Informing patients that they have Alzheimer’s disease presents special challenges for the doctor, the patient, and the family.
Some doctors—even experienced ones—find it difficult to deliver such potentially devastating news. Many patients are unaware that they have a memory problem and, even when informed, are not able to understand or accept this fact.
In addition, since memory is impaired in all patients with Alzheimer’s disease, they often cannot remember the medical information once they have been told.
Nevertheless, current guidelines from most professional organizations recommend full disclosure. The American Medical Association recommends telling a person that he or she has the disease "if at all possible,” which means taking into account the degree of remaining cognitive function. Recent reviews suggest that the rate of disclosure is approximately 50 percent.
But not disclosing at the time of assessment denies patients who are still capable of understanding the diagnosis the opportunity to make important decisions about future care and interventions.
Indeed, a survey of 100 people with mild cognitive impairment or mild Alzheimer’s published in a 2011 issue of the Journal of the American Geriatrics Society found that patients preferred to participate in health care-related decisions, especially in social ones, such as the decision to stop driving a car or relocate to a nursing home.
Sharing the diagnosis can also give patients as well as their families the opportunity to reach out for support, advice, and financial and legal counseling.
What to expect
In many cases, sharing the diagnosis falls to a family member. Regardless of who breaks the news, however, patients may experience a range of emotions.
Common reactions include:
A loss of self. Feeling as if you’re losing your identity is a typical response for people with early-stage dementia. Dementia poses a threat to personality and character. Understandably, dementia’s symptoms, such as forgetting faces and struggling to express oneself, 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 with early-stage disease 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.
In time, 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.
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.
Denial. Others 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. The amount of information a person can comprehend about his or her diagnosis and prognosis depends on the stage of the illness. But just putting a name to the problem is helpful for many. 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.
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 others and become socially isolated. But such an outcome is clearly undesirable, since studies show that maintaining social connectedness 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.
Having the conversation
If you are a family member who has been told of your loved one’s diagnosis, you need to decide whether and how to share this news with the patient. As you make the decision, consider these points.
1. If the patient has not written a will or executed an advance directive, then he or she can take this opportunity to do so.
Because cognitive decline is inevitable with Alzheimer’s disease, it is important that these tasks be done as early as possible in the illness. Other business, financial, or personal issues can also be addressed while the person still has the capacity to make informed decisions.
2. An individual with mild Alzheimer’s can still make valuable contributions. For example, some people serve as mentors to others with a new diagnosis.
3. Also at issue is access to clinical trials of investigational treatments. Although family members can give consent for people with dementia, it is preferable for the person to give this consent in advance.
If you decide to tell the person about the diagnosis, take some time to plan your approach and to anticipate the person’s reactions.
• Choose your setting carefully. A conference, consisting of you, other caregivers, the doctor, and the patient may be helpful for some people; others may respond better to a one-on-one conversation. If you fear the patient might direct anger at you, ask his or her doctor to deliver the diagnosis.
• Be aware that confusion, anger, and denial are common reactions. If they occur, don’t try to argue with or convince the person—further detailed discussion likely will not be helpful.
• Don’t be surprised if the person already suspects that he or she has Alzheimer’s disease.
• Provide as much information as the patient is able to understand, especially about symptoms, medications, and upcoming lifestyle changes.
• Watch for signs of sadness, anger, frustration, or anxiety, and let the patient know that these are understandable feelings and you are open to discussing his or her needs and emotions.
• Reassure the person that help and support will continue to be provided.
Reach out for support
Individuals with newly diagnosed dementia and their caregivers shouldn’t be shy about asking for help. Getting assistance from friends, family, and organizations such as the Alzheimer’s Association is one of the most valuable steps a person can take to help meet the challenges of dementia.
Professional counseling can help individuals who are struggling to work through their emotional responses and, later, help develop problem-solving strategies to maintain a sense of control and autonomy. Grief counseling can be useful for helping overcome the profound sense of loss that is common.
Many people with dementia and their families find it helpful to attend support groups where they can share knowledge, fears, experiences, and coping strategies and overcome social isolation.
A word of caution, however: Although peer support is valuable, people can find it distressing if some group members are at later stages of the disease because it can be an upsetting reminder of what the future might hold.
If you or a family member has early stage disease, look for a group designed specifically for people in that stage. Ask your doctor for a referral or contact your local chapter of the Alzheimer’s Association to find a group near you. You can also reach out to the national Alzheimer’s Disease Education and Referral Center.
If you can’t find a local group to attend in person—or you’re unable to travel—a telephone help line or an Internet support group can be a viable option.