Living with dementia results in a lot of changes, particularly in terms of touch. Whether you are a wife, husband, daughter or friend—it becomes difficult to know how best to respond. The use of touch can be very effective.
The Functional Assessment Staging Tool is a tool widely used to assess where individuals are in the seven stages of dementia progression.2 This well validated tool shows that as a person’s brain degenerates, they move back in time to younger ages of emotional and cognitive processing. Concepts, skills and emotional connections that were normal as an adult start regressing into adolescent and eventually childhood responses.
This makes relationships with caregivers, whether professional, child or spouse, challenging. We need to adapt.
Cultural anthropologist Ashley Montagu links childhood develop and touch in his book Touching, the Human Significance of the Skin. If you have any spare time, this book has fascinating information. He describes the skin as the second most powerful organ for interpreting signals and communication—with the brain being the most powerful. Montagu clarifies that even as the skin changes with age, the fingers and hands have the greatest number of neuro-tactile elements.
As a spousal caregiver, I see the subtle changes in my husband. The romantic embrace is now more of a bear hug. I have adapted with more hand-holding, less expectation of romance and an increase in camaraderie through touch. The we are in this together needs to be expressed now more than ever, but the old strategies were no longer working.
I coach grieving adult children who are totally frustrated when they reach out to a parent with dementia to share an anecdote or reach out for comfort. The responses that were once there, are no longer. I coach caregivers to expand their network.
Who might offer the wisdom and solace that mom, dad or spouse once did? Adaptation is the only way to thrive in this disease.
This journey is not easy, and certainly not one any of us would have chosen. But we do have many resources to help us along the path—provided we practice self-love and stay in touch with one another.
Montagu, A. 1986. Touching, the Human Significance of the Skin, Harper & Row.