Dementia Map Glossary

Information is a critical resource. Dementia Map’s FREE Glossary contains short, 3-sentence descriptions of many important terms to assist you during your dementia caregiving journey.

This is not intended to replace direct medical advice. Be sure to seek the guidance of a trained medical professional. Our goal is to give you an orientation to get you started.

We are continually adding to the Dementia Map Glossary. If there is a specific topic of interest, and we have not yet covered it, please let us know. It would be our pleasure to research the subject and provide you with straightforward information.

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Activities Director

The Activities Director and their staff are valuable members of a continuing care community. Also known as Lifestyle Director, Life Enrichment Director, or Program and Events Director, their role is to plan and facilitate enrichment activities both for group settings and for individuals. Activities can range from trivia and games, to art and singing – and much, much more – helping residents stay social, intellectually stimulated, and engaged, which supports their ability to remain active and alert.

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Activities of Daily Living (ADLs)

Routine tasks such as getting dressed, basic grooming, brushing teeth unassisted, eating, using the bathroom, going to the store, and other parts of everyday life. Individuals living with dementia can need assistance with some or all ADLs, depending on the progression of the disease. Discussing ADLs with a professional can help identify any additional needs as well as potential supportive services available to them.

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Alzheimer’s Disease

As the most common form of dementia, Alzheimer’s Disease makes up over 60% of the dementia cases globally, but when affecting those under 65, its called Early Onset Alzheimer’s Disease (EOAD). This is a progressive disease, meaning it does get worse over time starting with slight memory loss, moving to an inability to have a conversation, an ultimately, death. Although a significant cause of death, individuals living with Alzheimer’s Disease can often live many years after their diagnosis.

Ambiguous Loss

Ambiguous loss in dementia refers to the emotional turmoil caused by the person’s physical presence but cognitive absence. Families experience the ongoing grief of losing the essence of their loved one, even though they are still physically there. It’s like a constant state of mourning for the person they once knew, while also caring for the person who is now different.

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Arts Engagement

Using the Arts to engage and connect with a person living with dementia is a powerful sensory activity, stimulating the brain to remember emotions as well as people, places, or things. The types of art used for this engagement can include things like visual art, music, dance and performing arts, poetry and literary arts, and more. This engagement strategy can also be called Art Therapy, Arts in Dementia, Arts Programming, Art Training, and more, and can help to entertain, distract, comfort, stimulate, or soothe the person living with dementia, not to mention the calming benefits enjoyed by the care partner.

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Assisted Living

Assisted Living communities offer additional support for those who which to remain as independent as possible, but need just a bit more support than is available at home. When needed, Assisted Living can include help with Activities of Daily Living (like bathing, dressing, taking medications, cooking, etc.) to ensure a safe living environment. Individual states (in the U.S.) regulate the Assisted Living industry, not the federal government.

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The symptoms associated with dementia are often called “dementia-related behaviors” and can include not just cognitive decline, but problems with sleep, aggressive behavior, hallucinating, and more. Modern terminology is changing, with the word “behavior” having a somewhat negative connotation and is starting to be replaced with “reaction” or “clues” or other descriptive terms. If any of these symptoms are visible, or other unexplained behaviors, it is likely a good idea to have a thorough examination by a medical professional.

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Benson’s Syndrome

Benson’s Syndrome is a rare form of dementia that affects a person’s ability to understand and recognize objects. People with Benson’s Syndrome may have trouble recognizing familiar faces, places, or objects, in spite of their eyesight being normal. This condition can make it challenging for them to navigate their surroundings and remember familiar things.


A bidet is a personal hygiene fixture to clean the genital and anal areas after toileting, using a stream of water for cleansing, promoting improved hygiene and reducing the reliance on toilet paper. For a person living with dementia, a bidet can be beneficial as it offers a more effective and gentle method of cleansing. It also reduces the risk of irritation or discomfort from using toilet paper, and providing a more independent and dignified toileting experience.

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Measurement for the presence or how severe a disease is done using a Biomarker. For example, the measurable conditions of blood are Biomarkers for heart disease, with others relating to areas such as urine, saliva, or the results of x-rays or other imaging procedures. When using Biomarkers for dementia presence or changes in the brain, it is common to use MRI or PET scans and to evaluate specific protein levels in blood, along with other testing procedures.


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Capgras Syndrome

Capgras Syndrome is when a person believes someone close to them (family member, friend, even a pet) has been replaced by an identical impostor. This disorder is classified as “delusional misidentification.” This delusion can occur as a result of brain injury or with a neurodegenerative disease like dementia with Lewy bodies or other dementias.


A Caregiver (or Care Partner, Care Companion, Care Provider, Carer, or any one of many other names!) is one person who takes care of another. The combinations of care “provider,” care “receiver,” and the types of care provided are nearly endless. Caregivers can range from family members to Registered Nurses, while those receiving care can range from someone with a sprained ankle to full Memory Care – with many more variations in between.


Cognition is an overall term for how we think, reason, and understand our environment. Dementia can change our ability to do these things successfully and is often noticed by others before we notice it in ourselves. These changes can include memory loss, finding the right words to use, getting lost or disoriented, impacts on motor skills, and difficulty planning or managing complex tasks.

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Creutzfeldt-Jakob Disease (CJD)

Although an extremely rare form of dementia, Creutzfeldt-Jakob disease progresses quickly as a result of changing proteins in the body that impact the brain and the central nervous system. Conditions associated with CJD include anxiety, depression, memory loss, and overall personality changes, often culminating with coma and death. When CJD is diagnosed, the goal is usually to manage pain and address the symptoms since no known treatment exists.

Cyber Hoarding

Accumulating digital material like emails, documents, photos, and other file types in large quantities is called Cyber Hoarding. Also known as E-Hoarding, E-Clutter, Data Hoarding, and more, this Hoarding “sub-type” can be a significant factor in raised levels of disorganization, stress, and frustration. Cyber Hoarding is enabled in part by the inexpensive nature of file storage, no time to clear out old files, and most importantly, a perceived emotional connection to the contents.

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One sign of the possible existence of dementia are delusions. This is when the individual fully and truly believes something that is false or is not real and usually occurs in mid- to late-stage dementia. A key contributing factor is when the person can’t remember objects, people, or places.


The term “dementia” refers to a variety of symptoms related to a reduction in memory and processing skills. There are many forms of dementia, depending on the impacts to the brain and how they affect the individual. Alzheimer’s Disease is just one of many types of dementia, but it is the most common.


A Doula is like a caring guide who helps families through the dementia journey. They provide emotional support, practical assistance, and comfort to both the person living with dementia and their loved ones, offering companionship and understanding every step of the way. Think of them as someone helpful who holds your hand and helps make things a little easier during a challenging time.


Simply, Dysphagia is difficulty swallowing, which can occur gradually due to a progressing illness, or it can occur suddenly due to a life experience. Many individuals over 60 years of age have trouble swallowing food and it can become an issue for those living with dementia. Dysphagia can be address in many ways, ranging from a simple change of diet to medication to surgery.

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Early Onset

When dementia occurs in someone under 65 years old, it is referred to as Early Onset Dementia. Early Onset often appears unexpectedly because only a small percentage of people who develop dementia see it occur prior to the age of 65. When an Early Onset diagnosis is received, the person can already be at any stage of the disease, whether it be early-stage, middle-stage, or late-stage.

Elder Law Attorney

An Elder Law Attorney is a legal professional who specializes in areas important to older adults. These areas go far beyond basic estate planning like long-term care planning, end-of-life decisions, and much, much more. To find an Elder Law Attorney, ask for a referral from someone with similar needs as yours, visit the National Academy of Elder Law Attorneys, or your local American Bar Association.


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Family Caregiver / Representative

Although the most common form of providing care to a loved one comes from a family member, there are other care relationships that may not include a family member. A person’s “representative” might be someone outside the family that is entrusted with making health-related decisions for that person when they can’t make them for themselves. However, to allow these decisions to be make legally, proper documents must be executed in advance, like a Health Care Power of Attorney, which specifically designates that person to make healthcare decisions when needed.

FAST Scale for Dementia

The FAST (Functional Assessment Staging Tool) Scale is a 7-step set of behavioral factors used to measure dementia progression. Developed by Dr. Barry Reisberg, M.D., Professor Emeritus of Psychiatry and research professor at NYU Langone Health, the FAST Scale is widely used for initial screening and as an ongoing gauge. Since many people don’t miss any of the steps as they progress, the FAST Scale can help families and health care professionals identify what is likely to come next.

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The physical changes in the brain of people living with dementia can cause restlessness. Often, the individual channels the associated anxiety and agitation by fidgeting – the repeated wringing of their hands, rubbing or twisting their fingers, pulling at clothing, etc. Certain medications may amplify these actions, so be sure to consult with a medical professional.

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Financial Planner

A Financial Planner provides advice to clients pertaining to insurance coverage, budgeting guidance, taxes, retirement planning, estate planning and more. Engaging a Financial Planner is a good idea if you’ve had significant changes in your life like becoming a caregiver, getting married, unexpected health issues, etc. Care should be taken when selecting a Financial Planner by asking family and friends, evaluating certifications, and conducting personal interviews.

Learn more about Financial Planners by visiting our Blog:

Frontotemporal Dementia

Although somewhat less common than other types of dementia, Frontotemporal dementia (also known as FTD) is disproportionately more common for individuals under 60 years of age. It is caused by a deterioration of the brain in the frontal and temporal lobes. These areas control language, personality, and behavior and as such, cause changes in those traits.


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How we move our legs and swing our arms when walking or otherwise moving along is known as gait. When the brain starts to lose its ability to control motor skills, it often shows up in the form of a shuffling type of walk. Researchers have found there can be different patterns to one’s gait, depending on the type of dementia and parts of the brain affected.


A physician whose specialty is the treatment and care of older adults is called a Geriatrician. They are medical school graduates, with full medical training and state licensure, and are board-certified for family practice or internal medicine. While there is no magic age at which a Geriatrician is required, consideration is warranted if the medical needs of the older patient become considerable.

Grab Bars

Grab Bars, sometimes referred to as Grab Rails, Safety Bars, or Handrails, are sturdy and secure fixtures mounted into studs or wood blocking in bathroom walls. Strategically placed to provide support and stability for navigating daily bathroom routines, specific colors and materials can be selected to further support a person living with dementia. Overall, they come in various lengths, materials, and styles to suit different needs and aesthetics.

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Technically, a Guardian is a person appointed by the court, with the responsibility to protect and look after the well-being of an “incapacitated person or a minor child.” For those living with dementia, a Guardian (or sometimes referred to as a Conservator) acts on their behalf if they can’t make appropriate decisions on their own. This oversight helps to prevent harm coming to the person living with dementia – both physically and financially.


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Hallucinations occur when one sees, hears, or even tastes something that isn’t really there. For individuals living with various forms of dementia, they are primarily caused by the impact on the brain from the progressing disease. Parkinson’s and Lewy Body dementias cause hallucinations more often than other forms and generally occur in the middle to late stages.


Often called Hoarding Disorder, the gathering and stockpiling of items generally happens in the early to mid-stages of dementia. Surrounding themselves with items through which they can repeatedly rummage may cause some sense of reassurance. Potential dangers resulting from Hoarding includes tripping hazards, pests attracted to food, bills not being paid, and much more.


Hospice and the associated Hospice Care helps individuals live as comfortably and in as much of a dignified manner as possible as they approach the end of their lives. Although often underutilized for those with dementia, Hospice should be considered once a decline in physical condition is noticeable. Hospice can help provide better pain control and result in a much better experience for the individual as well as the family.


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Incontinence is the loss of bladder or bowel control. Individuals living with dementia may develop incontinence when the brain doesn’t understand when the bladder or bowel is full. The resulting lack of control can be managed with absorbent wearables to minimize the impact on dignity and self-esteem.

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In-Home Care

Professional services offered in the home are considered In-Home Care and range from non-medical assistance like dressing, bathing, and companionship to full skilled nursing services for serious medical needs. A few examples include physical or speech therapy, nutrition advice, support for tasks around the home, assistance with wound care – and much, much more. In-Home Care can not only improve morale through an improved feeling of independence, but can also be a way to help prevent the need for unexpected and unnecessary hospitalizations.


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Joint Commission

Founded in 1951, the independent and non-profit Oakbrook Terrace, Illinois-based Joint Commission is healthcare’s largest standards and accrediting organization. Their accreditation scope spans hospitals, home care, pharmacy, medical equipment, long term care, mental health, laboratory services, and much more. Certifications are granted in areas including cardiac and stroke, palliative care, home health, patient blood management, health care staffing, among many others.


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Korsakoff Syndrome

Named after 19th century Russian neuropsychiatrist Sergei Korsakoff, Korsakoff Syndrome is a degenerative brain disease. Similar to other dementia symptoms, it can cause short-term memory loss and difficulty learning and retaining new skills. Korsakoff Syndrome is thought to be caused by a serious vitamin B-1 deficiency, impacted by the overuse of alcohol, dietary and eating disorders, excessive vomiting, and even the results of chemotherapy.


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Lewy Body Dementia

Named after neurologist Frederic Lewy, Lewy Bodies are a type of protein deposit which collect in certain areas of the brain. Those areas are responsible for controlling vision and recognition, organized speech, balance and coordination, and alertness. Although different from Alzheimer’s and Parkinson’s Diseases, Lewy Body Dementia is also a progressively degenerating disease.

Living Will

Although not actually a Will, a Living Will is a legal document that indicates your desire for the end-of-life care you wish to receive, especially if you become incapacitated and can not make that decision at the time. Living Wills often address issues such as whether life support machines are to be used, how pain management should be handled, your wishes about organ donation, and more. Since a Living Will is used to ensure your wishes are honored, health care professionals are obligated to deliver care accordingly.


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Medical Travel Companion

A healthcare practitioner, generally a nurse, who is trained to accompany travelers over long distances, whose medical condition requires professional care while they are in transit. This can include observation and monitoring, preventive measures, and scheduled or emergency interventions. The term is generally used in the context of air travel, but medical travel companions are also found on board other means of transportation.

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Memory Cafe

A Memory Cafe is a dementia-friendly event designed for both the person living with dementia AND their care partner – this IS NOT respite care. They can be highly structured with information presentations, they can be art or craft or music oriented, have a simple format with very informal conversation, or any combination of these. Memory Cafes were originally offered as “in-person” events, but many are now offered “virtually” from practically anywhere around the world, allowing participation online from the safety and comfort of home.

Mild Cognitive Impairment

Also known as MCI, Mild Cognitive Impairment is a moderate, but measurable and somewhat noticeable decline in cognitive ability. Examples include reduced ability to remember facts and/or people, concentrate, or formulate ideas. Individuals experiencing MCI may be at risk for developing various forms of dementia.

Music Therapy

Music therapy involves using music as a therapeutic tool to enhance the emotional, cognitive, and social well-being of individuals with dementia. It often includes activities like singing, listening to music, and playing instruments, tailored to the individual’s preferences and needs. The rhythmic and melodic elements of music can evoke memories, improve mood, and promote a sense of connection, providing benefits for those living with dementia.

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Neurodegenerative Disease

A Neurodegenerative Disease is when the brain tissue deteriorates and impacts the cells and how they connect to one another. The main types of dementia considered Neurodegenerative are Alzheimer’s, Vascular, Lewy body, Parkinson’s, and Frontotemporal. This is unfortunately a progressive disease and is not reversible.


Neurologists are doctors whose training has focused specifically on the Central Nervous System, which is essentially the brain and the spinal cord. They diagnose, test, and perform procedures in their work to identify subtle issues in the brain affecting memory. Although they treat patients with epilepsy, stroke, multiple sclerosis, and Parkinson’s disease, they are often consulted in situations involving dementia.


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Occupational Therapist

The Occupational Therapist’s (OT) role is to help teach individuals living with dementia to accomplish what may have previously been everyday activities like walking up stairs, getting dressed, cooking a meal, or a multitude of other tasks. This not only helps the person stay safe, but instills independence, quality of life, and overall self-esteem. Occupational Therapy can be valuable regardless whether the person living with dementia is in the early, middle, or later stages.


An Ombudsman represents the public’s interests by investigating complaints about rights violations. They know the laws and regulations surrounding care in assisted living, nursing, and memory care communities and regularly visit local facilities. Their primary role is to make sure residents remain safe.


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Palliative Care

Care is considered Palliative when it is focused on the patient’s needs, not on the medical condition. It is intended to improve the quality of life for both the patient and their family members and can take place while treatment for the medical condition is under way. One example of Palliative Care is the specialized approach to pain relief or other symptoms that is caused by medical treatments or other procedures and conditions.

Parkinson’s Disease

Parkinson’s Disease is a type of dementia that exhibits shaking through muscle tremors, restricted or slow movement, stiffness, loss of balance, and impaired speech. Although medication can be successful in helping to control the symptoms, Parkinson’s Disease is a slow, but progressively degenerative brain disease.

Placement Services

Placement Services is the umbrella term for companies or professionals who help families through the difficult process of finding, evaluating, and selecting housing for their loved ones. While Placement Services are often focused on housing, like assisted living and memory care, they can also include support that might include seeking hospital services, rehabilitation, long term care, adult day services, and more. There is generally no cost to families for Placement Services since the companies are usually compensated in a variety of ways from the communities and organizations with whom they work.


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Quality Indicators

Health care quality is measured by a set of Quality Indicators, generally represented by effectiveness, safety, timeliness, and patient-centeredness. For the dementia community, early recognition and prompt support can improve the quality of care. However, additional work is needed to standardize measurements in the areas of specialist referral effectiveness, collaboration between medical professionals, and the care and support of family care partners.

Quality of Life

Overall, Quality of Life is a gauge of the comfort and health level of an individual based on elements such as physical, emotional, and social well being. With respect to individuals living with dementia, this can also include their mood, memory and recall abilities, and their ability to engage in enjoyable activities. Paying attention to the details surrounding Quality of Life and looking for ways to improve them can be a significant tool in caring for an individual living with dementia.


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When caring for a person living with dementia, Redirection is used to assist them with moving away from a stressful situation and toward a feeling of calm. This is not about “changing the subject” but is a compassionate and artful approach which recognizes a specific problem they are having. By gently inserting an element of comfort to ease a stressful situation, it will help change their emotional direction.

Reduplicative Paramnesia

The belief that a familiar location like a home (or grocery store, coffee shop, etc.) has been replaced by a duplicate or a previous version. It can also cause the person to think there are actually multiple versions of the same location. This disorder is classified as “delusional misidentification” and can occur in someone with dementia, but is more likely caused by stroke, brain tumor or other brain damage.


When we reminisce, we bring a memory of an image or idea from the past, back into our present mind. Every time we practice reminiscence, it improves our memory by strengthening the connection to the thought. When individuals living with dementia are helped to reminisce through sharing pleasant memories, it can help to reduce stress, agitation, and wandering, and help to improve mood and overall well being.

Residential Assisted Living

Residential Assisted Living (RAL) differs from traditional Assisted Living housing options by offering much smaller communities, often with less than 20 residents in a more “residential” style. Plus, they are usually in a more residential setting than traditional Assisted Living communities. This long-term care option is sometimes called a “Group Home” and provides for a higher staff-to-resident ratio and a more family-like feel.

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Respite Care

A common definition of “respite” is a short break or time away. Respite Care is no different, as it it provides brief breaks from the hard work of caregiving by having someone else temporarily (and frequently) be responsible for the person for which care is being provided. Very similar to the instructions given on airplanes to “place your oxygen mask on first…” it is critical the caregiver maintain good mental and physical health so they continue to have the ability to care for a loved one.

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Senior Care

As we age, many of us eventually need specialized services, based on our condition. Senior Care is the collection of services specifically for our senior population, supporting physical, social, emotional, and financial needs helping them age with dignity. Services that constitute Senior Care are often referred to as Home Care, Adult Day Care, Housing, Long Term Care Insurance, Coaching and Support Groups, Hospice, and much more.

Senior Move Manager

A Senior Move Manager is a professional specializing in assisting seniors and their families with the challenging process of downsizing or moving to a new home. They offer comprehensive support which can include creating a personalized moving plan, coordinating packing, transportation, and unpacking. Their compassionate approach and expertise in senior-specific needs help to reduce the stress often associated with such life transitions, helping to make for a smooth and comfortable move for seniors and their loved ones.

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Sensitivity Analysis

In dementia related research, Sensitivity Analysis helps us understand how changing one variable might affect another. For example, how changing medication dosages might affect a someone’s cognitive function. This helps researchers make more informed decisions when developing dementia treatments.


Shadowing is when the individual living with dementia begins to follow their caregiver around constantly and often includes interrupting and mimicking. It is believed Shadowing occurs around mid- to late-stage dementia, often when memory is becoming worse, their familiar world is becoming less so, and it becomes comforting to keep their caregiver in sight at all times. This constant “invasion” of personal space can have an impact on the caregiver’s mental health and could be addressed by frequent support through Respite Care and other means.

Side Effect

A side effect is considered an unexpected and often unwanted result of taking a medication or having a medical treatment. Medications used to manage dementia symptoms can sometimes cause side effects such as confusion or dizziness. It is critical for healthcare providers to monitor their patients for side effects and adjust treatments as needed to minimize the impacts.

Skilled Nursing Care

Medical care provided by licensed nurses and therapists is considered Skilled Nursing Care. In dementia care, it can include things like managing medications, providing wound care, or helping with activities of daily living. Skilled nursing care can help those living with dementia receive the appropriate level of care and support.


Snoezelen is a type of therapy, using sensory stimulation to promote relaxation and reduce anxiety. For dementia care, Snoezelen therapy might include things like soft music, gentle lighting, or soothing textures. This type of dementia therapy can be especially helpful for individuals experiencing agitation or anxiety.

Social Prescribing

Social Prescribing is an emerging discipline where doctors and other healthcare providers recommend activities and programs which can help to improve patients’ well-being. For example, this might include art classes, gardening groups, or specific community events. Instead of a medication, it is a “prescription” for activities to boost mood, keep the brain active, and provide social interaction.

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Nerve cells contain a protein called Tau that is a normal part of their structure. Tau’s role is to assist in guiding the nutrients and other materials that ultimately provide nourishment to the brain to help it operate correctly. When Tau isn’t working properly, it can become part of the plaque “tangles” that impact the brains of individuals living with Alzheimer’s disease.

Thyroid Disease

Thyroid Disease (under-active or over-active) is often associated with dementia-like symptoms such as cognitive impairment or memory loss. Fortunately, thyroid problems can be discovered with a blood test. Since thyroid issues are often treatable, the dementia-like symptoms can be reversible.


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This lab test (testing someone’s urine sample) can be an important tool in caring for someone with early memory loss. A Urinalysis can detect the presence of a Urinary Tract Infection (UTI) that can often cause an individual living with dementia to exhibit serious confusion, very suddenly, called delirium. When a dramatic change in demeanor is noticed, it is a good idea to discuss it with your medical professional.


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Validation Therapy

Validation therapy involves empathetic communication techniques that acknowledge the emotions and reality of individuals living with dementia. Instead of correcting or contradicting them, caregivers validate their feelings and experiences, fostering a sense of understanding and respect. This approach helps to reduce distress and enhance the emotional well-being of those living with dementia.

Vascular Dementia

Vascular Dementia can result from a stroke, which restricts blood flow to the brain and damages brain tissue. As a fairly common dementia, it can also be caused by high blood pressure, heart disease, obesity, and diabetes. Cognitive decline from Vascular Dementia often gets worse over time, with mood and the ability to concentrate as some of the most visible impacts.


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Wandering is the common action of many people living with dementia when they walk away from their home or location. It is believed that the fear or stress of a busy or crowded environment, say, like a large family gathering or possibly a restaurant, might cause the person to need to get away. What is dangerous is the potential for individuals living with dementia at any stage to loose their way by not remembering where they are or where they have been.

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A Will is an important legal document, often created with the support of an attorney, that guides and clearly communicates your wishes upon your death. Generally, a Will specifies an executor, responsible for executing the details of the will, any beneficiaries who might inherit parts of your estate, and any other details that are important to you. It is a good idea to update your will from time to time to accommodate changes in your desires, family make up, or changes in your financial picture.


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Younger-Onset is often known as Early-Onset. This is generally when an individual develops dementia younger than 65 years of age. It is common for those developing Younger-Onset dementia to have it occur in their 40s and 50s.


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