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Click on the icon below to download and print a brief self-reflection activity sheet.  The purpose of this tool is to help you think about what you have learned and to provide a space for you to document some of your thoughts and ideas for moving forward.

There will be many decisions to make at this stage of the disease.

• Refer to and follow any documents that the person with the disease has made to take care of his wishes. They may be referred to as a Personal Directive or a Power of Attorney.
• If plans are not already in place, decide who will be responsible for making financial, legal and care decisions.
• Follow the person's wishes if you know them. Otherwise, decisions will need to be based on the person's lifelong values and desires and what you think the person would want.
• Advise the health-care team of any expressed medical wishes and include the team in the decision-making process on medical issues.
• A lot can change during this stage. Keep informed of any changes in the person's condition that may mean more decisions must be made.

It can be challenging for family members to agree on what to do, but through talking and understanding, conflict can be reduced, and crisis decision-making can be avoided. The Alzheimer Society can connect you with professional support from counsellors, social workers and family mediators.

Preparing for the Future

Asking questions of health care providers can sometimes be difficult. Many of us do not know the questions we could ask to help us better understand and plan for the future.

This question prompt sheet has been designed to open up conversations between you, your family, and members of the healthcare staff in this facility. The answers to these questions may not be simple or straightforward; dementia affects each person in different ways.

By asking these important questions, we hope you will gain the information you need regarding how things might progress toward the final stages of life and help prepare you for the future. Click on the image below to download and print a copy of the question prompt sheet.

More Learning Resources

Comfort Care at the End-of-Life for Persons with Alzheimer’s Disease or Other Degenerative Diseases of the Brain

Dementia and End-of-Life, Part 1: What decisions do I need to make?

There is a range of medical care available that can prolong life for people in the end stages of an illness. When and whether to use these measures depends on the type of medical care the person has specified. Or, if they have not left directions, the best decision based on the person's values and desires. The following are some of the measures that commonly need to be addressed.

Cardiopulmonary Resuscitation, or CPR, is a group of treatments used to restore function when a person's heart and/or breathing stops. 

CPR:

• May be painful and traumatic for the person.
• May leave the person in a worse condition.
• May not prolong life.
• Many experts do not recommend it when a person is in the end stages of an illness, and individuals often do not want to make such decisions when they are able to.

A "Do not resuscitate" (DNR) or “Do not attempt resuscitation” (DNAR) order tells medical professionals not to perform CPR if the person's breathing or heartbeat stops.

Feeding tubes are sometimes suggested if a person has a hard time eating or swallowing, which is common in the late stage of dementia. Tube feeding has not been proven to benefit or extend life. It may result in infections and can be uncomfortable for the person. However, sometimes, it is considered for a fixed time period. Talk to your healthcare team about any specific plans for the use of feeding tubes.

Intravenous (IV) hydration is liquid given to a person through a needle in a vein. Not being hydrated or having enough fluid in your body is a normal part of the dying process. It allows for a more comfortable death over a period of days. Using IV hydration can draw out the dying process longer. It may also burden the person physically. If IV use is being considered, there should be specific goals, with a limited time period that you and the health-care team agree to.

Antibiotics may be prescribed for common infections but may not improve the person's condition.

Source: Arcand & SPA-LTCteam(2020). Comfort Care at the End-of-Life for Persons with Alzheimer's Disease or other Degenerative Diseases of the Brain(Accessed May 24, 2024 https://spaltc.ca/wp-content/uploads/2022/02/ComfortCareBooklet_EN.pdf

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Advice from a Clinical Ethicist: Gary Goldsand

Clinical ethicist Gary Goldsand discusses the most common ethical decisions friends or family members may have to make at the end of life and explains the concept of a “good death.”

More Learning Resources

Comfort Care at the End-of-Life for Persons with Alzheimer’s Disease or Other Degenerative Diseases of the Brain

Dementia and End-of-Life, Part 1: What decisions do I need to make?

Gary Goldsand is a clinical ethicist.  Gary shares his knowledge of end-of-life decision-making while stressing the importance of having these conversations early.

The video will help you understand the ethical dilemmas in making treatment decisions based on values and beliefs.  Feel free to make some notes as you listen.

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The Progression of Alzheimer's Disease - End of Life

All About Me

Quality of Life

The experience of dying is different for each person. It comes in its own time and its own way.

When a person with dementia is in the very late stages of the disease, the focus should be on quality of life and comfort rather than on lengthening life and giving treatment. Palliative (or comfort) care focuses on the whole person's needs—physical, emotional and spiritual.

This session includes the following parts:

Part 1:  Ethical End-of-Life Challenges

Part 2:  Medical Care Decisions

Part 3:  Making End-of-Life Decisions

Part 4:  Questions for Reflection

Summary

At any time, you may scroll to the Search bar and type a specific question or topic to learn more.