Planning for the Future

There are many decisions a person recently diagnosed with Alzheimer’s disease will need to make and help to make concerning their future. And it won’t be different with family members / caregivers.

These resources will help guide you through these important issues and help you plan for future changes so that you can continue living your life to the fullest.

For Those Recently Diagnosed with Alzheimer’s disease

You have likely been worried and anxious about the changes you are seeing in yourself. Knowing you have Alzheimer’s disease may be upsetting. You may be concerned about the future. However, you have already taken an important first step in caring for yourself: getting a diagnosis.

Changes To Expect

The changes you are experiencing are because of Alzheimer’s disease. They are not your fault. You may have trouble finding words, completing thoughts, following directions or remembering information. Later you may feel confused and have difficulty with familiar tasks, such as driving a car. These changes are related to the disease as it affects memory, thinking and behaviour. They will progress over time. Other people may notice changes in your behaviour or personality. The effects of the disease will change how you live day to day.

The information that follows can help you cope with the changes you are experiencing and plan for future changes so you can continue living your life its fullest every day.

1. Recognize that you are going through a variety of emotions
You may respond to the news of the diagnosis and the changes caused by the disease with a variety of emotions. You might feel angry, embarrassed, frustrated, afraid or sad. These emotions are very normal and may come and go. Let those close to you know how you are feeling.
It may also be helpful to be aware that members of your family will also be experiencing the same types of emotions.

Often people with Alzheimer’s disease get depressed. If your feelings are overwhelming and won’t go away, talk to your doctor.

2. Tell people
Let the people closest to you know that you are living with Alzheimer’s disease. Explain what the disease is and how it is affecting you. Sharing this information will help them to know that the difficulties you are having are a result of the disease. Knowing this will also allow you to tell them how they might be able to support you.

3. Learn as much as you feel you can
Find out what you can about the disease and how it will progress. Learn about tips and strategies that might help you day to day. The Alzheimer Society has many useful resources to help people with the disease, such as Shared Experiences and the workbook Just for You, as well as counselling and support services.

4. Explore treatment options
While there is no cure for Alzheimer’s disease, currently there are medications that can help some people with some of the symptoms. Read about the treatments that are available. Discuss their risks and benefits with your doctor. You may wish to participate in a research study. The local Alzheimer Society will have information on treatment options and research studies available in your area.

5. Recognize that you have a disease that affects your abilities
The changes caused by the disease affect how you live every day.

• Focus on what you can do, not what you can’t
• Find ways that might help you cope with these changes. For example, writing down important things in a memory book, labelling cupboards or marking a calendar might help with memory problems
• Simplify your life wherever you can
• Reduce the number of pressures you face
• Follow a routine

• Learn to be patient
• Try not to be hard on yourself
• Keep in mind that you have a disease that affects your abilities

7. Look for support
Find people you are comfortable with to share your feelings and emotions. It may be a member of your family, a good friend, another person with Alzheimer’s disease or a support group. No matter who it is — the important thing is to share your experience and how you are feeling. Some people also find writing their thoughts, feelings and experiences in a journal helpful.

8. Plan for the future
Plan now for the future.

• If you are working, it is important to prepare for your future retirement
• If you own a business, you will need to make plans for when you can no longer do things on your own
• If there are decisions about your personal life that you have been putting off, make them now
• Put your paper work in order, including legal and estate planning, if it is not already
• Ensure that you have chosen someone to make financial and health-care decisions for you when you are unable to do so. Talk to the person about your wishes and write them down in an advance directive. This will ensure that your requests are followed when you are unable to communicate them yourself.

• Give you the information you need to learn more about the disease and coping strategies
• Provide support whether with a counsellor or a support group
• Register with the Safely Home — Alzheimer Wandering Registry program to ensure that if you get lost, there is help at hand to get you home
• Locate services in your community

For Families of Those Recently Diagnosed with Alzheimer’s disease

When someone has just been diagnosed with Alzheimer’s disease, the news may be upsetting for both the individual and those who care about him or her. Most likely you have been worried about the changes you have been seeing in the person and you may be anxious about the future.

However, an important first step has already been taken: getting a diagnosis. If you will be the primary caregiver or an involved family member, there are things you can do right now that might make life a little easier. The information that follows can help.

1. Learn as much as you feel you can
Learn as much about the disease and providing care as you can. Find out how the disease can affect a person, what changes you can expect, and how you can provide help and support to maintain the person’s independence and quality of life. Share this information with those closest to the person, such as family members, friends and co-workers; it will help them understand. The Alzheimer Society has many useful resources that can help such as the Alzheimer Journey video series, the handbook Alzheimer’s disease: a handbook for care, as well as counselling and support services.

2. Recognize that the disease affects the person’s abilities
Alzheimer’s disease progresses over time. It will affect how the person functions on a day-to-day basis. Learn about the changes the disease will cause so that you have realistic expectations of the person’s abilities. Ask the person how you can help him or her stay independent and maintain a sense of control. One tip often heard from caregivers is that you must learn to be patient.

3. Don’t lose sight of the person
No matter how the disease affects the individual, it is important to treat him or her with dignity and respect. Although certain abilities will be lost, the person’s emotions and feelings will remain, as will the need for companionship and belonging. Provide activities and interactions that bring a sense of joy and celebration.

Focus on the abilities that remain. This will go a long way in adding to the quality of life and help the person maintain a sense of self.

4. Explore Treatment Options
Currently there is no cure for Alzheimer’s disease. But medications are available that can help some people with some of the symptoms. Discuss their risks and benefits with the person’s doctor. As well, you local Alzheimer Society will have up-to-date information about new treatments that might be available through drug trials. If the individual chooses to participate in such research, you may be asked to help.

5. Recognize that you are going through a variety of emotions
The news of the diagnosis and the changes it will bring can cause you to have a variety of feelings: anger, denial, embarrassment, frustration, fear, sadness and guilt. These emotions are normal and common among caregivers, and may come and go. Sometimes people get depressed. If your feelings are overwhelming and won’t go away, talk to your doctor.

It is important to be aware that the person with the disease and other family members may also be experiencing the same types of emotions.

6. Plan for the future
Support the person in planning for the future.

Decisions about work and personal issues need to be made while the person is able to be involved in the decision-making process. Help get all paper work in order, if it is not already. Ensure that someone has been chosen to make financial and health-care decisions when the person is unable to do so.

Make certain that the individual has talked about health-care decisions or written his or her wishes in an advance directive. Legal and estate planning should also be discussed. Create a back-up plan should you be unable to provide care.

7. Recognize that caregiving can take its toll
Providing care to an individual with Alzheimer’s disease can take its toll on the caregiver. Caregivers are often at risk for physical and emotional problems. Those who provide care should be aware of this and take steps to care for themselves. Maintain your physical health, exercise and eat a healthy diet. Find time for activities you enjoy.

For more helpful information consult Are You Providing Alzheimer Care? : 10 Signs of Caregiver Stress and Reducing Caregiver Stress : 10 Ways to Feel Better

8. Seek out help
There are community agencies and services to help you now and in the future. These services can help you with everyday household or caregiving tasks. You may also have a network of family and friends who are willing to lend support.

To determine what help you need, think about your strengths and weaknesses, what you need and what would help you in your caregiving role. Figure out who might be able to help and then ask.

Learn about the system of resources in your community. Learn how the services work, what you can expect from them and how you can access them. Your local Alzheimer Society can help direct you to the services in your community.

9. Develop a support network
Find people you are comfortable with to share your feelings and emotions. It may be a member of your family, a good friend, members of a support group or someone at the local Alzheimer Society. The important thing is to find an outlet where you can express your feelings. Caregivers often become isolated and lonely, so it is important to stay connected to the people around you.

10. Know that the Alzheimer Society is here to help

The Society is in your community to help you and your family. It can:

• Give you the information you need to learn more about the disease, caregiving and coping strategies
• Provide support whether with a counsellor or a support group
• Register the individual with the Safely Home -Alzheimer Wandering Registry program to ensure that if the person gets lost, there is help at hand
• Locate services in your community
  

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