They are doctors and even specialists so why is it so difficult to diagnose dementia?  As already mentioned, there are many reasons and here are several more.  Cultural and educational factors can further complicate getting to an accurate diagnosis. That is, the education and culture of the patient.  People from different cultural or educational backgrounds may not perform well on standardized cognitive tests that were developed for other populations.  Similarly, individuals with less formal education or literacy may appear cognitively impaired when in fact they simply interpret the test questions differently.  These cultural and socioeconomic biases can lead to underdiagnosis in some groups and overdiagnosis in others, emphasizing the need for culturally sensitive assessment tools.

Other factors such as fear and denial among patients and families can play a big role. Many individuals are reluctant to report any symptoms because they fear stigma, loss of independence, or being labeled as “senile.”  Family members may also downplay memory problems to protect their loved one’s dignity or to avoid facing a painful truth.  This emotional resistance delays medical evaluation, allowing the disease to advance undetected.

Some persons do not have access to specialists such as neurologists, geriatricians, or neuropsychiatrists adding yet another barrier. In many communities especially rural and underserved areas, there may be long waits for appointments or no specialists available at all.  Primary physicians may have limited time or training in diagnosing dementia. Access to advanced imaging or biomarkers which can help confirm Alzheimer’s is unevenly distributed and often expensive.

Even with testing, biological confirmation is difficult.  While imaging techniques like MRI or PET scans can show brain shrinkage, or amyloid buildup, these findings are not always indicative of Alzheimer’s.  Some people have amyloid plaques but never show symptoms, while others show cognitive decline without classic imagining findings.  Blood biomarkers, however, are improving in the ability to diagnose which improves accuracy.

Finally, the overlap between different types of dementias complicates the picture to say the least.  Many people have “mixed” dementia, meaning a combination of Alzheimer’s, vascular, and Lewy Body disease.   These mixed cases blur the diagnostic boundaries and lead to varied symptoms that don’t fit neatly into one category. Because treatment approaches and progression rates can differ depending on the dementia type, accurate diagnosis is vital but sometimes uncertain.

IN SUMMARY:

1. Dementia diagnosis is complex
2. Alzheimer’s is most common form of dementia
3. Many conditions can look like dementia
4. Dementia often starts slowly
5. Changes happen gradually so family may not notice
6. Not everyone displays same symptoms such as memory loss
7. Frontotemporal Dementia personality changes appear first
8. Low Thyroid, Vitamin deficiencies, infections dehydration, or medication side effects which are reversible can mimic dementia
9. Depression and mental health issues need to be addressed before final diagnosis
10. Education, Language, and Culture affect test results
11. Fear and Denial affect evaluation
12. Limited access to specialists
13. No access to Imaging
14. No Insurance

CONTINUE FOR FURTHER INFORMATION ABOUT DEMENTIA ON THIS BLOG SITE

There will always be a variation of symptoms among individuals as no two persons are alike in the manifestations within the disease process.  Dementia does not look the same in George as it does in your neighbor Ethel.  Some persons show major memory changes while others have trouble with speech, problem solving, personality, social judgement, or mood.  The different dementias have differing onset symptoms unlike another dementia that may be specifically memory.  For example, FTD Frontotemporal Dementia manifests mainly with speech, personality, and social awareness changes before memory loss appears.  This is where misdiagnosis can happen especially when symptoms can even mimic psychiatric conditions such as anxiety or depression.

When a person has co-existing medical conditions, it can blur the diagnosis even further.  Diseases such as diabetes, hypertension, thyroid disease, or vitamin deficiencies, —–all of which can affect cognition underscores the importance of performing a baseline laboratory workup.  Such problems as medication side effects, dehydration, infections or sleep disorders can cause reversible confusion that resembles dementia.  Without a thorough medical evaluation, these treatable causes, may be mistaken for dementia leading to an incorrect labeling and unnecessary despair.

Potentially, some psychiatric disorders such as depression, can also imitate dementia, a condition sometimes referred to as pseudodementia.  In these cases, the person may show memory loss, poor concentration, and apathy, but the underlying condition is severe depression rather than degeneration of the brain. The distinction is crucial because depression related cognitive impairment can improve dramatically with treatment, whereas dementia symptoms typically worsen over time.  Assessment of mood, motivation, and emotional history is important to differentiate the two.

Diagnosing dementia is often challenging because there is no single definitive test that can confirm the condition.  Instead, diagnosis relies on a combination of clinical observation, cognitive assessments, medical history, brain, imaging, and lab tests-all of which must be interpreted together.  Many of the early symptoms of dementia can overlay with normal aging, mental health issues, medication effects, or other medical conditions, making it difficult to determine when true dementia begins.  This diagnostic uncertainty can delay treatment and cause distress for both patients and families.

One difficulty lies in the gradual and subtle onset of symptoms.  For example, Alzheimer’s disease and most forms of dementia develop slowly often over years.  Early signs like forgetting names, misplacing items, or occasionally losing track of time can easily be dismissed as “just getting older.”  Because these symptoms progress gradually, family members may not recognize the pattern until memory loss or confusion becomes more disruptive.  By the time the problem is acknowledged, the disease may already be in a moderate stage.

They are gone but never forgotten though the holidays are difficult for families and loved ones whose person with dementia has passed away.  There are ways to continue remembering and honoring that person by making memories in your home.

Begin by creating a memory space.  Set aside a small table or spot in your home with a candle, a framed photo and perhaps one or two items that remind you of your sister, parent, or friend.  Also, a favorite ornament, perfume bottle scarf, hat, or holiday card would be a loving gesture.  Lighting the candle before meals or when the family gathers can be a quiet ritual of remembrance.

Next, incorporate them into holiday traditions such as a special dish, song or decoration they enjoyed.  Share at the meal what they liked about the special soup or salad and how it became their favorite.  It will help others remember and talk about their warmth instead of having silence and sadness.

You could do or give something in their name such as donating to a cause they cared about, adopt a family for Christmas, or volunteer somewhere meaningful.  Then, write a note or tag that says “in loving memory of (name) and present it to their son, daughter, or friend.  Acts of kindness done in their memory turn into legacy

What about sharing memories while you gather?  Invite family and friends to each write one favorite memory or a funny story about your loved one and place them in a box.  Read them together or keep them to read privately when you need comfort.

Remember you don’t need to make it perfect. Grief has its own rhythm.  What matters is that you create space for both the sadness of missing them and the love that continues.

           The holidays represent joy, tradition, and connection with loved ones. But for a person who has Dementia the holidays can feel confusing, overwhelming and even frightening.  The environment becomes louder busier, and less predictable.  Many people with dementia rely heavily on routine, familiarity, and calm surroundings.  When those supports are disrupted even with the best intentions, their coping abilities can become strained.

Large gatherings may create loneliness even in a crowd.  Think about it.  A person may see familiar faces but no longer recognizes relatives or friends who greet them with excitement.  This mismatch between others’ expectations and their own internal reality can trigger withdrawal, sadness, or even agitation.  They may feel like everyone else understands something they cannot, leading to isolation even when surrounded by loved ones.

The sensory experience of the holidays such as music, decorations, lights, food smells, and conversations with laughter can quickly become overwhelming.  What others deem festive can feel chaotic and confusing.  Noise and constant stimulation make it difficult for the brain with dementia to filter, process, or follow what is going on.  Agitation, pacing, or yelling may be their way of saying “this is too much.”

Furthermore, changes in routine and environment often cause distress.  Traveling to a family member’s home, rearranged furniture to make room for guests, or even a decorated living room can cause disorientation.  They may not know where the bathroom is, how to return to their chair, or even who lives in the home.  This can lead to clinginess, anxious wandering, or repeatedly asking to “go home” even if they are at home.

Another issue such as seeing relatives they haven’t seen in years can cause confusion or even embarrassment.  They may not remember names, relationships, or shared history which can make social interactions exhausting.

Plus, the person may become tired very quickly.  Dementia affects the brain’s energy regulation, so what seems like a brief gathering to us can feel like hours of effort to them.  Without planned quiet breaks, they can reach an overwhelm threshold that results in tears, aggression, or sudden shutdown.

What about the food on the table?  They may hallucinate or misinterpret what they see.  A cooked ham or turkey might be perceived as a live animal.  Decorative Santas may look threatening.  Shadowy lighting or flickering lights may be seen as frightening visual distortions. It is important not to argue or shame the person, instead gently validate the feeling and reduce exposure to whatever is causing the distress.

Not to forget about the caregivers. who may experience fatigue, guilt, and frustration as well.  They often feel pressured to maintain holiday traditions or please extended family.  But pushing the person with dementia to “behave,” or “fit in” or “remember” will increase stress for everyone and are not appropriate responses.  Caregivers need permission to simplify, decline invitations, shorten events, and prioritize everyone’s comfort and well-being especially for the person with dementia.

Above all, connection matters more than tradition.  A soft handhold, humming a familiar song, looking at old photo albums together, or sipping tea or hot chocolate in a calm room will be far more meaningful and successful than a big celebration.  The goal is not to recreate the holidays of the past, but to create moments of peace, presence and love in the here and now.

Dementia doesn’t just happen.  It starts burrowing its claws into us 20-30 years before we have symptoms.  So, if we have the time to stop it from happening, or at least diminish the impact what would we zero in on in order to stave it off?  Well, let me tell you one thing you won’t be as surprised as you might be right this moment just thinking about it.  Most if not, all are in our control.  Do you believe you could have control over dementia?  There still is no cure however, there are things we can all do from childhood on to adulthood that can make the symptoms lessened if we do acquire this disease.

                                           LOOK AT THESE RISK FACTORS:

1.  CHILDREN…….please have them wear helmets, seatbelts (get into car seat) and protect the head and brain if playing any contact sports.  These activities can end up handing kids TRAUMATIC BRAIN INJURIES and as they age the inflammation and injury to various parts of the brain due to repeated blows to the head resulting in concussions, can make the brain an easy target for further problems resulting in dementia signs.
2. SMOKING……It is a carcinogen causing inflammation and decreased blood flow to the brain.  The result is not only damage to the heart and lungs as well as the rest of the circulatory system but to the BRAIN itself.
3. HYPERTENSION…… or high blood pressure places pressure on the vessels carrying blood to the major organs including the brain.  Eventually those vessels become weakened decreasing the ability to feed the brain proper nutrients to remain healthy.  Maintaining proper blood pressure via diet, medication and exercise is very important.
4. ALCOHOL CONSUMPTION……Can increase the risk of dementia by damaging brain tissue, decreasing blood flow, causing inflammation, and impairing thinking and reasoning skills.  Alcohol can cause a reduction in the white matter of the brain which is important for transmitting signals between different brain areas.  It can also shrink certain regions associated with memory.  A person’s thinking skills decline as a person ages with alcohol on board especially with intake on a daily basis.  A person’s habits can increase risks to other organs such as the heart, lungs, and kidneys which are controlled by the brain.
5. DEPRESSION….may mask itself as dementia especially when the person is older.  It is crucial to obtain valid history and physical from a healthcare provider who is well versed in dementia care.  Other tests that need to be done are thyroid, vitamin deficiency, and glucose for diabetes.  Getting to understand any underlying issues will swell information to the top of the diagnostic toolbox.  This will clear the road to a more accurate diagnosis of dementia.

MORE RISK FACTORS TO COME

Responding to behaviors can be intimidating, wrongly executed, and detrimental to the person and the caregiver.  When we don’t understand the underlying reasons for displayed behaviors, we generally become reactive whether the action is right or wrong.  We need to better understand the variety of behaviors that persons with dementia display so we can employ a safe, non-aggressive action that de-escalates what is going on.  Knowledge is power.  How many times have we heard this?  Many times, I am sure; and its true. If we wrap ourselves in understanding why certain behaviors occur, we can avert chaos, disruption, and struggles to keep anxiousness from getting out of hand.

What are some of those underlying causes of dementia related behaviors that we all struggle with whether we are the caregiver or the person with cognitive decline?

1.  Physical issues such as pain, hunger, toileting needs, anxiety, night terrors and/or sundowning, (another blog coming on sundowning and how to cope)
2.  Environmental issues such as room temperature, clothing too tight, breezes thru window screens making noises that are scary.
3.  Personal triggers such as thoughts, emotions or activities that bring on a reaction such as feeling scared about a change in daily routine.

Check out my website for much more information at:

ellileclairheartbrainbooks.com

THANK YOU

What are memory cafes? Memory cafes are welcoming spaces designed for people living with dementia, their families, friends, and caregivers. They offer a safe social environment where participants can engage in activities, enjoy refreshments, and connect with others facing similar challenges.
The idea is to provide a break from the routine and isolation that often accompanies dementia creating a sense of community and support.  Memory cafes can vary in their structure, but they typically emphasize relaxation, entertainment, and interaction in a non-judgmental setting, away from the clinical environment associated with healthcare facilities.

The concept of memory cafes originated in the Netherlands and has since spread globally with cafes cropping up in community centers, libraries, churches, and even coffee shops. These cafes are often staffed by volunteers and professionals who help facilitate activities like music sessions, art therapy, games, or memory exercises tailored to the needs of participants. The setting is intentionally casual as the goal is to focus on social engagement rather than cognitive improvement allowing participants to enjoy the moment and foster a sense of connection.

Setting up a memory cafe requires thoughtful planning and consideration of participants needs. First it is essential to choose an accessible, welcoming location that can accommodate group activities and is easy for individuals with dementia and their caregivers to navigate. Next, partnerships with local organizations such as The Alzheimer’s Association, senior centers and healthcare providers can help raise awareness, recruit volunteers, and potentially secure funding and resources. Contact the Alzheimer’s Association to obtain more information.

TELEPHONE:  800.272.3900 alz.org