On February 25, 2021 Dying With Dignity Canada hosted a webinar about dementia, MAID, and other end-of-life options. The panelists included:
- Dr. Konia Trouton, MD, MPH, FCFP
- Dr. Justine S. Dembo, MD, FRCPC
- Puneet Luthra, DWDC's Director of Government and Stakeholder Relations
This blog will summarize some of the key takeaways from this informative panel.
If you prefer to view this content in video format, the full webinar recording can be accessed here.
Key takeaway #1: There are multiple different kinds of dementia.
Alzheimer’s disease affects several different parts of the brain and has a fairly slow onset. It progresses gradually with the first signs being loss of memory, and sometimes difficulty finding words, difficulty learning new information, and particularly information to do with events in a person’s life.
Vascular dementia is related to coronary artery disease or arterial disease. Blocked arteries in the brain will affect blood supply to parts of the brain. A patient might deteriorate in a stepwise manner with a significant deterioration and then a plateau. The plateau can last for some time and then there could be another deterioration.
Lewy Body dementia is a type of dementia related to Parkinson's disease. It has a slow onset. It progresses gradually, but it can have some unique features like fluctuations in level of alertness and in cognition, which is the ability to think, and it can include some vivid hallucinations for some people.
Frontal temporal dementia affects the lobes of the front of the brain which are responsible for how we control our behaviours and how we process information. Symptoms can include becoming disinhibited, more impulsive and apathetic. There can be increased sexual behaviours or an impulse to put items in the mouth.
Note: Mild cognitive impairment is where there are mild changes in people's ability to use language or in memory, for example, forgetting minor things, but it doesn't affect someone's ability to function, either at home or in their relationships or at work.
Key takeaway #2: There are three key traits to help improve quality of life for those who live with dementia.
- Positive attitudes toward aging
- Feeling younger than your chronological age
- Overall satisfaction with life
In addition, from an Australian study:
- Maintaining independence
- Having a purpose
- Opportunities for social interaction and maintaining community
Key takeaway #3: The stages and trajectory that dementia usually follows, using Alzheimer’s as an example.
Typically, the phases of Alzheimer’s dementia are classified as early, middle and late. Prognosis after diagnosis of Alzheimer’s disease, in terms of how long someone might live, is on average four to eight years but people have been known to live longer.
Early stage: People are still independent with the main issue being memory.
Middle stage: More challenges with memory, planning and organizing. People can start to experience confusion. It becomes more common to get lost. There may be more difficulties with decision-making, changes in sleep patterns, changes in mood, and bowel and bladder symptoms.
Late stage: There is more obvious physical decline. Some people need more help with basic tasks such as bathing and dressing. At the very late stage, people need help with eating and become less aware of other people and their surroundings.
Note: Each dementia has a different set of stages and trajectories.
Key takeaway #4: Qualifying for MAID when you have dementia.
Note: This webinar was delivered before the passage of Bill C-7
Those with dementia who have been successful in obtaining MAID (before the passage of Bill C-7*) have retained capacity throughout the process. They have had several assessments with different clinicians, and they often have a longstanding relationship with their neurologist. And some have documented their end-of-life choices long before their diagnosis.
With these elements in place, a supportive and open discussion with the person’s support team can occur.
*Bill C-7 was given Royal Assent on March 17, 2021. The new legislation allows for waiver of final consent. People with dementia can receive MAID if they meet all the criteria and have capacity to consent. If their natural death is reasonably foreseeable, they could utilize the waiver of final consent.
Key takeaway #5: End-of-life options available to us in Canada.
Palliative care is accessible locally. It could be a collection of physicians, nurses, social workers, and counselors who can help with making your quality of life better in those final years.
If you don’t have local access to palliative care, there is a resource called the Canadian Virtual Hospice.
End-of-life care is more nuanced now than it used to be. You can record in an Advance Care Plan exactly what treatment you do, or do not want. For example, you can mention specific treatments such as use of a ventilator, artificial hydration or antibiotics.
It’s important to designate a Substitute Decision-Maker who can express your decisions if you do not have capacity. To be clear, a Substitute Decision-Maker cannot make a decision for medical assistance in dying on someone’s behalf.
Withdrawing treatment is another consideration when, for example, a person’s quality of life has declined.
Another option is palliative sedation to reduce suffering at the end of your life. This could be an intravenous drip to make sure you are comfortable at end-of-life.
These are just a few of the insights gathered from our February webinar, "Dementia, MAID, and other end-of-life options." To learn more, watch the full webinar here.