Communicating the diagnosis
[From the Shared Experiences: Suggestions for those with Alzheimer Disease booklet and audiotape by the Alzheimer Society of Canada. To get a copy, contact your local Alzheimer Society.]
People react differently to the idea of telling others that they are living with Alzheimer's disease or other dementia. Some people may need some time to get used to the information before sharing it. Others may want to talk about it right away. Some people may want everyone to know. Some may want to tell only a few people. Others may not be sure about whether or not they want people to know.
By speaking out about what they are living with, people with dementia can help others understand what it is like to live with it. In turn, being open may encourage others to learn more about dementia and what they can do to help.
Telling family and friends
The people who are closest to you are usually the people to tell first. You would likely want them to be aware of this change in your life, just as you would with any major illness. Tell the people with whom you are most comfortable. Tell the people who need to know.
You only need to tell people as much as you are comfortable with. Be honest about what you feel. Let them know what you need and how you want to be treated. If you need help, ask for it. If you need family members to leave you alone, to give you some space, let them know that. Speak up. Encourage people to learn more about the disease.
Just as you are coping with the physical, emotional and behavioural changes brought on by your Alzheimer symptoms, your family members also have to adjust. You may fear losing your independence and worry about becoming a burden to your family.
Talk to family members. Tell them how the disease affects you. Help them see that there are things you can do for yourself and that you can still make many of your own decisions. Discuss what you can do to help and support each other.
Friends need to know how you are doing. Talk to them. Stay in touch. Friends and neighbours often want to help in any way they can.
Talking to other people with dementia
Talking to other people with dementia will put you in touch with the only people who know first-hand what you are experiencing.
Contact your local Alzheimer Society to see if there is an Alzheimer's disease support group in your area. If not, you may be interested in helping the Society start one.
Talking to other people with the disease:
- Puts you in touch with people who know first-hand what you are experiencing
- Provides a unique opportunity to talk with people who are sympathetic and understanding
- Enables you to talk about your feelings
- Ensures that everything stays within the group
Another option may be to have the Society put you in touch with someone who can help you with one-on-one support.
Last Updated: 01/28/13