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.