Understanding the Dementia Diagnosis Process

Dementia is an umbrella term encompassing a loss of memory and other skills that impact independence. While it is normal to forget things at any age, dementia is something different. It presents a wide range of challenges for families and the person experiencing symptoms. It’s important to maintain hope through the diagnostic process, and having a plan can make all the difference. Understanding how someone is diagnosed with dementia aids in initiating an effective care plan and providing necessary support at each stage of the disease.

What is Dementia?

Dementia is a loss of cognitive functioning that is severe enough to impact a person’s daily life. Thinking, remembering, and reasoning are all impacted. Some people with dementia experience severe personality changes and have a difficult time controlling their mood or behaviors ^[1]. 

While it affects millions of people worldwide, the disease of dementia commonly affeects seniors. It progresses over time, starting with small memory lapses such as forgetting where the keys are, and eventually leads to full dependence on others for daily tasks like feeding and bathing.

Types of Dementia

There are several types of dementia. Alzheimer’s disease is the most common. The Alzheimer’s Association estimates that nearly 7 million people are living with Alzheimer’s disease ^[1]. Other types of dementia include:

• Vascular dementia
• Dementia with Lewy bodies
• Parkinson’s disease dementia
• Frontotemporal dementia
• Young-onset dementia

Signs and Symptoms of Dementia

The signs and symptoms of dementia can vary due to the type of dementia and other underlying causes. Common early indicators include ^[1]: 

• Experiencing subtle changes in memory
• Having difficulty finding the right words to communicate thoughts
• Changes in mood, including seeming depressed, fearful, or anxious
• Losing interest in favorite hobbies or activities 
• Difficulty completing common daily tasks, such as paying bills

Keep in mind that these signs do not automatically point to dementia; they may simply indicate the need for further evaluation. 

How is Dementia Diagnosed?

Once concerning symptoms are recognized, the next step involves scheduling a medical evaluation to determine whether dementia is the underlying cause. Healthcare providers review medical history, perform physical and neurological exams for diagnosing dementia, and conduct cognitive assessments. 

Physicians also take note of the timeline of symptoms and existing chronic health conditions. Additionally, they evaluate for the history of head trauma or substance use. Assessments help identify patterns and rule out other neurological conditions ^[2]. 

Neurological Examinations 

One component of an evaluation for dementia is the neurological exam. This exam evaluates how the brain and nervous system function. Neurological exams detect abnormalities that may suggest memory impairment by assessing ^[3]:

• Balance 
• Coordination
• Reflexes
• Sensory function

For example, a doctor may check for tremors or muscle weakness to determine the underlying cause for changes in walking patterns. These changes, combined with other symptoms, can point to Parkinson’s disease ^[3]. 

Cognitive Testing 

Cognitive testing is also key to diagnosing dementia. Tests offer insight into mental status and how the brain processes information and assess various areas of thinking, including:

• Memory retention and recall
• Attention span
• Language comprehension
• Language expression
• Problem-solving abilities 

Tests might involve recalling word lists or completing sequencing or logical thinking tasks. Any noticeable decline can indicate cognitive impairment consistent with dementia ^[3].

It’s important to note that dementia symptoms can overlap with other conditions, such as infections. This is one reason why a thorough evaluation is important. Ruling out curable medical conditions associated with cognitive decline helps ensure an accurate diagnosis and effective treatment plan ^[3].

Lab Tests 

There are a variety of tests used to diagnose dementia. Blood tests measure B12 levels and analyze thyroid and thyroid-stimulating hormone levels. Additional assessments may involve evaluations of kidney, liver, or blood glucose function; toxicology screening for drugs and alcohol; and tests for infections linked to dementia, such as HIV and syphilis. 

In certain cases, a lumbar puncture (spinal tap) is performed to collect cerebrospinal fluid to look for signs of Alzheimer’s-related proteins. Spinal fluid also helps rule out infections and other inflammatory conditions ^[4]. 

Imaging and Diagnostic 

Advanced imaging techniques are another valuable diagnostic tool to help determine the type of dementia present. Magnetic resonance imaging (MRI) and computed tomography (CT) scans produce brain images, helping detect structural changes that might indicate strokes, tumors, or brain shrinkage. Positron emission tomography (PET) scans measure brain activity and identifies patterns of amyloid or tau protein deposits associated with specific types of dementia ^[3].

Genetics Testing

Genetic testing is not routinely used to predict Alzheimer’s disease or other forms of dementia. However, in some cases, a neurologist or other medical specialist may order specific genetic tests. This is most common for early-onset dementia or if a person has a strong family history of the disease ^[5]. 

Memory Tests Used to Diagnose Dementia

There are different kinds of cognitive and memory tests used to check a person’s memory. They help doctors know more about the ways a person solves problems and can indicate signs of dementia, like problems with thinking, recall, or language ^[4]. 

• Mini-Mental State Examination (MMSE): The MMSE is a brief screening tool that assesses orientation, recall, attention, calculation, language, and basic motor skills. It is commonly used to track changes in cognitive function over time.
• Montreal Cognitive Assessment (MoCA): The MoCA is slightly more comprehensive than the MMSE and is especially effective at detecting mild cognitive impairment. It evaluates executive function, visuospatial skills, naming, memory, attention, language, abstraction, and orientation.
• SAGE Test: The Self-Administered Gerocognitive Exam (SAGE) is a paper-based test that patients can complete on their own. It helps identify early signs of cognitive issues and is easily administered at home or in a clinical setting for review by a healthcare provider.

Who Can Diagnose Dementia?

Primary care doctors are usually the first point of contact for those experiencing symptoms of dementia. They conduct a thorough history and medical examination and may ask the following:

• Does dementia run in the family?
• When did the symptoms start?
• Have there been changes in behavior or personality?
• Are there any other medical problems?
• What kind of medications are taken?

The answers to these questions can help determine the potential cause of memory loss and other symptoms, as well as the need for further diagnostic testing. 

In addition to a primary care doctor, several other specialists may be involved in the diagnostic process of a dementia diagnosis ^[2]. Primary care doctors consult with these specialists to obtain access to more advanced diagnostic tools and ensure a comprehensive, accurate diagnosis that guides appropriate treatment and care planning.

• Geriatric Psychiatrist: A psychiatrist is sometimes consulted to evaluate mood or behavioral symptoms and rule out psychiatric disorders that can impact cognition, such as depression or anxiety.
• Neuropsychologists: A neuropsychologist conducts detailed cognitive testing to identify specific areas of impairment and help distinguish between different types of dementia. 
• Geriatricians: Geriatricians, who specialize in the care of older adults, can contribute valuable insight, particularly when multiple medical conditions are present.

Planning After a Dementia Diagnosis

After a dementia diagnosis, planning early enables families to make decisions and communicate those decisions to the right people. It also helps to ensure the person with dementia’s wishes and goals are considered throughout the disease’s progression ^[1]. 

• Healthcare Planning: This includes establishing a care team, discussing treatment options, and documenting medical preferences through advance directives. It’s also the time when the patient should discuss their wishes for do-not-resuscitate (DNR) and do-not-intubate (DNI) orders. Patients should also communicate wishes for end-of-life care and treatment through Physician Orders for Life-Sustaining Treatment (POLST) or Medical Orders for Life-Sustaining Treatment (MOLST) paperwork. 

• Financial Planning: After a diagnosis, it’s important to organize assets, set a budget for future care, and designate someone to manage finances as needed. An assigned agent maintains the legal ability to make financial decisions and manage affairs for the person with dementia. 
• Legal Planning: Consulting with an attorney helps a person to properly address the creation or updating of important documents such as powers of attorney, wills, and guardianship arrangements. These papers protect the person’s rights and wishes, property, and financial affairs. 
• Long-Term Care Planning: Planning for the long-term focuses on evaluating future housing and support needs. Options include in-home care with family or professional caregiver support, assisted living, or nursing facilities. Each offers advantages and disadvantages, so it’s important to include the person with dementia and family members in any long-term care decisions. 
• End-of-Life Planning: This planning process provides an opportunity to plan for the final days or weeks of life by discussing end-of-life choices. Comfort care, hospice, and other decisions surrounding funeral arrangements or bedside support at the end of life honor the person’s values and dignity in the later stages of the disease.

Dementia Resources for Caregivers

It’s important to consider the entire family unit through the diagnostic and treatment process. This is because the person’s mental and cognitive decline not only impacts that person but also family members ^[6]. Perhaps that is why family caregivers are often called the “invisible second patient.” 

Family caregivers help loved ones manage the symptoms and effects of dementia through patience and empathy. However, the burden and strain of caregiving are well established and can make it difficult for families to live fulfilling lives and while providing quality care. 

There are avenues for finding help, including the following:

• National Institute on Aging (NIA), National Institutes of Health:  Alzheimer’s and Dementia Publications. A variety of publications to help families better understand the disease and what’s to come.
• The Alzheimer’s Foundation of America: Resources for the general public with a toll-free hotline that can be reached at 866-232-8484
• Administration for Community Living (ACL): Eldercare Locator 
• ACL: Planning for Dementia a guide with important information about advanced directives and long-term care planning. 
• The Alzheimer’s Association: An Alzheimer’s research initiative with a 24/7 hotline at 800-272-3900

Local resources through churches, community centers, and senior centers also help families connect with support groups and professionals to cope with the disease and find a safe community that brings answers and hope. 

Maintaining Hope on the Dementia Journey

While the process of diagnosing dementia is often complex, it also provides hope by serving as the foundation for compassionate and effective care. Identifying the causes of dementia, determining the type, and building a support system helps families respond confidently. Taking these measures reduces the fear and frustration that often accompany a diagnosis of dementia. 

With the correct information and a precise diagnosis, people with dementia can continue to find meaning and joy through their connections and activities in daily life. Mental health support for individuals living with dementia, combined with early intervention and engaged caregivers, offers a more optimistic path. Families do not have to navigate this journey alone.