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Dementia is a set of symptoms caused by many different diseases and conditions. Dementia is caused when brain cells become damaged and eventually die. Thinking about your brain as a highway system, the damaged brain cells are the boxes on the road. This is what causes the changes to mood, emotions and ability to do everyday tasks. How and where the boxes fall on the highway varies between people.
The disease progression typically follows certain stages which will bring about changes in the person's and family's lives. Because the disease affects everyone differently, the symptoms, the order in which they appear, and the duration of each stage vary from person to person.
In most cases, the disease progresses slowly, and the symptoms of each stage may overlap, often making the move from one stage to another quite subtle. The duration of the disease is usually seven to ten years but may be much longer in some people.
The stages of the disease are commonly referred to as “early,” “middle,” and “late.” “End-of-life” is described as when the person nears death and comfort measures become the focus.
The infographics below provide additional information to help you better understand the changes you might see at each stage, important strategies for care partners, and " heads-up” signals to watch for over time.
Download and print these handouts as easy references.
What to Expect as the Person’s Dementia Progresses
Dementia is an overall term for a set of symptoms that is caused by disorders affecting the brain.
Symptoms may include:
These dementia symptoms are caused when brain cells become damaged and eventually die. Dementia can be frightening, which makes it challenging to find the right help.
But there is help.
Learning how to live well with dementia and manage the symptoms can help you gain control and confidence along your journey. The Alzheimer Society is here to provide you with the support and information to do just that.
Dementia is not a normal part of aging. Symptoms include difficulty remembering things, making decisions, and performing everyday activities. These changes can affect how a person feels and acts. There is currently no way to stop the disease, but research is improving how we provide care and will continue searching for a cure.
While dementia may be the title we give to the disease, there are many types of dementia, as illustrated below. Dementia is an umbrella term. Mixed dementia is diagnosed when the person living with dementia experiences more than one type concurrently. There are also rare types of dementia that are caused by other diseases and conditions.
Let’s now explore the changing brain function of a person living with dementia. The highway system analogy used in the video below illustrates brain function.
The video is 10:29 minutes in length.
Download these PDFs of the Video Transcript if you would like to print a copy and save as a reference.
After you watch the video, take a few minutes to reflect on the following questions. Feel free to make some notes.
Make a note of them and bring them up during your next conversation with your healthcare provider. Alternatively, you can contact your local Alzheimer Society via our toll-free number, 1-866-950-5465, or by email: info@alzheimer.ab.ca.
This session includes the following parts:
Part 1: What is Dementia?
Part 2: The Stages of Dementia: What Happens?
Part 3: Exploring Dementia and Memory Loss
Part 4: Getting a Diagnosis
Part 5: Associated Illnesses
Part 6: Helpful Tips to Address Symptoms in the Early Stage
Part 7: Questions for Reflection
Summary
Work through the various parts in the session at your leisure. Move from one part to another at your own pace and in the order that makes sense to you, based on your own needs and interests.
At any time, you may scroll to the Search bar and type a specific question or topic to learn more.
Click on the icon below to download and print a brief self-reflection activity sheet. The purpose of this tool is to help you think about what you have learned and to provide a space for you to document some of your thoughts and ideas for moving forward.
Whatever your personal goal might be, an action plan can help you get to where you need to go.
Completing a personal action plan can greatly enhance your motivation and keep you focused on what you can confidently achieve. It's important that you succeed!
Take some time to think about what you can do to continue to live a full life and best cope with the changes you are experiencing.
Download and print a copy of the activity sheet My Personal Action Plan below. Reflect on and answer the statements in both columns. Then circle the number between 0 and 10 that represents your confidence level.
If you rate your confidence below a 7, you might want to look at the barriers and consider reworking your action plan so that it's something you are confident that you can accomplish.
Whatever your personal goal might be, an action plan can help you get to where you need to go.
"Dementia is only a small part of life; it is an illness. I live as best I can while I can and not dwell on this dementia thing. I try to set it aside. What I would like to say to people being diagnosed, it is not the end of life. It is a new life in the slow lane of dementia; you’ll change, but it is not all bad. "
The quote above is from - de Neef, Ash. "Life in the Slow Lane of Dementia". Aged Care Enrichment Podcast • SilVR Adventures Pty Lt. September, 2020.
"As we become more emotional and less cognitive, it’s the way you talk to us, not what you say, that we will remember. We know the feeling, but don’t know the plot. Your smile, your laugh and your touch are what we will connect with. Empathy heals. Just love us as we are. We are still here, in emotion and spirit, if only you could find us. "
The quote above is from - Bryden, Christine. "Dancing with Dementia". Jessica Kingsley Publishers. London. 2005.
After reading those quotes, take a few minutes to reflect on the following questions. Feel free to make some notes.
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Dancing with Dementia by Christine Bryden
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Here, we introduce two people who share their personal experiences with dementia in the early stage of the disease.
They talk about their feelings after diagnosis, adjusting to changes in their life and looking ahead to the future. They also share some important advice for finding support and continuing to live a full and meaningful life.
Roger Marple was a tireless advocate for the rights of people living with dementia. Despite his own diagnosis, Roger chose to live life to the fullest and, with the support of family and friends, he proved it was possible. He was an outspoken champion to ending the stigma against people living with dementia and was a compassionate and committed spokesperson for those who often felt neglected and unheard.
He was a sought-after speaker and participated on advisory groups and research committees to ensure the voices of people with lived experience were included in planning and decision making. He was also instrumental in the development of the Canadian Charter of Rights for People Living with Dementia. Roger received numerous accolades and awards for his work.
At the time of his death, Roger was a member of the Board of Directors of the Alzheimer Society of Alberta and Northwest Territories. To honour him, and continue his legacy, the Roger Marple Volunteer Award was established. The award recognizes a volunteer who exemplifies the qualities and efforts Roger embodied in his daily life and work on behalf of the Alzheimer Society and those living with dementia.
“As a person living with dementia, here is a promise I will make to all of you……. I promise to recognize what hope looks like for you, living your life to the fullest with the time you have left so that you can live a good quality of life. And most of all, I will respect who you are.”
Roger Marple
1957 - 2022
Watch this video and meet Roger. He talks about his experiences and reaction to receiving his diagnosis. He acknowledges the role the Alzheimer Society played in making him realize there is a life after diagnosis and the encouragement to live in the here and now.
"My hopes and dreams in life haven’t changed and I make it a point to do meaningful things in my life just as anyone else would. If anyone reading this who has been diagnosed with a form of dementia or has a loved one who lives with this disease, I feel this is the first thing you need to know. We all live with a terminal condition. It’s called life. The same thing applies to people with dementia."
- Roger Marple, from Medicine Hat, Alberta.
People living with dementia can struggle with everyday tasks. In these videos, Chris talks about how her frontotemporal dementia affects doing tasks such as banking, eating in a restaurant or shopping at a grocery store.
After you listen to the conversations, take a few minutes to reflect on the following questions. Feel free to make some notes.
The Waiting Room Revolution Podcast, Season 1
A By Us for Us Guide: Living and Transforming with Loss and Grief
Myths and Realities of Dementia
Living Safely and Independently
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This session includes the following parts:
Part 1: The Experience of Dementia: Personal Stories
Part 2: Dementia Diagnosis from an Insider's Perspective
Part 3: Take Action for Healthier Living
Part 4: My Personal Action Plan
Part 5: Questions for Reflection
Part 6: Questions Others Have Asked
Summary
Work through the various parts in the session at your leisure. Move from one part to another at your own pace and in the order that makes sense to you, based on your own needs and interests.
At any time, you may scroll to the Search bar and type a specific question or topic to learn more.
Dementia gradually reduces a person's ability to communicate. Communication with a person with dementia requires patience, understanding and good listening skills.
A first step toward effective communication is to understand how dementia affects the communication centres of the brain.
It may be helpful to imagine the brain of a person without dementia as a solid, stable highway system, just like the one illustrated in the video below.
