Care partners of persons with dementia are often eager to know what stage their loved one is currently in and how best to work with and relate to the person in these phases. I will give you some general tips here, but first let me say two things for a larger context:
1. Remember that people with dementia have strengths, no matter where they are at. Please think about those specific strengths, as this is what our care and interaction is built upon. Everyone has a sense of humor. With some individuals, we may need to work harder than with others to tease that out. People with dementia can be very creative and expressive. Their connection to and memory of music is an impressive strength and often a source of joy for them. Persons living with dementia are tremendously resilient and courageous. They still have interests and passions, even if they may be unable to initiate anything about that interest or articulate what their passion is all about. Another strength (one that often evades those of us who do NOT have dementia) is the ability of persons with dementia to be present in the moment, right here and right now. They still possess insight and wisdom related to their personal lifetime of experience. They are sensitive to moods and emotions and non-verbal communication. They will remember if you are someone who has been kind to them over and over again. They enjoy simple pleasures. Persons living with dementia retain the need and the ability to give and receive love, to feel close with others, and to touch those they feel most connected to. (With some types of dementia, this ability may be harder to recognize, but I urge you to not give up on making a connection with the person’s heart, personality and spirit.) That spirit, deep inside is intact. If we keep all of this in mind as we work to manage the needs and to read the communication of the person, we as care partners will do better. Our loved one will fare better too, across the dementia continuum.
2. While dementia is progressive, people with dementia are (obviously) people! Like the rest of humanity, they have changing moods, good days and bad days, high energy and low energy, and strong emotions from time to time. A person might be in the early stages but having a very frustrating experience that for a few minutes, hours or most of a day causes intense confusion and upset. At this time the person may seem like they are acting more like someone in the middle stages, or even a later stage. So please take the generalizations that follow with a gallon of a salt. Use them for insight and guidance as they are helpful, but realize there can be tremendous variation and fluctuation within the progression of dementia.
I prefer to think about dementia in 3 phases, early, middle and later. Others talk of 5 or 7 phases, but it makes sense to me to keep this less complicated.
Early dementia correlates with the loss of adult learning. In other words, the last skills we learned as adults will be the first things that become challenging if we have dementia. Trouble with thinking and making decisions may result in problems with driving safely, managing money, keeping things organized, or remembering appointments. This may well mean the person will have difficulty managing their day without some assistance. This can be an anguished phase for people, as they are well aware that something is not right with their brain. They may not want to admit it and may get good at hiding it. People with dementia in this phase will do well if they are treated with patience, kindness and understanding. They will very much need honest, caring conversations. They need to be listened to and given choices. They need support as well as compensation strategies. They need to know that they can still contribute to the lives of others. This is, sadly, NOT always the message that people with dementia receive at diagnosis. However, there are many helpful resources out there for persons who have just been diagnosed. Did you know that there are people in early stage dementia who have been doing extremely well, for many years? You will find affirmation of this and a wealth of helpful information on this website: www.daa.now The Caring Conversations Toolkit available on this site is a wonderful resource for communication with a loved one who has recently been diagnosed.
The middle phase of dementia corresponds to the loss of adolescent learning. This can be a turbulent time emotionally, not unlike the teenage years. People in this stage at some point usually forget that they are forgetting, so there can be plenty of frustration directed at the outside world or at other people as a result of the confusion the person experiences. People in this phase often still have considerable physical energy and loads of passion. If we provide structure as well as engagement opportunities for the individual’s energy, interests, and sense of purpose, they will do well.
In the later stages of dementia, the person is experiencing the loss of childhood learning. They may not remember how things work exactly. They may not recognize or misuse objects, and there can be a lot of stubbornness and frustration erupting as a result. We need to slow down when we interact with these folks, and help them adapt. Sensory stimulation will become more important, and simple pleasures will remain comforting. Sitting outside on a lovely day and feeling the breeze, holding a real live baby or interacting with a young child, experiencing a hand massage will be energizing and enjoyable. There may not be as much talking, but there can still be communication and connection. We can hold a hand, read a favorite poem, and retell those storied memories that the person used to share repeatedly.
Whatever the phase, let the person know what they mean to you. Give them compliments. Tell them what you admire most about them. Remind them of what they have given you. Explore your way to playful interaction, laughing together, and having fun. May you find many moments of peace together, where dementia simply doesn’t matter. Always remember, the person is doing the best they can, the absolute best.
Thanks to Megan Carnarius, author of A Deeper Perspective on Alzheimer’s and Other Dementias, and to Claudia J. Strauss, author of Talking with Alzheimer’s, for many of the ideas reflected here. – Marysue Moses, Ebenezer Dimensions Program Coordinator
It is important for all seniors to have the opportunity for both meaningful life and meaningful engagement.
Having these things help older adults feel a sense of accomplishment each day, feel connected to others which help them to feel at home, loved and well cared for.
Purpose and Meaning
Every person will experience purpose and meaning differently. Experiences stimulate us intellectually, emotionally, spiritually, physically and socially.
Purpose and meaning come out of WHAT we do. The things that give us purpose and meaning in life can change as we age and have different experiences. Sports, hobbies, raising a family, and a career may be very important in the earlier years of adulthood. Church activities, volunteering, and participation in social clubs may be more important during the middle or later years of adulthood.
Meaningful things can be big, like attending a wedding or holding your grandchild for the first time. They can also be small, like drinking a cup of coffee.
Discovering What Provides Purpose and Meaning: One Person at a Time
It takes effort and teamwork to discover the activities and interests that provides purpose and meaning for each person. The discovery process is like a working on a puzzle. You get small clues that are put together to form a full picture over time. (ASK ABOUT OUR MY WAY FORM)
You'll Experience Lots of Trial and Error (Don't get discouraged)
Learning what people find interesting and meaningful and how they like to do it takes time and lots of trial and error. Expect to try things that won't work or be of interest. That's how you learn.
Meaningful Engagement Does Not Happen Automatically
Meaningful engagement has to be nurtured, planned and be thoughtful. Make sure that you have patience and time to share with the individual needing meaningful engagement.
Observe the Person's Reactions
For seniors who may have lost the ability to communicate through words, such as those living with advanced dementia, you can watch how they react and respond to activities. By carefully watching their responses and behavior during routine activities, you can get a good picture of their quality of engagement. You can also discover different things that will help you improve their daily life.
Examples of non-verbal communication that indicate well-being and ill-being include:
There is still life, laughter and fun left for our friends and loved ones with cognitive or physical limitations. Let's help them experience it!!
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