When speaking with family and loved ones of people with dementia or cognitive impairment, I often find myself using cognitive development and decision making abilities in children, adolescents and adults to explain to them how capacity changes based on the complexity of the decision at hand, the environment they are making the decision in and the overall risk to their health and safety. There are many similarities that can be noted if one considers the dementia process to be not unlike the reverse of the child development process.
Legal Capacity or mental capacity deals with the ability of a person to make decisions. Designated Capacity Assessors, such as myself, are frequently called upon to conduct capacity assessments. A legal or mental capacity assessment follows the definitions outlined in the Substitute Decisions Act, 1992. It is NOT a functional test, NOT a physical test, NOT a test of someone’s ability to “do” something, It is a test of their cognitive and mental ability to “Understand” the facts of their situation AND to “Appreciate” the risks, benefits or consequences of their decision or lack of decision. It is a “Think” test, not necessarily a “Do” test. It is a reasoning test.
To give you an example. George is a 70 year old man who was paralyzed from the neck down in an accident when he was 45. George is 100% dependent on others to “Do” everything for him. He has to ask for help to feed him, dress him, bathe him, transfer him, pay his bills and complete his income tax returns. Despite being 100% “Physically” and “Functionally” dependent on others, George has all his mental faculties. He is 100% able to delegate to others and to ask for the supports he needs. He has the “Mental” capacity to direct his own care. He can tell his wife that he does not feel like eating chicken for supper, he can ask his bookkeeper to track and organize all his receipts and review his financial documents, he can read his bills and arrange for payment by the due date, he can tell the support worker that he would really rather wear the blue t-shirt instead of the red sweater today and he can drive his power wheelchair down the street and go to Tim Hortons for coffee with his Veteran buddies. George has mental capacity, even if his body is not up to the tasks.
Let’s consider how babies, adolescents and adults develop decision making skills and how parents and caregivers manage their changing capacity to make their own decisions and how the decision making process changes over their growth:
No surprise, babies and toddlers are 100% dependent on adults. They respond reflexively and with only the most basic survival instinct of wanting food and warmth.
Property / Finances: Unable to read or do any math – adults make all decisions and child has no knowledge or understanding
Health: Not able to express what is wrong. Dependent on adults to watch behaviour and emotions to determine what is wrong.
Safety: No knowledge of what is dangerous or that he or she can be hurt. Adults use baby seats, baby gates, plug covers…. to protect them – whether they like it or not. We do what is necessary to protect them.
Shelter: No knowledge or understanding of where they live. Only can express like or dislike, comfort or discomfort.
Clothing: No knowledge of weather or sun safety. Express like or dislike of that hat or the mittens or clothes in general, but adults have to dress them in what they feel is most appropriate. Again, even if baby screams and takes that hat off, the adults dutifully put it back on, or find a way around it by moving indoors or into the shade.
Nutrition: Able to express likes and dislikes by spitting out those green beans or throwing the mashed potatoes. Adults will have to compromise if baby simply refused to eat those green bean by choosing something else that is comparable, but more accepted by baby.
Hygiene: No understanding of hygiene issues or reason they need a bath. Adults have to monitor and address these needs in best interest of the child.
By the time kids are in their tweens and teens they are starting to develop a mind of their own. The adults are still “in control” but have to set limits, encourage good decisions, discourage bad decisions and generally supervise most of the times. Independence grows in small steps, often by trial and error of adults allowing them more freedom. The adult is still responsible if it all goes wrong.
Property / Finances: Money skills are developing with allowance or small sums but tweens and teens are predominantly motivated by “want” as opposed to “need.” Kids are starting to learn the value of money and to understand on a basic level that money is necessary to buy goods and services. Most cannot be “trusted” to have credit cards, nor do they have the cognitive skills to make loan payments or pay bills.
Health: Tweens and teens can generally tell you where it hurts or describe what they are feeling. They may or may not have the terminology to say they have “The Flu” but are able to tell adults they are hot and their throat hurts and their nose is stuffed up. They rely on adults to interpret these symptoms and to provide a plan for treatment and/or seek help when it is appropriate.
Safety: Tweens and teens typically have preliminary safety knowledge. They know it they cross the street without looking they could get hit, but they still might lack the impulse control or the processing speed to react quickly, such as when the ball rolls onto the street and they chase it. Tweens and teens may be able to “talk the talk” but not “walk the walk” in an emergency. Knowing that smoking is bad for them is not the same as refusing to try smoking when a friend offers a cigarette.
Shelter: For the most part kids only insight into shelter comes from comparing where they live to where other people live. Kids do not have the insight or the awareness of much beyond what they have seen and experienced in their life. Total dependence on adults.
Clothing: Tweens and teens are developing their own style and preferences. They may challenge the input of adults. However, tweens and teens may be more concerned with peer pressure or how something looks than about whether it is appropriate for the weather. Running shoes in winter is a good example. Adults pick their battles based on the teen or tweens safety and health – The adults must weight the risks and push forward or back off accordingly.
Nutrition: As above – tweens and teens likely have basic knowledge of healthy and unhealthy choices, but if left to their own devices may eat McDonalds 7 days per week. Kids have more input into meals by expressing their likes and dislikes. Adults decide to either accommodate, negotiate or to try to force them to eat. “You sit at that table until you have eaten your brussell sprouts” vs “You don’t like brussell sprouts? Ok, here is some corn instead.”
Hygiene: Teens and tweens again likely understand that they “should” brush their teeth wash their hands and shower now and again. However, whether they actually follow through and do it consistently is another story. Parents have to pick teaching moments and decide the level of importance in demanding they comply. “You have to brush your teeth three times a day, I just spent thousands on your braces.”
Property/Finances: By early adulthood we expect that the majority of people have some financial literacy. They may have have been earning money and deciding how to spend it. Some have been responsible for buying groceries and living within a budget, some are paying rent or car insurance or cell phone bills. They are still learning how to be an “adult” and may still turn to other adults for support, encouragement or assistance. By early adulthood most adults have some bills to pay, some source of income and are planning for the future in terms of education, securing a job, buying or renting and apartment or house, getting married or getting a car. By age 18, a young adult is legally responsible for their actions and typically will be expected to face the consequences if things go wrong. They very likely still need support and assistance, but ultimately the decision lasts with them about whether they buy that expensive video game console or spend a couple thousand going on vacation at spring break.
Health: By age 16, it is expected that young adults can have a reasonable conversation with their medical providers and answer for themselves. They may still want, or invite their adults to participate, or they may want their privacy. Either way by young adulthood people are expected to be able to seek out help appropriately and to discuss and consider their options for treatments. They are totally within their rights to make different choices than the older adults in their life and will have to live with consequences if they understand what those consequences are.
Safety: Young adults are still maturing and may still may impulsive or foolish decisions. Peer pressure, alcohol, drugs and experimentation are all potential triggers to bad decision making about safety. Parents of young adults can offer advice, perspective or recommendations, but cannot control the activities or the behaviour of a capable young adult. The adults have to decide how aggressive they are going to be in offering advice or suggestions or orders – ultimately the young adult can accept or ignore that advice.
Shelter: Young adults are exploring their options and alternatives. They are expected to make decisions and live with the consequences. Older adults can try to provide insight and offer the benefit of life experience, but ultimately, young adults are expected to be able to look at their options, consider the pros and cons of their choices and to pick a place to live accordingly. This starts to involve more complex reasoning when it overlaps with other categories – choosing a house or apartment will also have financial implications and/or safety implications or health implications.
Clothing: By young adulthood capable men and women choose what they wear and when they wear it. Mom’s and dad’s might be able to enforce “No hats at the dinner table” in their house, but once they young adult is out of sight, anything goes. They decide if they leave their hat on or off to eat at the table. They have to weight their options, consider the risks and make a choice – hat on or hat off.
Nutrition: As above, young adults for the most part are not under regular adult supervision. If they do their own shopping and buy their own meals then it is expected that they have knowledge of health nutrition. They can choose to take the risk and eat French fries every day. It is their choice. Adults can provide guidance and feedback, but have not control over the final decision.
Hygiene: As above, young adults are expected to understand why hygiene is important and when hygiene is important. Still, knowing is not necessarily doing. They will have to deal with the consequences if that really cute guy or girl comes by when they are unbathed and wearing dirty clothes.
When considering whether someone with dementia or another cognitive impairment has capacity to make their own decisions, it sometimes helps to consider if their recent actions and behaviour are more similar to the baby/toddler, the tween/teen or the young adult. Not in a literal or a derogatory way, but in a way to frame it in your own mind. You may look at your loved one with dementia and think to yourself, “You are behaving like a toddler,” or “Your a behaving like a teenager.” Sometimes they are behaving like a young adult, but you don’t agree with their choices. Maybe they need some support or supervision to consider options or alternatives that would make their decisions less risky. Parents say to children all the time, “Act your age.”
For seniors with dementia or cognitive impairment, their ability to make decisions may seem to be moving backwards. Ask yourself, “What age are they acting?” You may be better able to respond to them in way that meets their need for support at that particular point in time, but does not overstep into controlling or placing limits on their autonomy.
- You can pick a screaming two year old up over your shoulder and carry them out of a situation. You cannot do that with a severely cognitively impaired, confused or disoriented adult who is acting out because he or she has forgotten who you are or where they live or whether they have taken their pills or eaten today.
- Your teen or tween learns from example, trial and error and often benefits from quiet reassurance and support in the background rather than orders and ultimatums. Your moderately cognitively impaired loved one may also rebel at attempts to control or dictate how things need to be done.
- A young adult has learned a lot, but still has more to learn about the complexities of their options and needs. They cannot know everything, but hopefully they know how, or where, to find the information or the support that they need to grow and learn. An adult with mild cognitive impairment still has many skills and many things they can do, but they too may need support and supervision for the more complex tasks if they have forgotten how to do them.
An adult with diminishing capacity, such as in dementia, needs progressively more support over time. The progression is very similar to looking at child development, in reverse. A child growing and developing into an adult needs progressively less support. If we all try to offer support and reassurance to those with diminished capacity based on the age they are acting, perhaps we can provide the right amount of support, at the right time and to address the right issues.