Alzheimer’s Disease — Managing Stages of Dementia | NEJM

Summary

This 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

00:00

🧠 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.

05:01

🚸 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.

10:02

💊 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.

15:04

🤝 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.

Keywords

💡Cognitive diseases

Cognitive diseases refer to a group of medical conditions that affect cognitive abilities such as memory, thinking, and reasoning. In the context of the video, cognitive diseases are the central theme, with a focus on how functional impairment differentiates mild cognitive impairment from dementia. The script discusses the progression of these diseases and their impact on daily life.

💡Mild cognitive impairment (MCI)

Mild cognitive impairment is a condition where an individual experiences more memory problems than usual for their age, but these symptoms do not significantly interfere with their independence. The script mentions MCI as a state where a person is symptomatic yet functionally independent, contrasting it with dementia where functional impairment occurs.

💡Dementia

Dementia is a progressive cognitive disorder that affects memory, thinking, behavior, and the ability to perform everyday tasks. The video script emphasizes the distinction between mild cognitive impairment and dementia based on the level of functional impairment, with dementia representing a more severe stage where individuals can no longer perform tasks they once could.

💡Functional impairment

Functional impairment refers to the loss of the ability to perform activities that were previously manageable. In the script, functional impairment is the key differentiator between MCI and dementia, and it is used to identify when a person's cognitive decline has progressed to a point where they can no longer perform certain daily tasks.

💡Activities of daily living (ADLs)

Activities of daily living are the basic tasks people routinely perform to take care of themselves, such as bathing, dressing, and eating. The script discusses ADLs in the context of how dementia affects these basic abilities later in the disease progression, whereas instrumental activities are impacted earlier.

💡Instrumental activities of daily living (IADLs)

Instrumental activities of daily living are more complex tasks than basic ADLs and include managing medications, finances, driving, cooking, and using technology. The video script highlights IADLs as areas that are likely to change as a person transitions from MCI to dementia.

💡Early diagnosis

Early diagnosis refers to the identification of a disease or condition at its earliest stage. The script underscores the power of early diagnosis in cognitive diseases, allowing for early intervention, medication, support groups, and community involvement, which can help manage the condition more effectively.

💡Advanced directives

Advanced directives are legal documents that communicate a person's wishes regarding life-prolonging medical treatments. The video script discusses the importance of having advanced directives in place for individuals with cognitive diseases to ensure their wishes are respected regarding end-of-life care.

💡Caregiver

A caregiver is someone who provides care and support to a person who is unable to care for themselves due to illness or disability. The script discusses the role of caregivers in supporting individuals with cognitive diseases, emphasizing the importance of their well-being and the need for support and resources.

💡Medication management

Medication management involves organizing and keeping track of when and how medications should be taken. In the context of the script, medication management is a critical aspect of caring for someone with cognitive impairment, as it can prevent issues such as missed doses or overdosing.

💡Safety issues

Safety issues in the context of cognitive diseases relate to the risks associated with the progression of the disease, such as the potential for accidents, scams, or health hazards. The script discusses the importance of addressing these safety concerns as part of the care for individuals with dementia.

💡Progression

Progression refers to the act of moving forward or advancing, particularly in the context of a disease getting worse over time. The video script discusses the progression of cognitive diseases from mild impairment to more severe stages, emphasizing the changes in symptoms and the increasing need for care and support.

💡Self-care

Self-care involves taking actions to maintain or improve one's own health and well-being. The script touches on the importance of caregivers practicing self-care to avoid burnout and maintain their capacity to provide care for the person with dementia.

💡Support systems

Support systems refer to the network of resources, services, and people that provide assistance and care for individuals with cognitive diseases and their caregivers. The video script highlights the importance of having a strong support system, including professional services, community organizations, and family members.

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.