are all normal reactions. Demoralization is especially common in the disease’s early stages the same way it is when grieving any other loss. Behavioral therapy or counseling may ease feelings of anxiety and depression if they interfere with everyday functioning.

Source: Prepared by the Editors of The Johns Hopkins Medical Letter: Health After 50

Publication Review By: the Editorial Staff at Healthcommunities.com

Published: 30 Jul 2013

Last Modified: 10 Sep 2015