Living with dementia

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Early stage

The early stage of Alzheimer's disease (also referred to as "mild Alzheimer's disease) refers to people of any age who have mild impairment. This differs from the term "early onset," which refers to people who have been diagnosed with Alzheimer's disease at a younger age than usual.

Some people aren’t aware that they have the disease during this stage, and they may not be diagnosed until they are past it.

Common symptoms in the early stage include forgetfulness, communication difficulties, and changes in mood and behaviour. People in this stage often need little help. They may understand how they are changing and be able to talk to others about their experience of living with the disease. They may also wish to help plan and direct their future care.

Suggestions for family members and caregivers

Learning about the experiences of people living with Alzheimer's disease can be helpful to those who support them. The following are some suggestions from people with the disease from Memory Problems?3, written by the Early Stage Support Groups in the North/Central Okanagan Region of the Alzheimer Society of B.C.:

  • Please don't correct me. I know better—the information just isn't available to me at that moment.
  • Remember, my feelings are intact and get hurt easily.
  • I usually know when the wrong word comes out and I'm as surprised as you are.
  • I need people to speak a little slower on the telephone.
  • Try to ignore off-hand remarks that I wouldn't have made in the past. If you focus on it, it won't prevent it from happening again. It just makes me feel worse.
  • I may say something that is real to me but may not be factual. I am not lying, even if the information is not correct. Don't argue; it won't solve anything.
  • If I put my clothes on the chair or the floor, it may be because I can't find them in the closet.
  • If you can tell that I am having trouble, please don't draw attention to it. Try to carefully help me through it so nobody else will be aware of the problem.
  • At a large gathering, please keep an eye on me because I can get lost easily! But please don't shadow my every move. Use gentle respect to guide me.
  • Sometimes I sense that you think I am faking these problems. What you don't see is my terrible confusion and my hurt knowing how you feel.
  • I don't mean to frustrate you. I know you get impatient and tired of telling me things three times in a row. Please be patient.
  • Ask me what I think or want. Don't assume that you know.
  • Believe I still love you, even if I am having trouble showing it.

More suggestions for the family—taking care of the caregiver

A diagnosis of dementia can be difficult for everyone involved. Family members will need to take care of themselves throughout the disease process. The following are some tips for self-care and planning for the future.

  • Avoid isolation and loneliness by keeping up with social activities and contacts with others as much as possible.
  • Take care of your own health.
  • Learn about the disease.
  • Join a caregiver support group to connect with others.
  • Keep a journal of what you are doing and how you are feeling.
  • Try to keep physically active.
  • Watch for signs of stress and how it can affect your health and ability to support the person with the disease.
  • Seek professional help if feelings of depression or anxiety are overwhelming.
  • Be flexible about routines and expectations.
  • Try to be positive and find some joy in everyday things.
  • Start planning for the future with the person you support.

What's next?

Because Alzheimer's disease is progressive, you will continue to need more information and support. You may want to take time in the early stage of the disease to think about what is important to you in the years ahead. The next sheet in this series is The Progression of Alzheimer's Disease—Middle Stage. Learning how the disease progresses and the changes it will bring can help you make plans for the future. However, only you can decide when is the right time to seek more information.

Help and support from the Alzheimer Society

Living with Alzheimer's disease at any stage can be very challenging. It is normal to feel a variety of emotions, including grief and loss, throughout all stages of the disease. It is important to acknowledge your feelings, care for yourself and seek the practical help and emotional support you need.

The Alzheimer Society in your community can provide educational resources to help you learn more about the disease, referrals to help you access the practical support you need, and one-on-one and group support to help you cope with the emotional impact of the disease. Contact your local Alzheimer Society.

References

1. By Us For Us© Guide: Memory Work Out (2006) was created for people with dementia by people with dementia. Available through the Murray Alzheimer Research and Education Program. http://www.marep.uwaterloo.ca/products/bufu.html
2. By Us For Us© Guide: Managing Triggers (2007) was created for people with dementia by people with dementia. Available through the Murray Alzheimer Research and Education Program. http://www.marep.uwaterloo.ca/products/bufu.html
3. Early Stage Support Groups in the North/Central Okanagan Region of the Alzheimer Society of B.C. (2000). Memory problems?

[This information provides guidance but is not intended to replace the advice of a health-care professional. Consult your health-care provider about changes in the person's condition, or if you have questions or concerns.]


Last Updated: 01/20/16
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