Alzheimer’s Disease — Managing Stages of Dementia | NEJM
Summary
TLDRThis script delves into the nuances of cognitive diseases like mild cognitive impairment and dementia, highlighting the importance of functional differences in diagnosis and treatment. It emphasizes the role of early diagnosis, the impact on daily activities, and the necessity of support systems for patients and caregivers. The discussion also covers the progression of the disease, the use of medications, and the importance of advanced care planning, while acknowledging the challenges and stressors faced by caregivers.
Takeaways
- 🧠 Function is the key differentiator between mild cognitive impairment and dementia, with the latter involving a functional impairment.
- 👨🏫 The speaker transitioned from a CEO to having a first-grade level math equivalency due to cognitive decline, highlighting the impact of cognitive diseases on daily life.
- 🏠 Geriatricians focus on both basic and instrumental activities of daily living, with the latter being more complex and often affected earlier in the progression of cognitive diseases.
- 🛑 Early diagnosis of cognitive impairment is crucial for initiating treatments and support to maintain independence and quality of life.
- 📝 Keeping a routine, staying socially engaged, and maintaining physical and mental health are essential for managing early-stage cognitive diseases.
- 👨👩👧👦 Support from family and friends, as well as community organizations, is vital for individuals with cognitive impairments and their caregivers.
- 📝 The importance of having advanced directives and discussing end-of-life care preferences early on in the disease process.
- 🚫 Safety concerns are paramount, especially as cognitive function declines, affecting areas such as medication management, finances, and driving.
- 🔑 The transition to moderate dementia often requires more support and may involve difficult decisions like activating health care proxies and considering assisted living.
- 💊 Medications for dementia aim to slow cognitive decline, but their benefits and side effects must be carefully weighed against the stage of the disease.
- 🛑 The progressive nature of dementia means increasing demands on caregivers, emphasizing the importance of self-care and access to support resources.
Q & A
What is the primary distinction between mild cognitive impairment and dementia according to the script?
-The primary distinction is based on functionality. Mild cognitive impairment involves symptoms but maintains functional independence, whereas dementia is characterized by functional impairment where individuals can no longer perform tasks they previously could.
How does the speaker's personal experience with cognitive decline manifest in their professional life?
-The speaker went from being a CEO in finance and real estate to having a first-grade level math equivalency, indicating significant cognitive decline that affected their ability to perform professional tasks.
What are the basic activities of daily living mentioned in the script?
-The basic activities of daily living include turning in bed, standing up, walking, going to the bathroom, using the bathroom, bathing, brushing teeth, dressing, and eating.
What are instrumental activities of daily living, and why are they significant in the context of cognitive diseases?
-Instrumental activities of daily living are more complex tasks such as making appointments, managing medications, finances, driving, cooking, cleaning, and using technology. They are significant because changes in the ability to perform these tasks often indicate a transition from mild cognitive impairment to dementia.
Why is it important to focus on functional changes in early-stage cognitive diseases?
-Focusing on functional changes is important for early detection of dementia, allowing for earlier intervention with medications, support groups, and community involvement, which can help manage the disease more effectively.
What is the significance of early diagnosis in managing cognitive diseases?
-Early diagnosis allows individuals to make clear their wishes regarding their care, such as preferences for staying at home or moving to a care facility, and to establish advanced directives like living wills and power of attorney.
How can family members support someone with mild cognitive impairment in their daily life?
-Family members can support by ensuring the individual is on a routine, socially engaged, maintaining good physical and mental health, and staying connected to care. Simple reminders, like text messages, can also be helpful.
What are some practical steps the speaker took to cope with their cognitive impairment?
-The speaker used strategies like setting alarms, utilizing technology like Alexa, arranging for Uber rides, and keeping a pad by the bed to make lists of tasks for the next day to prevent forgetting.
What is the role of medication in managing dementia, and how is it discussed with patients?
-Medication can help slow the progression of dementia and maintain day-to-day function. It's important to discuss realistic expectations, potential side effects, and the benefits of medication at different stages of the disease with patients.
What are the considerations for caregivers when deciding whether home care is still appropriate for a loved one with dementia?
-Caregivers must consider the physical and mental health of the individual, the ability to swallow and manage incontinence, language decline, and overall safety at home. They may need to discuss the possibility of skilled nursing or hospice care with a physician.
How does the speaker address the challenges and stress of caregiving for someone with dementia?
-The speaker acknowledges the difficulty and fluctuation of caregiving, emphasizing the importance of self-care, honest communication with healthcare providers, and seeking support from resources like the Alzheimer's Association and community services.
Outlines
🧠 Understanding Cognitive Diseases and Functional Impairment
This paragraph discusses the functional aspects of cognitive diseases, differentiating mild cognitive impairment from dementia. The speaker, a former CEO, experienced a significant decline in cognitive function, highlighting the importance of functionality in daily activities. Mild cognitive impairment is characterized by symptoms without functional dependence, while dementia involves a loss of previously performed functions. The focus is on activities of daily living, both basic and instrumental, with the latter being more susceptible to change. Early diagnosis is crucial to initiate treatments and support, potentially slowing the progression to dementia. The speaker also emphasizes the importance of early planning, routine, social engagement, and addressing safety concerns as the disease progresses.
🚸 Navigating the Stages of Dementia and Safety Concerns
The second paragraph delves into the progression of dementia and the associated safety issues. It discusses the importance of managing medications, driving, and keeping appointments as indicators of functional decline. The speaker shares personal experiences and professional insights, emphasizing the need for clear communication and support systems. As dementia advances, the paragraph addresses the need for increased support, including personal care and making difficult decisions such as activating power of attorney for health care. The speaker also discusses the transition to assisted living and the importance of managing expectations regarding the progression of the disease and the role of medications.
💊 Medication Management and the Impact of New Treatments
This paragraph focuses on the role of medication in managing dementia, setting realistic expectations for patients and caregivers. It outlines the benefits and side effects of acetylcholinesterase inhibitors and NMDA blockers, explaining their purpose in slowing cognitive decline and maintaining function. The speaker also introduces new treatments like aducanumab, donanemab, and lecanemab, which are approved for early Alzheimer's and may slow memory loss but come with risks and considerations. The importance of discussing these options with physicians and considering the individual's stage of dementia is highlighted, along with the need for ongoing conversations about medication management as the condition progresses.
🤝 The Challenges and Realities of Caregiving in Dementia
The final paragraph reflects on the challenges faced by caregivers of dementia patients, emphasizing the importance of self-care and realistic expectations. The speaker acknowledges the cumulative stress of caregiving and the fluctuating nature of providing care, advocating for open conversations with healthcare providers about the caregiver's well-being. The paragraph also addresses the inequities in access to care and the financial burden, suggesting that physicians should be aware of community resources to support families. The speaker concludes by sharing personal growth and insights gained from their experiences, both professionally and personally, with dementia and Alzheimer's disease.
Mindmap
Keywords
💡Cognitive diseases
💡Mild cognitive impairment (MCI)
💡Dementia
💡Functional impairment
💡Activities of daily living (ADLs)
💡Instrumental activities of daily living (IADLs)
💡Early diagnosis
💡Advanced directives
💡Caregiver
💡Medication management
💡Safety issues
💡Progression
💡Self-care
💡Support systems
Highlights
Cognitive diseases are distinguished by their impact on function, with mild cognitive impairment and dementia being differentiated based on functional independence.
Mild cognitive impairment involves symptoms without functional impairment, whereas dementia presents with functional impairments affecting daily activities.
Geriatricians focus on both basic and instrumental activities of daily living to assess the progression from mild cognitive impairment to dementia.
Instrumental activities such as managing finances and driving are more likely to change during the transition from mild cognitive impairment to dementia.
Not all individuals with mild cognitive impairment progress to dementia, emphasizing the importance of early detection and intervention.
Early diagnosis allows for the implementation of support systems, medication, and community involvement to manage the disease more effectively.
The importance of maintaining routines, social engagement, and physical and mental health for individuals in the early stages of cognitive diseases.
The role of support from both family and non-family members in assisting with daily tasks and reminders for those with cognitive impairments.
The use of technology and simple reminders, such as lists and alarms, to aid memory and daily functioning for individuals with cognitive impairments.
The significance of early diagnosis in allowing individuals to make clear wishes regarding their care and living arrangements.
The importance of having advanced directives, including living wills and power of attorney, to ensure wishes are respected in the progression of cognitive diseases.
The challenges faced by families in understanding medical terminology and the necessity for clear communication from healthcare providers.
The critical nature of addressing safety issues related to medication management, finances, driving, and home safety as the disease progresses.
The need for more support in moderate stages of dementia, including assistance with dressing and personal care.
The importance of simplifying communication and breaking down tasks into manageable steps for individuals with moderate dementia.
The difficult decisions that may arise in moderate stages, such as activating power of attorney for healthcare and considering assisted living.
The emotional impact of caregiving and the importance of recognizing the fluctuating nature of caregiving capabilities.
The necessity for physicians to inquire about the well-being of caregivers and provide support to ensure the health of both the caregiver and the individual with dementia.
The financial challenges of accessing care for dementia and the role of Medicaid in providing support for those who require nursing care.
The importance of building a support system through resources such as the Alzheimer’s Association, local aging departments, and community organizations.
The personal and professional impact of experiencing dementia within a family and the value of recognizing the uniqueness of each caregiving journey.
Transcripts
When it comes to cognitive diseases
everything is about function.
Function is how we define the difference
between mild cognitive impairment and dementia.
So mild cognitive
impairment was not a phrase
that I was even, had ever heard of
once I was diagnosed with it.
I was teaching at the time
and I was running into problems
where I was forgetting
what I was teaching.
I went from being a CEO
in finance and real estate to having
a first-grade level math equivalency.
With mild cognitive impairment
you’re having symptoms
but you’re functionally independent.
With dementia
you have a functional impairment.
There’s something you have previously done
that you no longer are able to do.
As a geriatrician,
we focus on instrumental and basic
activities of daily living.
Now, basic activities of daily living
are affected much later;
you have to turn in bed,
you have to stand up,
you have to walk,
go to the bathroom,
use the bathroom, bathe,
brush your teeth, dress, and then eat.
Your instrumental activities
are much more complicated.
Making appointments,
managing your medications,
managing your finances, driving,
cooking, cleaning,
using technology;
those are the ones that are more likely
to change as you’re
going from mild cognitive impairment
to dementia.
“Well, hello, Mr. Bester.”
So, in someone that you’re evaluating
with mild cognitive impairment,
it’s really important to focus on
are you managing your medications?
Are you driving okay?
Are you making your appointments
and keeping your appointments?
Because not everyone
with mild cognitive impairment
progresses to dementia.
Those functional changes
are what defines having dementia.
So you want to catch that early
because you would start medications sooner,
you’d send them to support groups,
you’d get them involved
in the community organizations.
There’s just a lot that can happen
that’s triggered
with this change in the stage.
At the time that I learned
that my father likely
had Alzheimer’s disease,
He had mild cognitive impairment.
Maybe he had mild-stage dementia,
but we thought of it
as he has Alzheimer’s.
And you immediately
go to the end of like a person
can’t do these things,
but really in truth they can.
So we prevented him
from doing the things he could do
with help.
In the early stage,
the key things are making sure
they’re on a routine,
they’re socially engaged,
their physical health is well,
their mental health is well,
and that they’re connected to care.
I think that there’s small ways
that I see in my family
that they’re,
they’re on my team.
They will just simply send me
a text message
you know, “Mom, remember,
I can’t do this tomorrow,”
or something like that.
And she wouldn’t have done that earlier.
Support doesn’t mean
they have to be of blood relations.
I had a friend come over
and I said, you know,
“I need to put some food in the freezer
that I can just pull out
and help me make some meatloaf.”
Alarms, Alexa,
you know, Uber.
And I also keep a pad by my bed
to make a list of the things that I know
I need to do tomorrow
because I would forget otherwise.
So I think
that kind of listing stuff really,
at this stage anyway, it helps a lot.
The power of an early diagnosis
is that a person
can make clear what they wish.
For instance, do you want to be at home?
Most people say yes,
but at what point
do you feel like
it would be okay
for your loved one
to have you in a care facility
instead of at home?
I think it’s important
to have advanced directives.
They would want a feeding tube,
if they would want
resuscitation, have a living will,
have power of attorney
so someone can speak on their behalf
and understands their wishes.
For a lot of families,
this is totally new to them.
Many times
not having a good understanding
of the medical terminology.
So it is important
how it is presented to the families;
a conversation with the physician
as well
as if there’s a nurse
or social worker available as well.
The first year
post-diagnosis was getting
what I called our ducks in order.
Everything was about planning
and making sure
that we could be done with that
so that they could live.
Erring on the side
of autonomy,
especially earlier in the disease, to me
makes the most sense.
That’s a tough conversation
for a family member
that’s stressed and worried.
And so you have to talk to them
about their concerns,
which makes sense too.
For every function that we address
there is a safety issue.
So with medications, it’s not taking them
or taking too much of them. For finances,
it’s being scammed
or missing your bills. For driving,
there’s obviously accidents.
But even appointments, missing
your doctor’s appointment.
Guns and hunting rifles,
we worry about
a situation
in which you might be confused
and use this weapon.
Home safety,
a person could be leaving their stove on.
Even something as simple as, “Do you feel
comfortable
leaving your loved one at home
when you go out?
Is he or she safe to be by themselves?”
As a provider, it’s important to discuss
those safety issues
and possibly make the needed changes
where we now err on safety
versus autonomy.
In a moderate stage, there
is a need for more support.
Making sure that they’re able to get
dressed, take care of themselves.
Through the course of my personal
and professional time
working with people with dementia,
some of the big things
that I’ve learned is to be slow,
having good eye contact with them,
being aware of what your body language is;
you might be crossing your arms
and that might come off in a negative way.
Simplifying what you’re saying
and breaking stuff down into step by step.
With my mom if I just said, “Get undressed,”
she wouldn’t know what to do.
She’d just kind of stand and look at me.
So instead I was like, “Okay,
take your shoes off, now
take your socks off.”
If I put it in the simpler steps,
then she was a lot more able to follow
what I was trying to get her to do.
In that moderate stage,
sometimes there has to be
some hard decisions. It may be a time
to actually activate
the power of attorney for health care.
And they also may be transitioning
into assisted living.
I would say
one of the next hardest decisions,
after that first diagnosis, is
when is home not enough?
I felt like I was a caregiver
for so long,
and I know the rest of my family
felt that way too.
Once she was being taken care of
by other people,
I finally felt like
I could be her daughter again.
It’s really important
that doctors explain to families
that the body
is no longer able
to hold on to nutrients.
There may be difficulty in swallowing,
incontinence has increased.
Many times there’s a break down in skin.
There’s a decline in language.
Some families, they may
make the decision
that they will keep them at home.
And if you make that type of decision,
then the physician should let them know
you are going to need more support.
They may discuss skilled nursing
or that person
may be a potential candidate for hospice.
So these conversations are
really critical.
It’s not an illness anybody wants.
It’s certainly an illness
people are afraid of
but it’s something
they can learn to manage
or they have to learn
how to manage as best they can.
And I make that point of
what’s really most important
is the day-to-day
management of the disease
and then the medicine
can be helpful on top of that.
When I talk to patients about medications,
and how I’d encourage primary
care to talk to patients,
is to set realistic expectations.
It all comes down to the stage.
If a person has mild-stage
dementia, acetylcholinesterase
inhibitors slow
the natural breakdown
of the chemical signal in your brain
that helps with memory and attention.
I start by saying,
“You might feel like
your attention is better
or your memory is at least not as bad.”
I frame it that way.
“You might not notice anything.”
I then follow up with side effects,
stomach upset, diarrhea,
nightmares, slowed heart rate.
And then I think it’s
a matter of offering.
“How do you feel?
Based on what I said to you,
do you want to try this medication?”
The main benefit
is that a majority of people who are on it
stay stable longer.
Mild change is a good thing
in a progressive condition.
When they’re in mild stage,
I prepare them. I’ll say,
“When you progress to moderate
there will be a different medication
for you.”
When they get to a moderate stage,
we suggest adding memantine.
It’s an NMDA blocker.
It is to maintain
your day-to-day function.
There aren’t that many side effects,
so I list a couple of them.
And then I say to them, “You know,
when you reach the moderate severe,
I think we need to talk about
getting you off of these medications.
The side effects are not worth
the potential benefit.
You get to make the call,
but that’s a conversation
I’d like to have when this point comes.”
People have probably heard about the new treatments
aducanumab, donanemab, and lecanemab.
These treatments are only approved for people with early Alzheimer’s,
but it looks like there is a mild slowing of memory loss
and people stay in a milder state longer.
But, it’s not a large effect.
The conversation is about,
“Well, where are you exactly
in the course of this condition?
Do you have mild cognitive impairment?
Do you have mild-stage dementia?”
If you’re moderate, moderate severe,
I will say, “I’m sorry,
but this medication is not for you.”
If you do fall into it,
I talk about the success
of these drugs removing the first protein
of Alzheimer’s disease from your brain.
And we think that’s incredible.
How that impacts you as a person, that’s being debated,
or that’s at least not as impactful as we would like it to be.
So I present it as there’s some good,
there’s some bad.
Let’s think about side effects.
Let’s think about practicality.
They’re expensive.
You’d have to go into
an infusion center once or twice a month.
And there’s risk.
The main risk is amyloid-related
imaging abnormalities
where people can get fluid
shifts in the brain.
Usually there are no symptoms
associated with this,
but there can be.
They can be really serious
and even fatal.
They have to be willing to have safety MRI,
especially during the first six
months of treatment.
People need to weigh that risk
against the potential benefit.
And their doctors need to help them.
When people focus
on the medical side, it’s
because it’s something we know
and it’s easier to fall back
onto something
that is more objective.
A medication, use it or not. A blood test,
abnormal or not.
There’s a lot more nuance
to the more important things.
Each stage of this disease
provides its own unique challenges.
And it’s progressive,
and so it’s a progressive amount
of increasing work for a care partner.
The journey was so long with us.
It was just a long haul.
Cumulative stress is a very real thing.
The story of the care partner
that just does everything
flawlessly is not real.
And I feel like that
does a disservice
to the real caregivers out there
because it sets this unrealistic
standard of what things should look like.
The real aspect of caregiving
is that it’s difficult
and that it fluctuates.
In some moments you’re amazing,
and some moments you’re not.
At that time
I did not know anything about dementia,
Alzheimer’s, anything like that.
I knew nothing about that.
But I knew I can’t stand this.
I think if I were to go back
and do it again
I would practice a lot more self-care
throughout the journey as a caregiver.
What I hear from a lot of caregivers
is that the physician
never asked them how they are doing.
In the end
it’s about the well-being
of the two people,
the care partner and the person
living with dementia.
We have to have that conversation.
And so I always frame it
in, “How can I support you?”
Be honest with your doctor
so that they can get you
to the right resources.
Because being a caregiver to somebody
that’s with dementia, you get worn out.
And so it’s not only going to help them,
but it’s going
to help your mental capacity
to be able to handle
what they’re going through.
Because it’s a difficult road.
There are a lot of
inequities in access to care.
Home health care, around the clock care,
nursing home care
is very expensive.
It helps if you have financial resources.
That’s not true for many people.
So the failsafe mechanism is Medicaid.
When someone requires nursing care, then
the state and the federal government
pay for that.
But that’s not a great strategy
in my opinion,
because the people need care
right from the get-go.
When it comes
to just overall
goals of care
and advanced-care planning,
built into that care plan
must be a way of building support.
There’s certainly support
available
through the Alzheimer’s
Association, information, training,
support groups.
There are services
through the department
of aging
in most states.
And a lot of churches help
families get resources.
When we look at
how many families say
that they don’t know
about education or programs
or they don’t know about access
to health care resources, it’s really important
that physicians know about resources
that are in the community.
It’s been years since my father passed.
And I think the experience defines
who I am professionally
and I think a lot personally.
And with patients,
it allows for me
to recognize the big picture,
and that nothing is fixed,
and that there is no right way to do it.
And so that allows me
to have that space to just be there
with them
and offer what I can.
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