If you’ve been in any way assisting another adult with managing health concerns or life tasks, you qualify as one of the estimated 40 million family caregivers in the US.
Such help often starts out with small things, such as helping an older relative get to appointments or assisting with grocery shopping.
But it’s also fairly common for families to end up providing quite a lot of care. A 2015 report found that on average, family caregivers provided 24.4 hours of assistance per week, and 23% of caregivers were clocking 41 hours or more.
Many people find themselves eventually struggling with the caregiving. Most of us haven’t prepared or been trained to do this, and many people are unsure of where to get information, help, or support.
So in this article, I’ll share some of my favorite resources to make family caregiving a little easier.
Recommended Websites for Family Caregivers
Here are some of my favorite websites providing practical and high quality information, to help solve common problems related to caring for older relatives:
Family Caregiver Alliance – This well-established non-profit has lots of resources for families caring for a relative, whether you’re just starting the journey or are a long-time caregiver in need of support. Their tip sheets contain excellent information. Other features I recommend:
The Family Care Navigator feature can help you locate public, nonprofit, and private programs and services in your area. This can help you find government programs, legal resources, disease-specific organizations and more.
There is also a free “CareJourney” feature, which is designed to provide customized support and information.
Training on health-related tasks (e.g. wound care, managing medications, and mobility) via the Home Alone Alliance project
A “We Need to Talk” free program to help you assess an older person’s driving and discuss your concerns
Online Communities and Support Groups
It always makes me a bit sad when a stressed out family caregiver tells me how isolated he or she feels. Most of them haven’t gotten around to finding a support group, in part because they are so busy.
Fortunately, the Internet makes it easy to access a variety of online support groups, some of which are quite active and give good support. Here are a few that I particularly recommend:
AgingCare.com Caregiver Forum – This is one of the more active online caregiver forums. It’s a good source of emotional support and ideas for navigating common caregiving challenges.
Daughterhood.org – This caregiving site is spearheading local “Circles” to help caregivers connect.
If you’re a family caregiver and you’re wondering which to try: I would say subscribe to one or two communities and give it a few weeks to see how it goes. Stick with the one that has a vibe or style that feels helpful to you.
I really do think it is essential to connect with a group of people facing similar family caregiving challenges. Online groups provide a safe space to vent difficult emotions, validation for your efforts, practical ideas on how to move forward and — perhaps most important — reminders to set some limits and tend to your own needs too.
To Find Expert Assistance
Family caregivers manage quite a lot on their own. But sometimes, it can be very helpful to consult with an expert. Here are some of my top recommendations to help you locate the kind of expertise families often need:
Aging Life Care Association – Formerly known as the National Association of Professional Geriatric Care Managers. This site explains how aging life care professionals can help with common age-related challenges, and provides a directory to help you locate a professional. These professionals usually have to be paid out of pocket, but they can be a huge help for families providing care at a distance, or just if you need extra help problem-solving.
National Elder Law Foundation – This is the only national organization certifying practitioners of elder and special needs law; NELF’s Certified Elder Law Attorney designation is itself certified by the American Bar Association. The site includes a feature to help you find a certified elder law attorney near you.
This book isn’t relevant to everyone, but since I end up recommending it often when people write to me in the comments, I will post it here.
This book can be very helpful if you have an older parent who is demanding or is draining you or is otherwise stressing you out. It also addresses how to more constructively relate to an older person who complains a lot or is very negative. It is especially good for guidance on how to set some healthy boundaries and how to help without necessarily providing everything an older relative wants.
What are your favorite resources for family caregivers?
Obviously, there are many more wonderful resources out there for family caregivers. There’s also the whole world of information and support related to subsets of the family caregiving experience, including dementias such as Alzheimer’s, navigating hospitalizations and health-related services, and more. (I’ll have to cover those in future articles.)
Still, I’d love to know: If you’re a family caregiver: what have you found most helpful, when it comes to getting the information and support that you need?
And what has helped you find services and resources, to address whatever age-related challenges you’ve come across?
Please post your suggestions below, I’m looking forward to learning from you!
Living wills. Advance directives. Powers of attorney for healthcare. Making your wishes known.
Many older adults have never gotten around to addressing these issues, and of those who have, many 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.
But if you wanted to get started addressing this, you may have run into a few common hitches. The forms are often in legalese and hard to understand. And people often are sure just how to go about “making their wishes known.”
Fortunately, geriatrician Rebecca Sudore, MD, noticed this problem early in her career, and decided to do something about it.
Over the past 15 years, she developed and tested California’s first easy-to-read advance directive, then designed PREPARE, an easy online video program created to help older adults address advance care planning.
In a recent podcast episode, she and Dr. Kernisan discussed PREPARE, advance care planning, and how to make it easier for older adults to address what matters most to them when it comes to end-of-life planning.
This article will share some highlights and key points from their conversation, including:
The easy-to-read advance directives (and where you can get one)
Why advance care planning needs to include more than completing forms
How the PREPARE program helps older adults talk about what matters most
How to use PREPARE resources to help yourself or your loved ones talk about what matters and complete your planning
Dr. Sudore’s first innovation: Easy-to-use Advance Directives
Dr. Sudore had been working on health literacy—translating complicated medical communication into more understandable language—when she became interested in the question of why didn’t more people complete an advance directive.
An advance directive is a legal document specifying your healthcare proxy and/or your wishes in the event of an emergency or life-threatening illness.
In looking into advance directives, Dr. Sudore noticed that the usual forms were not very user-friendly. They used a lot of legal terms and complicated language that even college graduates found challenging.
Dr. Sudore thought this might be an important barrier to people completing advance directives. So she decided to work with social workers, patients, and families to create a “plainer English” advance directive form.
After many years of hard work, Dr. Sudore and her team developed a new visually appealing easy advance directive. She worked with health literary experts to ensure it was written at the fifth grade reading level, making it comfortable for most adults to read.
The easy advance directive guides the user through choosing a medical decision maker and then makes it simple to specify some key health care choices. The form also provided clear instructions on how to have the form signed and how to know if a notary was needed.
A 2007 randomized trial found that most people preferred the easy-to-read advance directive, and that it led to higher planning completion rates.
Until recently, the easy advance directive was only available for California and a handful of other states. But thanks to funding from some foundations and generous donors, the PREPARE team was recently able to create easy advance directives for all 50 states. (Hurray!)
These easy advance directives are now available on the PREPARE website, right here. Every state has their own laws when it comes to advance directives, so it’s important to use the one intended for your state.
End-of-life planning is more than legal forms
In recent years, hospitals and medical centers have made a big push to get people to have an advance directive on file. But the truth is that planning ahead involves much more than signing forms, or specifying what people should do if you’re so sick you might die soon.
People often refer to “end-of-life planning,” but the more accurate term that health professionals now use is “advance care planning,” which the NIH National Institute on Aging defines as follows:
“Advance care planning involves learning about the types of decisions that might need to be made, considering those decisions ahead of time, and then letting others know about your preferences, often by putting them into an advance directive.”
In other words, “advance care planning” refers to a whole process of reflection, learning, and discussion with others, as well as to the creation of an advance care directive.
According to Dr. Sudore, three out of four people will need others to make medical decisions for them, at some point in their lives. This does happen at the end of people’s lives, but can also happen well before death, during a serious illness or due to a disabling condition such as dementia.
Without proper advance care planning, families often find it extremely difficult to make decisions on behalf of a loved one. Studies have found that making decisions for another person can lead to significant stress, family strife, and even post-traumatic stress disorder.
Completing a legal advance directive is important, but in her work Dr. Sudore noticed that often families reported that their loved one hadn’t actually discussed the form or their wishes with family beforehand.
Even when an advance directive was available, many families were unsure of how to proceed, because crucial conversations hadn’t taken place.
As Dr. Sudore states in the podcast, “advance directives are only as good as the conversations around them.”
For these reasons, Dr. Sudore has devoted much of her career to making it easier for people to have those conversations about what matters. The PREPARE program and the related resources on PrepareForYourCare.org are the result of this work.
How PREPARE makes advance care planning easier
Even when the easy advance directive was available, Dr. Sudore noticed that many older adults were still struggling with advance care planning.
In her research with various focus groups, Dr. Sudore found that older adults didn’t just need the “what” (advance directive forms), but also guidance on the “how”— how to define their values, determine what matters, and talk to their families and health providers.
To address this need, Dr. Sudore developed PREPARE, an online program using short videos and simple instructions to walk older adults through 5 key steps related to advance care planning:
Choose a medical decision maker
Decide what matters most in life
Choose how much flexibility to give to your medical decision maker
Tell others about your wishes
Ask doctors the right questions
The PREPARE program and its website PrepareForYourCare.org were developed while working with older adults, and were designed to be easily accessible for all. They are written at an easy literacy level (fifth grade and above), are available in English and Spanish, and have been proven to be usable and useful in clinical research.
The PREPARE website currently offers the classic program based on short videos, a printable workbook version of the program, advance directives for all 50 states, and a movie version designed to help break the ice and elicit meaningful conversations.
How you can use PREPARE to improve your advance care planning
A recently published study found that in a 2012 survey of Medicare beneficiaries, only 38% reported having addressed all three key parts of advance care planning: having an end-of-life conversation, designating a health power of attorney, and completing a living will.
You and your family may have already addressed all three, but if you haven’t — or if it’s been a while — PREPARE offers a great way to address your advance care planning.
If in the past you have already filled out an advance directive form, it’s especially valuable to take some time to review it. Chances are it’s a typical “standard” form in legalese. Updating it with one of the easy advance directives can help you clarify more of what matters to your family.
If you’d like to help an older parent with advance care planning:
Talk to your parent about PREPARE. Show them the website, or print out the workbook version of the PREPARE conversation guide.
You can also print out the easy advance directive for your state. Dr. Sudore’s latest research finds that the PREPARE program plus the easy advance directive is better than the easy directive alone. But some families might find it easier to focus on just the advance directive.
If your older relative seems reluctant to use PREPARE, you could offer to do it with them.
You could even tell them that you’re planning to address your own planning, and invite them to review theirs at the same time. This helps frame advance care planning is a normal and necessary activity that everyone should address regularly.
Another option Dr. Sudore suggests is to watch the movie with them and allow that to lead naturally to conversations.
Bear in mind that in many cases, it’s best to be gentle and patient when encouraging an older relative to address advance care planning. It’s okay to nudge but avoid creating pressure or stress. Many people will do better if they are given time to think things over.
If your older relative has Alzheimer’s or a related dementia:
At this time, PREPARE doesn’t offer any conversation guides or advance directives designed for dementia.
Planning ahead is a gift that benefits you and your loved ones
It’s not easy to think ahead to a time when we might be dangerously ill or mentally incapacitated.
But it’s an effort worth making. It will help you get medical care in line with your preferences and values, when the time comes. And you will reduce stress and anxiety in those making decisions for you, by providing much-needed guidance.
It’s often been hard to figure out how to get started. But PREPARE makes it easy.
So we hope you’ll use the PREPARE program to help you think through what matters and have those vital conversations with your family.
And don’t forget about the easy-to-use advance directives— they’re free to use, and free of legalese.
In fact, Dr. Kernisan has been using Dr. Sudore’s easy California advance directive for over 10 years with all her patients. In the podcast, she asks Dr. Sudore why it’s not more widely used, given it’s been available for 15 years.
“Well, we need more people to know about it,” said Dr. Sudore.
Now you know. So take a look at PREPARE, and let others know about this remarkable suite of free resources, carefully designed by Dr. Sudore to help you and your family address what matters most.
So for instance, if an older person has diabetes and is having frequent moments of low blood sugar (also known as hypoglycemia), then to reduce falls, addressing the hypoglycemia is as important, if not more, as starting an exercise program.
In other words, I always recommend that aging adults and families learn to tailor their fall prevention plans. You want to focus on what are the most important modifiable risk factors for that individual person.
That said, over the years I’ve noticed that there are four approaches that I find myself using over and over again, in almost all my patients who have had repeated falls.
These four approaches are used often by geriatricians, but much less often by busy primary care doctors. Unless, that is, a proactive family asks about them.
An evaluation often confirms that an older adult has poor balance and diminished leg strength. Doing exercises specifically designed to improve balance and strength, such as the Otago program, can counter this.
Home safety assessment and modification, in collaboration with occupational therapy when possible.
An occupational therapy evaluation usually needs to be ordered by a health provider, as part of skilled home health services.
I do still recommend that most older adults take a vitamin D supplement, however, I no longer particularly recommend it for fall prevention.
Vitamin D used to be my fifth general recommendation for fall prevention. Even though it seemed the effect on falls reduction was small, at least it’s an easy thing to implement, and a daily dose of 800-1000 IU/day is extremely unlikely to cause harm.
However, the accumulating research evidence has been suggesting that Vitamin D supplementation has no benefit, when it comes to preventing falls. (At least, not in “community-dwelling” adults over age 65, which means older adults who are not in the hospital or in nursing homes.)
If you want to equip yourself to be even more proactive, you can learn more about how your health providers should be addressing falls on the CDC’s STEADI website.
I’ve also recently compiled a Fall Prevention Resource Guide, click the link below to get your free copy of this PDF resource. It’s short and lists my top recommended online fall prevention resources, so that you have a way to find them fast.
Get Your Free Fall Prevention Resource Guide! A handy short PDF to help you quickly find the key online resources mentioned in this article. Click here to download.
With some gentle reminders from you and others, your health providers will do a better job helping you reduce falls.
Questions or comments? Post them below!
This article was revised and updated on 9/21/18.
Most older adults don’t need much help from others.
In fact, many of them are quite busy assisting others and otherwise contributing to their families, communities, and/or workplaces.
But of course, many older people eventually do need some help from others, especially if they live into their 80s, 90s, or beyond. After all, only a minority of people transition from being fully independent to deceased, with no intervening period of needing assistance.
Sometimes providing this support can be fairly straightforward: a little help with transportation, or arranging for some assistance with shopping or household chores.
But in other cases, family members find themselves having to take on quite a lot. This is often due to health issues affecting the older person’s ability to remain independent and manage various aspects of life.
Some situations that commonly bring this on include:
An older person starting to develop dementia, such as Alzheimer’s or a related condition
Advanced chronic illnesses that limit daily function and/or cause frequent hospitalizations, such as advanced heart failure, advanced chronic pulmonary disease, or a progressive neurological condition
Sudden disability after a fall, stroke, or other health emergency
Difficulty recovering from a hospitalization, especially if the older person experienced delirium or other complications
Advanced age, which can eventually bring on general frailty and loss of physical strength. Very advanced age also tends to bring on more noticeable age-related cognitive changes, and is a strong risk factor for developing dementia as well.
Most people are happy to be able to help an older parent or other loved one in need.
But it’s also common for people to end up feeling a bit confused or overwhelmed.
Trying to help an older parent tends to bring up lots of different issues that people haven’t prepared to address. And many people must continue to tend to their jobs, children, and other responsibilities, as they also start trying to figure their new caregiving role.
Over the past several years, both in my in-person doctoring work, and as an aging health expert writing online, I’ve seen countless people struggling to sort out just what their older parent might need help with, and how to help.
Older adults often first need help with IADLs, which include things like managing transportation, finances, shopping, home maintenance, and meal preparation.
An older person’s need for assistance with ADLs and/or IADLs often determines what kind of care arrangements or housing arrangements a family might consider.
This includes addressing issues such as financial vulnerability (or even exploitation), falls, driving concerns, and more.
Medical and health issues
Medical concerns are fairly common in late-life. Many older adults have chronic conditions that require medications, monitoring, and other forms of ongoing management.
Older adults may also develop new symptoms or health concerns, and may need their family’s assistance in getting evaluated. Family members often help bring up questions and concerns to the health providers.
Most people will also need help when recovering from an illness.
Serious illness or certain chronic conditions can cause older adults to lose the ability to make their health decisions or oversee their own medical care. Family members must often make decisions due to a health emergency or mental decline.
Legal and financial issues
Some older adults may lose the capacity to manage certain types of financial or legal affairs.
Even cognitively-intact older adults are vulnerable to financial exploitation.
Family members must often consider assisting with legal and financial issues.
Planning ahead and completing the necessary legal paperwork can make it much easier for a family to assist, if/when it becomes necessary.
An older person’s housing situation often affects quality of life, safety concerns, the ability of others to provide assistance, and more.
Families must often consider questions such as:
Is the current housing situation a good fit for “aging in place”?
Is a more supportive environment, such as moving in with a family member, potentially necessary?
What other options (e.g. assisted living) would be financially viable, and could be considered?
Quality of life and helping your older parent thrive
Beyond meeting basic needs, most families are also concerned about their older loved one’s quality of life.
This means considering issues such as social connectedness, purpose, autonomy, and dignity.
It’s also essential to learn more about what matters most to the older person, and what kinds of things they consider less important or would be willing to trade-off.
Things to plan ahead for include future declines, emergencies, and end-of-life care.
Planning ahead tends to reduce later stress, hassles, and sometimes expenses.
Managing relationships and family dynamics
Trying to help an older parent often brings on relationship challenges and difficult emotions.
Well-intentioned people often inadvertently treat older relatives in ways that threaten their autonomy or dignity, or otherwise strain the relationship.
It’s also common for family caregivers to experience relationship challenges with siblings, a caregiving parent, or others who are involved.
Most people benefit from learning and practicing better communication skills, to better manage these relationship dynamics.
Helping an older parent is rewarding but can easily become a source of chronic stress.
Because family caregivers are often busy, they can easily neglect their own needs and wellbeing, which can jeopardize their own health, and also affect their ability to care for and connect with their older parent.
Family caregivers can use a variety of self-care strategies to keep their caregiving strain manageable. These include joining a support group, asking for help, setting boundaries, alloting time to tend to one’s own health and other needs, and more.
I’ve also found that family caregivers can benefit from learning strategies to organize and prioritize what they are working on.
As you can see — and as many of you already know from personal experience — helping an older parent in late-life can be a pretty complicated endeavor.
This is in part because all the above domains tend to interact and overlap with each other. Some examples:
An older person’s medical situation often affects their ability to manage ADLs and IADLs, and their caregiving needs.
The intensity of the medical situation also affects how much time an older person and their family spend with health professionals, which affects everyone’s quality of life.
A family’s legal permissions to assist determine how easily they can help with medical issues, housing issues, financial issues, and more.
Relationship dynamics — and a family caregiver’s self-care — affect caregiving stress, which then affects one’s ability to help a parent, and the type of energy and patience one is able to muster when communicating with others.
Sorting through decisions — whether about safety, medical, housing, or anything else — should always involve considering the older person’s quality of life and what matters most to them.
And so forth.
Are you currently trying to help older parents?
If so, I hope you’ll find this list useful.
There is a lot on it, but with some persistence, you’ll eventually sort your way through it all.
I first offered this online program earlier this year, and I’ll be opening up registration again later this month.
Here’s some of the feedback I got from the first group of participants:
“Your program and materials were outstanding. I learned so much and the extra resources you provided were invaluable and will be used as I move forward in this difficult situation with Mom.” — H.A.
“All of this was so helpful: legal issues to plan for, how to deal with driving concerns, how to care for an aging person, how to take care of myself, that it’s okay to take care of myself or have other priorities, that others have similar struggles, how to prioritize, how to build trust with my mom in her cognitive state…I can’t really think of one thing I would change. You made the format very user-friendly and professional.
I also received much-needed validation in terms of understanding that my concerns are part of a bigger picture that many are struggling with.”– Michelle T
“My career has been spent doing in person and virtual training on a variety of health-related topics, so I could be considered a “difficult” customer.
Yours is one of the best, most effective programs I have seen. Through this course you have created an extraordinary resource, building upon your great blog.” — Elizabeth B.
If the upcoming Bootcamp sounds interesting to you, you can sign up to get updates here. I’m planning to open up enrollment soon!
The Bootcamp includes live Q&A calls, online lessons, resource lists, cheatsheets, and more, all designed to help you better connect with your older parent and better understand how you can help them.
Otherwise, if you have any suggestions on how people can better navigate helping an older parent, or if you simply want to share thoughts on this topic, please post in the comments section below!
It’s annoying but unfortunately true: most parts of the body work less well as one gets older and older.
This is even true of the brain, which is part of why it becomes more common to experience a “tip of the tongue” moment as one gets older.
Such age-related changes in how the brain manages memory, thinking, and other mental processes are called “cognitive aging.”
Understanding how aging changes cognition is important. It can help you understand what to anticipate when it comes to your own aging. It can also help families better understand the changes they’re noticing in an older person, and whether those are out of the ordinary or not.
Since I’ve often written about changes in thinking that are abnormal and concerning in older adults, I thought it might be helpful for me to write an article outlining what is normal and to be expected.
Specifically, I’ll cover:
How cognitive aging differs from other diseases and conditions that affect memory and thinking
6 ways that memory and thinking change with aging
The difference between crystallized and fluid intelligence
How to tell cognitive aging apart from more worrisome changes
Practical takeaways and what you can do
Now, I’ll be frank. As you’ll see, most mental processes become less nimble with time. Just as your 75-year-old self can’t run as fast as your 30-year old self, your 75-year-old brain will, for the most part, not think as quickly either.
This can be discouraging news to many people. Which means they might feel reluctant to learn more about this.
But the news is not all bad. Yes, things tend to work a little slower and less well, but on the other hand older adults can often compensate by drawing on their experience. Cognitive aging also helps older adults become more optimistic and emotionally resilient, as I explain later in the article.
By better understanding cognitive aging, you’ll be better equipped to understand the older adults in your life, whether that is yourself or an older loved one.
How does cognitive aging differ from a disease or more concerning changes in mental function?
People sometimes have trouble understanding how cognitive aging is different from something more concerning, such as mild cognitive impairment, early Alzheimer’s disease, or other memory-related conditions they may have heard about.
A good explanation of the difference is available here, in the Cognitive Aging Action Guide published by the National Academy of Medicine (formerly the Institute of Medicine), which issued a fantastic report on cognitive aging in 2015.
Basically, cognitive aging is the brain’s version of your body parts working less efficiently due to age, rather than due to disease or serious damage.
This loss of efficiency is gradual. And like many other age-associated changes in the body, cognitive aging tends to happen a little differently for every person, in part due to things like genetics, lifestyle and environmental factors.
But it’s not a disease. Very importantly: cognitive aging doesn’t involve neurodegeneration or significant damage to the brain’s neurons.
So whereas Alzheimer’s disease and other conditions cause neurons to become badly damaged and eventually die, in a normal older person with cognitive aging, the brain’s neurons are basically ok, they’re just working less quickly and less well than earlier in life.
Although cognitive aging does cause certain mental processes to happen less quickly, normal cognitive aging should not impair an older person’s abilities to the point that they are visibly struggling with life tasks or no longer able to live independently.
6 Ways that Memory and Thinking Change With Aging
People often think of memory when they think of cognition or “brain function.” But there’s actually much more to thinking and the brain’s work.
Here are six key ways that cognition changes with aging.
What it is: This refers to how quickly the brain can process information and then provide a response, such as making a movement or providing an answer. Processing speed affects just about every function in the brain. Processing speed in of itself is not a specific mental task, it’s about how quickly you can manage a mental task.
This decrease starts in early adulthood, so by the time people are in their 70s or 80s, processing speed is significantly down compared to the speed one had in one’s 20s.
Older adults need more time to take in information and to formulate an appropriate response, compared to their younger selves.
Some older adults may struggle with complex tasks that require a lot of quick information processing.
Driving, in particular, can be affected by slower processing, because driving requires the brain to keep noticing and processing a lot of information while quickly formulating appropriate responses.
What it is: This is a broad category covering the ability to remember information. Key sub-types include:
This refers to the ability to temporarily hold information in mind and manipulate it mentally, like remembering a new phone number and then dialing it.
Working memory is involved in a variety of mental tasks, including problem-solving, making decisions, and processing language.
Semantic long-term memory
This refers to factual information that you acquire over time, such as the name of a state capital.
This refers to one’s memory for personally experienced events that have happened at a particular place or time.
This refers to the ability to remember to do things in the future.
This is also known as skill learning. It refers to the learning and remembering how to do certain activities.
It usually requires time and practice to build up.
Memory is actually a complicated topic, one can identify many other subtypes and experts are also still debating just how to categorize and explain the many different ways that people remember information or how to do things.
It’s also technically a different task for the brain to create a memory (this is sometimes called encoding) versus to retrieve it. So a person may have trouble remembering something either because they had difficulty encoding it in the first place, or because they are having difficulty promptly retrieving it.
How memory changes with aging:Many aspects of memory do decline with age, but not all:
Types of memory that decline:
Episodic memory (especially for more recent events)
Types of memory that stay stable
Semantic long-term memory (may decline after the seventh decade)
Normal older adults are generally good at retaining information and memories that they’ve previously acquired, but they can take longer to retrieve them.
The ability to perform well-learned procedures (e.g. typing) remains stable. However, older adults often need more time and practice to learn a new procedure and create the procedural memory.
Declines in working memory mean that older adults may take longer or have more difficulty solving complex problems or weighing complicated decisions.
Declines in episodic memory may cause older adults to be a little more forgetful, especially for recent events.
Declines in prospective memory can make older adults more likely to forget something they were supposed to do.
It can help to give older adults more time and support to actually encode information into their memories. This requires processing time and also adequate attention (see below).
What it is: Attention is the ability to concentrate and focus on something specific, so that the related information can be processed. Key sub-types include:
This is the ability to focus on something specific despite the presence of other distracting and “irrelevant” information or stimuli.
Examples: spotting the relevant information on a cluttered website, following a conversation despite being in a busy environment.
Also known as “multi-tasking,” this is the ability to manage multiple tasks or streams of information at the same time.
Examples: reading a recipe while listening to music, driving while talking to someone.
This is the ability to remain concentrated on something for an extended period of time.
How it changes with aging: Some aspects of attention do get worse with aging. Specifically:
Selective attention gets worse with aging.
Divided attention gets worse with aging.
Sustained attention does not tend to get worse with aging.
As people get older, they are more easily distracted by noise, visual clutter, or a busy situation. It requires more effort for them to pay attention, especially when other things are going on.
People will also get worse at multi-tasking or switching between tasks, as they get older.
What they are: Language skills cover a variety of abilities related to understanding and producing both verbal language and written language.
How they change with aging:
Vocabulary tends to remain stable with aging.
The comprehension of written language tends to remain stable.
Speech comprehension can decline with age, especially if the older person has any hearing difficulties or if the speech is rapid or distorted (because such speech requires more mental processing).
Language production does decline with age. Examples include:
More time is needed to find a word, and it becomes more common to pause in the middle of a sentence.
Spelling familiar words may become more difficult.
The ability to name a common object tends to decline after age 70.
Normal older adults retain their vocabulary and ability to comprehend written language.
They may struggle with understanding rapid speech or distorted speech (such as that broadcast by a loudspeaker or synthetic voice).
Retrieving words often takes longer.
What it is: This refers to the mental skills that are needed for activities related to planning, organizing, problem-solving, abstract thinking, mental flexibility, and appropriate behavior. Executive function allows people to do things such as:
Solve new problems
Organize information and plan activities
Use reason (especially when it comes to reasoning with unfamiliar material)
Adapt to new situations
Behave in socially appropriate ways
Make complex decisions
How it changes with aging: Executive function generally declines with age, especially after age 70.
Normal older adults generally can perform the executive functioning tasks listed above, but they will not do them as well as when they were younger.
Older adults may struggle or take more time for more demanding executive functioning tasks, especially if they are tired or otherwise cognitively feeling taxed.
What it is: This refers to the ways one processes and regulates emotions, especially the negative ones. Examples include:
How quickly one moves out of a negative emotional state
How physically or emotionally reactive one is to interpersonal stressors
Mental strategies for minimizing negative stimuli, such as paying less attention to them
How it changes with aging: Older adults experience several changes that generally make them more positive and optimistic. These include:
Paying less attention to or withdrawing from negatively-simulating situations.
Paying more attention to positive things.
Becoming better at remembering positive things.
Normal older adults develop a positivity bias, and will tend to pay more attention to situations that are emotionally positive.
Older adults have more difficulty remembering or paying attention to situations or problems that generate negative emotions.
This may be part of why it’s difficult for them to engage in planning for unpleasant future eventualities.
People tend to get happier and recover from negative emotions more quickly as they age.
Older adults may seem to avoid or deny certain issues that they find unpleasant.
Crystallized versus fluid intelligence in aging
When experts discuss normal cognitive changes in aging, they sometimes refer to crystallized intelligence versus fluid intelligence.
Basically, crystallized intelligence refers to everything one has learned over time: skills, abilities, knowledge. This increases as people get older, because crystallized intelligence is a function of experience, practice, and familiarity. This can lead to what some people refer to as “wisdom.”
Crystallized intelligence gets better or stays stable as people get older. This experience and wisdom does enable older adults to compensate for some of the decline in processing speed and other ability. It also means that older adults may perform better than younger people at those mental tasks that require depth of experience or knowledge.
Fluid intelligence, on the other hand, refers to abilities related to processing power, taking in new information, problem-solving with new or less familiar information, and reacting quickly.
Fluid intelligence is at its peak when we are younger adults, and then declines over time.
How to tell cognitive aging apart from more worrisome changes
It’s true that some very common brain problems, such as very early Alzheimer’s disease, can be very hard to tell apart from changes due to cognitive aging.
What is nice about the Alzheimer’s Association’s resource is that for every early sign, they give an example of a normal change due to cognitive aging.
If you are wondering whether certain changes might qualify as “mild cognitive impairment” (MCI), then you’ll probably need to ask your health provider for more assistance in assessing memory and other cognitive domains.
In general, the diagnosis of MCI requires objective evidence of cognitive difficulties that is beyond what would be considered normal, but not bad enough to qualify as dementia. In other words, in MCI, cognitive testing should reveal that a person does worse than expected for his/her age and level of education. But the person should still be able to manage daily life tasks.
Otherwise, there are some signs and symptoms that are very unlikely to be due to cognitive aging alone. These include:
Becoming irritable very easily, or emotionally much more volatile than before
Lack of interest in activities, and/or inability to enjoy activities one used to enjoy.
If you notice any such symptoms, it’s important to not assume this is “normal aging.” Instead, I recommend learning more about these symptoms and then bringing them up to your usual health providers. Such changes in behavior can be caused by a variety of different health conditions, none of which should be ignored.
In short, cognitive aging means that as we get older, our mental functions become less nimble and flexible, and many aspects of our memory get a little worse.
We also become more easily distracted by busy environments, and it takes more effort to work through complex problems and decisions.
Aging also tends to make people more positive, optimistic, trusting, emotionally resilient, and focused on good things. This often helps people feel happier as they get older.
But, this can make it harder for older adults to plan ahead to avoid problems, or to think through decisions that generate negative emotions. These changes to the aging brain can also make older adults more susceptible to deception and financial exploitation.
It’s not really possible to prevent all cognitive aging. But there certainly are things that you can do! I would categorize them into two key categories:
1.Take steps to optimize and maintain your brain function.
These include a variety of sensible “brain-healthy” actions such as making sure to get enough sleep, exercising, not smoking, being careful about medications that affect brain function, and more. Here are some useful resources that provide a more detailed list of suggested actions:
I must say that after researching this article, I found myself thinking that we should all consider making an effort to deal with big complicated mental tasks (e.g. estate planning, advance care planning) sooner rather than later.
Because the longer one waits, the harder it becomes for the brain to think through complicated decisions.
For more on cognitive aging
Here are some of the resources that I found especially helpful, in researching this article:
Here’s an upsetting situation that comes up a lot, and may have come up for you: is someone financially taking advantage of Mom or Dad?
It’s a pretty legitimate concern to have. To begin with, most people know that there are plenty of “scammers” out there, phoning or mailing older adults with deceptive information designed to hoodwink them out of some of their savings.
But there’s actually another form of exploitation that may be more common, and is often harder for families to address.
That would be exploitation perpetrated by a someone the older person knows and has a personal relationship with.
Sometimes the person suspected of exploitation is relatively new to the older person’s life, such as a new romantic interest, friend, or paid caregiver.
In other cases, family members become concerned that someone in the family – such as one of the older person’s children – is beginning to take financial advantage of things.
Exploitation in the context of personal relationships is often especially tricky for families to address. The older person may be quite attached to – or otherwise feel dependent on – the person that others perceive as suspicious or problematic. Or there may be concerns about stirring up family dramas and conflicts, by voicing concerns about a sibling or another relative.
People are often unsure of what exactly constitutes illegal activity, and what can be done if they are concerned about financial exploitation.
So in this article, I’ll cover the key things you should know, so that you can better evaluate and address a worrisome situation, should one arise.
Specifically, in this article I’ll explain:
Key terms to know, related to the financial exploitation of older adults
Some common examples of financial abuse
How to know if an older person is at risk, or otherwise particularly vulnerable to exploitation
What to do, if you suspect financial exploitation of an older adult
How to reduce the risk of being financially exploited
I’ll also share a list of additional resources and references at the end.
Key terms to know
The financial exploitation of older adults is also known as “financial abuse.” It is considered a type of elder abuse. It may occur simultaneously with other forms of abuse, such as neglect, emotional abuse, or physical abuse.
Definition of Elder Abuse (per the CDC): “Elder abuse is an intentional act, or failure to act, by a caregiver or another person in a relationship involving an expectation of trust that causes or creates a risk of harm to an older adult.”
Definition of Financial Abuse or Exploitation (per the CDC): “The illegal, unauthorized, or improper use of an older individual’s resources by a caregiver or other person in a trusting relationship, for the benefit of someone other than the older individual.
This includes depriving an older person of rightful access to, information about, or use of, personal benefits, resources, belongings, or assets.
Examples include forgery, misuse or theft of money or possessions; use of coercion or deception to surrender finances or property; or improper use of guardianship or power of attorney.”
State laws include criminal law statues and civil law statues. Financial abuse is often addressed in both types of statutes. Criminal activity can be investigated by law enforcement, but illegal activity that falls under civil statutes generally isn’t.
The role of “undue influence”
Another term that is important to understand is “undue influence.” Basically, we are all influenced by people we have relationships with, and this can affect the way we choose to spend our money or share our assets.
But was this influence “undue,” or otherwise “improper”? Families or others sometimes worry that an older person has been inappropriately pressured or manipulated, or perhaps taken advantage of due to memory problems or a dependent situation.
Such “inappropriate” influence can be called “undue influence.” It’s an important concept to understand for two reasons.
First of all, it’s through such manipulative interpersonal dynamics that perpetrators are often able to commit financial abuse. Second, it’s a term that is often used in state laws related to elder abuse, or sometimes to statutes related to guardianship issues.
Here is a general definition, followed by California’s definition (which was just revised in 2014):
Definition of Undue Influence (per California State Law): “Excessive persuasion that causes another person to act or refrain from acting by overcoming that person’s free will and results in inequity.”
California’s statute goes on to specify four criteria which should be considered when determining whether a result was produced by undue influence. These include:
The victim’s vulnerability,
The factors that created authority or power for the influencer (e.g. being a necessary care provider),
The actions or tactics used by the influencer (which might include controlling access to others or to life necessities),
The “equity of the result” (e.g. economic consequences to the victim, divergence from the victim’s prior intent, etc).
To summarize: financial exploitation is a subset of elder abuse, and basically means inappropriately using an older person’s financial resources, for the benefit of someone other than the older person.
Such exploitation is often – but not always — facilitated by the perpetrator using “undue influence,” in which they create some kind of manipulative dynamic that allows them to take advantage of the older person.
Examples of financial abuse
Unfortunately, there many different ways to financially exploit an older adult. It’s not possible to list them all, so instead, I’ll share two common categories to keep in mind, along with some examples.
One way to think about financial abuse is to categorize perpetrators as “predators” versus “opportunists.”
“Predators” are individuals who purposefully seek out vulnerable older adults (or sometimes any adult), with the intent to defraud them or otherwise financially exploit them. Examples of this kind of financial abuse include:
Telemarketing or other forms of phone scams
Homeowner/reverse mortgage scams
Imposter scams, in which someone impersonates a grandchild or other relative and says they urgently need money wired to get out of trouble
The perpetrators of predatory financial abuse do sometimes work for several days — or longer — to establish a relationship with a vulnerable older person. A recent New Yorker article describes the way one 89-year old woman was persuaded to send large sums of money to a scammer, after he spent a week telephoning her and led her to believe he’d become a “friend.”
Whereas “predators” are purposefully out to defraud or exploit others, “opportunists” are those who end up financially exploiting an older person because…well, the opportunity arose, usually due to a relationship between the older person and the one who ends up exploiting the situation. Examples of this type of financial abuse might include:
Using an older parent’s ATM card without their permission
Forging or misusing an older person’s checks
Using the authority granted by a power of attorney to use the older person’s funds for one’s own needs
Pressuring an older parent into paying expenses for oneself or for someone else
Such “opportunistic” abuse can be committed by family members, paid in-home care providers, or even trusted people outside the home, such as financial advisors or spiritual advisors.
Financial abuse is also sometimes committed by newer friends or romantic interests, who may take advantage of a lonely older person’s generosity or interest in maintaining the relationship. Some such new romantic interests appear to be “predators” who actually seek out vulnerable targets, whereas others seem to be “opportunists.” (Of course, suspicion or resentment of an older person’s new relationship does not always mean that abuse or even manipulative situations are occurring.)
The difficulty, of course, with these examples is that plenty of common situations may fall into gray areas.
If an adult child is living with and perhaps assisting an older parent, and the parent seems appreciative and wants to give that child extra money, is that exploitation? Or just a natural expression of appreciation?
If an older woman gets re-married late in life and agrees to send large sums of money to her new husband’s adult child, is that exploitation? Or just her exercising her autonomy and right to give money to whomever she chooses?
If your older father has made your sister, who lives near him, a joint owner on his bank account, and your sister starts using money from that account to cover what she says are her expenses in assisting your father, is that legit?
It’s easy to see how different people may have different perspectives on such a situation. Although in some cases it may seem quite clear that what happened is financial abuse of an older person, other situations will be murkier and will be challenging to sort out.
How to know if someone is at risk
One of the biggest risk factors for financial abuse is having some form of cognitive impairment, whether mild or more substantial such as Alzheimer’s disease or a related dementia.
Obviously, having problems with memory or other aspects of thinking makes one more vulnerable to deceit and misuse of one’s funds.
That said, it’s critical to realize that even “mentally sharp” older adults can easily fall prey to financial exploitation. That’s because plenty of factors other than memory play a role in making an older person vulnerable.
Here are some of the key factors that increase the risk of exploitation:
Loneliness. Lonely older adults more likely to be receptive to the overtures of a financial predator. They may also be more susceptible to manipulation by a family member or opportunist.
Isolation. When older adults are isolated, there may be fewer family or friends around to notice a suspicious situation and intervene. Isolated older adults are also often lonely.
Poor physical health and needing assistance with daily tasks. This is associated with being dependent on others, and such dependency can create the opportunity for exploitation.
Age-associated brain changes make people more trusting as they get older. Research has shown that as people age, they tend to become more optimistic and more trusting. This can help older adults become happier as they get older, but may well be part of why many of them can be financially exploited by scams.
Cognitive impairment. Again, this is not necessary for financial exploitation to happen, but it can certainly facilitate it. Also, if an older person previously completed a durable power of attorney (POA) document, the agent of an impaired person can easily abuse the POA and mismanage funds for their own benefit.
Although one might assume that it’s mainly wealthy older adults that get financially abused, one research study found that poverty was associated with financial exploitation too.
In short, financial exploitation can happen to almost any older adult, but being lonely, isolated, and/or dependent on others makes an older person especially vulnerable. Cognitive impairment also increases the risk of financial exploitation.
What to do, if you suspect the financial exploitation of an older adult
If you suspect that your older parent — or another older person — is being financially exploited, it’s important to take action.
Termination of vital utilities such as telephone, water, electricity / gas, or garbage
Unpaid bills and liabilities despite adequate income
Oversight of finances surrendered to others without explanation or consent
Transferring assets to new “friends” assisting with finances
Checks written to “Cash”
Does not understand his/her current finances, offers improbable explanations
Unexplained disappearance of cash, valuable objects, financial statements
Unexplained or unauthorized changes to wills or other estate documents
Giving-away money or spending promiscuously
Appearance of property liens or foreclosure notices
In general, any and all forms of elder abuse — including financial abuse — should be reported to your local Adult Protective Services (APS) office. (More on APS below.) You can use the Eldercare locator online to find your local APS office.
But there are also other actions you can consider taking. Exactly what to do will depend somewhat on the circumstances, the evidence you have found so far, the older person’s relationship with the perpetrator, and your relationship with the older person.
Here are some steps to consider taking:
Talk to the older person. Before telling an older person what to do or not do — or otherwise swooping in to help — it’s always a good idea to try to talk and get a sense of how they see the situation. This helps older adults feel heard and understood, which may then make it easier for them to accept your assistance, if it becomes necessary.
Gather more information or evidence as to what is occurring. To the best of your ability, try to make sure you have information to confirm your concerns or suspicions. Talk to other family members as well, if possible, so that the family can coordinate their efforts to investigate and intervene.
Contact the older person’s financial institution. They may or may not be able to divulge details to you, but new rules are making it easier for them to refuse or stop disbursements if there is suspicion of financial abuse. Congress also passed a “Senior Safe Act” in 2018, to empower financial professionals to act.
Contact law enforcement. This is especially important if you suspect fraud, theft, scams, or other criminal activity. Your local police department or sheriff’s office is generally a good place to start. Your local APS office should also be able to tell you which law enforcement agency to contact with your specific concerns.
Most states also require individuals in certain positions to report suspected elder abuse, including financial exploitation. Health providers are often mandated reporters, and in some states, financial professionals are as well.
Of course, you are likely to be facing one or more of the following challenges:
The older person may resist your concern or attempts to intervene, feeling that you are infringing on her autonomy or implying that he isn’t capable of taking care of his finances.
Try to be as supportive and respectful as possible, as you express concerns. Use better communication approaches, such as using “I” messages and making sure the older person feels heard and understood.
If you don’t have an active power of attorney or another way to access the older person’s financial information, it can be hard to determine what is going on, and intervene to stop problematic disbursements.
You should still express your concerns to the older person’s bank or financial institution. As noted above, new rules are being implemented to enable financial professionals to intervene or at least place holds on disbursements, when financial exploitation is suspected.
In a few states, financial professionals are mandated to report suspected financial abuse. Check your local elder abuse statutes (or Google) to find out who is a mandated reporter in your state.
The suspected perpetrator may be restricting access to the older person, by refusing to let others talk to the older person on the phone, or visit.
If you really are concerned about financial exploitation or other elder abuse, you should call Adult Protective Services so that they can investigate. They will not disclose the name of the reporting party to the older person or suspected perpetrator.
If you’re not quite ready to call APS, try voicing your concerns to other individuals who may still have access to the older person, such a health provider or a clergy member. They might be able to encourage more communication to resolve conflicts. Your concern might also prompt them to look into a worrisome situation.
For more assistance, consider contacting a civil elder law attorney.
In short, if you suspect that an older person is being financially exploited, what’s most important is to do something.
Be as respectful as possible of the older person’s feelings and autonomy, but do try to find out more, try to delay any spending if possible, and report your concerns to the appropriate authorities.
In general, Adult Protective Services (APS) is the key social service agency to call, when you suspect financial abuse or any other kind of elder abuse. That said, APS offices are locally operated, so different agencies may take slightly different approaches to investigating concerns.
If you are not sure whether certain activity constitutes financial elder abuse, check your local state statutes, and/or consult an attorney.
How to reduce the risk of financial exploitation in aging
As is often the case, when it comes to financial exploitation, an ounce of prevention is worth a pound of cure.
The challenge, however, is that taking steps to reduce the chance of exploitation often requires older adults to do two things that most find difficult.
Realize that they are at risk. This is tough because most of us have trouble imagining a time when we might become vulnerable, gullible, or cognitively impaired. It can be distressing to think about, plus the known age-associated tendency towards optimism makes it even harder to imagine such situation.
Consider giving up some privacy and autonomy. Basically, to reduce the risk of financial exploitation, you have to be willing to do things like letting others periodically review your financial activity, and under some circumstances, overriding what you are trying to do.
Understandably, many people are reluctant to give others the ability to review their decisions and intervene in their autonomy.
Still, such sacrifices are probably necessary, to significantly reduce one’s risk. And if done carefully and thoughtfully, it should be possible to still help an older person maintain some privacy, dignity, and autonomy.
Here are a few specific steps to consider, to reduce the risk of financial exploitation:
Simplify your finances, so that there are fewer accounts to oversee or regularly review.
Authorize each of your financial institutions to contact 1-2 trusted individuals (such as an adult child or one’s agent designated in a durable power of attorney), in case of suspicious financial activity.
Develop some method of allowing your trusted individuals to review your financial..
Q: My 88-year old mother often complains of various aches and pains. What is the safest over-the-counter painkiller for her to take? Aren’t some of them bad for your liver and kidneys?
A: Frequent aches and pains are a common problem for older adults.
If your mother has been complaining, you’ll want to make sure she gets a careful evaluation from her doctor. After all, frequent pain can be the sign of an important underlying health problem that needs attention. You’re also more likely to help your mom reduce her pains if you can help her doctors identify the underlying causes of her pain.
That said, it’s a good idea to ask what over-the-counter analgesics are safest for older people.
That’s because improper use of OTC painkillers is actually a major cause of harm to older adults.
So let me tell you what OTC painkiller geriatricians usually consider the safest, and which very common group of painkillers you should look out for.
What’s the safest OTC painkiller for an older parent?
For most older adults, the safest OTC painkiller for daily or frequent use is acetaminophen (brand name Tylenol), provided you are careful to not exceed a total dose of 3,000mg per day.
Acetaminophen is usually called paracetamol outside the U.S.
It is processed by the liver and in high doses can cause serious — sometimes even life-threatening — liver injury. So if an older person has a history of alcohol abuse or chronic liver disease, then an even lower daily limit will be needed, and I would strongly advise you to talk to a doctor about what daily limit might be suitable.
The tricky thing with acetaminophen is that it’s actually included in lots of different over-the-counter medications (e.g. Nyquil, Theraflu) and prescription medications (e.g. Percocet). So people can easily end up taking more daily acetaminophen than they realize. This can indeed be dangerous; research suggests that 40% of acetaminophen overdoses cases are accidental.
But when taken at recommended doses, acetaminophen has surprisingly few side-effects and rarely harms older adults. Unlike non-steroidal anti-inflammatory drugs (NSAIDs, see below), it does not put older adults at risk of internal bleeding, and it seems to have minimal impacts on kidney function and cardiovascular risk.
Be careful or avoid this common class of painkillers
At the drugstore, the most common alternatives to acetaminophen are ibuprofen (brand names Advil and Motrin) and naproxen (brand names Aleve, Naprosyn, and Anaprox).
Both of these are part of a class of drugs known as non-steroidal anti-inflammatory drugs (NSAIDs). Many people are familiar with these medications. But in fact, older adults should be very careful before using NSAIDs often or regularly.
Unlike acetaminophen, which usually doesn’t become much riskier as people get older, NSAIDs have side-effects that are especially likely to cause harm as people get older. These include:
Increased risk of bleeding in the stomach, small bowel, or colon. Seniors who take daily aspirin or a blood-thinner are at especially high risk.
Problems with the stomach lining, which can cause stomach pain or even peptic ulcer disease.
Decreased kidney function. This can be especially problematic for those many older adults who have already experienced a chronic decline in kidney function.
Interference with high blood pressure medications.
Fluid retention and increased risk of heart failure.
Experts have estimated that NSAIDs cause 41,00 hospitalizations and 3,300 deaths among older adults every year.
Recent research has also suggested that NSAIDs cause a small but real increase in the risk of cardiovascular events (e.g. heart attacks and strokes).
Because of these well-known side-effects of NSAIDs in older adults, in 2009 the American Geriatrics Society recommended that older adults avoid using NSAIDS for the treatment of chronic persistent pain. Today, NSAIDs remain on the Beer’s List of medications that older adults should avoid or use with caution.
Despite this fact, NSAIDs are often bought by seniors at the drugstore. Perhaps even worse, NSAIDs are often prescribed to older adults by physicians, because the anti-inflammatory effect can provide relief from arthritis pain, gout, and other common health ailments.
(Commonly prescribed NSAIDs include indomethacin, diclofenac, sulindac, meloxicam, and celecoxib. These tend to be stronger than the NSAIDs available without a prescription. However, stronger NSAIDs are associated with higher risks of problems, unless they are used as a cream or gel, in which case the risks are much less.)
Now let me share a true story. Many years ago, a man in his 70s transferred to my patient panel. He had been taking a daily NSAID for several months, prescribed by the previous doctor, to treat his chronic shoulder arthritis.
I cautioned him about continuing this medication, explaining that it could cause serious internal bleeding. He seemed dubious, and said his previous doctor had never mentioned bleeding. He wanted to continue it. I decided to let it slide for the time being.
A few weeks later, he was hospitalized for internal bleeding from his stomach. Naturally, I felt terrible about it.
This is not to say that older adults should never use NSAIDs. Even in geriatrics, we sometimes conclude that the likely benefits seem to outweigh the likely risks. (This conclusion must be reached in partnership with the patient and family; only they can tell us how much that pain relief means to them, and how concerned they are about the risk of bleeding and other side-effects.) It’s also possible to reduce the risk of bleeding by having a patient take a medication to reduce stomach acid.
But far too many older adults are never informed of the risks associated with NSAIDs. And in the drugstore, they sometimes choose ibuprofen over acetaminophen, because they’ve heard that Tylenol can cause liver failure.
Yes, acetaminophen has risks as well. But every year, NSAIDs cause far more hospitalizations among older adults than acetaminophen does.
Aspirin: a special NSAID we no longer use for pain
Aspirin is another analgesic available over-the-counter.
It’s technically also a NSAID, but its chemical structure is a bit different from the other NSAIDs. This is what allows it to be effective in reducing strokes and heart attacks. It is also less likely to affect the kidneys than other NSAIDs are.
Aspirin is no longer used as an analgesic by the medical community. But many older adults still reach for aspirin to treat their aches and pains, because they are used to thinking of it as a painkiller. Aspirin is also included in certain over-the-counter medications, such as Excedrin.
Taking a very occasional aspirin for a headache or other pain is not terribly risky for most aging adults. But using aspirin more often increases the risk of internal bleeding. So, I discourage my older patients from using aspirin for pain.
Tips on safer use of OTC painkillers
In short, the safest OTC painkiller for older adults is usually acetaminophen, provided you don’t exceed 3,000 mg per day.
If you have any concerns about liver function or alcohol use or otherwise want to err on the safer side, don’t exceed 2,000 mg per day, and seek medical input as soon as possible.
You should also be sure to bring up any chronic pain with your parent’s doctor. It’s important to get help identifying the underlying causes of the pain. The doctor can then help you develop a plan to manage the pain. And don’t forget to ask about non-drug treatments for pain; they are often safer for older adults, but busy doctors may not bring them up unless you ask.
Now if your older parent is taking acetaminophen often or every day, you’ll want to be sure you’ve accounted for all acetaminophen she might be taking. Remember, acetaminophen is often included in medications for cough and cold, and in prescription painkillers. So you need to look at the ingredients list for all medication of this type. Experts believe that half of acetaminophen overdoses are unintentional, and result from people either making mistakes with their doses or not realizing they are taking other medications containing acetaminophen.
Last but not least: be sure to avoid the “PM” version of any OTC painkiller. The “PM” part means a mild sedative has been included, and such drugs — usually diphenhydramine, which is the main ingredient in Benadryl — are anticholinergic and known to be bad for brain function. (See 7 Common Brain-Toxic Drugs Seniors Should Use With Caution for more about the risks of anticholinergic drugs.)
My own approach, when I do house calls, is to check the older person’s medicine cabinet. If I find any NSAIDs or over-the-counter anticholinergic medications (e.g. antihistamines, sleep aids, etc), I discuss them with my older patient and usually remove them from the house unless there’s a good reason to leave them.
If acetaminophen isn’t providing enough pain relief
If acetaminophen doesn’t provide enough relief for your mom’s pains, then it may be reasonable to consider over-the-counter (or sometimes prescription) NSAIDs, preferably for a limited period of time. But be sure to discuss the risks and alternatives with the doctor first, and be sure to discuss possible non-drug approaches to lessen pain.
By being informed and proactive, your family can help your mom get better care for her pain, while minimizing the risk of harm from medications.
Q: How can we get my older mother to drink more water? She is susceptible to urinary tract infections and seems to be often dehydrated no matter what we do. We were also wondering if coffee and tea are okay, or should they be avoided to reduce dehydration?
A: Dehydration is indeed an important problem for older adults. It can be common even when it’s not hot outside.
Helping a senior increase their fluid intake, as you’re trying to do, is one of the best ways to reduce the risk of dehydration.
Now how to actually do this? Studies — and practical experience — suggest that the best approaches include:
Frequently offering the older person a drink, preferably on a schedule,
Offering beverages the person seems to prefer,
Not expecting older adults to drink a large quantity at a single sitting,
Addressing any continence issues that might be making the person reluctant to drink often.
But your question brings up other issues in my mind. Has frequent dehydration been confirmed? (Dehydration can be hard to correctly diagnose.) Have you been able to measure how much your mother drinks, and how does this amount compare to the recommended daily fluid intake for seniors?
Also, is the real goal to prevent or manage frequent urinary infections, and is increasing her hydration likely to achieve this?
So let’s review the basics of dehydration in older adults, and what’s known about helping older adults stay hydrated. I will then share some additional tips on helping your mother maintain hydration.
The Basics of Dehydration
What is dehydration and what causes it?
Dehydration means the body doesn’t have as much fluid within the cells and blood vessels as it should.
Normally, the body constantly gains fluid through what we eat and drink, and loses fluid through urination, sweating, and other bodily functions. But if we keep losing more fluid than we take in, we can become dehydrated.
If a person starts to become dehydrated, the body is designed to signal thirst to the brain. The kidneys are also supposed to start concentrating the urine, so that less water is lost that way.
Why are older adults at higher risk for dehydration?
Unfortunately, the body’s mechanisms meant to protect us from dehydration work less well as we age. Older adults have reduced thirst signals and also become less able to concentrate their urine.
Other factors that put older adults at risk include:
Chronic problems with urinary continence, which can make older adults reluctant to drink a lot of fluids
Memory problems, which can cause older adults to forget to drink often, or forget to ask others for something to drink
Mobility problems, which can make it harder for older adults to get something to drink
Living in nursing homes, because access to fluids often depends on the availability and attentiveness of staff
Dehydration can also be brought on by an acute illness or other event. Vomiting, diarrhea, fever, and infection are all problems that can cause people to lose a lot of fluid and become dehydrated.
Last but not least, older adults are more likely to be taking medications that increase the risk of dehydration, such as diuretic medications, which are often prescribed to treat high blood pressure or heart failure.
A UK study of older adults in residential care found that 46% had impending or current dehydration, as diagnosed by blood tests.
How is dehydration diagnosed?
In older adults, the most accurate way to diagnose dehydration is through laboratory testing of the blood. Dehydration generally causes abnormal laboratory results such as:
Elevated plasma serum osmolality: this measurement relates to how concentrated certain particles are in the blood plasma
Electrolyte imbalances, such as abnormal levels of blood sodium
Low urine sodium concentration (unless the person is on diuretics)
(Doctors often sub-classify dehydration based on whether blood sodium levels are high, normal, or low.)
Dehydration can also cause increased concentration of the urine — this is measured as the “specific gravity” on a dipstick urine test. However, this is not an accurate way to test for dehydration in older adults, since we tend to lose the ability to concentrate urine as we get older. This was confirmed by a 2016 study, which found that the diagnostic accuracy of urine dehydration tests in older adults is “too low to be useful.“
There are also a number of physical symptoms associated with dehydration. However, a 2015 study of older adults found that the presence or absence of dehydration symptoms is not an accurate way to diagnose dehydration.
Physical signs of dehydration may include:
dry mouth and/or dry skin in the armpit
high heartrate (usually over 100 beats per minute)
But as noted above: the presence or absence of these physical signs are not reliable ways to detect dehydration. Furthermore, the physical symptoms above can easily be caused by health problems other than dehydration.
So if you are concerned about clinically significant dehydration — or about the symptoms above — blood tests results may be needed. A medical evaluation for possible dehydration should also include an interview and a physical examination.
What are the consequences of dehydration?
The consequences depend on how severe the dehydration is, and perhaps also on how long the dehydration has been going on.
In the short-term, dehydration can cause the physical symptoms listed above. Especially in older adults, weakness and dizziness can provoke falls. And in people with Alzheimer’s or other forms of dementia, even mild dehydration can cause noticeable worsening in confusion or thinking skills.
Dehydration also often causes the kidneys to work less well, and in severe cases may even cause acute kidney failure.
The consequences of frequent mild dehydration — meaning dehydration that would show up as abnormal laboratory tests but otherwise doesn’t cause obvious symptoms — are less clear.
Chronic mild dehydration can make constipation worse. Otherwise, a 2012 review found that the only health problem that has been consistently associated with low daily water intake is kidney stones.
A 2013 review on fluid intake and urinary system diseases concluded that it’s plausible that dehydration increases the risk of urinary tract infections, but not definitely proven.
Speaking of urinary tract infections (UTIs), if you are concerned about frequent bacteria in the urine, you should make sure this reflects real UTIs and not simply a sign of the older person’s bladder being colonized with bacteria.
Whether the dehydration appears to be mild, moderate, or severe
What type of electrolyte imbalances (such as high/low levels of sodium and potassium) appear on laboratory testing
If known, the cause of the dehydration
Mild dehydration can usually be treated by having the person take more fluids by mouth. Generally, it’s best to have the person drink something with some electrolytes, such as a commercial rehydration solution, a sports drink, juice, or even bouillon. But in most cases, even drinking water or tea will help.
Moderate dehydration is often treated with intravenous hydration in urgent care, the emergency room, or even the hospital. Some nursing homes can also treat dehydration a subcutaneous infusion, which means providing fluid through a small IV needle placed into the skin of the belly or thigh. This is called hypodermoclysis, and this is actually safer and more comfortable for seniors than traditional IV hydration.
Severe dehydration may require additional intervention to support the kidneys, and sometimes even requires short-term dialysis.
I was unable to find research or guidelines clarifying which fluids are best to drink. This is probably because clinical research hasn’t compared different fluids to each other.
As to whether certain fluids are dehydrating: probably the main fluid to be concerned about in this respect is alcohol, which exerts a definite diuretic effect on people.
The effect of caffeine on causing people to lose excess water is debatable. Technically caffeine is a weak diuretic. But real-world studies suggest that people who are used to drinking coffee don’t experience much diuretic effect.
Now, caffeine may worsen overactive bladder symptoms, so there may be other reasons to be careful about fluids containing caffeine. But as best I can tell, coffee and tea are not proven to be particularly dehydrating in people who drink them regularly.
The safest approach would still be to drink decaffeinated drinks. But if an older person particularly loves her morning cup of (caffeinated) coffee, I’d say to consider accommodating her if at all possible.
How to help older adults to stay hydrated?
A 2015 review of nursing home interventions intended to reduce dehydration risk concluded that “the efficacy of many strategies remains unproven.” Still, here are some approaches that are reasonable to try:
Offer fluids often throughout the day; consider doing so on a schedule.
Offer smaller quantities of fluid more often; older adults may be reluctant to drink larger quantities less often.
Be sure to provide a beverage that is appealing to the older person.
See if the older person seems to prefer drinking through a straw.
Identify any continence concerns that may be making the older person reluctant to drink. Keeping a log of urination and incontinence episodes can help.
Consider a timed toileting approach, which means helping the older person get to the bathroom on a regular schedule. This can be very helpful for seniors with memory problems or mobility difficulties.
Track your efforts in a journal. You’ll want to track how much the person is drinking; be sure to note when you try something new to improve fluid intake.
Offer extra fluids when it’s hot, or when the person is ill.
Practical tips for family caregivers
Let’s now return to the issues brought up in the question.
Family caregivers are often concerned about whether an older person is drinking enough. Since dehydration is indeed very common among older adults, this concern if very important.
However, before expending a lot of energy trying to get your mother to drink more, I would encourage you to consider these four suggestions:
1.Measure how much your mother is actually drinking most days.
This can require a little extra effort. But it’s very helpful to get at least an estimate of how much the person drinks. This can confirm a family’s — or doctor’s — hunch that the person isn’t taking in enough fluid, and can help the care team figure out how much more fluid is required.
Again, the recommendation for older adults is to consume at least 1.7 liters/day, which corresponds to at least 57.5 fluid ounces. In the US, where a measuring cup = 8 ounces, this is equivalent to 7.1 cups/day.
Keep a journal to record how much fluid your older parent is drinking. It’s generally important to track anything you want to improve.
2. Confirm that your mother is, in fact, often dehydrated.
As noted above in the section on diagnosing dehydration: physical symptoms and urine tests are not enough to either diagnose dehydration or rule it out.
Instead, consider these two approaches to confirming clinical dehydration. One is to see if her energy and mental state perk up when she drinks more. The other is to talk to the doctor and request blood tests to confirm dehydration.
Now, you don’t necessarily want to request blood tests every time you suspect mild dehydration. But especially if your mother’s dehydration has never been confirmed by a serum osmolality test, it would probably be useful to do this at least once.
3. If frequent urinary tract infections (UTIs) are a concern, learn about asymptomatic bacteriuria and try to determine whether these are real UTIs versus a colonized bladder.
Sometimes I’ve seen families hellbent on increasing hydration or taking other measures, because they are concerned about repeated or persisting urinary tract infections (UTIs).
But UTIs are a bit like dehydration. A UTI is a common problem in seniors and is potentially very serious. But it’s also easily misdiagnosed, even by professionals.
Sometimes, when an older person keeps being diagnosed with a UTI repeatedly, the problem is actually that the older person has asymptomatic bacteriuria. This is a very common condition in which an older person’s bladder becomes colonized with bacteria. It probably happens because people’s immune systems get weaker as they age.
So how is this different from a UTI? Both conditions will cause a positive urine culture, meaning that bacteria is in the urine. The main difference is that in asymptomatic bacteriuria, the older person doesn’t experience pain, inflammation, increased confusion, or other symptoms of infection.
In a young person, bacteria in the urine is very uncommon and almost always corresponds to a clinically significant infection. But in an older person, bacteria in the urine is common.
So you cannot diagnose a UTI in an older person just on the basis of a positive urine culture. Instead, the family and clinician must note other signs of infection, such as pain or delirium.
Families are often surprised to learn that clinical trials have repeatedly found that it is not helpful to treat asymptomatic bacteriuria, but it’s true. In fact, a 2015 study found that treating asymptomatic bacteriuria with antibiotics increased the likelihood of later having a real UTI, and that the real UTI was more likely to be antibiotic-resistant.
One of the greatest challenges, when it comes to Alzheimer’s disease and other dementias, is coping with difficult behaviors.
These are symptoms beyond the chronic memory/thinking problems that are the hallmark of dementia. They include problems like:
Delusions, paranoid behaviors, or irrational beliefs
Agitation (getting “amped up” or “revved up”) and/or aggressive behavior
Restless pacing or wandering
Disinhibited behaviors, which means saying or doing socially inappropriate things
These are technically called “neuropsychiatric” symptoms, but regular people might refer to them as “acting crazy” symptoms. Or even “crazy-making” symptoms, as they do tend to drive family caregivers a bit nuts.
Because these behaviors are difficult and stressful for caregivers — and often for the person with dementia — people often ask if any medications can help.
The short answer is “Maybe.”
The medium-length answer is “Maybe, but there will be side-effects and other significant risks to consider, and we need to first attempt non-drug ways to manage these behaviors.”
In fact, no medication is FDA-approved for the treatment of these types of behaviors in Alzheimer’s disease or other forms of dementia.
But it is VERY common for medications — especially antipsychotics — to be prescribed “off-label” for this purpose.
This is sometimes described as a “chemical restraint” (as opposed to tying people to a chair, which is a “physical restraint”). In many cases, antipsychotics and other tranquilizing medications can certainly calm the behaviors. But they can have significant side-effects and risks, which are often not explained to families.
Worst of all, they are often prescribed prematurely, or in excessive doses, without caregivers and doctors first putting in some time to figure out what is triggering the behavior, and what non-drug approaches might help.
For this reason, in 2013 the American Geriatrics Society made the following recommendation as part of its Choosing Wisely campaign: “Don’t use antipsychotics as first choice to treat behavioral and psychological symptoms of dementia.”
You may now be wondering what should be the first choice. This depends on the situation, but generally, the first choice to treat difficult behaviors is NOT medication. (A possible exception: geriatricians do often consider medication to treat pain or constipation, as these are common triggers for difficult behavior.)
Of course in certain situations, medication should be considered. If your family member has Alzheimer’s or another dementia, I want you to be equipped to work with the doctors on sensible, judicious use of medication to manage difficult behaviors.
In this post, I’ll review the most common types of medications used to treat difficult behaviors in dementia. I’ll also explain the approach that I take with these medications.
5 Types of Medication For Difficult Behaviors in Dementia
Most medications used to treat difficult behaviors fall into one of the following categories:
1.Antipsychotics. These are medications originally developed to treat schizophrenia and other illnesses featuring psychosis symptoms. (For more on psychosis, which is common in late-life, see 6 Causes of Paranoia in Aging & What to Do.)
Commonly used drugs: Antipsychotics often used in older adults include:
Usual effects: Most antipsychotics are sedating, and will calm agitation or aggression through these sedating effects. Antipsychotics may also reduce true psychosis symptoms, such as delusions, hallucinations, or paranoid beliefs, but it’s rare for them to completely correct these in people with dementia.
Risks of use: The risks of antipsychotics are related to how high the dose is, and include:
Decreased cognitive function, and possible acceleration of cognitive decline
Increased risk of falls
Increased risk of stroke and of death; this has been estimated as an increased absolute risk of 1-4%
A risk of side-effects known as “extrapyramidal symptoms,” which include stiffness and tremor similar to Parkinson’s disease, as well as a variety of other muscle coordination problems
People with Lewy-body dementia or a history of Parkinsonism may be especially sensitive to antipsychotic side-effects; in such people, quetiapine is considered the safest choice
Evidence of clinical efficacy: Clinical trials often find a small improvement in symptoms. However, this is offset by frequent side-effects. Studies have also repeatedly found that using antipsychotics in older people with dementia is associated with a higher risk of stroke and of death.
2. Benzodiazepines. This is a category of medication that relaxes people fairly quickly. So these drugs are used for anxiety, for panic attacks, for sedation, and to treat insomnia. They can easily become habit-forming.
Commonly used drugs: In older adults these include:
Lorazepam (brand name Ativan)
Temazepam (brand name Restoril)
Diazepam (brand name Valium)
Alprazolam (brand name Xanax)
Clonazepam (brand name Klonopin)
Usual effects: In the brain, benzodiazepines act similarly to alcohol, and they usually cause relaxation and sedation. Benzodiazepines vary in how long they last in the body: alprazolam is considered short-acting whereas diazepam is very long-acting.
Risks of use: A major risk of these medications is that in people of all ages, they can easily cause both physical and psychological dependence. Additional risks that get worse in older adults include:
Increased risk of falls
Paradoxical agitation (some older adults become disinhibited or otherwise become more restless when given these drugs)
In older adults who take benzodiazepines regularly, there is also a risk of worsening dementia symptoms when the drug is reduced or tapered entirely off. This is because people can experience increased anxiety plus discomfort due to physical withdrawal, and this often worsens their thinking and behavior.
Stopping benzodiazepines suddenly can provoke life-threatening withdrawal symptoms, so medical supervision is mandatory when reducing this type of medication. (See How You Can Help Someone Stop Ativan for more information.)
Evidence of clinical efficacy: A recent review of clinical research concluded there is “limited evidence for clinical efficacy.” Although these drugs do have a noticeable effect when they are used, it’s not clear that they overall improve agitation and difficult behaviors in most people. It is also not clear that they work better than antipsychotics, for longer-term management of behavior problems.
3. Mood-stabilizers. These include medications otherwise used for seizures. They generally reduce the “excitability” of brain cells.
Commonly used drugs: Valproic acid (brand name Depakote) is the most commonly used medication of this type, in older adults with dementia. It is available in short- and long-acting formulations.
Usual effects: The effect varies depending on the dose and the individual. It can be sedating.
Risks of use: Valproic acid requires periodic monitoring of blood levels. Even when the blood level is considered within acceptable range, side-effects in older adults are common and include:
Gastrointestinal symptoms including nausea, vomiting, and/or diarrhea
Evidence of clinical efficacy: A review of randomized trials of valproate for agitation in dementia found no evidence of clinical efficacy, and described the rate of adverse effects as “unacceptable.” Despite this, some geriatric psychiatrists and other experts feel that valproate works well to improve behavior in certain people with dementia.
4. Anti-depressants. Many of these have anti-anxiety benefits. However, they take weeks or even months to reach their full effect on depression or anxiety symptoms.
Commonly used drugs: Antidepressants often used in older people with dementia include:
Citalopram, escitalopram, and sertraline (brand names Celexa, Lexapro, and Zoloft, respectively) are often used
Paroxetine (brand name Paxil) is another often-used SSRI, but as it is much more anticholinergic than the other SSRIs, geriatricians would avoid this medication in a person with dementia
Mirtazapine (brand name Remeron) is an antidepressant that can increase appetite and sometimes increases sleepiness when given at bedtime
Trazodone (brand name Desyrel) is a weak antidepressant that is sedating and is often used at bedtime to help improve sleep
Usual effects: The effects of these medications on agitation is variable. SSRIs may help some individuals, but it usually takes weeks or longer to see an effect. For some people, a sedating antidepressant at bedtime can improve sleep and this may reduce daytime irritability.
Risks of use: The anti-depressants listed above are generally “well-tolerated” by older adults, especially when started at low doses and with slow increases as needed. Risks and side-effects include:
Nausea and gastrointestinal distress, especially when first starting or increasing doses (SSRIs)
SSRIs may be activating in some people, which can worsen agitation or insomnia
Citalopram (in doses higher than 20mg/day) can increase the risk of sudden cardiac arrest due to arrhythmia
An increased risk of falls, especially with the more sedating antidepressants
Evidence of clinical efficacy: A 2014 randomized trial found that citalopram provided a modest improvement in neuropsychiatric symptoms; however the dose used was 30mg/day, which has since been discouraged by the FDA. Otherwise clinical studies find that antidepressants are not effective for reducing agitation.
5. Dementia drugs. These are the drugs FDA-approved to treat the memory and thinking problems associated with Alzheimer’s disease. In some patients they seem to help with certain neuropsychiatric symptoms. For more on the names of these drugs and how they work, see 4 Medications to Treat Alzheimer’s & Other Dementias.
Practical tips on medications to manage difficult behaviors in dementia
You may be now wondering just how doctors are supposed to manage medications for difficult dementia behaviors.
Here are the key points that I usually share with families:
Before resorting to medication: it’s essential to try to identify what is triggering/worsening the behavior, and it’s important to try non-drug approaches, including exercise.
Be sure to consider treating possible pain or constipation, as these are easily overlooked in people with dementia. Geriatricians often try scheduling acetaminophen 2-3 times daily, since people with dementia may not be able to articulate their pain. We also titrate laxatives to aim for a soft bowel movement every 1-2 days.
No type of medication has been clinically shown to improve behavior for most people with dementia. If you try medication for this purpose, you should be prepared to do some trial-and-error, and it’s essential to carefully monitor how well the medication is working and what side-effects may be happening.
Antipsychotics and benzodiazepines work fairly quickly, but most of the time they are working through sedation and chemical restraint. They tend to cloud thinking further. It is important to use the lowest possible dose of these medications.
Benzodiazepines probably increase fall risk more than antipsychotics do, and are habit forming. They are also less likely to help with hallucinations, delusions, and paranoias. For these reasons, if a faster-acting medication is needed, geriatricians usually prefer antipsychotics to benzodiazepines.
Antidepressants take a while to work, but are generally well-tolerated. Geriatricians often try escitalopram or citalopram in people with dementia.
It is usually worth trying a dementia drug (such as a cholinesterase inhibitor or memantine) if the person is not already on these medications, as these drugs also tend to be well tolerated.
I admit that although studies find that non-drug methods are effective in improving dementia behaviors, it’s often challenging to implement them.
For people with dementia living at home, family caregivers or paid helpers often have limited time and energy to learn and practice behavior management techniques. Despite the risks of antipsychotics, family members are often anxious to get some relief as soon as possible.
As for residential facilities for people with Alzheimer’s and other dementias, they vary in how well their staff are trained in non-drug approaches.
What you can do about medications and difficult dementia behaviors
If your relative with dementia is not yet taking medications for behaviors, consider these tips:
Start keeping a journal and learn to identify triggers of difficult behaviors. You will need to observe the person carefully. Your journaling will come in handy later if you start medications, as this will help you monitor for benefit and side-effects.
Consider the possibility of depression. Consider a trial of escitalopram or a related antidepressant, but realize any effect will take weeks to appear.
If the person is often very agitated, or very paranoid, or if otherwise the behavioral symptoms are causing significant distress to the older person or to caregivers, it’s often reasonable to try an antipsychotic.
Be sure to discuss the increased risk of stroke and death with the doctor and among family members. This can be a reasonable risk to accept, but it’s essential to be informed before proceeding.
It’s best to start with the lowest dose possible.
If there have been visual hallucinations or other signs of possible Lewy-Body dementia, quetiapine is usually the safest first choice.
For all medications for dementia behaviors:
Monitor carefully for evidence of improvement and for signs of side-effects.
Doses should be increased a little bit at a time.
Especially for antipsychotics, the goal is to find the minimum necessary dose to keep behavior manageable.
If your relative with dementia is currently taking medications for behaviors, then you will have to consider at least the following two issues.
One is whether the behavior issues currently seem manageable or not. If behavior is still often very difficult, then it’s important to look into triggers and other behavioral management approaches.
Ongoing agitation or difficult behaviors may also be a sign that the medication isn’t effective for your relative. So it may also be reasonable to consider a change in medication. The best is to work closely with a doctor AND a dementia behavior expert; some social workers and geriatric care managers are very good with dementia behaviors.
The other issue is to make sure you are aware of any risks or side-effects that the current medications may be causing.
The main side-effects I see people with dementia experience are excess drowsiness, excess confusion, and falls. These are usually due to high doses of antipsychotics and/or benzodiazepines. In such cases, it’s often possible to at least reduce the dosages somewhat. Addressing any other anticholinergic or brain-dampening medications can also help.
Now should you aim to get your relative completely off antipsychotics, in order to reduce mortality risk, improve alertness and thinking, and to reduce fall risk?
I have found that sometimes tapering people completely off antipsychotics is possible, but it can be a labor-intensive process. Furthermore, studies find that a certain number of people with dementia “relapse” after antipsychotics have been discontinued. Another very interesting 2016 study of antipsychotic review in nursing homes found that stopping antipsychotics tended to make behavior worse unless the nursing home also implemented “social interventions.”
In other words, attempting to completely stop antipsychotic medications involves effort, may be followed by worse behavior, and is less likely to succeed if you cannot concurrently provide an increase in beneficial social contact or exercise. It is certainly worth considering, but in people who are taking more than the starter dose of antipsychotic, it can be challenging.
No easy solutions but improvement IS usually possible
As many of you know, behavior problems are difficult in dementia in large part because there is usually no easy way to fix them.
Many — probably too many — older adults with Alzheimer’s and other dementias are being medicated for their behavior problems.
If your family is struggling with behavior problems, I know that reading this article will not quickly solve them.
But I hope this information will enable you to make more informed decisions. This way you’ll help ensure that any medications are used thoughtfully, in the lowest doses necessary, and in combination with non-drug dementia behavior management approaches.
And if you are looking for a memory care facility, try to find out how many of their residents are being medicated for behavior. For people with Alzheimer’s and other dementias, it’s best to be cared for by people who don’t turn first to chemical restraints such as antipsychotics and benzodiazepines.
If someone in your family has been diagnosed with Alzheimer’s or another dementia, chances are that they’ve been prescribed one of the “dementia medications.”
But were they told what to expect, and how to judge if the medication is worth continuing?
I’ve noticed that patients and families often aren’t told much about how well these medications generally work, and or how to determine if it’s likely to help in your situation.
So in this post, I’ll explain how these medications work. I’ll also address some of the frequently asked questions that I hear from seniors and families.
If someone in your family is taking one of these medications or considering them, this will help you better understand the medication and what questions you might want to ask the doctors. This is especially important if finances or medication costs are a concern.
Note: This article is about those drugs that have been studied and approved to treat the cognitive decline related to dementia. This is not the same as treating behavioral symptoms (technically called “neuropsychiatric” symptoms) related to dementia, such as paranoia, agitation, hallucinations, aggression, sleep disturbances, wandering, and so forth. There are no drugs FDA-approved to treat the behavioral problems of dementia. I will address the off-label use of psychiatric medication for this purpose in a future article.
4 Medications FDA-Approved to Treat Dementia
FDA-approved medications to treat Alzheimer’s and related dementias basically fall into two categories:
Cholinesterase inhibitors. These help increase the amount of the neurotransmitter acetylcholine in the brain. Acetylcholine helps neurons function well.
Memantine. This is the name of an actual drug rather than a class of drugs, but since it’s the only one available of its type, experts consider it the second category of dementia treatment drug.
Memantine (brand name Namenda) is FDA-approved to treat “moderate to severe” Alzheimer’s disease
Memantine is an “N-methyl-D-aspartate (NMDA) receptor antagonist.” It dampens the excitatory effect of the neurotransmitter glutamate in the brain.
Since over-excitation of the neurons has been associated with neurodegenerative disease, memantine is considered a “neuroprotective” drug. Hence it is potentially a “disease-modifying treatment.”
In comparison, cholinesterase inhibitors are considered “symptomatic treatment,” as they affect the function of neurons but not the underlying health of neurons.
In other words: memantine might slow down the underlying progression of Alzheimer’s, even if it doesn’t appear to be helping a person. Cholinesterase inhibitors don’t change the underlying progression of Alzheimer’s, but they can potentially help a damaged brain work a little better.
Frequently Asked Questions About Dementia MedicationsHow well do cholinesterase inhibitors work?
This is a topic that has been intensively studied and somewhat debated. Of note, most major studies of cholinesterase inhibitors are industry-funded; only the AD2000 trial was not industry-funded.
Overall, in mild to moderate Alzheimer’s disease, the average benefit seems to be a small improvement in cognition and ability to manage activities of daily living. The effect has been sometimes compared to a few months delay in progression of symptoms. (It is not clear that treatment with cholinesterase inhibitors affects long-term outcomes such as the need for nursing home level of care.)
But there’s a catch to consider: studies also suggest that although a fair number of people (30-50%) seem to experience no benefit at all, up to 20% may show greater than usual response. So there seems to be some individual variability in how these drugs work for people.
To date, we have not developed any good ways to tell ahead of time who will respond to these drugs.
So it’s important to follow a person’s cognitive symptoms, and side-effects, once they start taking a cholinesterase inhibitor. If it doesn’t seem to be helping, it’s reasonable to consider stopping the medication after a few months.
How well does memantine work?
In people with moderate to severe Alzheimer’s, memantine seems to provide some benefits, in terms of slowing the deterioration of Alzheimer’s. But again, the benefit overall seems to be fairly modest.
It’s not at all clear that people with mild to moderate Alzheimer’s benefit from memantine; a 2011 review concluded that the scientific evidence doesn’t support this claim.
Do these medications work for dementias other than Alzheimer’s disease?
However, it remains very common for patients with mild cognitive impairment to be prescribed donepezil (brand name Aricept) or another cholinesterase inhibitor.
In principle, this should be done as a trial, meaning that the patient and clinician decide to “try” the medication, see if it’s helping with memory or other thinking difficulties, and stop if it doesn’t appear to be helping.
In practice, many people with mild cognitive impairment end up taking the cholinesterase inhibitor indefinitely. They may be reluctant to stop, but in other cases, it may be that the prescribing doctor doesn’t get around to checking on whether the medication is helping or not.
What are the side-effects of these medications?
Doctors — including geriatricians — consider these medications to be “well-tolerated.” This means that most people don’t experience more than mild side-effects, and serious adverse events are rare.
For cholinesterase inhibitors:
The most common side-effects are gastrointestinal and include nausea, diarrhea, and sometimes vomiting. These affect an estimated 20% of people.
People tend to adjust to gastrointestinal side-effects with time. It helps to start with a small dose and gradually increase. Rivastigmine is also available in a patch formulation, which tends to cause less stomach upset.
In the oral formulations, donepezil tends to cause fewer side-effects than rivastigmine and galantamine.
Some people also experience dizziness, a slowed heart rate, headaches, or sleep changes.
Dizziness is probably the most common side-effect.
Some people seem to experience worsened confusion or hallucinations.
Memantine generally seems to cause fewer side-effects than cholinesterase inhibitors do.
Is it common to take more than one medication for dementia at the same time?
It’s quite common for patients to be prescribed a cholinesterase inhibitor plus memantine.
This “combination therapy” has been studied in people with moderate-to-severe Alzheimer’s, and some research suggests a small benefit compared to treatment with just one medication. However, the benefit again appears to be modest at best.
A study of combination therapy in people with mild-to-moderate Alzheimer’s did not show benefit. There is no good research evidence indicating that combination therapy is beneficial in mild Alzheimer’s.
There is no reason to take more than one cholinesterase inhibitor at the same time.
At what point do you stop dementia medications? We’re not sure it’s making a difference.
Many patients and families feel these medications don’t have much effect. This isn’t surprising, since the research results usually find that the effect in most people is small to non-existent.
As cholinesterase inhibitors are “symptomatic” treatment and not disease-modifying, if there’s no sign of improvement after a few months on the maximum dose, many experts agree that it’s reasonable to stop the medication.
That said, as these medications are well-tolerated by most patients and are unlikely to cause harm to anything more than one’s wallet, it’s common for people to remain on cholinesterase inhibitors indefinitely.
As for memantine, this drug is potentially “disease-modifying.” So it may make sense to continue memantine for a few years, even if no improvement is noted by the clinician or family.
Experts generally agree that there’s not much value in continuing either category of medication once a person has reached the stage of advanced dementia, at which point a person is bedbound, unable to speak, and shows little sign of recognizing familiar people.
Do people get worse when they stop dementia medications?
Research suggests that some patients do appear to get worse after stopping cholinesterase inhibitors.
If this appears to be the case, it’s reasonable to resume the cholinesterase inhibitor.
The discontinuation of memantine hasn’t yet been rigorously studied. An observational study of nursing home residents suggested some worsening after stopping memantine.
Do any vitamins help treat dementia?
Vitamin E — which works as an anti-oxidant in the body — has been studied for the treatment of Alzheimer’s, and may be beneficial.
In 2014, a large study of patients with moderate-to-severe Alzheimer’s disease found that daily treatment with 2000 IU/day of Vitamin E resulted in less functional decline than treatment with placebo, memantine, or a combination of memantine and vitamin E.
Of note, since the study was conducted in the VA (Veteran’s Affairs) health system, most participants were men. And again, the benefit seen was modest.
It is not clear that vitamin E helps for milder Alzheimer’s, or mild cognitive impairment. Always talk to a doctor before trying vitamin E for brain health, as vitamin E can increase bleeding risk in some people.
No other vitamins have been shown to slow cognitive decline in Alzheimer’s or other dementias. In particular, although low vitamin D levels have been associated with a risk of developing dementia, no clinical research has shown that treatment with vitamin D helps people maintain cognitive function.
A study of vitamin B supplementation in the treatment of people with mild to moderate Alzheimer’s disease did not show any benefit. Note that participants in this study had normal vitamin B12 levels at baseline; the very common problem of vitamin B12 deficiency in older adults can cause or worsen cognitive problems.
A practical approach to dementia medications
It’s easy to get a bit lost in the weeds, when it comes to medications to treat the cognitive decline of Alzheimer’s and other dementias.
Overall, these are medications that seem to offer only a little — if any — benefit to most people.
They are indeed widely prescribed, because patients are usually anxious to do everything possible to preserve their mental abilities, and because doctors want to be able to offer *something*. And most of the time, they don’t seem to harm patients or cause significant side-effects.
I think it’s reasonable for people to take or try these medications, as long as they are aware of the evidence regarding the usually modest benefit.
So what should you do about medications, if you or your older relative has been diagnosed with Alzheimer’s or another dementia?
If you have already been on dementia medications for a while:
If you aren’t experiencing side-effects, you may want to continue on the medications indefinitely.
But if you are concerned about medication expenses and pill burden, consider a trial of stopping the medication.
After all, the overall benefit of these medications is small. And you can always restart dementia medications if you think the dementia symptoms got worse off the medication.
If you are just starting the dementia journey:
If you are debating whether to start medications for dementia, keep in mind the following points:
Only cholinesterase inhibitors are FDA-approved for mild to moderate dementia. You should definitely ask questions if a clinician proposes starting memantine during the early stages.
Cholinesterase inhibitors are for symptomatic treatment and do not alter the underlying neurodegeneration. They provide a modest benefit to some people but many people don’t seem to benefit. We are not yet able to tell ahead of time whose symptoms will improve with these medications.
A reasonable and careful approach is to work with the doctor on a “trial” of a cholinesterase inhibitor. This means:
Carefully documenting cognitive symptoms before starting the medication.
Starting the medication at a low dose, and increasing to a full dose over time.
Monitoring for side-effects, such as nausea, vomiting, or diarrhea. These do usually get better with time. Consider lowering the dose or switching to a patch formulation if the side-effects are difficult to handle.
Working with the clinician to reassess cognitive symptoms after 2-3 months. If no improvement has been noted by the patient, family, or clinician, consider stopping the cholinesterase inhibitor.
Other ways to preserve cognition and brain function in dementia
Here’s the most important thing to keep in mind, when it comes to managing the cognitive decline of Alzheimer’s and other dementias:
Medications are only a small part of the solution.
If you’re concerned about preserving brain function and delaying cognitive decline, you’ll want to review the ten approaches I cover in the brain health article.
For instance, people often don’t realize that many commonly used medications are “anticholinergic,” meaning they interfere with acetylcholine in the brain and worsen thinking. In other words, these medications essentially have the opposite effect of the cholinesterase inhibitors. Which is not so good for the brain.
In a perfect world your doctors and pharmacists would notice this problem and stop the anticholinergic medications, or at least discuss the pros and cons with you. But as our healthcare system is still highly imperfect, this may not happen unless you ask for a medication review.
Delirium is another common problem that can worsen dementia and often accelerates cognitive decline. So to manage dementia and delay cognitive decline, it makes sense to learn about delirium prevention.
The bottom line on medications to treat dementia
In short: the medications we currently have available to treat Alzheimer’s disease and other medications may help a little. The main harm people experience will be to their wallets. Don’t expect these drugs to work miracles and consider stopping them if you are concerned about drug costs or pill burden.
And above all, don’t forget to think beyond medications, when it comes to optimizing brain function and delaying cognitive decline in dementia.