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How Can You Communicate Your Care?

Communication is not a new topic in dementia care; there are a wealth of resources to

help care teams learn to work around whatever communication limitations arise for our

loved ones living with cognitive decline. That said, they tend to emphasize

communication as reactive: you try something, your loved one responds, and you adjust

your approach accordingly. This is in line with the "dyadic" (dyad being a fancy word for

duo or pair) emphasis common to dementia care writing: one caregiver addressing the

needs of one care recipient. But care dynamics are rarely that simple, even without

dementia in the picture, and there are attitudes or “positions” you can adopt across your

care journey that help your communication with your support system as well as your

loved one.

Below, I propose three communication positions for dementia care partners

as they learn and improve. Think of them as a mindfulness method for setting your

intention (essentially, “position” your thoughts) to acknowledge the circumstances

before you, stay ahead of any reactive state, and prepare yourself for the unexpected.


The Caregiver Communication Positions

Like most things with dementia, communication has no universal or linear pattern, yet I

find it helpful to introduce communication positions by linking them with stages of

dementia. The stances are Listener, Diplomat, and Translator, and they roughly

correlate to the three-stage model as follows:

  • Listener=Early Stage.

  • Diplomat=Middle Stage.

  • Translator=Late Stage.

The Listener Position

If you, like me, didn't get much warning before your loved one started to need help with

their day-to-day care, you probably felt some strange blend of bewilderment and

determination. The early stage is when a person with dementia is still nominally

independent, but also the stage when they are best capable of adjusting to changes.

You want to approach this stage with an open mind and open heart.

Get into the habit of listening because, if you pay attention, they will tell you what is important to them, what their needs are, and what they remember. The Listener Position is all about getting out of your presumed reality (or even the fears of what dementia might look like later on) and absorbing information about their reality in the moment. Learn about dementia, but also about the person affected: who are they when they’re home alone? who are they in a crowd? who were they long ago? Your communication stance can also extend beyond the two of you; this is also the time when you want to take stock of your care team and support system. Reach out to the people you or your care partner value and ask them what support they can offer in the months and years ahead. Listen to what they offer, and what they don’t, so you don’t have to be surprised later.


The Diplomat Position

The middle stage of dementia can be the hardest stage to describe, the most

unpredictable, and often the longest. As your loved one's condition changes, it will

increasingly fall to you to interpret not only their needs and moods, but also to make

decisions that balance their autonomy with their safety, to update extended family, and

to implement strategies for your own self-care. There is no way to prepare for all eventualities, but you can shift to a Diplomat Position.


Your job as a diplomat is not to win arguments but to avoid them altogether (including with your loved one and with yourself). Start with what you learned while listening and you can begin to negotiate competing priorities of your loved one, your care team, and even strangers on the street. Approach each challenge by first asking yourself what each individuals motivations are, then checking everyone's boundaries (starting with the primary care partners and moving out from there) and identify what’s feasible from what’s left. Fairly

or not, it will fall to primary caregivers to figure out compromises that ensure everyone

gets a little something they want but most importantly that everyone feels heard. (Note

that as the person with dementia progresses, their priorities or even personality may

seem to shift; try to focus on the person they are today, right now rather than assuming

what tomorrow holds.) Make sure your needs are taken into consideration as well.


The Translator Position

Very early in the course of dementia, you can find yourself interpreting for your loved

one just by learning the pitch and cadence they hear best and restating what others

have said for clarity. But the Translator Position is about interpreting in both directions;

depending on the person, this skill set may be needed intermittently or all day, every

day.

Just as the Diplomat builds on the skills of the Listener, the Translator must take

everything they have practiced thus far and apply those lessons in a thousand tiny

moments. Late-stage dementia may include conveying what you know to new support, new home health care, new placement in a memory care facility, or even just speaking for someone 100% of the time because they are shy, tired, or nonverbal. What we notice, we can share with others, and then they can appreciate what we appreciate. An attentive caregiver will not only learn what words and sensations bring their loved one comfort, but they'll discern which postures/gestures/look mean they are comfortable and which do not; these nonverbal cues only become more essential over time. Since some theorists now frame dementia as a "disability of time"; you may find it helpful to think of time as one of the “foreign languages” you must now translate.


Let Your Communication Position Change You.

Emotions lay deep within the mind, deeper than words or memories or recognition.

When I went through these with my grandfather, I felt like I got to know him

more deeply than I'd ever know any other human being. That which does not deepen

our affection at least deepens our understanding - and can bring a caregiver to a

great and enduring peace. By preparing ourselves to communicate through these

techniques, we can open ourselves to the emotional truths our loved ones convey, whatever and whenever they see around them, and we usually find they see us and our intentions a little better, too.

 

G.J. Hodson is a caregiver emeritus, sociologist, and community educator based in North Texas. In 2017, G.J. became the first former participant of Caregivers of Dementia Wellness Retreats to serve as a volunteer, and since 2020 has presented at our Houston retreats. He has contributed past articles to the blog that you can read here and here.


To learn more about G.J.'s scholarship and upcoming appearances, click here.

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