Half a million Canadians suffer from dementia and one in five Canadians cares for someone with dementia. Dementia is an umbrella term for many conditions that cause “loss of memory, language, problem-solving, and other thinking abilities that are severe enough to interfere with daily life”.
As doctoral students and health care providers, as well as family members of people with dementia, we criticize common stereotypes and misconceptions. These often appear in the metaphors used to explain and understand dementia. While some metaphors may be helpful, they can also be harmful.
Common dementia metaphors
Some metaphors for dementia include comparisons to zombies or children. We see this when someone refers to the experience of dementia as a “regression to childhood” or a “walking dead.”
These metaphors can increase the belief that people with dementia are incompetent, unable to consent and do not need to be counseled about their care. This may happen regardless of the type or severity of dementia they have.
It may also cause people with dementia to feel that they are not reliable reporters of their own experiences. So they may be reluctant to contribute important information about their experience, or they may not be given the autonomy that they can.
The common framing of dementia on a social level and in the media can also cause harm. This typical narrative often frames all forms of dementia as Alzheimer’s disease.
A common early symptom of Alzheimer’s disease is progressive memory impairment described as long-term, progressive memory loss. This involves difficulty creating new memories and remembering past events. Some of the metaphors used to support this narrative are that dementia is an invader that “attacks and destroys” the brain and memories, or that it is a predator that “deceptively takes away its sense of self”.
However, this metaphor is not sufficient for other types of dementia. For example, vascular dementia is any dementia caused by a cerebrovascular disease (such as a stroke), which obstructs blood flow to parts of the brain.
Unlike Alzheimer’s disease, vascular dementia may spare episodic memory and instead significantly impair executive function, such as the ability to abstract, plan, organize, and adapt. However, the symptoms depend on the affected area of the brain.
One way to understand vascular dementia is to use the balloon analogy. Imagine you are holding a bunch of balloons. Imagine that balloons are memories and knowledge, and their strings are the pathways to form and retrieve them.
In this type of dementia, you may still have balloons, but their strings are severed – for example, you may have formed language but are unable to get them back to speak. Or maybe some of the balloons have burst leaving some gaps, while others remain. For example, language may remain intact, but planning and constant attention may be difficult.
Pros and cons of dementia metaphors
We need metaphors in medicine. Metaphors can be integrated tools for exchanging information between patients and health care providers.
Healthcare providers may use metaphors to help facilitate communication with patients. Patients also often express their symptoms and experiences metaphorically to create a mutual understanding with health care providers. Metaphors can help patients and health care providers to work together with a common understanding of the goal of care.
While metaphors may be excellent tools for this, all tools have their limitations. Metaphors may not do everything you want them to, and they may leave out important parts of the story.
What makes metaphors harmful is that they can homogenize the dementia experience while denigrating and negating important components of their experience. Metaphors can’t always capture mixed dementia or severe dementia — when people have symptoms of several types.
Metaphors can be restricted
While the above metaphors may highlight some of the biomedical elements of dementia, these same metaphors may not capture the relationships between people, what they value, the things they do in their day, and the places they move about.
In comparing two things, metaphors highlight what they have in common. These may then direct our response to dementia in limited ways. People are more likely to respond with a solution framed in the same metaphorical way as the problem. For example, understanding dementia as a predator or invader is likely to drive a response that includes attacking it with tools such as medications.
On the other hand, limiting the response to only this may neglect to consider important environmental modifications and caregiver relationships that would also help improve quality of life. If we limit our thinking to a particular metaphor, these important pieces may be left unrecognized in clinical communication.
Working together, health care providers and patients must be critical of dementia metaphors. As they help create a common understanding, metaphors can play an important role in bridging the gap between knowledge brought by patients and healthcare providers.
However, the question “what can this metaphor leave behind?” and “What is the value of this metaphor for universal care?” They may be equally important facilitators of clinical communication.