Living with dementia

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The early stage - 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

Helpful suggestions for the early stage


1. Consider sharing your diagnosis with others who can help

You may feel that you want to keep your diagnosis confidential, to yourself. This is a personal decision and should be made after you have looked at the pros and cons of telling people or keeping quiet. It may be useful to talk about this with someone who knows your diagnosis and can give helpful input. If you decide to be open about having Alzheimer's disease, it can help you begin to make plans for the future and open doors for others to support you. Family, friends, faith leaders, legal/financial advisors and/or the staff at your local Alzheimer Society may be able to help you during this time.

2. Focus on what you can do

You are still the same person. You still have the feelings, hopes and strengths that you always had. It is important to focus on what you can do and to develop strategies for successfully doing the activities that you now find harder to do. Try to keep a sense of humour and a positive attitude.

3. Maintain a healthy lifestyle

Making healthy lifestyle choices can help you feel better, may help slow the progression of the disease and improve your ability to cope with the changes you are experiencing. Healthy choices include:

  • Staying socially connected
  • Choosing healthy food
  • Being physically active
  • Reducing stress
  • Avoiding head injuries
  • Avoiding harmful habits such as smoking
  • Meeting regularly with your doctor for checkups and to explore treatment options
  • Getting enough sleep

4. Give your brain a work out

Studies have shown that mental stimulation—making yourself think—improves brain activity. It may help keep your brain healthy throughout life. Many people with Alzheimer's disease agree that it is important to put your brain to work every day. Challenging your brain doesn't have to be difficult. It can be as simple as dialing the phone with the hand you don’t usually use or as complicated as learning a new language. For extensive information and exercises on improving memory, concentration and problem-solving, see the By Us For Us© Guide: Memory Work Out.1 It is written by people with dementia for other people with dementia.

5. Manage triggers

Many people with Alzheimer’s disease talk about "triggers"—something that causes agitation, increased stress or more difficulty thinking. Understanding triggers and how to react to them is important in reducing how often they happen and the impact they have on you. A number of specific triggers and solutions are detailed in the By Us For Us© Guide: Managing Triggers.2 It is written by people with dementia for other people with dementia.

6. Plan for the future

There are many decisions you will have to make while living with Alzheimer's disease. There will also be a time when you will need to depend on others to make decisions for you. Making some of these decisions now can give you and your family members a sense of control and peace of mind.

Work: If necessary, speak to your manager about reduced hours and/or tasks. Start to plan for a time when you cannot work.

Safety: Be realistic about your whether you can drive. Start thinking about other ways to get around. Register yourself with the Alzheimer Society MedicAlert® Safely Home® program and talk with Alzheimer Society staff about other safety options.

Daily living: Ask for information on getting help with daily tasks and consider your preferences for where you may want to live in the future.

Financial, legal and care matters:

  • Let others know how you would like your financial, legal and care matters to be handled when you are no longer able to make decisions for yourself.
  • Discuss these wishes with your family. Write them down.
  • Appoint someone who will take care of your financial and legal matters.
  • Appoint someone to be your substitute decision-maker for the issues of your future care, such as where you would prefer to live, the kinds of medical interventions you would want, etc.
  • Your local Alzheimer Society can advise you on what issues will need to be addressed and the kinds of professionals who can help you with them.

7. Living alone

Many people who have Alzheimer’s disease continue to live successfully on their own for some time. Some suggestions to keep this arrangement as long as possible include:

  • Arranging housekeeping, meal preparation, transportation and bank-at-home services.
  • Arranging closets, drawers, etc., so that areas are uncluttered and items are easier to find.
  • Leaving a set of house keys with a trusted neighbour.
  • Using electrical appliances that shut off automatically.
  • Using labels, notes and alarms as reminders.
  • Keeping only one diary or calendar for all appointments and always keeping it in the same place.
  • Asking for and accepting help when you need it.

8. Get involved

Today, people with Alzheimer’s disease are often diagnosed earlier than they have in the past. Because they are diagnosed earlier, they may be able to take medications and use other treatments to slow down the disease. They can then continue to contribute to their communities. This gives people in the early stage of Alzheimer's disease a strong and unique position to have their voices heard. Helping to change some of the stereotypes about people who have Alzheimer's disease can have a powerful impact on public attitudes and on your own. Think about asking the Alzheimer Society in your community if they need people like you to raise awareness of the disease in your community or for public speaking or other volunteer tasks.

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 that you live with Alzheimer's disease. 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. Whether you are the person with the disease or someone who supports him or her, 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?

Resources

1. Alzheimer Society. www.alzheimer.ca (of particular interest: "I Have Alzheimer's Disease", "Forums" and "Resources" sections). Resources 2-8 can also be obtained by contacting your local Alzheimer Society or by visiting www.alzheimer.ca.
2. Alzheimer Society of Canada. (1999). Guidelines for Care.
3. Alzheimer Society of Canada. MedicAlert® Safely Home® Program.
4. Alzheimer Society of Canada. (2001). Shared Experiences—Suggestions for those with Alzheimer Disease.
5. Alzheimer Society of Canada. (2007). Heads Up for Healthier Living.
6. Alzheimer Society of Canada. (1998). The Alzheimer Journey: The Road Ahead, workbook and video (Module 1).
7. Alzheimer Society of Canada. (2008). First Steps for Those Recently Diagnosed; First Steps for Families.
8. Alzheimer Society of Canada. (2008). The Progression of Alzheimer's Disease—Overview; Early Stage; Middle Stage; Late Stage; and End of Life information sheets.
9. By Us For Us© Guides: Memory Work Out; Managing Triggers; Enhancing Communication (2006, 2007) were 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
10. 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: 12/16/11