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Hi there! Wherever you are on the care journey, you are for sure HERE: HFC’s website, that is.
Maybe you just want to hang out with us because we’re pretty fun... or, maybe you’re seeking support, knowledge, resources (or all of the above) around dementia.
Section 1
Trip Planning:
Getting a Lay of the Land
This guide is designed specifically for care partners “under 50.” That’s in quotes because age is just a number, right? It may be more accurate to say that this guide is for you if any or all of the below apply:
And if none of these apply to you? Hop in anyway there’s plenty along the way that’s relevant to anyone who just CARES.
This is not a typical road trip.
You probably didn’t even mean to take it, you’re not entirely sure where you’re headed, and you have no idea how long it’s going to take. It’s okay. We’ll be with you for every twist and turn.
On this journey, there are great opportunities and unexpected detours. We hope this guide helps you move from “WTF is happening?!” to an adventurous outlook on what a strange and wild trip this will be with your person.
One way the dementia journey is true to a typical road trip is that there’s no one route. You know how your GPS lets you decide to save a few minutes or a few bucks on tolls? That’s what this is–a guide–not the only way to go. Consider each section an on ramp. You don’t have to take every exit. You don’t even have to start from the beginning! The key is to mostly have a plan, while also learning how to stay in the moment and take the journey day by day.
This guide will assist YOU, the care partner. You’re in the driver’s seat. (But let’s face it, every now and then it’s good to take a nap in the passenger’s seat!)
Your person, loved one,
care recipient... Care partner, caregiver...
There’s no one term that’s perfect for everyone. You may be caring for a relative or friend, a parent or spouse, you may even be a reluctant or apprehensive caregiver. There’s no judgment here. We’ll use “care partner” in most instances to leave space for all kinds of relationships – and also to honor that the person experiencing dementia is, in many cases, still taking turns behind the wheel.
Let's hit the road!
JK! You can’t just LEAVE! Do you even have a toothbrush?
Let’s take a step back.
Q: Which type of planner are you?
A: Trick question!
At this stage, it doesn’t matter. Even if you’re a freak in those vacation spreadsheets, you can’t dive into the details until you know the basics.
First Thing's First
Is it dementia, normal aging, or something else?
What's the difference between age-related memory changes and dementia?
Think of the human body like a car. Even with the best care, over time, a car will slow down, grind its gears a bit, or take a few minutes to heat up on a cold morning. Our bodies are similar. Over time, our bodies change, things don’t work as well as they used to, but there is still a lot of life in us! Our brain is no exception. Here and there, if we forget what we came into the room for, misplace our keys, or call our children by the wrong name, that may be a sign of aging, or simply stress, lack of sleep, or a lack of mindfulness. Age-related memory changes do not interrupt daily functioning.
Q: Which one is more likely a sign of dementia vs. age-related memory changes?
Yup. Look at you go.
Nope. Remember: normal lapses in memory do not impact your daily performance.
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Dementia symptoms, although similar to age-related memory changes, will occur on a daily basis and interrupt daily functioning.
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Watch HFC Science Advisor, Dr. Lisa Genova, describe the difference between common forgetfulness and possible signs of dementia, plus tips for keeping your own brain healthy and your memory sharp.
What’s the difference between
Alzheimer’s Disease and dementia?
Dementia is the category of symptoms, more of an umbrella term that includes memory loss, change in judgment, and cognitive impairment (change in thinking). Dementia symptoms can impact daily functioning. Many types of dementia exist. Dementia is not a specific disease.
Alzheimer’s Disease is a type of dementia. It is a specific brain disease and accounts for 60%- 80% of dementia cases. Alzheimer’s Disease is a degenerative disease, caused by complex brain changes following brain cell death. Alzheimer’s often presents with loss of short term memory. Alzheimer’s is a specific disease.
Dementia
Alzheimer’s Disease
Lewy Body Dementia
Frontotemporal Dementia
Parkinson’s-Related Dementia
Vascular Dementia
Alzheimer’s Disease (most common)
Alzheimer’s Disease
(most common)
A progressive disease that most often begins with mild memory loss and can lead to loss of ability to communicate and respond to one’s environment
involves parts of the brain that control thought, memory, and language
Lewy Body Dementia
(2nd most common)
Lewy Body Dementia (2nd most common)
associated with abnormal deposits of a protein called alpha-synuclein (aka Lewy bodies) in the brain
involves parts of the brain that control thinking, movement (motor control), behavior, and mood
may include visual hallucinations and changes in alertness and attention
Frontotemporal Dementia
(2nd most common)
Frontotemporal Dementia (10-20% of dementia cases)
also an umbrella term for a group of brain disorders that primarily affect the frontal and temporal lobes of the brain
may include personality and behavior changes, impulsiveness, emotional indifference, or the inability to use language properly
often begins between the ages of 40 and 65
Parkinson’s-Related Dementia
Parkinson’s-Related Dementia
Approximately 50% of people with Parkinson’s Disease will experience mild cognitive impairment (MCI): changes in memory and thinking that are noticeable, but do not impact daily activities
As Parkinson’s Disease progresses, it can include more significant or severe memory and thinking problems
Vascular Dementia
Vascular Dementia
caused by conditions that block or reduce blood flow (aka oxygen and nutrients) to the brain
commonly diagnosed in addition to another dementia diagnosis, such as Alzheimer’s
Dementia is nuanced and one type shares many overlapping symptoms with another. Stay with us for more on seeking a proper diagnosis.
Along your ride, you may see the acronym “ADRD," which stands for “Alzheimer’s Disease and Related Dementias.” This is an umbrella term that typically encompasses other diagnoses such as Lewy Body Dementia or Frontotemporal Dementia.
What other medical conditions can look like dementia? There are a variety of conditions that have dementia-like symptoms, but can be managed or even resolved with medication. This is a good reason to work with a specialist to ensure you know what you are working with and there is not a misdiagnosis.
More on that to come.
Real talk: when it comes to dementia, it can be difficult, and costly, to get a concrete diagnosis. From denial, fear, and stigma, to limited access or support, there are many barriers to a proper diagnosis.
The flip side: having a diagnosis can help you make a plan. It can also be validating for the person and the care partner to have a name for everything being experienced.
Here’s how the diagnosis process may look for you:
Step 1: Medical History, Physical Exam, and Cognitive Assessment
Start with your person’s go-to healthcare provider. This may be a general practitioner, doctor of osteopathic medicine, or geriatrician.
This provider will most likely reference medical history and conduct a physical exam to rule out other conditions that could be causing symptoms. They may also conduct a cognitive screening to assess memory, thinking, and language skills.
MMSE stands for Mini-Mental State Examination. MoCa stands for Montreal Cognitive Assessment.
Both tests assess memory, attention, language, and other cognitive functions in older adults. They share common formats (questions and tasks), length (10-15 minutes), and scoring (24 or higher [out of 30] indicates normal cognitive function, 24 or lower suggests possible cognitive impairment.)
Compared to the MMSE, the MoCA has been found to be more sensitive in detecting mild cognitive impairment and early dementia. It also, uniquely, takes into account factors such as education and age.
Neither the MMSE or the MoCa are enough, on their own, to diagnose Alzheimer’s or related dementias. They are tools to help healthcare providers determine if more testing is necessary. Both tests have limitations and are only one part of a comprehensive evaluation.
Step 2: Additional Testing
Additional cognitive testing may be next, conducted by a neurologist, geriatrician, geriatric psychiatrist, or neuropsychologist.
Brain imaging and/or blood work may be recommended.
Blood or other biomarker tests may be done to rule out other conditions.
Brain imaging is what it sounds like - images of the brain taken to see changes or abnormalities. MRI (magnetic resonance imaging) and CT (computed tomography) scans are common brain imaging techniques.
Step 3: Specialist Referral
If ADRD is suspected, your person may be referred to a neurologist or other specialist.
More specialized testing, such as a PET (positron emission tomography) scan or lumbar puncture (cerebrospinal fluid analysis), may confirm a diagnosis.
PET scans can be used to:
identify areas of the brain that are not functioning properly due to ADRD
detect the presence of amyloid plaques in the brain
Cerebrospinal fluid analysis can identify if there is:
a buildup of amyloid protein plaques in the brain
the accumulation of tau protein tangles in the brain
Remember: There is no single test that can definitively diagnose ADRD.
Early diagnosis is key. The earlier you have a diagnosis, the sooner you can begin treatment and manage symptoms.
The Pros: Most clinical trials involve extensive testing, close monitoring, and access to specialized care professionals. Sometimes, participants may receive medications or other interventions that are not available to the general public. And, bonus, clinical trial participants contribute to important scientific advancements.
The Cons: Risks may include side effects from medications or other interventions. Trials often require a significant time commitment, from which you may incur travel or other costs. Participants may not have control over their treatment or may not know whether they are receiving the active treatment or a placebo. Most clinical trials have strict eligibility criteria, limiting how many people can participate.
Ultimately: Participating in a clinical trial is a deeply personal choice. Weigh it out with your team and explore if this is the right choice for you and your person (first and foremost). At the end of the day, your person’s quality of life is what is most important, as well as yours.
If you’re trying to get your person assessed for Alzheimer’s, Medicare can feel like a “road closed” sign after a confusing detour. Your local Area Agency on Aging (AAA, not to be confused with the American Automobile Association) may be a good resource to help you understand Medicare coverage in your state. We also like the National Institute on Aging which explains, "Assessment for cognitive impairment can be performed at any visit but is now a required component of the Medicare Annual Wellness Visit. Coverage for yearly wellness visits, and importantly, for follow-up visits for cognitive assessment and care plan services, is available to patients who have had Medicare Part B coverage for at least 12 months."
Remember, generally speaking, Medicare is for people 65 or older. There are a few exceptions to getting Medicare earlier such as having a disability, End-Stage Renal Disease (permanent kidney failure requiring dialysis or a transplant), or ALS (also called Lou Gehrig’s disease).
And for reference, Medicare has four parts:
Part A (Hospital Insurance)
Part B (Medicare Insurance)
Part C (Medicare Advantage Plans)
Part D (Drug Coverage)
Breaking down the
GUIDE Model
Wait am I a care partner?
Do you know how to fill a pill box? Do you have a neurologist on speed dial? Obviously, you’re a care partner!
But what if you… Cook for or with someone who struggles on their own? Help someone read their bills and complete paperwork? Drive someone to appointments?
YOU might be a care partner too!
You are a care partner if you are involved with the care of a person living with dementia.
You don’t have to love them, you don’t even have to always like them, but you are connected, and involved, whether directly or indirectly.
Let's stretch our legs a bit.
Our friends at Archangels have developed the Caregiver Intensity Score. The score tells you if you’re "in the red," "yellow," or "green.” Knowing your score helps you adjust accordingly - and sharing it can help you communicate your needs to your support network.
Dementia symptoms, although similar to age-related memory changes, will occur on a daily basis and interrupt daily functioning.
Alzheimer's is a type of dementia.
Diagnosis looks different for everyone. Generally speaking, you can expect these three steps to guide your experience:
Step 1: Medical History, Physical Exam, and Cognitive Assessment
Step 2: Brain Imaging, Blood Work, and/or Additional Assessments
Step 3: Specialist Referral
You are a care partner if you are involved with the care of a person living with dementia whether directly or indirectly.
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Model takes effect in 2024.
GUIDE stands for:
"Guiding an Improved Dementia Experience"
The GUIDE Model's intended beneficiary population is community-dwelling Medicare fee-for-service beneficiaries, including beneficiaries dually eligible for Medicare and Medicaid, living with dementia.
Eligible beneficiaries must meet the following criteria:
Not residing in a long-term nursing home.
Beneficiary has a diagnosis of dementia, as confirmed by clinician attestation.
Have Medicare as their primary payer.
Enrolled in Medicare Parts A and B (not enrolled in Medicare Advantage, including Special Needs Plans and PACE).
Not enrolled in Medicare hospice benefit.
What does it mean for people with dementia and their caregivers?
The GUIDE model, developed by the Centers for Medicare & Medicaid Services (CMS), aims to enhance the quality of care and support for individuals living with dementia, as well as their caregivers.
Enhanced Coordination and Support
Caregiver Education and Training
Respite Care Services
Improved Access to Technology
Community Engagement and Support
Person-Centered Care
When?
The model will launch on July 1, 2024, and run for eight years.
WHY?
Dementia takes a toll on not just the people living with the disease but also on their loved ones and caregivers in a way that almost no other illness does. About 6.7 million Americans currently live with Alzheimer’s disease or another form of dementia, a number that is projected to grow by nearly 14 million by 2060.
To help address the unique needs of this population, the GUIDE Model aims to:
Improve quality of life for people living with dementia
Reduce burden and strain on unpaid caregivers
Prevent or delay long-term nursing home care for as long as appropriate
As the GUIDE model continues to roll out, caregivers can look forward to a more empowering and supportive environment, equipping them with the tools they need to navigate the complexities of dementia care successfully.
Ultimately, the GUIDE model seeks to enhance the lives of those impacted by dementia and reaffirm the crucial role that caregivers play in providing compassionate and quality care.
Click here for a look at the GUIDE Model Overview Factsheet from the Centers for Medicare and Medicaid Services (CMS).
