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For Those Recently Diagnosed with Alzheimer's disease

You may still be independent, but as the disease progresses, your ability to make your own decisions will decline. Discussing your wishes now also gives you a say in the decisions that may be made about your future. Talking to family members, close friends and health-care professionals now about your needs and wishes for the future will help make it easier for them to respect your wishes and make decisions that honour your personal values.

Planning for the future can give you the comfort of knowing that your personal affairs are in order and that your future care will be in good hands.

Work, Retirement and Volunteer Activities

If you are still working, talk to your employer about Alzheimer's disease and your symptoms. Cutting down on your hours and responsibilities may be an option. Or you may have to stop working. If you own your own business, you will want to plan for its future.

Volunteering may provide an opportunity for you to continue using your skills and continue participating in activities that you have always enjoyed.

Money and Legal Matters

Talk to your family. Make sure your money matters will be in the hands of someone you trust.

You may wish to arrange for a power of attorney authorizing someone to legally make decisions, on your behalf, once you are no longer able. Talk to a lawyer about naming someone to look after your financial interests.

Pull together your legal and financial documents:

bank accounts
mortgages
insurance policies
pension plans, RRSPs
investments
home, car ownership
will

Living Arrangements

For now, you may need little or no assistance with daily living. As Alzheimer's disease progresses, you will find that you need assistance with activities such as cooking, housekeeping, shopping and transportation. Talk to family members and friends to see who would be able to assist you with these tasks.

We can provide information and referrals to community and social services that are available in your area.

These may include:

live-in companions
assisted-living homes
supportive housing
retirement and long-term care facilities

Some questions to ask

Is the residence Alzheimer-friendly?

Are staff trained to care for people with Alzheimer's disease?
Can you walk safely indoors and outside?
Does it have a home-like environment?

What is the care philosophy of the residence?

Does it focus on the person's needs?
Can it accommodate your personal preferences for food, routines and activities?

What kind of medical care does the residence provide?

Can you continue to see your own doctor?
Is there a doctor on call?
How often does the doctor visit?
Can you meet the doctor?
How are medical emergencies handled?

What kind of personalized care is available?

Can you choose menus?
Can you bring your pet?
Can you bring your own furniture?

Health Care and Personal Care Planning

You can name someone to make health care decisions for you when you are no longer able to do so. This person is called a substitute decision maker.

Why is this important to discuss now?

As the disease progresses, your substitute decision maker will have to make decisions about your care. For most people, making decisions on behalf of someone else is difficult. By talking to your decision maker now about what level of care you do and do not want in the future, you may reduce the person's anxiety when it is time to make those choices. You will also have the comfort of knowing that your future care will be in good hands.

If you think it would be helpful, write down your wishes. We can help you find out if your province has legal documents regarding planning for future health care.

Even if you choose not to write things down or draw up a legal document, talk about these matters. Your verbal wishes can be just as valid. Let those closest to you know what you want and what you do not want for your future health and personal care.

Source: [From the Shared Experiences: Suggestions for those with Alzheimer Disease booklet and audiotape by the Alzheimer Society of Canada.]

For Caregivers

With Alzheimer's disease, there is no way to predict when the symptoms will worsen. Getting a diagnosis early in the disease process is important and helpful, as this will allow the person with Alzheimer's disease to plan for her future while she is still capable of making decisions.

The Planning Checklist

The following checklist provides some of the key questions that should be asked when planning for the future.

Financial/legal

Who will be the substitute decision-maker for financial matters when the person is unable?
Does the person have a will?

Care

Who will be the primary caregiver?
What role will other family members play?

Living

Where is the person currently living?
If on her own, is she safe?
Should you start investigating other options such as assisted living or long-term care facilities?

Health care

Who will be the substitute decision-maker for health-care decisions?

Emergencies

If the primary caregiver is unable to provide care on short notice (i.e., during a medical emergency), is there a plan in place?
Are family and neighbours aware of the back-up plan?

Money and Legal Matters

It is important for the person in the early stage of the disease to be part of the decision-making about her financial and legal affairs while she is capable of making decisions and signing legal papers.

Wills and related documents

Some important documents should be put in place as soon as possible after the diagnosis of Alzheimer's disease is made. This will let the person with Alzheimer's disease be involved in making these decisions. And it will help the caregiver and family members be aware of the person's wishes.

The names of these documents vary from province to province, but they include:

a will that states how the person's property should be divided after her death
a document that names a substitute decision-maker who can make decisions about financial and legal matters on behalf of the person with Alzheimer's disease when she is no longer able
a document that names a substitute decision-maker for future health-care decisions
a "living will" or "advance directive" that describes the person's wishes for health-care and end-of-life care in the future; this can help families make difficult decisions that may arise during the course of the disease when the person is no longer able to make these decisions for herself

Contact a lawyer for specific information about the legal requirements in your province. Or contact your provincial Alzheimer Society for more information.