Advance care planning
"My hopes and dreams in life haven’t changed and I make it a point to do meaningful things in my life just as anyone else would. If anyone reading this who has been diagnosed with a form of dementia or has a loved one who lives with this disease, I feel this is the first thing you need to know. We all live with a terminal condition. It’s called life. The same thing applies to people with dementia." - Roger, from Medicine Hat, Alberta. Roger lives with Alzheimer's disease.
Make an advance care plan
You may want 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 advance care plan:
- Think about what’s important to you.
- Learn about different medical procedures and what they can or can’t do.
- Decide on a substitute decision-maker – someone who is willing and able to speak for you if you can’t speak for yourself.
- Talk about your wishes with those closest to you.
- Record your wishes. The Alzheimer Society can help you find out if your province/territory has legal documents regarding planning for future health care.
Have a conversation with a person you trust to be your substitute decision-maker
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 how you want to be cared for later on, 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 trusted hands.
Your decisions about your end-of-life care
At the Alzheimer Society, we know that you are an individual, first and foremost, and you have the same rights as everyone else.
This includes the right to get the information and support you need to participate as fully as possible in decisions that affect you, including care decisions in palliative and end-of-life care.
The Alzheimer Society respects this right – if you wish to pursue medical assistance in dying (MAiD), for example, we will provide you with the support and information you need so you can make a decision that's best for you.
Have questions or need support? Contact us at [email protected].
Speak Up Canada can help you with more information and resources you can use to create your advance care plan. Download the advance care planning kit for your province.
We recommend learning more about what your end-of-life care may look like. It can help you, your family and your caregiver know what to expect and prepare accordingly.
Legal and financial planning
Arranging a Power of Attorney
There will come a time when you can no longer make financial choices for yourself and other decisions, like signing legal papers.
At this time, family, caregivers or healthcare providers will need to make decisions for you, so it's important to talk to them and let them know your wishes. 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.
Making a Will 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 other 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 healthcare decisions
- A "living will" or "advance directive" that describes your wishes for healthcare 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.
Collect all relevant documents
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,
- Real estate, home, business, car ownership, and
- Prepaid funeral arrangements and/or cemetery plot.
Work, retirement and volunteer activities
If you are still working, consider talking to your employer about dementia 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.
For now, you may need little or no help with daily living. As dementia 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 and
- Retirement and long-term care homes.
More useful links and resources
Advance Care Planning (ACP). This initiative focuses on supporting Canadians with their advance care planning. Their resources can help you through the steps of advance care planning to record such things as wishes, information about your substitute decision-maker(s) and information about other important documents.
Advocacy Centre for the Elderly (ACE). According to its mission statement, ACE is committed to upholding the rights of low-income seniors. Its purpose is to improve the quality of life of seniors by providing legal services which include direct client assistance, public legal education, law reform, community development and community organizing.
Canadian Hospice Palliative Care Association (CHPCA). CHPCA is the voice for quality end-of-life/hospice palliative care in Canada. Their website includes directory of services that can point you toward palliative care services near you.
Dying with Dignity Canada. Through advocacy, public education and personal support, it is Dying With Dignity Canada's mission to ensure Canadians have access to quality end-of-life choice and care. Their website includes resources on advance care planning, palliative care and medical assistance in dying (MAiD).
Ready, Set, Plan – for care partner absence. As a caregiver, use this form to help you plan ahead for times where you may not be available to support the person you’re caring for. Note that while this form is from the Alzheimer Society of Ontario, anyone across Canada can use it.