The Geriatrics For Caregivers Blog

Learn practical ways to improve the health and wellbeing of older adults!

Written especially for family caregivers of older adults, but useful for all who want to learn how geriatricians help aging adults.

5 Tips to Help You With End-of-Life Planning

by Leslie Kernisan, MD MPH

Living wills. Advance directives. Powers of attorney for healthcare. Making your wishes known.

Many older adults have never gotten around to addressing these issues.

Others are overdue for a review. After all, this is not something where you should “set-it-and-forget-it.” Especially not if you completed the paperwork with a lawyer years ago, and have experienced changes in your health since then.

In previous posts on this site, I’ve shared two true stories about older adults facing health crises, and possible end-of-life situations. (See here and here.)

In both situations, the older person and his/her family had to weigh their options. We also helped them consider the benefits versus the burdens of the choices available.

It is these kinds of situations that advance care planning is supposed to help us — patient, family, healthcare providers — prepare for.

But I know that many older people haven’t gotten around to completing — or revising — their advance care planning. Which is a shame, since this will make it harder for their family and doctors to provide the right help if a medical emergency arises.

So in this article, I’ll try to make this process easier for you and your family. Here’s what we’ll cover:

What is advance care planning,
The four key steps that should always be part of advance care planning,
Five tips to help you — or your older parent — address advance care planning.

I’ll also tell you about some of my favorite resources available to help seniors with all of this. These can really make it easier for older adults to sort out what they want, and have the necessary conversations with others.

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A Trial of ICU Care: a true end-of-life story

by Leslie Kernisan, MD MPH

This month I am featuring a series of posts about aging, health crises, and (possible) end-of-life situations. Earlier this week, I shared the story of Mrs. F, a very ill older woman with cancer who said she didn’t want to go to the hospital, even though she wasn’t on hospice.

Now, I want to share another true story, about a nonagenarian with cancer. He was DNR and we had planned for comfort care once his symptoms got worse. But when he fell dangerously ill, I ended up advocating for him to go to the Intensive Care Unit. Below is the story, with tips for caregivers at the end.

[This story was first published in 2010, on Caring.com’s Older Patients Wiser Care blog.]

The case: An unlikely candidate for intensive care

Some people in their 90s are lucky enough to still be strong and independent, but Mr. H wasn’t one of them. He’d been wheelchair-bound ever since a bad hip fracture a few years prior cost him his ability to walk. He also had mild dementia, which made him somewhat forgetful and disorganized.

Nonetheless, this WWII veteran was a perennially cheerful presence in our VA’s Nursing Home Care Unit, always eager to join in on activities and outings. “Thank God for the VA!” he’d tell me when I’d come see him for his monthly medical check-ups.

But his smile faded the day we explained that we’d discovered a colon cancer, which had spread to his liver.

For years, Mr. H’s records showed he wanted do-not-resuscitate/do-not-intubate (DNR/DNI). Now that he had advanced cancer, he and his son asked that all future medical care focus on maintaining comfort, function, and quality of life for as long as possible. Treatment of infections was okay if we thought there was a good chance of success. And they wanted to consider hospice once Mr. H was having more pain or other end-of-life symptoms.

Being the cheerful and forgetful type, Mr. H was soon back to his usual activities in the nursing home. Over the next three months, we all practically forgot he had advanced cancer.

That is, until the day that nurses found him weak and feverish in bed, with low blood pressure. The ER doctors found that Mr. H had a bad urinary tract infection (UTI) and IV antibiotics were started. When his blood pressure continued to drop, the Intensive Care Unit (ICU) team was called: When bad infections cause life-threatening low blood pressure, patients need ICU care.

The ICU doctor, however, balked. “He’s very old, has metastatic cancer, is DNR/DNI, and from his chart it looks like his family doesn’t want any invasive procedures. So he’s not appropriate for the ICU.”

In his gurney, Mr. H looked at us quizzically. Despite his very low blood pressure, he was still awake and weakly smiling. But without special blood pressure medications (known as pressors) only available in the ICU, the medical staff knew it was incredibly unlikely that he’d survive this common infection.

The challenge: It’s not always easy to turn goals and care plans into actions

The ICU doctor had a legitimate point. The goals of Mr. H’s medical care were supposed to be maintenance of comfort, function, and quality of life. For elderly people with advanced cancer, who are unlikely to live more than several months no matter what medical care they get, ICU-level care generally doesn’t help advance those goals.

Still, I found myself hesitating to switch to comfort care. Despite his many medical problems, Mr. H had been maintaining his function and his quality of life. Like many people with advanced illness, Mr. H had said he’d prefer to be treated for reversible medical problems, such as infections, especially if the chance of recovery were good, and the treatment wouldn’t be too burdensome. I felt that with pressors and antibiotics he had a decent shot at recovery from his UTI.

The catch was that Mr. H had more than a garden-variety UTI. Whereas many UTIs can be treated with oral antibiotics, Mr. H’s infection had spread to his bloodstream. To treat it, he would need to have a central catheter threaded into one of the big veins of his neck or groin; it’s not possible to give pressors through the more common small IVs that are placed in the hand or arm. But would he find a central catheter, and ICU care, too burdensome?

“Ask him what he thinks,” said the ER doctor.

“You’re my doctor. I trust you to tell me what to do,” quavered Mr. H.

The solution: A limited trial of intensive care to balance the benefits and burdens

We were running out of time to discuss: Mr. H’s blood pressure kept dropping. I called his son. “Normally I don’t recommend ICU care for people of his age and medical condition,” I said, “but in this particular case, one reasonable option would be to try 24 to 48 hours of ICU care, to see if we can turn him around. He might get better. But if he gets worse, we would make him as comfortable as possible until he dies.”

The son agreed, and Mr. H was whisked up to the ICU.

The next day, I found him sitting up with a breakfast tray, his central catheter taped to the side of his neck. After 12 hours of pressors and antibiotics, his fever had gone away, and his blood pressure had improved to the point he no longer needed the pressors.

“The nurses have been nice but I don’t like it here,” he complained. “Can I go back to the nursing home today?”

Three days later, Mr. H was discharged back there, where he re-engaged in his favorite activities and remained active for another 10 weeks. Eventually he became weaker and was transitioned to hospice.

He died peacefully in his bed, five months to the day after his admission to the ICU.

My take-home points for family caregivers:

Be sure to re-address goals of care after a new major medical diagnosis or significant chance in health status.
Know that even among people with advanced illnesses, it’s often reasonable to treat reversible medical problems such as UTIs, especially if the treatment isn’t too burdensome and there’s a good chance of recovery.
Understand that sometimes it can be hard to figure out just what is “too burdensome.” Reasonable doctors sometimes disagree about how good the chance of recovery is.
If you and your loved one have agreed on a care plan focused on comfort and quality of life, expect that sudden illnesses or other declines in health will need to be discussed as they come up.
It’s often reasonable to try a time-limited trial of more intensive treatment, with a plan to reassess within a day or two.

Have you ever struggled with how to manage a health crisis in a frail older person like Mr. H? I’d love to hear from you in the comments section below.

The Power of Offering Alternatives: a true end-of-life story

by Leslie Kernisan, MD MPH

How might we help a sick older person have a better end-of-life experience? Planning for future health crises and end-of-life situations — a process known as advance care planning — is certainly important.

But, not every health crisis can be completely planned for. And it’s often hard, in the moment, for family members and doctors to figure out how to honor a person’s wishes. Below, I’d like to share a true story about a dangerously ill older woman, who wasn’t on hospice but said she didn’t want to go to the hospital.

The case: To ER or not to ER?

As I puttered around my house one Saturday morning, my pager went off. “Dr. Kernisan? This is Tina from the nursing home. We’re calling you about Mrs. F. She’s 78 and has a diagnosis of advanced lymphoma. She’s been anemic and just got a blood transfusion again a few days ago. She’s now very weak, pale, and her blood pressure is low. Her poop looks red.”

Although by then I had fired up my computer and was remotely logging in to Mrs. F’s chart, this sounded like a no-brainer. I didn’t know Mrs. F personally, but that weekend I was on call by phone for our medical group’s nursing home. From the brief description, Mrs. F sounded critically ill, and was probably bleeding internally. She needed hospitalization ASAP.

“But she says she doesn’t want to go to the ER,” the nurse continued. “She says she hates the hospital and wants to stay in the nursing home.”

This stopped me short. “Is there an advance directive in her chart? Is she usually able to make medical decisions?” I asked.

“It says she is DNR, but it looks like that was just decided a few weeks ago. It says transfer to the hospital is ok. It looks like she’s been offered hospice, but she hasn’t signed up for it. She does usually make medical decisions.”

I frowned at my computer screen, scrolling through Mrs. F’s chart. She definitely sounded dangerously ill. She had to be hospitalized, probably in the Intensive Care Unit.

Or did she?

[Read more…]

5 More Treatments You Should Question in Older Adults

by Leslie Kernisan, MD MPH

Last week, I wrote about the first Choosing Wisely list of 5 treatments that older adults and their doctors should question.

In this post, I’ll cover the 2014 Choosing Wisely list for healthcare in aging adults, which was released by the American Geriatrics Society (AGS) this past February. This 2014 edition of things to question include:

The most popular class of medications prescribed for Alzheimer’s and other dementias,
Breast, colon, and prostate cancer screening,
A common approach to weight loss and poor appetite,
The prescribing of additional medications,
A common — but risky — approach to handling confusion during hospitalization.

As I explained in my last post, Choosing Wisely is a health education campaign meant to help patients and their doctors more easily spot common tests and treatments that are often overused.

For the Choosing Wisely items selected by AGS (my specialty society), I’d say the real problem is that these are healthcare interventions that are usually used before safer alternatives have been tried.

Many older adults and their caregivers are never told that a safer alternative exists. People often also have an overly optimistic understanding of the likely benefits, but haven’t been properly informed of the risks.

Aren’t doctors supposed to offer the safest alternatives first? Of course they are. However, many doctors haven’t been trained in modifying healthcare to better fit the needs of aging adults. And it’s often hard for a busy clinician to keep up with the latest recommendations from experts in geriatrics.

By learning about the Choosing Wisely recommendations, you can prepare yourself to be a “smarter” patient or caregiver, and you can be more proactive about making sure the healthcare you get is a good fit for your family’s needs. That’s why Choosing Wisely is supported by Consumer Reports, which makes the recommendations available on their website.

In this post, I’ll review the 2014 list of five Choosing Wisely items that older adults — and their families — should question. I’ll also share some tips for caregivers, related to each item.

Five (More) Things to Question for Healthcare in Aging Adults

1. Don’t prescribe cholinesterase inhibitors for dementia without periodic assessment for perceived cognitive benefits and adverse gastrointestinal effects. In other words, after starting a dementia medication such as donepezil (brand name Aricept), don’t forget to follow-up! You’ll want to make sure that the drug is making thinking or behavior better, and that the side-effects are tolerable. Other cholinesterase inhibitors include rivastigmine and galantamine (brand names Exelon and Razadyne, respectively).

Why: Although these drugs are often prescribed in Alzheimer’s, clinical studies suggest that the likely benefits are smaller than many people realize. Also, although these drugs may improve cognitive symptoms for a minority of patients, they are not “disease-modifying” and don’t truly slow the progression of Alzheimer’s. (Want to avoid acceleration of Alzheimer’s? See this post.)

A comprehensive review in 2008 described the benefits of these medications as “clinically marginal,” especially since it’s been hard to prove that these drugs improve quality of life or overall life function. Another review calculated that 12 people have to be treated with these drugs, in order for one person to experience marginal improvement or better; the same review noted that about 1 in 12 people will experience a significant side-effect (usually diarrhea or stomach-related).

Because some clinical trials suggest that the drugs work better for some people than others, many experts now recommend a time-limited trial of these medications: if a patient or family notice an improvement, the drugs should be continued. If not, the care team should consider stopping them.

Tips for caregivers: The main thing to realize is that it’s not at all guaranteed that these medications will help in Alzheimer’s. In fact, it’s fairly common for these drugs to seem to have no effect at all, and sometimes they do cause uncomfortable diarrhea or stomach upset. If you don’t see much improvement, know that it’s reasonable to consider stopping these medications, especially if you want to reduce costs or pill burden.

That said, I find that these drugs tend to cause fewer side-effects and risks than many of the other drugs older adults often take; generally the greatest harm from Aricept is to the wallet. Although all medications should come with a plan to assess effectiveness and side-effects regularly, these types of medications are usually lower on my priority list. They likely aren’t helping as much as people think they are, but at least they aren’t very risky. (Whereas antipsychotics and benzodiazepines — commonly used for difficult Alzheimer’s patients — are risky; they are on the original Choosing Wisely list.)

2. Don’t recommend screening for breast or colorectal cancer, nor prostate cancer (with the PSA test) without considering life expectancy and the risks of testing, overdiagnosis and overtreatment. This means that doctors shouldn’t automatically refer older adults for cancer screening. Instead, doctors and patients should consider life expectancy and the risks of screening, before deciding whether to proceed.

Why: Cancer screening is an important part of preventive health. But most people do reach a point at which their age, or their chronic illnesses, make it unlikely that cancer screening will be beneficial. That’s because research suggests that cancer screening is most likely to help those who are likely to live another 10 years or more. Furthermore, screening for cancer does harm some patients, due to overdiagnosis or complications of procedures such as colonoscopy.

Cancer screening used to be reflexively recommended for most adult patients, no matter what their age or health status. But today, experts recommend that people first weigh the likely benefits and risks. This is called individualized cancer screening.

At this time, US Preventive Services Task Force (USPSTF) recommends against routine colon cancer screening in adults older than 75 years. Breast cancer screening is recommended for women aged 50-74.

Tips for caregivers: If your older loved one is older than 75, or is in declining health, be sure to ask questions if cancer screening is recommended without first having a thoughtful conversation.

Wondering how long your loved one is likely to live? A team of UCSF geriatricians offers access to mortality calculators at ePrognosis.org. I find the life-expectancy graphs here to be especially helpful.

3. Avoid using prescription appetite stimulants or high-calorie supplements for treatment of anorexia or cachexia in older adults; instead, optimize social supports, provide feeding assistance and clarify patient goals and expectations. In other words, for older adults who are losing weight or seem to not be eating well, don’t start by requesting medication, or a nutritional drink such as Ensure. Instead, make sure the person gets any help he or she needs with grocery shopping and meal preparation. You’ll also want to talk to the doctor about the health status; if weight loss is due to a medical problem such as depression, or cancer (a cause of cachexia), you’ll need to discuss goals and management options before you turn to stimulants and supplements.

Why: Weight loss and malnourishment are fairly common in older adults, and it’s very important to spot these issues and address them. However, research studies have found that prescription appetite stimulants often don’t provide a lot of benefit, and can cause problematic side-effects. Nutritional supplements such as Ensure or Boost are safer in that there’s usually little risk of side-effects. But comprehensive reviews of clinical research suggest that the benefits are usually slim.

Tips for caregivers: If you’re worried about appetite or weight loss in an older person, start by asking for help assessing the underlying cause — or causes — of the problem. For instance, some aging adults develop difficulty getting and preparing food, due to physical disabilities (such as crippling arthritis) or memory problems. In other cases, the problem is an underlying medical problems, such as depression, heart failure, lung disease, or cancer. You should also make sure an oral evaluation is done; tooth pain or chewing problems can affect nutrition.

4. Don’t prescribe a medication without conducting a drug regimen review. This recommendation is pretty straight-forward. Before accepting a new prescription for a medication, always make sure the clinician has an up-to-date medication list, and has reviewed it.

Why: Polypharmacy (the taking of multiple medications) raises the risk of potentially dangerous medication interactions. Older adults also tend to be more vulnerable to side-effects of medications. A 2011 study estimated that seniors experienced over 250,000 emergency room visits per year, due to medications. People aged 80+ were especially likely to need hospitalization.

Tips for caregivers: This is a common-sense recommendation that can still be tricky to implement, because many clinicians are used to handing out prescriptions fairly quickly. You’ll want to be prepared, by making sure you always have an up-to-date medication list handy. And then be ready to be gently persistent: if the doctor doesn’t ask to review all medications, ask that she does so. You may also want to ask if the new drug is on the Beer’s List of medications to be used with caution.

For tips on maintaining an up-to-date medication list, read this post.

For a link to a free online drug interaction checker, see this post.

5. Avoid physical restraints to manage behavioral symptoms of hospitalized older adults with delirium. This means that if your older loved one becomes confused and difficult during a hospitalization, don’t let the staff tie him or her down, unless all other options have failed.

Why: It’s very common for older adults to develop delirium — a state of worse-than-usual confusion — during a hospitalization. While confused, people may pull at IVs, thrash around in bed, or try to get up when they are too weak to do so safely. This understandably looks dangerous, and historically hospital staff have responded by tying patients’ arms down. However, research has found that this approach does not improve outcomes. Feeling tied down can increase an older person’s confusion and panic, and people often still manage to struggle partly out of bed despite restraints. A more effective approach is for hospital staff to use comprehensive approaches that soothe restless patients and minimize stressors.

Tips for caregivers: If an older person becomes restless and confused in the hospital, be sure to bring it to the attention of the doctors. Studies have found that delirium is often missed by busy hospital staff. To prevent — and to help treat — delirium, it often helps to have family at the bedside, to provide reassurance and support.

To learn more about how delirium is treated, including tips on what you can do as a caregiver, see here.

Delirium is especially common in people with Alzheimer’s and other dementias; for more information and resources, see this post.

Questions or comments about these Choosing Wisely recommendations? I’d love to hear from you in the comments below.

Choosing Wisely: 5 Treatments You Should Question

by Leslie Kernisan, MD MPH

Did you know that it’s important to think about “Choosing Wisely,” when it comes to healthcare?

It’s true! Choosing Wisely is a health education campaign meant to help patients and their doctors more easily spot common tests and treatments that are often overused. To do this, many medical societies are creating lists of “Five Things Physicians and Patients Should Question.” Consumer Reports is also a partner in this project.

If you’re a caregiver for an aging person, you probably should know about the Choosing Wisely items identified by the American Geriatrics Society (AGS). These are treatments or tests that are:

Commonly given to older adults,
Often unlikely to help aging adults live better, or longer,
Riskier than many patients and caregivers realize.

In other words, these are treatments that older adults often don’t receive, when geriatricians are involved.

Of course, most older adults aren’t under the care of a geriatrician. If this is your family’s situation, learning about the Choosing Wisely items can be a good way to make sure your older relative avoids healthcare that is unnecessary, or even harmful.

In this post, I’ll review the “Five Things to Question” that were identified by the AGS in their intial Choosing Wisely list. (The AGS recently published a second list; I’ll review those items in a follow-up post.) I’ll also share some tips for caregivers, related to each item.

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Blood pressure medications linked to serious falls: What you can do

by Leslie Kernisan, MD MPH

Have you had any concerns about an older person falling, or being at risk for a broken hip?

A new clinical research study relevant to millions of older adults was just featured in the news.

The study, completed by a team of geriatrics researchers at Yale, found that in older adults aged 70 or older, taking blood pressure medication was linked to a higher risk of serious falls. (Serious falls as in, falls that caused an ER visit for a fracture, a dislocated joint, or a brain bleed. Serious stuff indeed!)

So, if the person you care for has a diagnosis of hypertension, and if you’ve had any concerns regarding falls or near-falls, these study results should be of interest to you.

In this post, I’ll review the key results of this study. Then I’ll tell you what I think are the most important practical take-aways for family caregivers.

This post will also include some practical tips to help you minimize the risk of your loved one experiencing a serious fall.

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Delirium: How Caregivers Can Protect Alzheimer’s Patients

by Leslie Kernisan, MD MPH

This week’s Q & A call was about how to better manage health and healthcare issues, when you’re taking care of someone with a dementia such as Alzheimer’s.

Most of the caregivers’ questions were about delirium. This is the state of worse-than-usual confusion that people can develop when they are sick or under serious stress.

I love talking to Alzheimer’s caregivers about delirium, because this is a really common problem that family caregivers absolutely can do something about!

The key is to know that people with dementia are especially prone to get delirium when they fall ill (especially in the hospital). And then you’ll want to know the basics on how to spot this problem, and how to get the doctors to address it properly.

A fact I wish more caregivers of elders knew: delirium can be the only obvious sign of a potentially serious health problem, such as a heart attack, a urinary tract infection, or a pneumonia. (Especially when it comes to older people with Alzheimer’s, they often don’t voice focused complaints the way younger people do.)

The trouble is, even though delirium is very common in older adults, studies have shown that it’s often missed by doctors and nurses. This is a important problem in healthcare, for three key reasons:

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2 More Things to Know About Better Healthcare in Alzheimer’s

by Leslie Kernisan, MD MPH

In my last post, I listed three things that I often wish more caregivers knew, about getting better medical care for a loved one with Alzheimer’s or another dementia.

In this post, I’ll list two more important things for dementia caregivers to know. Again, this will be an excerpt from Paula Spencer Scott’s book “Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers.”

But first, a quick word on Paula’s book, which as best I can tell, is really unique. On their own, her tips on handling common everyday problems — such as personality changes, memory glitches, difficult behaviors, and personal care issues — are good enough that I’d recommend her book to family caregivers because I love the practical “Why This, Try This” format she provides. She also offers solid advice on managing caregiver stress and relationship tensions.

Yet what’s really nifty about Paula’s book, is that she combines these practical tips with a section called “The Big Picture: Insights & Inspiration from the Wizards of Alz.” This is a compilation of twelve condensed expert interviews, and yours truly was very honored to be included.

Each expert has a different contribution to make to dementia caregiving. Whereas I focus on how caregivers can better manage the health issues, Bob DeMarco offers advice on “stepping into Alzheimer’s world,” Anne Basting provides guidance on using art therapy and storytelling, Teepa Snow suggests ways to decode the secret language of dementia, Leeza Gibbons encourages caregivers to not forget about themselves, and researcher Dr. Richard Isaacson provides cutting-edge advice on diet and dementia. (To see the full list of experts, you can preview the table of contents here, by clicking “look inside.”)

This creates a really rich and diverse package of perspectives, insights, and practical advice. So if you are looking for help surviving as a caregiver to someone with Alzheimer’s or another dementia, I encourage you to consider Paula’s book. (Note: Paula was my editor at Caring.com, and I also consider her a personal friend. But I wouldn’t tell you I recommend her book unless I really did like it.)

And now, back to what you can do, to get better healthcare for a loved one with dementia.

Two more things I wish caregivers knew about healthcare & dementia

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3 Things Caregivers Should Know About Better Healthcare in Alzheimer’s

by Leslie Kernisan, MD MPH

Having dementia, such as Alzheimer’s, brings on special challenges when it comes to health and medical care.

Last fall, my friend and colleague Paula Spencer Scott interviewed me on what family caregivers can do to improve the health — and healthcare — of a loved one affected by dementia.

The interview turned into a chapter in her terrific new book, “Surviving Alzheimer’s: Practical tips and soul-saving wisdom for caregivers.”

Below, I share three things I wish more caregivers knew about better healthcare for someone with a diagnosis of Alzheimer’s or another dementia. (Read about two more things to know in the follow-up post here.)

5 things I wish caregivers knew about healthcare & dementia

(Note: The following is an excerpt from Paula Spencer Scott’s new book “Surviving Alzheimer’s – Practical tips and soul-saving wisdom for caregivers.” I’ve added a few links to her text.)

A geriatrician urges you to shift how you think about medical care after an Alzheimer’s diagnosis; it can make a world of difference for your loved one and you.

#1: I wish dementia caregivers knew… that what seem like “little things” can make people much worse. Untreated pain, constipation, too much novelty or stress, medication side effects — you don’t think they’re that big of a deal, but for an older adult, they can be huge. Often these “little things” make a person with dementia much more confused or difficult than he’d otherwise be. These seemingly minor problems can even wind up sending your loved one to the emergency room or hospital, which is a stressful and risky experience for someone with Alzheimer’s. And that means another crisis you and the rest of your family will have to deal with.

Pay attention when a new problem develops, especially if it’s over hours or days. Whether it’s something physical, behavioral, or with thinking skills, don’t automatically assign every change to the dementia. Make sure something else isn’t going on.
One of the biggest problems caregivers don’t always act on: Sudden worsening in mental abilities. This indicates delirium, which means there’s likely something wrong, like an infection. Often a caregiver will mention to me at a scheduled exam, “She’s been much more confused in the past week.” We often discover a urinary tract infection or medication side effect, but it’s not uncommon for us to find really serious medical problems underlying the new confusion. In one case, we discovered a large pocket of pus next to an elderly woman’s lung, which explained her cognitive downturn. Don’t wait a week. Don’t wait until the next appointment you have. Call the doctor or advice-line that day, and be ready to bring her in today.

#2: I wish dementia caregivers knew… to have doctors re-evaluate the care plan for other chronic illnesses in light of a dementia diagnosis. Most older adults have more things going on than the dementia. Many of these chronic illnesses require self-care that can get hard when you have memory loss and cognitive changes.

Common examples: People with insulin-requiring diabetes should be given a simplified insulin regimen. It can also be hard for people with dementia to properly take “as-needed” medication, such as for pain or for COPD; instead the plan needs to be simplified, or you need to recruit more help to keep track of how the person is doing and how often they need to take the medication.
It’s not bad to simplify a care plan! Most doctors can do this, but you have to ask for it because specialists, especially, are focused on the problem at hand for them. Ask, “Is there anything we can simplify to make the care regimen more doable?” Often, if this happens at all, it happens too late. That’s a mistake.

#3: I wish dementia caregivers would … get used to thinking about the real pros and cons for every aspect of care. I call these the benefits and the burdens. Many treatments and procedures are overly burdensome to people with dementia and may be less likely to help than people realize.

Here’s a common scenario: Someone with dementia is found to have a mass that’s possibly cancer. The doctor wants to biopsy it and, if it’s cancer, offer whatever treatments are possible. You’d want to ask: “How stressful will the evaluation and treatment (if necessary) be? What would happen if we just watched it? And what are the answers to these questions in light of this person’s overall health?” If the person has been in and out of the hospital over the past couple of years due to congestive heart failure, for example, then a full-blown cancer work-up may not be the right thing to pursue.
For any major diagnostic procedure or treatment, ask, “How will this help with my loved one’s care overall? And what are the likely burdens?” This is especially true for same-day treatments that involve sedatives or anesthesia. Often these tests and procedures are quite stressful and even risky for people with dementia, but many doctors don’t focus on this when they recommend the test. So you really want to be clear on how the test results might help you better manage the person’s overall health.
Get the doctor to help you think about the big picture of the person’s health. Doctors won’t always remember to do this. Specialists, especially, tend to focus on the specific problem you’ve brought to their attention and how to fix it. They each focus on their own tree, and that can be to your detriment, because you need help with the whole forest. You need to know which are the trees to pay attention to most.

[Interested in Alzheimer’s? Be sure to read the follow-up post, “2 More Things to Know About Better Healthcare in Alzheimer’s.”

What should a geriatrician try to teach caregivers?

by Leslie Kernisan, MD MPH

Next Tuesday, on December 17th, I’ll be trying something new: a free Q & A conference call, for caregivers of older adults.

Why? Because after spending the past several years writing articles and blog posts for family caregivers, I’m interested in taking things in a slightly new direction. These Q & A sessions will help me learn more about what kinds of questions caregivers have regarding the health issues of the people they care about.

In fact, I’m considering the possibility of creating some kind of small course or curriculum, to help caregivers learn more about how to manage the health issues of aging adults.

What I have in mind would be similar to a “mini-med school” course, but with the following features:

The topic would be related to some aspect of geriatrics, i.e. health and healthcare that’s adapted for frail and vulnerable aging adults. This means that either I could plan a course about the geriatric approach to a common condition (such as diabetes, or osteoarthritis), or we could address a geriatric “syndrome” such as memory problems, falls, pain, physical declines, etc.
The course would take place largely online. I’m not considering a MOOC; I don’t have the resources to create a “massive open online course.” But I am envisioning a course that would leverage Internet technologies in some way, such as by combining online course material with teleseminars, and maybe even an online forum for the learners.

Now, this upcoming Q & A call is not part of a course. But it should be a good learning experience for those caregivers who call in, and will help me learn more about what topics would be useful in a class for caregivers.

And, I’m really looking forward to doing these calls and working on some kind of course, as I’ve long believed that we geriatricians should be actively teaching caregivers more of what we know. After all, health issues are almost always part of what caregivers end up dealing with, or at least worrying about.

If you’re a caregiver with questions for me, or if you’re otherwise interested in learning how geriatricians approach health issues in aging adults, I hope you’ll join my conference call next Tuesday, December 17th, at 12:30pm Pacific Standard Time.

Can’t make it on Tuesday 12/17 at 12:30pm PST? Those who register for the call beforehand will later have an opportunity to download a recording of the call.

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What should a geriatrician try to teach caregivers?

Questions? Comments? You can speak your mind below, or send me an email at info [AT] drkernisan [DOT] net.

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