News — Dementia

In June of 2016, the Parliament of Canada passed a federal law that Canadians would be able to request medical assistance in dying. Physicians and sometimes nurse practitioners are the only ones who can provide medical assistance in dying, if they feel comfortable in that situation. This law is specifically for persons who live with chronic illnesses that are incurable and involve an immense amount of physical and mental suffering. 

The current law does not allow for persons living with any mental illnesses, including dementia, to make decisions about assisted death. This law states that persons must be competent upon making this advanced decision and right before medical assistance in dying. While people with dementia are typically quite competent in the early stages, unfortunately as their dementia progresses, they are no longer seen as competent enough to make decisions about their end of life requests. This poses a variety of challenges for people living with dementia and their families. Many persons living with dementia are challenging this law as a way to take charge of their lives and make requests based on their own choices. 

There are many challenges to this as persons with dementia should make their own choices about their health but need to be provided with a safe, legal space. Some persons with dementia feel that they want to take control of their dementia and receive medical assistance in dying prior to late stage dementia. Others might not want their relatives to make decisions for them. Many challenges can arise if others make decisions on their behalf, and it is important for persons with dementia to have their wishes heard and understood. Some relatives might abuse this advanced request and it is important to know that many persons with dementia live well in their communities for many years after diagnosis, and it would be upsetting for them to receive medical assistance in dying if they did not make that choice. This becomes a difficult conversation to have. 

In order for persons living with dementia to receive medical assistance in dying, the law must change. But it is a challenging situation, as many persons with dementia deserve to have rights, but also deserve to be treated equally and fairly by the people closest to them. To begin this discussion, it is important to discuss your health wishes with your loved ones early, this may be before diagnosis or immediately after diagnosis. Meet with a legal consultant and inform them about your wishes about your own health. That way, the family has this information legally written down and understands a person's wishes in the future. While medical assistance in dying at this time is not possible for people living with dementia, it is important to understand that many persons living with dementia can live well in their communities for many years, with the support of various resources that are made available to them. Thus, at the present time, support your loved ones with dementia and help to maintain or improve their quality of life. Reach out to others for support and have a discussion with your physician about various resources and options fit for your situation. 

 References

Alzheimer Society of Canada (December 12, 2018). Medical assistance in dying for people with dementia: Position statement. Retrieved from https://alzheimer.ca/sites/default/files/files/national/position-statements/medical-assistance-in-dying-for-people-with-dementia.pdf

CBC News (September 29, 2018). Ontario man with dementia on crusade to plan his own death. Retrieved from https://www.cbc.ca/radio/thesundayedition/the-sunday-edition-september-30-2018-1.4841264/ontario-man-with-dementia-on-crusade-to-plan-his-own-death-1.4841267

Government of Canada (April 25, 2019). Medical assistance in dying. Retrieved from https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html 

When people hear the word dementia, they often think of older adults, end-stage dementia, and long-term care homes. However, many individuals living with dementia can be much younger and are living well in their own communities. It is important to educate the community on what dementia might look like, challenge the stigma that surrounds it, and implement best practices for persons with FTD to live well. 

References

Alzheimer Society of Canada. (2018). Frontotemporal dementia. Retrieved from https://alzheimer.ca/en/Home/About-dementia/Dementias/Frontotemporal-Dementia-and-Pick-s-disease 

Mayo Clinic. (2016). Frontotemporal dementia. Retrieved from https://www.mayoclinic.org/diseases-conditions/frontotemporal-dementia/symptoms-causes/syc-20354737 

Have you ever been in public and feel as if nothing is going right? For example, have you been in a restaurant and your loved one with dementia is saying something inappropriate or drawing attention? Have you ever felt embarrassed about a certain situation?

While it might feel like the whole world is looking at you and your loved one, this is a great opportunity to educate others about dementia and explain to them why the situation might have occurred. However, we know that some persons with dementia are not always comfortable disclosing their diagnosis due to the stigma that still exists. 

When we would take our grandmother out to a restaurant for dinner we wished we created a card that was discrete enough to share with others that her behaviours might have been a bit of the 'ordinary' because of her dementia diagnosis. We also wanted to thank people around us for being so patient and understanding during the situation. 

As a result, we have created a resource card, the size of a business card to share with others in public and inform them of dementia and use it as an educational tool. While many times we were unable to educate our server, cashier, or salesperson that our grandmother had dementia in that moment, we wished that we had something to inform them so that our grandmother did not feel uncomfortable.

By sharing a dementia diagnosis with the public and people working in customer service, this helps to educate society and inform people of ways that we can better support persons living with dementia in their communities to live well, without feeling embarrassed.

We also want to note that these cards should not be used as an 'excuse' or for the public to treat people with dementia differently or ignore them. We want to use these cards as a way to be more inclusive, educate others, and for businesses to be able to offer the best service for persons living with dementia. 

What are some ways you educate the public about dementia? Share with us in the comments below.