Living with dementia

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Planning for the future

As Alzheimer’s disease or other dementias progress, it can becomes difficult to make choices and communicate your wishes regarding care. There are a number of things that you can do to plan for your care in the future. These are known collectively as 'advanced care planning'.

Health care and personal care planning

You may wish to name a substitute decision maker, someone who can speak for you if you couldn’t speak for yourself. It can mean the difference between the care you want and the care you might receive.

How to make your health care plan:

  1. Think about what’s important to you.
  2. Learn about different medical procedures and what they can or can’t do.
  3. Decide on a substitute decision maker – someone who is willing and able to speak for you if you can’t speak for yourself.
  4. Talk about your wishes with those closest to you.
  5. Record your wishes. The Alzheimer Society can help you find out if your province/territory has legal documents regarding planning for future health care.

Even if you choose not to write things down or draw up a legal document, have the conversation about your future health and personal care. Your verbal wishes can be just as valid.

By talking to your decision-maker now about the level of care you wish in the future, you will make those choices easier for your caregiver(s). You will also have the comfort of knowing that your future care will be in good hands.

Legal and financial planning

If you have Alzheimer’s disease or another dementia, there will come a time when you are no longer able to make financial decisions and sign legal papers. The people you name to act on your behalf need to know your wishes in order to honour and act on them.

Talk to your family and make sure your money matters will be in the hands of someone you trust. Arrange for a power of attorney authorizing someone to legally make decisions on your behalf when you are no longer able. Talk to a lawyer about naming someone to look after your financial interests.

Wills and other important documents

As soon as possible, make a list of the important documents that you will need to have in place. Reviewing the list with your family members will help your caregiver and family members be aware of your wishes.

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

  • A will that states how your property should be divided after your death
  • A document that names a substitute decision maker who can make decisions about financial and legal matters on your behalf when you are no longer able
  • A document that names a substitute decision-maker for future health-care decisions
  • A "living will" or "advance directive" that describes your wishes for health-care and end-of-life care in the future; this can help your family make difficult decisions that may arise during the course of the disease when you are no longer able to make these decisions for yourself.

Contact a lawyer or your closest Alzheimer Society for specific information about the legal requirements in your province or territory.

In addition to the above, gather the following legal and financial documents and information, and let a trusted adviser and family member know where they are stored:

  • Bank accounts
  • Credit cards
  • Loans and mortgages
  • Insurance policies (life, auto, home, disability)
  • Pension plans and RRSPs
  • Investments
  • Real estate, home, business, car ownership
  • Prepaid funeral arrangements and/or cemetery plot

Work, retirement and volunteer activities

If you are still working, consider talking 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 participating in activities that you have always enjoyed.

Living arrangements

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

Your local Alzheimer Society can provide information and referrals to community and social services available in your area.

These may include:

  • Community support services like Meals on Wheels, adult day programs and volunteer visits
  • Live-in companions and other privately hired home helpers
  • Assisted-living homes
  • Supportive housing
  • Retirement and long-term care homes

Additional resources

Canadian Hospice Palliative Care Association (CHPCA): www.advancecareplanning.ca

Advocacy Centre for the Elderly (ACE): www.advocacycentreelderly.org

The Advance Care Planning Workbook (CHPCA), describes the steps of advance care planning and includes space to record such things as wishes, information about your substitute decision maker(s) and information about other important documents.

Caregiver Connect Guide, Victorian Order of Nurses (VON)


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Last Updated: 08/19/15
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