I Have Dementia

What to expect

The early stage of Alzheimer’s disease (also referred to as “mild Alzheimer’s disease”) marks a beginning that will bring with it important changes for you and the people who care about you. Some people aren’t aware that they have the disease during this stage, and they may not be diagnosed until they are past it.

When you are diagnosed with early Alzheimer’s disease, you will likely be still able to keep doing much of what you have been able do and you will probably only need a bit of help during this stage. You may be able to understand how your abilities are changing. If this happens, you can tell others what it is like for you to live with the disease. You can help to plan and direct the care you will need in the future.

You may also be feeling overwhelmed and scared or nervous about the future. It is normal for both you and your family to have many mixed emotions. These can include feelings of grief and sadness. Many people are concerned about how the changes will affect them, how they will plan for the future and get the help and information they need. The following are suggestions for living life to the fullest. Please note that the term “early stage” refers to people of any age who have mild impairments as a result of Alzheimer’s disease. This is different from the term “early onset,” which refers to people who have been diagnosed with Alzheimer’s disease at a younger age than usual.

Common Symptoms     Helpful Strategies
Forgetfulness
  • Use labels, notes, calendars, alarms/timers, pill dispensers.
  • Post emergency numbers by the phone.
Difficulty learning new things and following conversations
  • Break tasks into small steps.
  • Realize your limits.
  • Keep group sizes to a manageable size, usually small.
  • Tell people what helps you to be part of the conversation.
  • Take breaks or rests.
  • Write things down while you are talking with others.
Difficulty concentrating or limited attention span
  • Pick activities that you can manage.
  • Do one thing at a time.
  • Listen to talking books and CDs or watch DVDs.
  • Take breaks or rests.
  • Follow routines.
  • Avoid overstimulation: seeing, hearing or doing too much.
Problems with orientation, getting lost, not being able to follow directions
  • Register with the Alzheimer Society MedicAlert® Safely Home®program.
  • Ask friends and family for rides.
  • Use taxis.
  • Be realistic about your ability to drive (consult your doctor).
Communication difficulties
  • Take your time and tell others that you need more time to express yourself.
  • Take someone with you to doctor’s appointments to help talk about the information and make it clearer.
Difficulty handling problems at work
  • Be realistic about your abilities.
  • Talk to your manager about reduced hours or different tasks or opportunities.
  • Plan for a time when you will not be able to work.
Mood changes, depression
  • Keep physically active.
  • Eat healthy foods.
  • Stay socially connected.
  • Acknowledge and share your thoughts and feelings with someone you trust.
  • Try meditation or other stress-reduction techniques.
  • See your doctor, if needed, and take medications as prescribed.
  • Do things that bring you pleasure and meaning.
  • Take one day at a time.
Passiveness, withdrawal
  • Ask your family to watch for this and encourage you to participate in activities that you can do.
Mild co-ordination problems
  • Use safety features like handrails and grab bars.
  • Remove items that may cause tripping hazards.
  • Add more light so you can see things more clearly, especially around stairs, hallways and entrances
Difficulty doing challenging cognitive (thinking) tasks
  • Realize what you can do and the limits to this.
  • Get help with tasks.
  • Focus on activities that you can manage and enjoy.
Difficulty making decisions
  • Ask for help from family and friends, if appropriate. Ask for professional help, from lawyers, social workers, etc., if the decision needs it.
Increased or decreased sexual desire
  • Read more about how to manage changes in sexual behaviour

Changes in your abilities

One way to cope with the changes is to focus on what you are still able to do, and to continue to participate in activities that are meaningful to you. There may come a time when you will have to accept help from family members and friends. If you let them know what is needed, they can assist in maintaining your independence.

Some changes you will experience

Memory loss You may find that you do not remember a person’s name at the time, but the name comes to you later. Or you start talking to someone and in mid-sentence you forget what you were talking about.

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

Difficulty performing tasks You may find yourself getting frustrated trying to do things you used to be able to do, like following a recipe, using woodworking or craft tools, turning on the correct burner on the stove, balancing a cheque-book.

Disorientation or confusion about time and place One person experiencing time disorientation speaks of showing up at church an hour early. Another person with place disorientation is hesitant to take buses for fear of getting off at the wrong stop.

Visual perception problems 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.

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

Poor or decreased judgment When judgment is affected in Alzheimer’s disease, you may choose clothing that is not appropriate for the weather. Or not understand why it may not be safe for you to continue driving.

Some suggestions for adjusting to changing abilities

We asked individuals living with Alzheimer’s disease for their advice on how to adjust to changing abilities. Here are some of their suggestions:

  • “Write things down in a notebook when you are in a conversation.”
  • “Use Post-it Notes.”
  • “Do one thing at a time.”
  • “Use loud, noisy timers to remind you that you have something on the stove.”
  • “Take your time and tell others to give you time.”
  • “Don’t be shy to ask for help.”
  • “Keep busy. Find things to do that you enjoy.”
  • “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.”
  • “Join a support group. You can commiserate with others. It reduces the isolation.”

Helpful Materials

Memory Loss: Challenges and Strategies Fact Sheet

All about me is a resource intended for people with dementia to provide health-care providers with information about themselves. The booklet can be filled by the person with dementia or with help from their caregiver to provide a snapshot of the person – information about them as an individual, such as needs, preferences, likes, dislikes and interests.

This resource will enhance the quality of care and support provided by community workers as they get to know the person or while she adjusts to a new home.

Download “All about me

allaboutme

À propos de moi

allaboutmefr