Navigating dementia in relationships: Jessica Chastain's latest film 'Memory' sparks questions
Nearly a million Canadians will have dementia by 2030.
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After the recent release of acclaimed drama film "Memory," the spotlight is now turning towards the impact of dementia in relationships. received a standing ovation at its Venice Film Festival premiere back in September.
Directed by Michel Franco and starring Jessica Chastain and Peter Sarsgaard, the film explores an unlikely connection between Sylvia and Saul, the latter grappling with early onset dementia when they meet.
In an interview with Variety, Sarsgaard said his inspiration for the character came from his uncle. "My uncle had early onset dementia. It's very difficult to imagine having dementia as a person my age," he revealed. "I also saw how, in a lot of other portrayals of dementia I had seen, it didn't look like what I knew, and the guy I knew... I thought, this is a great opportunity to play somebody who has an affliction but is just wanting positivity with everyone at any given time."
As "Memory" resonates with audiences, it serves as a catalyst for conversation about the emotional terrain couples navigate when one partner is diagnosed with dementia.
In Canada, a report released Monday claimed the number of people living with dementia in Canada is expected to increase by 187 per cent from 2020 to 2050. Nearly a million Canadians will have dementia by 2030, and by 2050, there could be over 40,000 people under the age of 65 diagnosed.
Yahoo Canada spoke with Natasha Jacobs, advisory group lead for the Alzheimer's Society of Canada, on what Canadians can expect when their partner is diagnosed with dementia, and how to cope.
How does dementia impact a person's behaviour?
Dementia is an umbrella term that describes a set of symptoms caused by disorders that affect the brain. While there are many diseases that can cause dementia, Alzheimer's is the most common.
Some common symptoms of dementia include:
memory loss, short and long term
difficulty thinking
difficulty in problem solving
changes in moods or behavior
disorientation
delusions and hallucinations
According to expert Jacobs, one of the noticeable effects of dementia is the differences in language and awareness. "Word finding, sometimes it's really difficult," she explained, "even knowing what time of day, it is, for instance, can be really difficult."
How does dementia impact the diagnosed person's partner?
The impact of dementia can strain the emotional well-being of both partners when one is diagnosed. According to expert Jacobs, changes in moods and behaviour can be difficult to process in a romantic relationship.
"Your partner may obviously seem a lot different than you're used to, and your conversation — the pace and how your chatting with each other — will change."
Even things that seem small can lead to frustration. "To not know whether it's night or day, to be sleeping a lot more or to not know to wake up and get dressed, and then your partner having to help you with those things, or remind you of those things is really difficult."
Can you maintain emotional and physical connections with dementia?
Daily rituals, such as walks and intimate dinners at home, become essential in maintaining emotional and physical connections when it comes to dementia.
Jacobs said it's definitely possible, and it's about "continuing to care for the person for who they are still, and who they once were." She explained it's about moving forward with love and care.
I've seen time and time again, there's a lot of things that can fade with dementia, but I've always seen love push through.Natasha Jacobs
The Alzheimer's Society of Canada explained dementia "does not change the need for love and affection," but it can affect a person's interest in sex. It's important to talk about this with your partner, especially in the early stages of dementia.
"People with dementia can continue to have a healthy intimate life with their partner for many years," the agency explained, emphasizing the need for openness. "The changes in relationships and sexual needs of both the person with dementia and their partner can cause fear, confusion, anxiety, embarrassment and sadness."
A partner who is in a caregiving role may also have their needs change as they adjust to a new dynamic, and may feel guilty. That's why communication, as early as possible, is key.
"Partners who wish to be intimate can continue to be so with mutual agreement and with an understanding that how they express intimacy may change as the dementia progresses. Often it is not a matter of ceasing sexual activity, but finding different ways of expressing intimacy," the Alzheimer's Society of Canada explained.
More resources on intimacy in dementia are available online.
What can you do when your partner is diagnosed?
In addition to talking about sensitive subjects like sex, Jacobs advised to talk about everything early on in the diagnosis — from tasks like cooking to long-term care plans.
Some key strategies in helping your partner can include:
Using visual aids (visible clocks, calendars for day-to-day awareness)
Decluttering (helps with confusion)
Establish routines (ie. daily walks)
Embrace technology (set alarms or use voice-activated assistants like Siri)
Substitute busy events for intimate ones (ie. having a romantic dinner at home)
Plan for the future (early talks about role changes and establishment of a care team)
It's important to talk about ways to move forward as the dementia progresses, too. "You could speak to a social worker, putting together this sort of care team so that when the time comes, you're well supported, and you're well educated."
You're not alone. There's a lot of people who are grappling with finding different ways to show love to their partner.Natasha Jacobs
When partners become caregivers, Jacobs assures there's a wide range of support systems available in Canada.
A crucial piece of advice from Jacobs is also "looking after yourself as somebody who's looking after somebody with dementia." Finding time for yourself is key in having "the strength and the clarity to love your partner," she explained.
The Alzheimer's Society of Canada has a long list of resources available on what to expect from dementia, how to handle certain behaviours, and more for caregivers and those living with dementia.
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