Managing the changes in your abilities

Knowing what to expect

"Dementia is a progressive disease. The symptoms or decline will not be predictable and could vary each day. The person living with dementia will create and present their own unique journey." - Keith (pictured above), from Ottawa, Ontario. Keith lives with young onset Alzheimer's disease.

Know your symptoms

In the early stage, your symptoms won't be as strong. Depending on what type of dementia you have, you may notice certain symptoms before others.

Below, learn about some of the common symptoms of dementia you may face, and get strategies for how you can manage each one.

As well as our own advice, we also include suggestions from people living with dementia – when it comes to knowing what you're going through, they're the experts!

The benefits of knowing what to expect

• No matter what stage of the disease you are experiencing, knowing what to expect as the disease progresses and learning what has helped others can greatly improve your quality of life.
• By understanding your symptoms, you can prepare ahead and ensure you can continue to participate in activities that are meaningful to you.
• There are many people today who have been diagnosed with dementia who are enjoying each day, as well as planning for their futures.

Changes in your memory

What you may experience

Increased forgetfulness may be one of the first symptoms you notice. In addition to your long-term memory, you may find it more difficult learning and retaining new information.

You may find that you don't remember a person's name at the time, but the name comes to you later. Or, while having a conversation, you may forget what you were talking about while in mid-sentence.

Strategies to manage these changes

• Use items that can help you remember, such as labels, notes, calendars, pill dispensers and alarms or timers.
• Post emergency numbers by your home phone.
• Write things down while you are talking with others.
• Follow routines and a consistent day-to-day schedule.

Suggestions from people living with dementia

• "Write things down in a notebook when you are in a conversation."
• "Use Post-it Notes."
• "Use loud, noisy timers to remind you that you have something on the stove."
• "Make a list of things you always wanted to do or improve on. Select one that challenges your memory. Try one, and if you feel it doesn’t work for you select another."
• "Try not to feel overwhelmed. Break things down into smaller steps and then make lists."

Changes in your communication

What you may experience

Conversations, both with one person and in groups, will become more challenging as your dementia progresses. You may find it harder to follow where the conversation is going.

You may find yourself reaching for a word but it's not there. Or you intend to say one word but a different word comes out.

Strategies to manage these changes

• Take your time and tell others that you need more time to express yourself.
• Keep groups to a manageable size, smaller groups are usually better.
• Tell people what helps you to be part of the conversation.
• Take someone with you to doctor's appointments to help talk about the information and make it clearer.

Suggestions from people living with dementia

• "Take your time and tell others to give you time."
• "Seek out people with the same likes and interests as yours."
• "I might not be able to follow conversation amongst a large group of people, especially if I’m not in my own home. In situations like this I might need some extra support. I do much better in a one-on-one conversation. It’s helpful for people to be aware of how I might be struggling and to connect with me differently."
• "If you lose your train of thought and can’t get it back, just let it go. When I’m with someone I like to say, 'That train of thought has left the station without me. Let's talk about something else.'"

Changes in your understanding of time and place

What you may experience

You may be having more problems with orientation, such as getting lost and not being able to follow directions. These problems may be more noticeable when you are taking long trips, such as a drive to visit family. You may also be showing up at to a scheduled appointment at the wrong time or place.

One person experiencing disorientation spoke of showing up at church an hour early. Another person became hesitant to take buses for fear of getting off at the wrong stop.

Strategies to manage these changes

• Ask friends and family for rides.
• Use taxis.
• Be realistic about your ability to drive (consult your doctor).

Suggestions from people living with dementia

• "Speak to family and friends about what you are experiencing."
• "I’ve learned through experience that when we travel, it’s best for us to stay at a smaller resort. It’s easier for me to find my way around and I don’t get lost and overwhelmed so easily."
• "I still want to be independent, but since I might get lost it’s good to have things in place to help keep me safe."

Changes in your visual and spatial perception

What you may experience

You may be looking straight at an object, but you cannot identify it. For example, with money, you may have difficulty telling one coin from another.

You also may have difficulty walking up and down stairs because you are misjudging the height of the stairs or the distance between them.

With these difficulties in perception, you may find it more and more difficult to concentrate, and your attention span might become shorter. Aspects of your surroundings, like noise and crowds, may start becoming more overwhelming and stressful.

Strategies to manage these changes

• Pick activities that you can manage.
• Take breaks or rests.
• Listen to talking books and CDs or watch DVDs.
• Avoid overstimulation: seeing, hearing or doing too much.

Suggestions from people living with dementia

• "If you no longer enjoy reading, try talking books, audiotapes and videotapes."
• "If church services are too crowded, find out which services have less people."
• "No matter where you are, if it’s too noisy or crowded, ask to go to a quiet corner or a different place so you can concentrate better."

Changes in your judgement and problem-solving abilities

What you may experience

Dementia can affect your judgement. For example, you may choose clothing that is not appropriate for the weather, like wearing just a t-shirt during the winter.

You may also find it more difficult to do tasks that challenge your problem-solving abilities. You may find yourself getting frustrated trying to do things you used to be able to do with no issue, like following a recipe, turning on the correct burner on the stove or balancing a cheque-book.

Eventually, you will have to consider whether it is safe for you to continue driving.

Strategies to manage these changes

• Recognize what you can do and the limits to this.
• Strengthen your cognitive reserve by challenging your brain.
• Focus on activities that you can manage and enjoy.
• Ask for help from family and friends, if appropriate. Ask for professional help, from lawyers, social workers, etc., if the decision needs it.

Suggestions from people living with dementia

• "The disease brings good days and bad days; meaning you must engage with it as it is at the time, which can be a challenge."
• "Eating well, exercising regularly, being socially active and challenging your brain (doing puzzles, learning something new, art classes, etc.) are very important things that you can do."
• "Stay organized. Take notes and have well-established daily activities."

Changes in your physical abilities

What you may experience

Dementia can affect your physical co-ordination. For instance, you may not be able to get your arm into a shirtsleeve.

You may find it harder to do physical activities like gardening, woodworking or making repairs. This can be especially noticeable if you're working at a job or pursuing a hobby that involves physical activity.

Strategies to manage these changes

• Be realistic about your abilities.
• Don't be afraid to ask for help with tasks you find challenging.
• If you are working at a job that is physically demanding, talk to someone about reducing your hours or finding different tasks or opportunities.
• Plan for a time when you will be unable to do these activities, such as driving.

Suggestions from people living with dementia

• "Do one thing at a time."
• "Don’t be shy about asking for help. And when someone offers, take them up on it!"
• "Don’t isolate yourself!"

Changes in your mood and behaviour

What you may experience

It's natural to feel anxious, irritable and moody at times as you cope with the changes in your skills and abilities. Some people may also find that their personality is changing. As one person described it, "You don't smile like you used to."

You may be undergoing mood changes and depression. Your sexual desire and need for intimacy may be affected as well. It's common to feel grief as you live through the changes brought on by dementia.

Strategies to manage these changes

• Do things that bring you pleasure and meaning. Keeping physically active, eating healthy foods and staying socially connected – all help you stave off negative feelings and to live well with dementia.
• Acknowledge and share your thoughts and feelings with someone you trust.
• Take things one day at a time. Try meditation or other stress-reduction techniques.
• See your doctor, if needed, and take medications as prescribed.
• Ask your family to watch for passiveness and withdrawal and to encourage you to participate in activities that you can do.

Suggestions from people living with dementia

• "Develop a support system that you can rely on. You will be able to share your feelings and count on others who can help you."
• "Keep busy. Find things to do that you enjoy."
• "Join a support group. You can commiserate with others. It reduces the isolation."
• "Change how you think about aging. Positive outlooks about aging are linked to faster healing, recovery and longer life. Sadness and dementia are not a usual part of aging. Don’t be afraid to seek help to take care of your mental health."

More useful links and resources

What to expect. Alzheimer Society of Canada. This print-friendly, downloadable brochure at each stage of Alzheimer's disease, the most common type of dementia.

Shared experiences: Suggestions for living well with Alzheimer’s disease. Alzheimer Society of Canada. This booklet, informed by the real experiences and advice of Canadians living with Alzheimer's disease, can help answer common questions and concerns about living with Alzheimer's.

Living with dementia: One day at a time. brainXchange, 2013. In this presentation, people living with dementia join the Alzheimer Society of Canada to address some of the challenges of living with dementia, offering lessons learned and dispelling common stereotypes and misinformation about dementia. This webinar is brought by brainXchange in partnership with the Alzheimer Society of Canada and the Canadian Consortium of Neurodegeneration in Aging (CCNA).

Memory problems? Alzheimer Society of B.C., 2000. Informed by early stage support groups in the North/Central Okanagan Region of British Columbia, this booklet presents real-life examples of memory problems experienced by people living with dementia, and handy tips to manage these problems.

By Us For Us© Guides. The Murray Alzheimer Research and Education Program (MAREP), 2007. These series of guides are free to download, and are designed to give people living with dementia and their care partners the necessary tools to enhance their well-being and manage daily challenges. The information and advice in these guides were created by people living with dementia and caregivers.

I have Alzheimer's disease - What can I do to help myself and improve my day-to-day life? FreeDem Films, 2013. This short, two-minute animation gives reasons to be hopeful about living with dementia, as well as things that you can do to improve the quality of your life. This video was created by Dr. Sabina Brennan of Trinity College Dublin and Trinity Brain Health. Permission to use this video was granted by Trinity Brain Health, which reserves all rights.

Talking Sense - Living with sensory changes and dementia. HammondCare Australia, 2018. This downloadable handbook is good starting point for people living with dementia looking for information on the sensory challenges they may experience.