Why there’s more to dementia research than just biology

In this feature, Prof. Alison Wray, from Cardiff University in the United Kingdom, discusses the importance of communication in dementia. She explains why this field of research is both fascinating and vital.

Since 2007, Prof. Wray has worked at the Centre for Language and Communication Research at Cardiff University. What follows is Prof. Wray’s response when asked what aspects of dementia research excite her most.

There is, rightly, a lot of emphasis on understanding the biological and environmental causes of dementia, as well as the best treatments for it. Such work helps identify ways to prevent dementia and slow its development.

However, for as long as dementia cannot be prevented or satisfactorily treated, it is also important to investigate why some people are better able to cope than others with a given level of dementia symptoms. Only in this way can we improve quality of life for people living with a form of dementia.

Communication: Improving daily experiences

Two vital questions need to be answered:

Experts have asked both of these questions, but so far, they have only found partial answers. I am excited by recent developments that are offering a new type of answer.

Specifically, I believe that gaining an understanding of the mechanisms of communication is core in finding the way forward.

Mechanisms of communication

None of us like being misunderstood, not fathoming what someone else is telling us, or not understanding why something has been said. We often react quite strongly then these things happen. In fact, it’s likely that most conflicts between people arise from, or are made worse by, problems with communication.

Different types of dementia vary in how much they directly impact language itself, but they almost all impact communication. That’s because the process of successfully communicating with someone involves a long chain of components, and dementia is very likely to compromise at least one of them:

• having and holding in mind a coherent thought that you would like to express
• evaluating its relevance to the situation (which involves a good memory for recent events)
• formulating a way of turning the thought into a message that will be appropriate for the other person and situation — for instance, it must be in the right language, must not be too formal or informal, must acknowledge what the addressee already knows, and more
• locating in one’s mental dictionary the right words for creating the message
• holding that information in mind while selecting and constructing a grammatical framework to put the words into
• organizing the physical movements to enunciate the sounds in the right order
• monitoring and evaluating the output to pick up any errors and correct them

And that’s only in language production. There’s a similar list for comprehension.

When someone is living with dementia, they are more likely than others to encounter breakdowns in that communication chain. The outcome is a reduced ability to make themselves understood and to understand others.

Importantly, those they interact with who do not have dementia will also experience the effects. Communication is a two-way process, so they, too, will find that they don’t understand or are not understood. They, like people living with dementia, will experience the consequential rush of alarm, frustration, or anger about not sending or receiving the message.

All too often, their response will be to take it out on the person living with dementia, whose daily life is, therefore, likely to include being spoken sharply to about not being clear or relevant, about repeating themselves, or about not having paid attention. These behaviors in the person without dementia are clearly unhelpful.

A major source of stress for families and professional caregivers is not knowing why they find it so difficult to stop responding that way, even though they know that the other person cannot help their communication deficit.

My research uses a comprehensive model of how and why we communicate to explain why it’s so hard to suppress those aggressive responses and to mark out the path for more effectively transcending them.

Communication and resilience

A useful way to look at things is through the lens of resilience — to disease, to symptoms, and to the onward effects of symptoms.

Research into the neurological determinants of susceptibility to dementia-causing diseases has identified brain reserve, or neurological reserve, as a significant factor.

Neurological reserve relates to how the brain’s internal structures and connections enable signals to continue to flow despite damage to cells.

Think of the brain’s connections as a “complex road network” — the wider the roads and the more alternative routes there are, the more likely you can get to your destination despite an accident.

In a similar vein, cognitive reserve has been conceptualized to capture individual variation in how badly affected people are by a given level of disruption as they try to achieve their cognitive tasks.

This is about how we use the brain’s capacity to protect us from disruption. If the brain is a road network, how good are we at finding and using alternative routes when a road is closed?

What has been missing until recently was any equivalent way of conceptualizing differences in people’s resilience to a given level of symptoms.

In my work, I have introduced two concepts to match the others: social reserve and emotional reserve. Both of these are heavily reliant on communication.

Social reserve

Social reserve is the resilience a person has to their dementia symptoms, as afforded by the people, institutions, and infrastructures around them. How easy is it to get to visit a doctor, find comprehensible information, be accepted into a social circle, and have a meaningful conversation with a neighbor?

Do media representations support positive or negative conceptualizations of dementia? How positively or negatively do they and people around them conceptualize dementia based on media representations?

How does society communicate its care, or lack of care, toward people living with dementia through its provision of accessible and joined-up services, opportunities to sustain social interaction, and so on?

In the road network analogy, think: Who is providing the map for navigating to the right place on time? Who is maintaining the car? Who is encouraging the driver to keep going when it’s challenging to get around?

Emotional reserve

Emotional reserve is a person’s internal resilience to the many daily onslaughts arising from their dementia, particularly in the face of limited social reserve.

How they feel when:

• They try to phone some agency and can’t understand which buttons to press to get to the right department.
• The bus driver forgets to tell them when to alight, and they end up miles from home.
• An uncaring customer services worker doesn’t understand their difficulties with paying.
• They turn up at a club they’ve belonged to for years, but no one talks to them.
• In a care home, they’re stuck in a corner for hours, not attended to when they ask to use the bathroom, or are banished to their room because they are being “disruptive.”

Back to the road network. Think, “Does the driver have confidence driving? Are they getting discouraged so they want to give up trying to get to places?” How much easier life is if we feel positive about it.

It’s families and caregivers, too

Social and emotional reserve need to be kept at high levels not only for people with dementia but also their family members and professional caregivers, who can also feel negative because they are socially isolated, undersupported, or frustrated by inadequate infrastructures.

If they are undersupported, it is likely to directly translate into frustration and conflict in their communication with those they care for, undermining their own well-being as well as that of people living with a form of dementia.

Toward a better future for people affected by dementia

There is existing exciting research and practice on how better communication can massively improve the experience of people living with dementia.

My work, by conceptualizing what communication is for and how it works, is helping explain why some approaches work better than others.

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