Staying Independent as an Older Adult: The Challenges
Staying "Independent" as long as possible is one of the most important priorities for many people as they age. But what do older adults really mean when they talk of being "independent", and what are the obstacles to staying independent?
At first blush thus seemed like a straightforward question. We set out to understand the obstacles to remaining independent as we grow older — with a longer term goal of seeking solutions. The more we learned, the more we realized this is a much more complicated topic than it seemed.
This exploration summarizes what we learned.
About this Exploration into Older Adult Independence
This is part of a larger piece of work we are thinking of as "Tools for Staying Independent".
In a series of group explorations during 2017 four of our Longevity Explorer circles set out to identify just what the obstacles are that get in the way of staying independent. We framed the discussions with these two questions:
- What gets in the way of staying independent?
- What are we scared of that could rob us of our independence?
The audio discussions themselves are on the right hand side of the page (if you are reading this on a desktop), or below (if you are reading on a mobile device or tablet).
In what follows we have synthesized the discussions, and tried to extract the key points. But if you want to hear the emotions, and get the real color behind our summary or more detail, the discussions are worth a listen.
This synthesis of our explorations was prepared by Dr. Richard Caro, who led each of the group discussions. If you have comments or questions, feel free to add them as comments at the bottom of this page.
What is Independence?
In the very first discussion, one of the explorers said:
"You really need to talk about what it means to be independent, because it means quite different things to different people".
And she was right. As we talked and discussed this, it became clear that there are multiple levels of independence. And that maybe in many cases the word independence was not even what matters most. But rather autonomy and self determination.
The Clinical Definition: IADL's & ADL's
Of course there is a whole ecosystem that deals with caring for older adults, and which has its own definitions of independence and of independent living. We don't want to ignore that, although as you read on you will see it is not the only way to think about independence.
But the clinical approach to thinking about independence involves a set of specific Activities of Daily Living (ADL's: activities related to personal care such as bathing, getting in and out of bed, walking, using the toilet, and eating), and Instrumental Activities of Daily Living (IADLS: activities related to independent living, such as preparing meals, managing money, shopping for groceries and personal items, performing housework, and using the telephone).
According to this way of thinking, if you can handle all ADLs and IADLS yourself without help, you are definitely independent. As you need more and more help with IADLs and ADLs you reach a threshold after which you are no longer classified as "Independent".
In other words, it is about how much help you need with the basic activities of life.
Autonomy & Self Determination
As we explored this, it became apparent that there is a different way to think about independence. For many explorers, when they think of "Independence" what they are really wanting and talking about is a certain level of autonomy and self determination.
So an older adult might need quite a bit of help with some of the activities of daily living. But if their life is organized so that the help (person or machine) is available as and when needed, and the older adult can pretty much get done whatever they want to get done when they want to do it, that is actually quite a high level of autonomy.
In contrast, if that same person needs to wait until the helper is available, and adapt to the schedule of that helper, then that is going to feel quite a lot less "independent". The example below of "driving" is a good illustration of this idea.
Safety vs Autonomy
One of the most interesting aspects that emerged from our explorations was the interplay between safety and autonomy. As explorer Eric explained, "some people are so fixated on safety that it can get in the way of living life". He went on to illustrate this with the example of people who liked the idea of putting cameras everywhere in a residence for "independent" older adults. On the one hand this might increase safety (think early fall detection). But on the other hand, is life worth living if you are under constant surveillance?
Obstacles to Independence
At each of the four circle meetings where we discussed this, there were some challenges and things people worried about that came up every time, and seemed agreed on by most.
- Physical Health (of various sorts)
- Mental Health
Then there were a number of other obstacles and things to worry about that explorers flagged, and some of them might be even more important than these first three. They include:
- Running out of friends / Loneliness
- Will Power & Attitude
- Energy Levels
- WHO will you be dependent on?
- Cooking & Eating
Below we summarize briefly what we have learned about each of these as it pertains to independence. There are some interesting nuances.
There was a strong argument to be made that money was top of the list in terms of obstacles to staying independent. Certainly the flip side of this was that if you have tons of money you can get all sorts of personalized help which helps retain autonomy.
In the absence of sufficient money, people worried they would have to move to a less favoured town or less desirable location, and that they would be less able to participate in social events that might cost money. And that without adequate funds they would not be able to access sufficient help to "stay independent".
2. Physical Health
Physical Health is clearly one of the primary causes of loss of independence.
Near the top of many people's list was a concern about falling. It is not the fall itself that matters so much, but rather the consequences. People worry about a broken hip — often leading directly to greatly reduced mobility if not worse outcomes. Or hitting one's head.
Because falling is so prevalent among older adults, and because there is quite an industry that has arisen to warn people of the consequences and try to help prevent them, this was high on many explorer's lists of potential obstacles to independence and things they worried about.
Lack of mobility, whether after a hip fracture or as a consequence of various other conditions, can be a significant barrier to independence. If you can't get where you want to go when you want to go there, that can be a major lifestyle limitation.
2c. Hearing and Vision
Surprisingly, this did not come up as frequently as some of the other items on the list, but when it did come up people agreed that poor vision and poor hearing could be major impediments to independence.
3. Mental Health (Dementia)
Cognitive impairment and dementia came up frequently. Scary to many.
4. Running out of Friends / Loneliness
A common theme of aging is the idea that eventually you "outlive your friends". Along with this is the fact that many people find it increasingly hard to make close friends as they grow older.
But as one needs more and more help with the activities of daily living, whether or not one has a stable of friends available to share the burdens can make a big difference.
This led to some very interesting discussions of the benefits of community life as a way to avoid social isolation and loneliness.
Especially in North America, much of life requires getting from place A to place B by car. When you can't drive anymore, this means that simple activities like going grocery shopping can become much harder. Socializing becomes harder.
It's all very well to say there "should" be readily accessible public transport. But often there is not. So no longer being able to drive can be a big obstacle to independence.
This can be offset if you have tons of money of course. Think endless taxis, or even a personal driver.
And most recently, technology and ride sharing are riding to the rescue here. With Uber or Lyft, suddenly the older adult can go where they want when they want (thus regaining autonomy). [Of course you need to live somewhere they have these services, and have enough money to use them.]
6. Will Power & Attitude
Many of our explorers pointed out that staying independent took significant will power. When parts of the body are hurting, it takes will power to go out and engage with the world. And to overcome possible physical challenges.
7. Energy Levels
A common theme: "We just can't get as much done in a day as before". So activities of daily living that used to fit easily into a day start to loom large.
8. WHO will you be dependent on?
Some of our explorers worry about who exactly they are going to rely on in the future when they need help. Trust, and who deserves our trust, are important themes.
Some worried about whether political changes would lead to things like loss of medical insurance or loss of social security / pensions. Although most felt this was unlikely in the lifetimes of this group of explorers.
10. Cooking & Eating
Some saw these as necessary evils, and some as pleasures to be endulged in on occasion. The key seemed to be arranging life so that meal preparation was not a burden.
Not being able to feed yourself was of course one of the physical health challenges that could impact independence largely.
Add your thoughts
We would love to hear your thoughts on the answers to our two framing questions.
- What are you most scared of that could rob you of independence? and
- What gets in the way of staying independent?
Please share your thoughts using the commenting link below.
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Discuss, Comment, Ask Questions
Comments, Questions, Discussion
from Msdarvin7@gmail.com (member) at Jun 12 2018 - 10:15am
A point for me and my husband is giving up the longtime family home. We have two homes. One up north where our children live and where we lived and inevin florida. We are anowbirds andcien both homes. The older home is where we spent our lives cbur not that practice now. Has stairs very large and climate very cold die 7 months of year. But hard to give up. So we go back and forth which has become a physical and emotional and maintenance burden
from Rich16Freedland (member) at Feb 12 2018 - 12:51pm
I found it interesting that under Physical Health, the discussion mentioned falling, mobility and hearing/vision. All three of these issues can be affected by medication yet adherence is seen as a "given." Unfortunately, research ranging from NIH to CVS indicates that medication adherence is well below 50% for adults.
from Richard-Caro (member) at Feb 12 2018 - 2:11pm
Hi Rich: Interesting point. I reflected on this and have a few comments.
First, remember that what we tried to unpack here were the opinions of older adults themselves about loss of independence and what they were worried about. It is true that adherence did not seem to come up. That does not mean it is unimportant of course. Just that they did not feel it was one of their hot buttons in the context of independence.
Second, I have the impression that often when poor medication adherence leads to loss of independence there is some type of underlying cognitive issue. And the explorers certainly flagged cognition as a hot button.
Finally, the topic is "independence". I suppose there is a school of thought that says that if you wish to be non-adherent to a drug regimen, that is still being "independent".
Maybe a reframing of the point I take away from your comment is that lack of medication adherence (which the literature tells us is common) can sometimes lead to a decline in health that in turn can lead to loss of independence.