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Living Well - Communication

  • 1) How to talk to family, friends and neighbours about the disease
  • 2) How to share needs and wants with others
  • 3) How to communicate effectively

1) How to talk to family, friends and neighbours about the disease

To make the process of sharing your diagnosis with others easier, try talking to the people you are the closest to first. If they know what you are going through, they will be able to support you in managing your symptoms. Though it is difficult to predict how others will respond to this news, it is a good idea to share this information to allow others and yourself time to adjust to the diagnosis(1).

Frequently Asked Questions

Is it a good idea to tell my family members and friends I have been diagnosed with a dementia?
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Although this news is difficult, sometimes people feel relieved to know the diagnosis has taken place. It might also help you to come to terms with the diagnosis. Talking about your diagnosis means you and your family will be able to use community and medical resources to support you in managing your dementia. Telling people (not just family, friends and neighbours, but community members) will also help to explain any changes in your behaviour and might help to keep you safe in your community (e.g., losing your way) and at home if you are having difficulty completing certain tasks (e.g., cooking).

Another benefit of speaking about dementia is it helps others to understand what it is like to live with the disease. This might encourage other people to learn more about dementia and what they can do to help(2).

Who should I tell if I have been diagnosed with Alzheimer's disease or a related dementia?
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Deciding who to tell, or if to tell anyone at all, can be a difficult decision and is a personal one. Some people may want everyone to know, while other people might want to tell only a few people. There are no right or wrong answers. It may be beneficial to tell the people who are closest to you first (your husband, wife, sons, daughters, grandchildren, best friend). Tell people who need to know and who you are most comfortable with. Sometimes it is helpful to speak with someone outside of your family; for example, a doctor or a counsellor. They will be able to listen to you and discuss your options with you. Being open to your closest friends, those you trust, can also be helpful(1).

What should I tell people if I have been diagnosed with a dementia?
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Being open and honest about what you are feeling is important for others to understand your experience. Let others know what support you need and how you want to be treated. If you need help, do not be afraid to ask for it. If you need some space, ask your family members to give you the space you want and need(1).

What will happen once I tell my family, friends, and neighbours about my diagnosis?
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Your family, friends and neighbours will have to adjust to the news of your diagnosis, and relationships and roles in your family might change. For example, a son or daughter might become more involved in a parent's daily schedule. It is a good idea to talk about these changes openly with family members, friends and neighbours who are supportive(1).

Will I be judged by others if I tell them about my diagnosis?
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You might be worried people will react differently towards you once they know you have a dementia, and some will. There is more public awareness about dementia now than there was in the past. Many people will be aware of Alzheimer's disease and other related dementias as a result of public education or personal experience. While there will be some people who are not knowledgeable about the disease, many people will be kind and helpful once they know your diagnosis(2).

There may be those who become over-protective or who do not understand what it is like to live with an illness causing dementia. Tell people who are being over-protective that you appreciate their concerns and care but that it does not help you to have others taking over tasks and decisions you are still able to be involved with. If you feel comfortable, share your experience with others so they can better understand what you are going through and how to better support you.

I have mixed feelings about revealing my diagnosis. Is this normal?
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It is okay to have mixed feelings about sharing your diagnosis with others. It can be helpful to let other people you trust know about your diagnosis, but it is important to also be comfortable sharing and considerate of your need for privacy. You may find it helpful to first focus on telling a few supportive people who are close to you about your diagnosis. They can help see you through the adjustment and initial stages of the diagnosis(2).

What if my family and friends tell other people about my diagnosis without my consent?
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If you do not want family and friends to speak about your diagnosis with others, you need to communicate that clearly with them.

But if they do, it is natural to feel a range of emotions. You may feel upset, or you may feel relieved. Remember your family will also need support in this process and may need to share the diagnosis with others so they can receive the support they need as well(2).

How will other people respond once I tell them the news?
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It is difficult to predict how others will respond once they hear about your diagnosis. Some people might shy away when they hear the word 'Alzheimer's' or 'dementia'(2). This happens because of fear and misunderstanding about dementia. Telling people is a good opportunity to share your feelings and experiences so others can have a better understanding create awareness, and continue to build strong relationships or meet new friends who are supportive of your situation.

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Sources:

The information above comes from the following source(s):

(1) Compiled with permission from Alzheimer Society of Canada. (n.d.). Shared experiences: Suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada.

(2) Compiled with permission from Alzheimer Australia. (2005). About you….Talking about the diagnosis. Canberra, Australia: Alzheimer Australia.

Helpful Links and Resources

Title of Resource What it Offers? Access to the Resource
Reach: A communication game for older adults Reach is a life-affirming, non-competitive, interactive game for older adults. Website: http://www.spiritocreative.com/#anch1

2) How to share needs and wants with others

Do not be afraid to share your wants and needs with others. It is important your family and friends know how the disease is affecting you and how you would like to manage it. Having these conversations is also important for planning for the future and what is best for you in your journey with dementia.

Frequently Asked Questions

How can I share my needs and wants with others?
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After receiving a diagnosis of dementia, you might be worried about losing your independence and becoming a burden to your family. Do not be afraid to talk to your family about your feelings. Let them know how the disease is affecting you. It is also good to let them know how their reactions and emotions affect you. Help them to see there are still things you can do for yourself and you want to be active in making decisions.

Stay in touch with your friends, family and neighbours. They will want to know how you are doing, even if you are having trouble communicating with them. Friends and neighbours often want to be helpful and they will not judge if you are forgetful sometimes or are having a bad day(1).

Are there specific issues I should discuss with my family?
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Conversations with your family members can be productive. It would be a good idea to share your needs and desires for the future with your family at this time. It is also important to talk about your legal and financial affairs and your wishes for your personal care so that it will be easier for your family to respect your wishes in the future. For more information on how you can do this, visit the Planning Ahead section of the website(1).

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Source:

The information above comes from the following source(s):

(1) Compiled with permission from Alzheimer Society of Canada. (n.d.). Shared experiences: Suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada.

3) How to communicate effectively

Although communication can become more difficult as your dementia progresses, there are strategies that you can use as the disease progresses. Do not be afraid to take your time or to tell people you are having some challenges communicating. If you are visiting your doctor, bring a list of questions and a family member who can support you. This is a good strategy through the entire journey(1).

Frequently Asked Questions

Finding the words to communicate is getting harder. What can I do?
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As your condition progresses, it is normal to experience difficulty finding the right words. It might also become more difficult to understand what people are saying to you. Below are some suggestions to make communicating easier.

  • Take your time when speaking.
  • Tell people you are having a problem with thinking, communicating and remembering.
  • If you do not understand something, ask the person to repeat it.
  • It is okay to ask over and over again.
  • If too many people in a room bother you, go to a quieter place.
  • If you lose a thought, do not worry. It might come back to you(2).

Some other communication strategies to consider include:

  • Keep a pen and paper handy to write down notes for reminders.
  • When in a group setting, write down one word that can bring the point back when you get an opportunity to speak.
  • Keep conversations simple and on the light side.
  • Take a few moments, relax, and think about what you want to say, or what people want you to do; the words often come when you feel less pressured.
  • Ask people to slow down.
  • Don't be afraid to tell others if you are having a bad day.
  • Let others know if you are comfortable with them helping you find words if you are having difficulty finishing a sentence(3).

As a person living with dementia, how can I maintain my focus and keep on track when in social or large group situations?
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Often in social or large group situations, communication becomes an issue. It is easy to lose your train of thought. Often, the conversation is too quick and you may find it difficult to keep up. You may find that you also need more time to process your thoughts and provide a response to questions(1). Here are some strategies to help:

  • If you don't think of anything to say, don't worry about it.
  • Listen to others conversation and participate as much as you are able.
  • Do your important communicating when you are rested.
  • Communicate in a quiet environment and minimize distractions.
  • Ask people to speak one person at a time.
  • Make notes before important conversations so you don't get sidetracked.
  • Communicate during meal times, while walking, or when working on projects, as these conversations tend to flow more easily.
  • Ask people to slow down and use shorter sentences.
  • Ask people to repeat a question in a different context, or have them provide an example.
  • Try to keep to one-on-one conversations or small groups.
  • If you don't understand a word someone has said, don't be afraid to ask them to clarify the meaning of the word for you(3).

As a family partner in care, how can I help when my partner is having problems communicating?
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For persons with dementia, communication becomes challenging because they may lose their words, they may draw a blank or have challenges finding the right words. Further they may have difficulties projecting their voice and even may stutter. When this happens, consider the following:

  • Ask the person with dementia how they would like you to help in these situations.
  • Pay attention to non-verbal cues and body language, such as eyes and hands and body language.
  • Give your partner reminders and prompts, if that is their preference.
  • Allow the person with dementia time to think, find the right word, answer questions, or write down their thoughts. Silence allows time for people with dementia to process what has been said and respond.
  • Remind the person what you were speaking about.
  • Ask if they want help with a word, but do not rush to finish their sentence(3).

When in social situation, or in large groups, some other strategies to consider are:

  • Keep conversations light and simple and talk to the person with dementia slowly and calmly.
  • Provide your family member with one suggestion at a time and provide fewer options/choices.
  • Be direct and open and don't beat around the bush.
  • Don't interrupt when your family member is speaking; they may lose their train of thought.
  • Do not move ahead in a conversation too quickly; your family member may not be able to keep up with the conversation.
  • Allow your family member time they need to process their thoughts and to communicate it to you(3).

As a family partner in care, what can I do to communicate more effectively with my partner with dementia?
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It is important as a family partner in care to truly listen to your family member who is living with dementia.

Some communication strategies to consider include:

  • Speak directly to the person living with dementia.
  • Really listen to what the person is saying and ask questions if you do not understand.
  • Do not talk to your partner as though you are talking to a child.
  • Offer gentle encouragement and "quiet help" when it is needed.
  • Acknowledge that your partner still has a lot to offer and can still contribute to their health and well-being.
  • Treat your partner in the same way you would want to be treated.
  • Problem solve as a family.
  • Write reminder notes and leave them where your family member will find them.
  • Make a checklist or help your partner use timers as reminders.
  • Give instructions one step at a time.
  • Don't be afraid to ask your partner for help(3).

How can I talk to my doctor or health care professional?
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You might have questions about dementia, such as symptoms, treatments and what to expect. It is a good idea to make a list of questions for your doctor to bring with you to your next visit. It might also be helpful to have a family member or friend come with you to your next visit to take notes. That way, if you forget something you can ask your family member later on. It is okay to ask that information be explained to you slowly and with diagrams.

Consider these other strategies when communicating with health care professionals:

  • Write down any questions or symptoms you have and prioritize these comments before your appointment, as you might not have time to discuss all your concerns.
  • Ask the doctor to write down any instructions for you, no matter how small, such as going to the lab or making a new appointment.
  • Take a trusted family member or friend with you to a doctor's appointment and ask them to make notes, ask questions, and support you.
  • Be totally open and honest with your doctor about everything that has changed and the things that are not normal for you. Make a list or keep a diary to help you remember.
  • Ask a trusted family member to make a list of changes that they have noticed in you and have them discuss this list with you BEFORE they show it to your doctors.
  • Book an extended appointment if needed (30 minutes rather than 15 minutes)(4).

How can I prepare for my doctor's appointment?
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Consider the following questions (Checklist for doctor visit PDF):

  • Did you bring all of your medications, in bottles, including over-the-counter medications like vitamins and herbal medications?
  • Did you write down questions or concerns before the appointment? Recognize that not all issues can be dealt with at one appointment.
  • Did your trusted family members or friends write down observations regarding changes (either good or bad) that they have observed in your behaviour since your last appointment? This will help the doctor to better gauge the progression of the disease (either positive or negative), and to follow any improvement after medication.
  • Did you arrange for a trusted family member or friend to accompany you to the appointment to provide information and be a second set of ears?
  • Did you keep a list of all doctor or therapy appointments, medical tests, and hospital admissions forms to bring with you to the appointment, to help keep track of important issues?(4)

What initial questions should I ask my doctor or care team?
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There are a number of questions you might want to ask your care team or doctor to help you manage your symptoms, including (Questions for health care team PDF):

  • Where can I get help in my community?
  • What kinds of changes should I expect over the next 6 months, or 12 months?
  • Would any of the current treatments for Alzheimer's disease be suitable for me?
  • What can I do to lessen the side effects of my medication?
  • Are there any medications or over the counter products that I should avoid?
  • Is there a possibility of becoming involved in an investigational drug trial?
  • When should I come back to the doctor?(5)

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Sources:

The information above comes from the following source(s):

(1) Compiled with permission from Murray Alzheimer Research and Education Program. (2007). Enhancing communication: A 'by us for us' guide. Waterloo, Canada: MAREP.

(2) List reprinted with permission from Alzheimer Society of Canada. (2003). Just for you. Toronto, Canada: Alzheimer Society of Canada.

(3) List reprinted with additions and permission from Murray Alzheimer Research and Education Program. (2007). Enhancing communication: A 'by us for us" guide. Waterloo, Canada: MAREP.

(4) List reprinted with permission from Murray Alzheimer Research and Education Program. (2007). Enhancing communication: A 'by us for us' guide. Waterloo, Canada: MAREP.

(5) List reprinted with additions and permission from Alzheimer Society of Canada. (n.d.). Shared experiences: Suggestions for those with Alzheimer disease. Toronto, Canada: Alzheimer Society of Canada.

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[This page updated on December 13, 2012]
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