Thursday December 22, 2016
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 explained 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 to bring context to what they are feeling today, we need to be humble enough let them do that. Being kind is more important than being right.)
I had the privilege of meeting with Penny again for several days last month in Burford, England to learn more about how to more fully implement the person-centered care Contented Dementia approach with our friends and loved ones living with dementia. 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.
We cannot provide person-centered care without investing time to know the person, but we CAN accomplish a sense of contentment 24 hours/day, 7 days/week, when we implement the SPECAL® method of ensuring Contented Dementia. I observed the difference it made with my dad. The Contented Dementia approach has and is working with numerous clients and memory café friends, and according to the research at the Royal College of Nursing in London, the SPECAL® method (Contented Dementia approach) led to an increased sense of well-being, the use of fewer medications, staying home longer, moving with less distress when it was time to move to a facility, enjoying a longer plateau affect in symptoms, and care partners feeling less guilt-ridden. Current research is underway again at the Kings College in London to verify the Royal College ,of Nursing results. Regardless of when those results are published, we can never go wrong when we offer humble kindness to those with dementia so they truly sense the respect and dignity they deserve.