“An accurate early dementia diagnosis is essential. It can make a significant difference in how families navigate the diagnosis.” Esther Kane, MSN, RN
Your loved one has been diagnosed with dementia… but do you ever wonder if they’ve been diagnosed with the correct type? Do you find yourself thinking: “This diagnosis doesn’t quite fit what I’m seeing.” You’re not alone. Getting the correct diagnosis opens the right doors to support, care, and community that you might not have known existed.
We are Sue Ryan and Nancy Treaster. As caregivers for our loved ones with Alzheimer’s and other types of dementia, we’ve learned firsthand that not all dementias are the same. Understanding the specific type of dementia your loved one has ensures they’re receiving the correct medical care and helps you connect with the education, targeted support groups, and research opportunities tailored to your loved one’s specific needs.
In this post, we’re sharing insights from Esther Kane, a registered nurse and the Director of Support and Education for the Association for Frontotemporal Degeneration (AFTD). As a director of nursing in multiple memory care facilities, Esther’s entire career has been supporting and caring for individuals living with all types of dementia. In her role at AFTD, Esther works to advance early, accurate FTD diagnoses in order to improve the quality of life for those impacted by the disease.
We’re exploring five essential tips for ensuring your loved one receives the correct dementia diagnosis and how to leverage this knowledge for better care.
Tip 1: Learn More About Dementia and Push to Dig Deeper
The landscape of dementia diagnosis has changed dramatically in recent years. With the advent of FDA-approved blood-based biomarkers for Alzheimer’s disease, more people are being tested and discovering they don’t actually have Alzheimer’s disease.
If you don’t have Alzheimer’s, what do you have? This is where the journey of advocacy begins.
It’s Important To Speak Up If The Diagnosis Doesn’t Fit
Talk about what you’re experiencing. If your loved one’s memory is fine but you’re seeing dramatic personality changes or language difficulties, make sure you tell your doctor the Alzheimer’s diagnosis isn’t matching the symptoms you’re observing.
Sometimes getting the right answer requires further testing and investigation. It may require resources that aren’t currently available where your loved one is receiving their medical care. Often, families have to advocate for a more detailed diagnosis, pushing to get past a generic ‘Mild Cognitive Impairment’ or plain ‘Dementia’ label, to figure out the specific diagnosis for their loved one.
For clarification, ‘dementia’ is actually a generalized name for the decline in mental ability severe enough to interfere with daily life. Dementia isn’t one single set of symptoms or one type of disease. It covers a wide variety of diseases, making it even more important to understand specifically what you’re dealing with in as much detail as possible, so you provide the best level of care.
Tip 2: Find Your Specific Diagnosis Community, Resources, and Support
Once you dig deeper and understand the specific type of dementia, you can find targeted support. Let’s look at several of the major types of dementia:
Several main types of dementia include:
- Alzheimer’s disease — About 60% — 80% of all dementia cases, typically characterized by memory impairment.
- Frontotemporal dementia (FTD) — Includes behavioral variant FTD, primary progressive aphasia, corticobasal syndrome, and progressive supranuclear palsy.
- Lewy body dementia — Often presents with movement changes and hallucinations.
- Vascular dementia — Related to blood flow issues in the brain.
Each type of dementia has its own community and specialized resources. When you know the correct diagnosis, you gain valuable access to:
- Helplines supporting your specific form of dementia. When you call, you don’t have to explain the disease — they understand what you’re experiencing. They know the symptoms and can provide relevant guidance immediately.
- Support groups with people who truly understand. Many families report that attending a diagnosis-specific support group was the first time they felt truly understood. They didn’t have to explain anymore. Not only did group members understand, they knew about local support and resources available in the community.
- Grant programs designed for your situation. Organizations like AFTD offer grant programs (such as the Comstock Grant program) that support both caregivers and persons diagnosed. Many organizations provide financial assistance to help offset costs and provide respite support for caregivers. Several of these are: The Family Caregiver Alliance, Area Agencies on Aging, the Caregiver Action Network, and ARCH National Respite Network.
- Specialized organizations ready to help: Whether it’s AFTD, the Lewy Body Dementia Association, the Alzheimer’s Association — who also provides support for all types of dementia — or other groups, they exist to support you. They help you understand symptoms and connect you with valuable community resources. They know the answers to questions we don’t know to ask!
Many families describe finally getting the right diagnosis as finding “The right size hole for the peg.” Symptoms finally make sense. The square peg found the square hole, and it is now clicking into place. This understanding makes such a valuable, positive impact in how you navigate the disease.
Tip 3: Monitor Disease Progression and Prepare
Each type of dementia has different symptoms, different disease progression patterns, and requires different supports and programs. You can’t treat someone with Lewy body dementia the way you’d treat someone with Frontemporal dementia. You can’t approach Alzheimer’s disease the same way you’d approach primary progressive aphasia.
Understanding these symptoms supports both providers and families knowing how to correctly care for the person with the disease.
It’s demanding and challenging to navigate a dementia diagnosis alone. After receiving a diagnosis, it’s important to start building your care team. Find your care support team members — the people who understand what you’re dealing with — and bring them alongside you.
Get early referrals to specialists:
It’s reasonable you might not realize the full scope of what these professionals can do to support you. They can help you understand behaviors you’re seeing, evaluate and modify the environment to best suit the person diagnosed, and improve communication strategies. The list of support they can provide is extensive.
- Palliative care or supportive care programs
- GUIDE (the new Medicare model that has been helpful for many families)
- Dementia programs at major academic centers.
Nobody needs to navigate a dementia diagnosis alone anymore. Building your successful care team requires knowing the type of dementia you’re dealing with, so team members can best support you.
Tip 4: Investigate Clinical Trials
Understanding the type of dementia your loved one has can open valuable doors to early access for disease-modifying therapies. While disease-modifying therapies didn’t exist across dementia types 10 years ago, research has made tremendous progress in understanding these diseases and developing treatments that can help stop or slow down progression.
Disease-modifying therapies target the underlying cause of the specific dementia. This is why knowing your exact diagnosis matters so much. If a therapy attacks amyloid but your loved one doesn’t have amyloid in their brain, it won’t help. You need the right treatment for the right disease.
The exact diagnosis creates opportunities for early access to clinical trials and participation in additional research that could benefit both your loved one and future patients.
Where to find clinical trials:
- FTD Disorders Registry — A direct-to-patient registry showing clinical trials and research opportunities in the FTD space
- ClinicalTrials.gov — A comprehensive database of clinical studies
- Alzheimer’s Disease Research Centers — Many centers across the country conduct research across multiple dementia types and can connect you with local opportunities.
There are also research studies specifically for dementia family caregivers. These studies give you access to the latest thinking in training and education for family caregivers, along with other valuable resources. Participating in caregiver research can connect you with cutting-edge support and strategies.
Tip 5: Understand the Genetic Risk Associated with This Diagnosis
Not all types of dementia have genetic implications or are caused by a genetic change in DNA. When genetic factors are involved, they can vary significantly:
- Risk factor genes increase your risk of getting the disease but don’t guarantee you’ll develop it. These are common in some forms of dementia.
- Autosomal dominant genes mean the disease can pass from generation to generation. In FTD, for example, about 20% of cases have a genetic component. In families with genetic FTD, children have a 50% chance of inheriting the gene that causes the disease.
Understanding your genetic risk helps with several important areas:
- Planning for the future
- Helping your children and family prepare
- Making informed decisions about family planning
- Accessing clinical trials that specifically target families with genetic forms of dementia.
Unlike other forms of dementia, FTD has a somewhat higher genetic risk factor. Many current clinical trials are specifically targeting these families and providing opportunities for them to participate and engage. Understanding your genetic risk creates opportunities — for planning, for family discussions, and for helping the next generation prepare for a better future.
Just Start
Getting the correct dementia diagnosis matters. The correct diagnosis opens doors to community, research, and knowledge that can transform your caregiving experience. The type of dementia your loved one has determines which resources will be most helpful, which clinical trials might be available, and which community will best understand your journey.
By digging deeper, pushing for answers, and advocating for accurate diagnosis, you create access to a community that will support you as you navigate the future. Whether you’re searching for support resources, working to obtain an accurate diagnosis, exploring clinical trial opportunities, or simply looking for people who understand what you’re experiencing, diagnosis-specific organizations are here for you.
If a diagnosis doesn’t feel right — if it seems like a square peg in a round hole — trust your instinct. Keep pushing for clarity. The right diagnosis will make a significant difference in the journey both you and your caregiver are navigating.
Have you navigated the process of getting an accurate dementia diagnosis? What strategies helped you advocate effectively? Share your experiences in the comments below or on our Facebook or Instagram pages.
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