No One is Telling Seniors or Their Caregivers What to Expect with the Aging Process

Anticipatory Guidance Can Help Decrease Both Senior and Caregiver Stress

Senior caregiver stress and burnout is rampant. Caregiving is a difficult job and one that seems to happen slowly but surely until you find yourself knee deep in it. One of the reasons caring for a senior is difficult because it is hard to know what to expect. No one helps you understand. 

When you take babies in for checkups they tell you what developmental milestones to expect. For example your pediatrician will say “by your next visit baby will be rolling over/should start babbling/taking first steps, etc”. 

Menopause is another stage of life that approximately half the population endures, but for a long time, there was no guidance about what to expect. That is starting to change, though, with more healthcare providers working to prepare women for what they might experience as they head into menopause. 

This type of education from a healthcare provider to a patient is called anticipatory guidance and I think it’s critical for ALL major stages of life. And we need more of it in healthcare. 

Anticipatory guidance is a term coined in healthcare in the 1950s from the American Public Health Association for the purpose of “teaching the mother what to expect before she begins to worry or make mistakes.” It’s not a perfect system as there are lots of unexpected things that pop up. The beauty, however, is that you can also tell people to anticipate the unexpected! Planning lessens anxiety for a lot of people. And you know who is anxious? Seniors and their caregivers, that’s who. Aging isn’t easy, it’s not cheap and there isn’t a way to avoid it. But no one is telling seniors or their caregivers what to expect as they age. 

I was super excited about delving into why this is, and how it can be remedied. I started writing down my thoughts thinking what a great blog post it would make.  Two days later The Washington Post published a very good piece on this very subject. Curious how they broke into my mind to extract my thoughts but musing on that is for another day. 

The  WaPo article focuses more on what an individual can expect such as hearing, sleep and cognition changes. It rightly calls out the disproportionate amount of literature focused on how to prevent aging, instead of helping folks prepare for the inevitability of it. I’d like to take this further. 

Our society has made a lot of progress in recognizing, acknowledging and accepting the struggles people have with mental health. Is it perfect? Absolutely not. But is it better than it has ever been? I would say yes, absolutely. My hope is that we can do something similar with the aging process. We spend so much time fighting aging, avoiding death, avoiding even talking about end of life and death. And for what purpose? We are all terminal. It simply cannot be avoided. But talking about this stuff is hard. It makes us nervous for a million reasons. Think of all the variables:

• Some (most?) people fear death and dying. 

• They’re afraid of the associated costs and our parents' generation hates talking about money! 

• Is there family around to help?

• How healthy are your family dynamics?  

• Who is the most likely caregiver? Is that person willing to do the job? 

• What if your parents are divorced? 

• What if you don’t get along with your senior? 

• What if you do get along with your senior? 

• What if the money runs out before the end of their life - how does this even work? 

• Does Medicare pay for any of this? 

• Is your senior willing to discuss these realities? 

This, of course, is far from a complete list. Someone please get each of us a weighted blanket and a cold pack for our heads before we continue. 

When something seems overwhelming and insurmountable many people avoid doing the thing. And preparing for the last years of a person’s life is about as overwhelming as you can get. If people could have, at their fingertips, easy-to-understand guidance for some of the myriad issues associated with aging, they would feel a lot less scared and helpless. People might fear aging less and caregiver stress would perhaps improve. We have a lot of generic guidance but it and I’ve been reflecting on why this is. Here is what I have come up with: 

Seniorhood is about as heterogeneous as it gets. 

Chronologically we all age the same, but the variations in health and fitness are great. My parents seemed about 90 when they were 75. Some 80 year olds are out riding their bikes like people half their age. 

There are multiple paths to the end of life care and they are often dictated by money, geography and family dysfunction. This is difficult to anticipate and therefore difficult to help people plan for. Some people age in their homes, some people end up in assisted living and nursing homes. 

More and more is being written about aging well. There is a lot of focus on diet, exercise, fiber, stretching, spending time with people, exercising your brain with complex challenges. I am happy that we are starting to see much more focus on not just how long we live but how well we live. This is called health span. Lifespan refers to the number of years you live. Healthspan, by contrast, is about the duration of a person’s life during which they are generally in good health. This graph explains it nicely:

So does this one:

And you know what? That brown rectagular strip on the bottom graph explains why seniors and their caregivers are struggling so damned much. People tend to spend the last decade of their life burdened with disease or poor quality of life. Ten years is a long f-ing time. It’s why, when you hear about someone dying suddenly in their later years, after the expressions of sadness and surprise, you also hear things like “that lucky SOB,” especially from fellow older folks.

Disease Progression is Not Always Predictable

Some diseases like diabetes, certain cancers and hypertension have been studied so much that there is a fair amount of predictability to them. At least with some aspects. Once you are diagnosed with diabetes I can tell you what needs to be done to manage your blood sugar, protect your heart, skin and eyes and I can also tell you what will happen if you don’t manage it well. If you have atrial fibrillation I can tell you that it’s important to make sure your heart rate is under control, how we decide if you need blood thinners and what can be done if we can’t control the arrhythmia. 

Outside of this, my friends, it gets murky fast. Signs of dementia can also be signs of a brain tumor or a urinary tract infection. Throw in 2 or more chronic conditions at once and it gets even murkier. 

Even things that tend to have stages are messy. The stages of dementia might happen in a certain order but the time between stages can vary a lot!  Sometimes onsets are sneaky- you don’t really know what is happening. There are so many reasons for confusion in seniors- sometimes it’s an infection, sometimes it’s dehydration, sometimes it’s a stroke and sometimes it’s the next stage of dementia. That really narrows it down, right? Sigh….

This variability makes it difficult for healthcare providers to explain what and when things will happen. 

The Healthcare Industry….Isn’t Great

I’m not sure if everyone knows that the healthcare system in America is more focused on specialty care than preventative care.  Specialty care accounts for the majority of healthcare activity among Medicare beneficiaries. The amount of healthcare dollars spent on primary care is shrinking even though we know that primary care has been shown to improve population health. Primary care providers and Internal Medicine physicians are endangered species because these jobs don’t pay as well. Many doctors feel compelled to go into specialty care because of attractive salaries with which to recoup the costs of medical school. The majority of older adults have two or more chronic medical conditions and primary care providers rely on specialists because

1) there aren’t enough primary care folks to manage all that a patient needs help with and

2) specialists are best poised to be up to date on the latest and greatest ways to manage conditions within their specialty. 

Additionally, the current healthcare landscape has made it hard for a neighborhood doctor’s office to survive. These clinics are mostly eaten up by larger hospital systems. This, in tandem with emphasis on specialty care all but ensures healthcare providers usually don’t know their patients’ lives as intimately as they once did. Because of this it can be difficult to detect subtle changes in patients. Also, healthcare providers don’t always know which relatives are involved in which aspects of taking care of their patients. There is more pressure to squeeze many patient visits into a single day so visits are shorter and it’s harder for healthcare providers to get to know their patients.

The Way We Live Our Lives Doesn’t Help us Manage The Aging Process

The loss of the multigenerational family living situation also contributes to caregiver burnout for those caring for seniors and (children).  Simply put, there aren’t built-in caregivers anymore. It’s not as common to have grandma living with the family and helping with childcare and then transition to grandma needing care provided by the younger generation. Although the share of the U.S. population in multigenerational homes has more than doubled, from 7% in 1971 to 18% in 2021, only about 5% of multigenerational households consist of grandparents and grandchildren younger than 25. Of course, this varies greatly with socioeconomic status, immigration status, race and gender.

Lots of grandparents feel they did the hard work of raising their kids and they don’t always want to help with the daily grind of parenting their grandkids. Sometimes they are holding down jobs themselves and don’t have the bandwidth to watch young kids.  In turn, sometimes the kids feel bitter that they didn’t get help and they in turn don’t want to help their parents as much as they are seeing some freedom as they emerge from parenting during the little kid years. Also, it’s common for two- parent households to see both parents working and in single-parent households many times the single parent holds more than one job. Parents are tired from parenting their children while working and trying to save money to pay for necessities (let alone treats)- throw in caring for an aging or unhealthy parent on top of it (for a decade!) and BOOM- you just want to crawl into your bed and not come out. 

Now throw in siblings. This multiplies the multigenerational factors.

Does anyone need a drink yet? I do. And my parents have already passed. 

So how on earth do we start to tackle this? I can’t offer an exact path but I can offer some guiding principles. Thinking of a plan for someone who is aging makes me think of a birth plan. They work best when you consider the big picture- what is really important to you overall and how you want to stay true to this. This can help guide the decisions. Whenever possible people will want to follow exact wishes but in the event this can’t happen how do we stay true to the overall mission? Tune in next week for the second part in this series