Living with dementia

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Early Stage

For people with dementia1

At the early stage of the disease, it is very important for you to communicate while you find it relatively easy to do so. This is a good time to start talking about your wishes and making them known. Be open with your caregiver, your family members, your friends and also health professionals.

Learn about the disease and be open about it

Learn as much as you can about dementia, including its effects on your ability to express yourself and understand others. Tell your family how you want to be involved in decision-making. Be open with people about your diagnosis and share your feelings and experiences as much as you are able to. Let family and friends know that you may need more time to express yourself and if you are tired or have difficulty communicating, encourage them to speak with you when you are more rested.

Think about non-verbal communication

Think about using notes for reminders. Use visual aids or non-verbal cues, draw or point at pictures, use your eyes, gestures and body-language to enhance communication. Use hand signals and body language to communicate.

Laughter is a good way to let people know that you are at ease and it will make them more open to what you are sharing.

Maintain relationships

We all need our friends and relatives to support us. Many of these people will empathize with your situation. Remaining loving, positive and dedicated will help you feel safe, secure and valued. Those who are close to you are there to support you, so do not hesitate to open up to them and ask them for help when you need it. And if friends or relatives don't phone or visit you, call them!

Stay socially active

Sometimes, as the disease progresses and communication skills deteriorate, getting out and meeting people — or even having visitors — can be difficult. Try not to feel intimidated or embarrassed if you cannot find the right word. Take time to relax and think about what you want to say. One-on-one discussions are usually easier than keeping track of conversations in large groups.

When in social situations, ask people to slow down, use short sentences or to repeat what they said. It can also be useful to tell people how you would like to be helped. Some people with dementia say they like to have time to find the word or answer themselves, while others appreciate if someone fills in the words for them.

Try not to isolate yourself. Contact your local Alzheimer Society for support, information and strategies to remain active. You may also want to join a support group to talk with people who can understand and relate to what you are going through. This will allow you to share your feelings, challenges and coping strategies with others.

Communicate with your doctor

Try to book extended appointments with your doctor, when possible, so you don't feel rushed. This gives you enough time to talk about your challenges and gives your doctor the time to respond. You can prepare for your doctor's visit by writing down symptoms and any questions you may want to ask. You may want to focus particularly on the things that have changed since your last doctor's visit.

Example: You may notice that you find it harder to keep track of your medications than you used to, or your wife may be telling you that you now get lost easily when driving.

 

To feel at ease, you may want to ask a friend or family member to accompany you, to help communicate and clarify information. Be honest and open with your doctor about everything that has changed. Be as specific as possible. Ask the doctor to explain things to you in a way you can understand and to write down every instruction for you, no matter how small it is. Ask any questions you want answered. Ask the doctor to talk to you directly. If you are unhappy with the way the doctor treats you, let him or her know how you feel. Finally, when it comes to your health and your feelings, you are the expert!

It is important to find your own unique ways to speak with others without anxiety.

Different things help different people, so find what strategies work best for you and then tell others about them.

Plan ahead

Being informed about the disease and knowing what lies ahead can help you feel more prepared. As the disease progresses, you will not always be able to communicate your thoughts and wishes. Be sure that someone trustworthy has the legal authority to make financial and health-care decisions for you when the time comes. Talking about this with trusted friends and family members when you are still able to can give you a sense of control over your future and put your family more at ease. Advice from lawyers and/or financial consultants can also be helpful. You can tell them how you want to be involved in decision-making.

For caregivers

As dementia progresses, communication can become more and more challenging. You may find that the person with dementia has good days and bad days; this can depend on the quality of sleep, stress level and other medical conditions.

Respectful, sensitive, ongoing communication remains critical, no matter what stage of dementia he is at and how confused he may appear.

Help the person comprehend

The person with dementia may have trouble focusing his attention. Before you speak to him, make sure that he is listening. You can do this by a touch on the arm or by saying his name. Wait for him to look at you before you begin to speak. Sit down at the same level as him and at a respectful distance. Eliminate distracting background noise to ensure that he can focus on what you’re saying. If he doesn’t understand your words, find other ways to convey your meaning, by pointing to an object or picture, writing the words, or acting them out. It also helps to give clues about the topic. So, for example, if you’re talking about groceries, you could look at a grocery flyer while you talk and point to items you mention.

Help the person respond

Remember that it will be harder for the person to begin conversations. You will often need to be the one to start talking first. Keep sentences short and simple so that she can stay involved in the conversation. Avoid speaking in a harsh tone of voice, as this may be upsetting and may distract from what you’re trying to say. If you’re asking questions, ask one at a time and allow the person time to reply before going on to another question. Form your questions so that they can be answered simply. If the person is struggling to respond, ask questions where she can answer with yes or no (Do you want a cup of tea?) or with a choice (Do you want tea or coffee?).

Learn about the disease

Learn as much as you can about the disease to give yourself the best possible care and support. Learning about the disease, its progression and how it affects people will help you have realistic expectations of the person's ability to communicate throughout the various stages of the disease. As the disease progresses and abilities are lost, you can learn to interpret the person's messages by paying attention to both verbal and non-verbal cues. This means putting together the various cues to help you interpret what the person is trying to tell you about how she thinks and feels.

Example: Nadia is driving her mother to a family celebration. The car radio is on, playing country music. Suddenly, Nadia's mother starts banging her fist on the dashboard and speaking in an agitated voice. Nadia does not understand what her mother is saying, as her speech is garbled and does not make sense. Nadia takes a moment to try to figure out what her mother is trying to tell her. Why is she suddenly so upset? Nadia remembers that her mother has always disliked country music. Nadia reaches over, changes the channel to music her mother has always enjoyed and says, "That's better. I don't like country music either." Her mother sits back and seems to relax, no longer banging her fist or calling out. Nadia rests her hand on her mother's knee and pats her reassuringly as she smiles.

 

Communication skills are not learned overnight and require patience and practice.

Believe communication is still possible and there is always a meaning

Every person, regardless of abilities, maintains a core of self that can be reached. Communication remains possible at all stages of dementia. What a person says or does and how a person behaves has meaning; however, the disease affects the person’s ability to communicate in a way that we can always understand. Never lose sight of the person. No matter how the disease affects the individual, it is important to treat her with dignity and respect.

If you find it difficult to understand the person, call upon his past experience and what you know about him.

Focus on the person's abilities and skills

Although dementia affects certain abilities, the person's emotions and feelings will remain, as will the need for companionship, purpose and belonging. Focusing on the person's abilities and skills will go a long way in adding to her quality of life and will help her maintain a sense of self. If her speech has become hard to understand, use what you know about her, and what you feel she might be trying to say, to help you interpret. Consider helping her find alternate ways of expression through art, music or gardening to maintain and enhance communication.

Example: Ben is now living in a care facility. Every Friday afternoon, a volunteer brings her gentle German Shepherd dog in to visit with the residents. The dog quietly sits and lets everyone pet him. Many residents talk about their memories of caring for their own pets. When Ben sees the dog, he becomes very agitated, pushing himself frantically down the hall in his wheelchair. The staff know that Ben lived through World War II in Europe but do not know the details of his experience. They learn from his son that he spent one year in a concentration camp, guarded by German Shepherd dogs. 

 

Reassure and being positive

As a caregiver, it is important to encourage the person in his attempts to express himself when he has trouble communicating. Instead of criticizing and correcting him, ignore his failures and remember to be supportive, positive and encouraging. New activities can be stimulating yet confusing for a person with dementia, so use familiar things to create a sense of comfort and reassurance. Laughter and humour are positive ways to help you get through difficult times.

Example: Maria raised a family of five children. Each evening, as it begins to get dark, she becomes restless, searching through drawers and cupboards, becoming more and more anxious. Her family and caregivers remember that Maria always took pride in providing a multi-course dinner each evening for her family. When Maria is given access to a basket with placemats, serviettes and cutlery, her caregivers support her in setting a table for seven people. Maria hums while she works, enjoying the family activity.
Meet the person where she is and accepting her new reality 

 

With the progression of the disease, a person's perception of reality can become confused. However it is her reality. Try to accept her reality and meet her where she is. Avoid contradicting her or trying to convince her that what she believes is untrue or inaccurate. Trying to bring her to your reality or disagreeing with her will cause frustration and make things worse. If she says something you know isn't true, try to find creative ways around the situation rather than reacting negatively.

Example: Nazir repeats the word "Mama" over and over. His family do not remind him that his mother died fifteen years ago. Instead they talk with Nazir about his mother and have photos of him and his mother on hand to look at together.

 

Remember to CONNECT not to CORRECT

Resources:

1. Source: By Us For Us guide, “Enhancing communication,” an inspirational guide for people like us with early-stage memory loss. Murray Alzheimer Research and Education Program, University of Waterloo. This guide has been developed by persons who know better than any of us about the lived experience of dementia, their capabilities and needs, and what works best for them.


Last Updated: 12/16/11
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