Balancing risks and rewards with a dementia diagnosis
No sharp objects, no open flames, no toxic chemicals, no fall risks, no small objects, no messy activities, no glassware or metal cutlery, no mirrors, no living with your spouse, no admittance to other floors in the community, and definitely no outdoor access.
Oh, and no plants.
“No…. plants??” “No. Residents living with dementia are prone to eating them.”
“…It’s for their own good.”
Oof. Have you noticed placating statements like “it’s for your own good”, “calm down”, or “you’re overreacting” generally exacerbate an already difficult situation? As an adult, you may have had a strong reaction to someone expressing those words in the heat of an argument, causing tensions to run high, and making it next to impossible to compromise and find a solution.
Should it be any different for a person experiencing dementia? What might someone feel like hearing the phrase “calm down” when their whole world has been upended – autonomy over their decisions, their living experience, even their physical independence – all suddenly in question?
Sure, restrictions may ensure their physical body is “safe”, but what are the impacts to their mental health? And how does that translate to how they respond – and subsequently react – to their environment?
The path to resistance
Reducing instances of serious injuries like burns and falls by limiting access to open flames and steep narrow staircases may be reasonable and fair precautions for someone living with physical and cognitive decline.
Similarly, limiting access to and use of toxic chemicals to someone who has a tendency to drink from a cup without examining the contents may also be a reasonable measure to protect safety.
You may also argue there’s a strong case to prevent a person living with dementia from leaving a supportive community without supervision, or in extreme cases, not permitting a person to live with their spouse when there has been a history of unpredictable behaviour that previously caused harm.
– But no plants? Certainly, some plants are known to be potentially harmful when ingested – however, any avid gardener could recommend suitable options that tick the boxes of both “safe” and “aesthetically pleasing”. And for someone living with dementia who is passionate about nature or gardening, something as simple as a beautiful plant may be that added touch to bring the feeling of home to life.
Rather than implementing sweeping, hardline interventions and safety measures, we can look to the individual for their knowledge and input, giving them the opportunity to demonstrate their expertise, feel a sense of accomplishment, and have some ownership and autonomy over what their environment looks and feels like.
Restrictions via routine
Dementia is not a specific disease, but rather a broad umbrella of symptoms related to cognitive decline, and while it’s well documented and researched, the true experts in dementia are those experiencing it. For some, an unfortunate and often frustrating side effect of that experience is being unable or limited in the ability to accurately express feelings, fears and needs.
Knowing the symptoms and outcomes of dementia are both complex and vast – the logic follows that there should be no one singular path of support for a person experiencing dementia and other symptoms of cognitive decline.
Historically, most dementia support programs have been systematic and rigid. A structured day could look something like this: wake up at seven. Eat three pre-ordered meals at set times, at an assigned table. Then, two mandatory activities followed by an early bedtime.
The intent of this style of care suggests a consistent schedule and routine is beneficial to those who may have a limited concept of time or current reality. But in fact, it is a one-size-fits-all approach that ignores the typical routines and history of an individual before diagnosis, and minimizes their preferences, hobbies, and passions, or even how individual care needs can be met according to who they are as a person.
“Balancing risks and benefits of support options through a dementia diagnosis is just that – a balancing act,” says Amy McDonough, United Active Living’s United Minds Manager. “And because every person’s journey is unique, that balancing act should likely look different for each individual. Using broad strokes to mitigate risk and focus solely on safety issues can be a source of resistance. It can also have unintended consequences for a person’s mental and emotional wellbeing.”
The night owl vs the morning songbird
Chances are, either you or someone you know have joked about your morning behaviour, and have said something along the lines of “it’s unwise to approach me before my morning coffee.” Imagine if someone came to get you out of bed three hours earlier, and, by the way, you’re not allowed caffeine anymore. You’d have something to say about that. It probably wouldn’t be polite.
Now, think about an individual who worked night shift throughout their career. Their sleeping patterns may be radically different than a typical 9-to-5-er.
It shouldn’t be surprising that even though they no longer need to follow the night shift sleeping schedule, the lasting effects of a career in shift work don’t end at retirement. More than likely, it means they will still encounter difficulty falling asleep by 8pm, and will also have trouble waking up early in the morning, well rested and happy to start their day.
Would it be reasonable to expect this person magically adjusts to a completely opposite schedule and wakes up feeling chipper, ready and willing to conform to a rigid schedule after repeatedly being denied a proper night (or day)’s rest?
Should this individual be labelled as “difficult” when they “refuse” to wake up and eat breakfast at 7am? Who isn’t grumpy and unpleasant after a terrible sleep – especially when their deep-rooted circadian rhythm doesn’t care about the posted daily schedule.
Fun is in the eye of the beholder
It’s true – physical and mental activities, socializing and participating in programming stimulate the brain and can help delay the progress of some dementia symptoms. But is it really beneficial if you’re forced to participate in an activity you dislike?
Think back to your school days. Were you a very social person, or more introverted? Were you involved in clubs or sports? Did you have a favourite corner in the library? Or did you skip class entirely and head to the mall instead? Just as there were subjects and activities you enjoyed and even excelled at, no doubt there were other activities you actively avoided.
So, imagine how you’d react if your daily schedule puts you in an arts and crafts activity all afternoon, when all you’re itching to do is venture outdoors with a pair of gloves and a spade to spend some quality time in your garden. Maybe you have recollections of having a hard time in gym class, and you’re now reliving the experience with an overly enthusiastic fitness instructor, when you’d rather just curl up with a cup of tea and a good book.
This isn’t high school anymore. Should someone be deemed “difficult,” “impatient” and “unwilling to cooperate,” when there’s no justifiable reason to participate? Any purported benefits of an activity are negated when someone leaves feeling frustrated and upset – especially someone who has no idea why they’re being forced to partake against their will.
Isn’t there more benefit to encourage an individual to pursue a hobby or activity that brings them joy and satisfaction? What activity truly delivers wellness at the end of the day?
Perhaps it’s not what they are doing, it’s that they are doing.
Safety vs satisfaction
Think back to your first time on two wheels. Remember when your dad gave you one big final push before he let go? Perhaps you experienced a brief flash of joy right before careening into the bushes. Or maybe you got your feet on the pedals just before losing momentum and toppling over. Dad knew that would happen. It’s was calculated risk to help you grow and learn.
Risk tolerance is different for everyone. Maybe after you brushed yourself off (hopefully not too many tears), you decided to head back home and nurse your wounds, never to ride again. Or maybe, you shook it off and went on to bike across North America during your gap year. Neither choice is wrong. The important takeaway is you were given the opportunity and support to try, and freedom to choose.
Striking a balance
It’s prudent and necessary to have some restrictions and monitoring to mitigate serious injuries and ensure an individual’s safety needs are met. It’s important to research and seek a continuing care community that is capable of addressing and supporting an individual’s needs and ensure the community in question is a safe fit.
However, wherever possible, it’s imperative to empower people experiencing cognitive decline with the freedom to choose – whether it’s clothing, activities, or what they eat – and offer the support needed for them to be who they are as an individual.
To deny someone their autonomy tells them they have no power, no purpose, and no value. It shouldn’t be a surprise that anyone placed in a situation where their emotional needs aren’t being met, or possibly even actively denied, may be reported to be “miserable” and “difficult” – but really, can you blame them?
“A person who feels forced or trapped in their situation will not feel safe or empowered to be themselves, which usually results in the individual being perceived as “combative,” “challenging,” or “difficult,” through no fault of their own,” McDonough says. “People living with dementia are frequently told they are no longer permitted to pursue certain hobbies, live with their partner, eat what they like, go where they choose, or socialize with who they want ‘for their own good’. Yes, they end the day unscathed, but at the cost of feeling unsupported and unfulfilled,” she says.
There are some physical risks involved living in free-range memory care community models like United Active Living. But there are rewards too. Individuals maintaining their freedom to choose and to live life on their own terms frequently results in people who are experiencing dementia reporting less anxiety, reduced resistance to change, and the opportunity to learn and grow at their own pace, on their own terms.
There might even be plants.
About United Active Living
United Active Living is a private senior retirement community that is designed for a variety of lifestyles including independent living, licensed assisted living, and memory care. At United, you live your life your way – our purpose-built communities allow you to focus on who you are and what you want in every step of your post-retirement journey.
Speak with one of our active living advisors about life in a United community. They can arrange tours of our Garrison Green and Fish Creek communities. If you know a friend or family member who could benefit from living in a United community, send them a link to our website or blog, or arrange a future visit. We are happy to help!