Relaying a Dementia Diagnosis: What to Say, When, How, and to Whom

How does a clinician give bad news? It is part of medical care and the practice of medicine, but the part we all want to avoid. It is not what most people in medicine or nursing thought about when they made their career choice. The reality is that medical care often entails giving bad news, defined as “any news that drastically and negatively alters the patient’s view of her or his future.”1 Learning how to do this is not easy and does not come naturally. It is a skill, and like any skill—listening to heart sounds with a stethoscope, suturing a wound, reading an imaging film—it has to be learned and practiced, then applied in a manner that is adaptable to the patient and the situation.

Sharing a dementia diagnosis can be one of the hardest parts of being a dementia care provider. What to tell the patient? The family? How to be honest, caring, and supportive in a way that will enable future trust and the best outcome for all?

Patients and Their Family Unit

The challenges begin sometimes even before the initial appointment when the family calls. They might say: “Does [the patient] have to be there?” or “Please, can you not say ‘that word’ it will be too upsetting.” By “that word,” they mean “dementia” or “Alzheimer.” Dementia is a word that many people fear, and once a dementia diagnosis (“major neurocognitive disorder” in current terminology)2 is made and the underlying etiology is determined, that is when it becomes most challenging. Most often, the diagnosis is Alzheimer disease (AD) in an older individual, but it could be Lewy body dementia (LBD) or frontotemporal dementia (FTD). 

When the family requests that the patient be excluded from the appointment to discuss the diagnosis, I try to gently explain that this would be disrespectful of their loved one, who is my patient. I try to assure them that the information will be presented in a caring way, that if the patient expresses discomfort, gets angry, or chooses to leave the room, we will be sensitive to their wishes and make adjustments. My duty is to the patient, but in the context of dementia, that patient is not just the individual with the condition, it is the person plus their family unit. To exclude the patient is not how medical care is practiced in this country and does not allow a relationship of trust to be built—between the provider and the patient or between the provider, patient, and the patient’s family. If a family is insistent that they do not want the person with dementia in the room, I ask them to bring him/her to the appointment and then work with staff to arrange to see them separately, if necessary. Sometimes we adapt by taking the patient out for a walk or for some coffee or water. More times than not, once in the office and everyone is seated in the room, things proceed smoothly. 

I am reminded of what someone wiser than me once taught me: patients are often stronger than we think they are and able to handle things when given the opportunity. There are “no good secrets,” and keeping a diagnosis from a patient, even if they will not remember what is said or lack the capacity to fully understand, will not be beneficial to anyone.  

Not a One-Step Process

Disclosing a diagnosis of dementia is not easy and not a one-time event. It takes time for patients and family members to grasp the full implications. How and when to tell others is also usually a gradual process. The words “dementia” and “Alzheimer disease”—the latter often mistakenly said as “old-timer’s disease”—is fraught with fear and stigma, much like “cancer’” was in the 1960s. 

It is important to not just use the words but to explain what they mean in clear and simple language. Acknowledge that these can be frightening terms. Ask what the patient or family knows or understands these words to mean. It is important to allow time for patients and the family to grasp what you are sharing with them. This means being comfortable with silence, having tissues ready for tears, and proceeding slowly. You may need to repeat information several times over several visits. Giving too much information can be overwhelming, and not allowing time for processing may lead to misunderstanding. Assure patients and families that you and a community of other medical and social service professionals will be there to provide care and assistance, now and into the future.

After giving a diagnosis of AD or another dementia, a common question and challenge faced by the person with dementia and family members is “who should we tell?” and “what should we say?” Encourage families to begin by sharing the diagnosis with those closest to them and the patient. I suggest the plain truth: “My mom was recently diagnosed with X,” or “We recently took dad for an evaluation and were told the changes in his thinking/mood/behavior are due to a dementia, they think it’s early signs of X.” This could be at a family meeting and if people live faraway, which is increasingly common, then a group email or letter might be suggested.  Providing resources, the title of books and websites that have well-written information for patients and families can be extremely helpful in ensuring information shared is accurate.

Conclusion

Disclosing a dementia diagnosis to family, friends, coworkers and others who should or need to know is a gradual process. Giving people language to use and role playing with them can make it easier. In my experience, most times the anxiety and fear of disclosing is quickly dispelled but not always. In the early stages of dementing illnesses, symptoms are mild and may not be noticed or are easily hidden from those who are not close to the person. The response sometimes when being told of a dementia diagnosis is “Are you sure? She seems fine to me.” More often though, family members and friends will reveal that they suspected something but “didn’t want to say anything.” Sharing a diagnosis also provides the opportunity to ask for or accept help on the long journey that patients and families experience through the course of the disease. It is a first step that, when done well, can go a long way. 

Reference

1. Buckman R. Breaking bad news: why is it still so difficult? Br Med J (Clin Res Ed). 1984;288(6430):1597-1599. doi:10.1136/bmj.288.6430.1597    
2. Warchol K. Major neurocognitive disorder: The DSM-5’s new term for dementia. Crisis Prevention Institute. Accessed May 13, 2020. https://www.crisisprevention.com/Blog/Major-Neurocognitive-Disorder-Dementia