Brain Change Model
The GEMS® model recognizes the dynamic nature of the human brain and its abilities. Unlike other cognitive models, it acknowledges that everyone’s abilities can change in a moment. Modifying environments, situations, interactions, and expectations will create either supportive positive opportunities or result in distress and a sense of failure. Just as gemstones need different settings and care to show their best characteristics, so do people. Rather than focusing on a person’s loss when there is brain change, seeing individuals as precious, unique, and capable encourages a care partnership and is the core of this model. Providing supportive settings for everyone, including care providers, allows them to use what they have to be their best. The GEMS® advocate that everyone living with brain change when given the opportunity will shine.
- Teepa Snow and Positive Approach® to Care Team
My brain is healthy - true blue. If I am aging normally or distressed, it may be hard for me to find words. I can describe what I am thinking so you understand. I may talk to myself because I am giving myself cues and prompts. I can learn new things and change habits, but it takes time and effort. Honoring my choices and preferences, when possible, is important. I need more time to make decisions. Give me the details and let me think about it before you need an answer. I am able to remember plans and information but supports are helpful. I may like specific prompts such as notes, calendars, and reminder calls. Health changes in vision, hearing, balance, coordination, depression, anxiety, pain, or medication may impact my behavior, but my cognitive abilities remain the same.
My overall cognition is clear and sharp. When happy and supported, I am capable and shine in my abilities. When distressed, I can be cutting and rigid and may see help as a threat. I have trouble seeing other points of view and may become less aware of boundaries or more possessive about my relationships, personal space, and belongings. I have many facets so people see me differently depending on the situation. This can cause conflict among my family, friends, or care team as it’s hard to tell if I am choosing my behavior or truly have limits in my ability. I can socially engage and have good cover skills. People will vary in their awareness of what is happening to me. I want to keep habits and environments as they have always been, even if they are problematic for me or others. I am often focused on the past, personal values, or finances. I will need help to make changes in my life; it’s hard for me. I can be in a Diamond state for reasons other than dementia.
Needs to know what comes next: seeks guidance and assistance to fill the day
II am flawed; it is part of being a natural emerald. I tend to be focused on what I want or need in this moment and may not be aware of my own safety or changing abilities. I can chat socially, but I typically miss one out of every four words and cannot accurately follow the meaning of longer conversations. I won’t remember the details of our time together, but I will remember how your body language and tone of voice made me feel. I may hide or misplace things and believe someone has taken them. My brain will make up information to fill in the blanks, which makes you think I am lying. If you try to correct me or argue, I may become resentful or suspicious of you. I am not always rational, but I don’t want to be made to feel incompetent. My brain plays tricks on me, taking me to different times and places in my life. When I am struggling, I may tell you, “I want to go home.” To provide the help and assistance I need, you must go with my flow, use a positive, partnered approach, and modify my environment.
Like a particle trapped in an amber, I am caught in a moment of time. It may surprise you to see how I take in the world around me. I may not know you or see you as a whole person. I react to you based on how you look, sound, move, smell, and respond to me. I like to do simple tasks over and over and may need to repeatedly move and touch, smell, taste, take or tear items apart. While it may exhaust or frustrate you, it soothes me. I don’t recognize danger; you will have to safeguard my environment. I’m intolerant to discomfort because my mouth, hands, feet, and genitalia are highly sensitive due to changes in my nervous system. Therefore, activities like eating, taking medication, mouth care, bathing, dressing, and toileting may distress me. Please notice my reaction and stop if I am resisting. I can’t help myself and one or both of us may get hurt emotionally and/or physically. If this happens, wait a few minutes, connect with me, and try a different approach; possibly substituting one area of focus for another.
As the deep red of a ruby masks detail, my obvious losses make my remaining abilities harder to notice. Although my fine motor skills have become very limited, remember that I am able to move and do simple things with my hands. You will need to anticipate, identify, and respond to all of my needs, even though I may not be aware of them. Plan to create a supportive environment, help with the details of care, and structure my day. Just as a crossing guard directs traffic, you will need to guide my movements and transitions. I can rarely stop or start on my own and switching gears is a challenge. Move with me first, then use your body to show me what you want me to do next, going one step at a time. Hand-under-Hand™ assistance helps me to feel safe and secure and to know what to do. Danger is part of my life, due to losses in visual skills, chewing abilities, balance, and coordination. You can reduce the risks to me, but not eliminate them. I can still have moments of joy when you are able to provide what gives me pleasure.
While hidden like a pearl in an oyster shell, I will still have moments when I become alert and responsive. I am near the end of my life. Moments of connection create a sense of wholeness and value between us. Use our time together not just to provide care, but to comfort and connect with me. To help me complete life well, it’s important to honor my personhood when making medical or care decisions; please don’t talk about me as though I am not still here. I respond best to familiar voices and gentle rhythmic movements. I am ruled by reflexes and will startle easily. My brain is losing its ability to control and heal my body. Be prepared to see me having difficulty breathing or swallowing. My body may no longer desire food and drink as I prepare to leave this life. I may not be able to stop living without permission from you. Your greatest gift at this time in my life is to let me know that it is okay to go.