By: Cyndy Luzinski first published 12/22/16, revised 6/1/2017
Dad was a brilliant researcher and fisherman, but he was an even better father. So, when he shared his concern with me several years ago that his thinking was foggy, I started to do some research of my own. I realized we were headed on the dementia journey, not knowing at the time where the journey would take us. With divine timing and circumstances, three weeks after Dad shared his frustration with me, I was sitting down for tea in London with Penny Garner, the woman who developed the “Contented Dementia” approach used in the UK for dementia care. (© CONTENTED DEMENTIA TRUST )
I learned from Penny that the horrid image of the rocking chair occupied by an old man shutting out the world, with his eyes closed and his arms folded across his chest rocking back and forth did not have to be the reality of dementia. Penny explained that the primary difference between people with dementia which affected their memory now and the people you knew them to be 20 years ago is in their ability to efficiently learn new information. Using the non-medical analogy of the SPECAL® Photograph Album, Penny shows how our minds, specifically our memory systems work. The analogy helps me understand that the facts of new information are not stored in the mind of someone with dementia; it explains why feelings become increasingly more important than facts for the person with dementia; and it explains why cognitive loss makes emotional and spiritual needs more apparent.
Access to recent facts is required in order to use “common sense.” People with dementia may not have access to those recent facts, so care partners who are humble enough to realize that, use what Penny refers to as “SPECAL® sense.” (S-P-E-C-A-L—SPecialized Early Care for ALzheimer’s). SPECAL® sense begins with living by 3 Golden Rules: 1. Don’t ask direct questions (Learn to rephrase questions into statements that encourage responses rather than demand responses.) 2. Learn from the expert (The person with dementia is the expert. Pay attention to the questions he or she asks because that tells you what is important to him/her. 3. Don’t contradict. (Don’t correct or criticize. If the person with dementia needs to use facts that are 30 or even 50 years old in order to bring context to what he or she is feeling today, we need to be humble enough to go along with it so that we don’t cause unnecessary anxiety. Being kind is more important than being right.)
The Contented Dementia approach is simple and effective. However, many other person-centered and relationship-based philosophies and approaches exist for dementia care. What the good ones have in common is this: We cannot provide person-centered or relationship-based care without investing time to KNOW the person.
Hopeful research is underway across the globe for cures and medical treatments for various causes of dementia. Until cures and more effective preventive and maintenance treatments are found, we who are serving as care partners or senior health care professionals, CAN learn and practice the 3 Golden Rules NOW to provide the greatest contentment and joy for those living with dementia. WE are the ones who need to change. WE are the ones who need to study what responses produce the greatest sense of well-being. WE are the ones who need to know who our person with dementia was at his/her finest hour. WE are the ones who need to communicate to everyone who comes in contact with our person, key information they need to help the one with dementia make smooth transitions throughout the day, indeed, throughout a lifetime. WE are the ones who can “make a present of the past” ® to help our friends and loved ones with dementia thrive.
Cyndy Luzinski, is an advanced practice nurse and dementia practitioner who has a passion for helping people with dementia and their care partners live with hope and joy. She facilitates memory cafes and a dementia care partners’ support group in Northern Colorado. She is the founder of the volunteer initiative and non-profit organization called “Dementia-Friendly Communities of Northern Colorado.®” This initiative leverages existing community resources and activities and provides training and support so that people walking the dementia journey, in our communities, don’t have to walk alone.
As a member of Eldercare Network, Cyndy will be presenting on person-centered care approaches and Contented Dementia strategies at the Fort Collins Senior Center, July 13 5:30-6:30, and at the Loveland Library, July 20 5:30-6:30 pm.
For more information see DementiaFriendsNoCo.org or the “Dementia-Friendly Communities of Northern Colorado®” Facebook page.