January-February 2024

Volume 15, Issue 1

Spring Caregiver College

March 21 to April 25

Thursdays; 2-5:00 pm

Visit www.memorycare.org/caregiver-information/caregiver-college

to learn more and to register.

The spring session begins soon! 

A series of six lectures will be provided for caregivers of persons with memory disorders. Sessions are designed to improve caregiver understanding of different aspects of dementia care.

See the Events and Programs section towards the end of this newsletter for more details as well as all the 2024 dates.

We are a society that appreciates organization.

We like to define exactly where we are at any given time, to know where we fall in the overall scheme of things.  Predictability and structure offer us a sense of control.

Take, for instance, the stages of dementia. Just exactly how many are there? The Alzheimer's Association says there are three. The Clinical Dementia Rating (CDR), on the other hand, recognizes five. The Global Deterioration Scale and FAST (Functional Assessment Screening Tool) use seven. This muddies the water - if my loved one is in Stage Two according to one scale, how does that relate to the other methods? Which system is the "official" one?



So the first question about determining what stage of dementia a person is in might be: Which assessment tool are you using?

Even after you’ve identified the model (or models) you’re using, ask yourself the next question: How are you using the information?  For instance, how is knowing that your loved one is in a particular stage of the disease helping you understand and manage the symptoms you’re dealing with?  What modifications to your caregiving practices can you implement to address this stage? Moreover, keep in mind that doctors typically see their patients for only a brief time, so they are seeing only a snapshot of that patient’s varying abilities.  Are they getting the whole picture? Does their assessment match up with what you’re seeing on a daily basis? 

Cognitive impairment isn’t a static condition - it’s a moving target. A person whose brain is changing will move through a myriad of symptoms and phases throughout their day, so you must take into account anything and everything that can affect him in a particular moment: Is he rested? Is he stressed? Is he hydrated? Does he have a cold or an infection or a hangnail? Is his arthritis flaring up?  Is he experiencing anger, happiness, boredom, grief?  Has someone said or done something that upset him? Is he physically comfortable? Is there too much noise or not enough stimulation around him?  The list goes on.

A person’s stage of dementia isn’t a place, it’s more of a map – but one that keeps changing. A stage can be a day, an hour, or a moment. With dementia, a stage is never stationary. You never know when the neurons are firing and when they’re not. A person can, and often will, visit different places on the map within the same day. So when we use stages to pigeon-hole our perception of a person with dementia, we often limit our possibilities. When we focus on what our loved ones have lost or can no longer do, we rob ourselves of discovering what still remains. 

The GEMS™ Progression of Dementia

SAPPHIRE. My brain is "true blue." I am aging normally and do not have dementia. It's often hard to find words, but 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 can remember plans and information but supports are helpful. I 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 behaviors, but my cognitive abilities remain the same.

DIAMOND (early-stage dementia). My brain is clear and sharp. I can be cutting and hard to deal with. I have many facets, so everyone sees me differently. This can cause conflict among my family or care team as it is hard to tell if I am just being stubborn or truly experiencing change in my abilities. I can socially chit-chat and have good cover skills. I want to keep habits and environments as they have always been, even when they are not working. I am often focused on finances or expenses, and will resist most change including new expectations, routines, or environments. I can become accusatory - thinking others are trying to trick or conspire against me. Short brief visits will not expose my true struggles. Even if you are around me all the time, you may not notice how much I am changing because instinctively you fill in the gaps for me.

EMERALD (moderate-stage dementia). I have little awareness of my changing abilities. You assume I can take care of myself, but my personal care is slipping, often resulting in poor nutrition or hygiene. I can chit-chat, but struggle with words, and understand only about ¾ of what you say to me. I know you are unhappy with me by your tone of voice or expression. If I am lost in my life, accept the moment I am in, listen and stay calm. Because I am easily frustrated, I often lose control of emotions and may blow up unexpectedly. When I feel afraid or confused I will want to "go home." I remember strong feelings, but won't remember details. My brain sometimes makes up information to fill in the blanks, which makes you think I am lying. If you argue, I may become resentful or suspicious of you. I can't be rational and will not want your help if you make me feel incompetent. 

AMBER. I am caught in time and focused on sensation. I know if I like you based on how you look, sound, move, smell, and respond to me. It may surprise you when I take, investigate, touch, smell, taste, or take apart items, but it is a function of my brain processing information and it soothes me. I need to do things over and over, and I like simple tasks. I will resist what I can't tolerate and I have limited safety awareness. I have no ability to stop myself and, for safety reasons, you need to respond to me immediately. I am typically incontinent, may not feel hunger or thirst, and cannot express my needs verbally. 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, and toileting may distress me. Please notice my cues and stop if I am resisting. Wait a few minutes, connect with me, and try a different approach.

RUBY (late-stage dementia). My brain is in late stage change. Transition is difficult for me. I like simple instruction and would rather you show me, one step at a time, instead of telling me what to do. My fine motor skills are very limited and I will need assistance with utensils, zipping, buttoning, or brushing teeth. I tend to hold, pinch, and manipulate items with my thumb rather than using my fingers. Because I can't control the muscles in my mouth, I may have difficulty swallowing. My vision has changed and I have no depth perception. I may misjudge distance, trip over large objects, or get stuck behind doors. I have gross motor reactions and will have either a desire to move or an intense fear of falling. Pulling or pushing me feels like you are trying to hurt me or make me fall. Using Hand-under-Hand assistance helps me feel safe and secure. I still have automatic verbal and rhythmic response. I enjoy music, your presence, and a willingness to be quiet with me.

PEARL. My brain is losing its ability to control my body and I am at the end of my journey. Like an oyster, I am hidden in a shell, but will have moments when I become alert and responsive. Use our time to be with me, not just care for me. And please don't talk about me as though I am not still here. I respond best to familiar voices and rhythmic gentle movements. I am ruled by reflexes and will startle easily. I appreciate it when you slowly and gradually shift me. I am comforted when you place one hand securely on my body while taking care of me with the other. I have trouble coordinating my swallowing and breathing, and am prone to infection because my brain doesn't organize a response. I may not be able to leave my body without permission from you. Your greatest gift to me is to let me know it is all right to go.

Click here for DailyCaring.com’s look at the stages of dementia.

All MemoryCaregivers Network Support Groups are currently being held online via Zoom on Tuesdays from 1:00-3:00pm. 



Network meetings are open to the public. Participants will receive a Zoom link via email the day before each meeting.



If you are not currently attending a MemoryCaregivers Network support group, please email network@memorycare.org to join the mailing list. If you do not use email but would like to talk with a support facilitator, please call Mary Donnelly at 828.230.4143.

For more information about the MemoryCaregivers Network, contact:

Mondays

10:00 - 11:00 am