Medical Information

One of the hardest areas to navigate regarding dementia is the medical information surrounding it. Part of our motivation in starting How to Deal With Dementia was to give others a source to help explain these medical issues and a place to find answers to many of the questions we had when we went through this experience. We are not medical professionals! Yet, we reached the many topics and spoke to many different medical professionals regarding these issues.  

We quickly learned that no two cases of dementia are alike and you must realize this. We also stress the importance of talking to medical professionals about your loved one’s case. Get your questions answered. If you do not understand something, ask again. If you read something that makes you question your loved one’s care or read about something new that you think might help them, ask your medical provider.

Realize in many cases you are your loved one’s voice, so you must speak up for them. 

What is Dementia?

Dementia is an umbrella term for the diminished ability to recall, think, and perform activities of daily life (ADLs). How many people suffer from Dementia? According to the World Health Organization (WHO), around 55 million people suffer from Dementia and there is nearly 10 million new cases each year. As our aging society continues to live longer lives, the worldwide population of those with dementia is expected to increase to 78 million in 2030 and 139 million in 2050. https://www.who.int/news-room/fact-sheets/detail/dementia#:~:text=Rates%20of%20dementia,and%20139%20million%20in%202050. 

Dementia is not a part of the normal aging process, but age is a strong risk factor. For example, the majority of individuals who suffer from a dementia-related diseases reach the age of 65 years and older which then doubles every five years after, and then after age 85, the risk reaches approximately two-thirds according to the Alzheimer’s Association, Young onset dementia, where there are symptoms before the age of 65-years-old, account for 9 percent of the cases world-wide according to World Health Organization (WHO). 

Again, dementia is not a disease but rather a range of symptoms, causes, diseases or injuries that cause damage to the brain cells. This damage interferes with normal functioning of brain cells and consequently affects ones’ memory, thinking, orientation, visual perception, communication, attention, comprehension, calculation, learning capacity, language, reasoning, problem-solving and decision-making. There has been a lot of progress in dementia research, however scientist still do not know all the causes of dementia. 

There are Seven Stages of Dementia

Dementia has been characterized by seven stages. Understanding these stages will help you understand what will most likely happen next and will help you better determine their care.

· Stage 1 (No cognitive decline) – There may be some changes in an individual’s brain, but no signs of causes or symptoms will show up on a CT scan; 

· Stage 2 (Very mild cognitive decline) – An individual may start to become forgetful about words and be misplacing things, yet these minor occurrences will mostly likely go unnoticed by the people around them; 

· Stage 3 (Mild cognitive decline) – An individual starts to lose their short-term memory, for example – when someone forgets where they parked their car, regularly forgets words and items, and loses things. 

· Stage 4 (Moderate cognitive decline) – This is the stage that most people obtain a diagnosis of their loved one because the symptoms are more noticeable. Individuals start to struggle with what time or place it is, become disinterested in activities they used to enjoy, and become more disoriented with simple tasks and activities of daily life. 

· Stage 5 (Moderately severe cognitive decline) – An individual experiences major memory loss as to phone numbers, addresses, and the performance of basic tasks such as bathing, brushing their teeth, and changing their clothes. 

· Stage 6 (Severe cognitive decline) – An individual: is unaware of time and where they are, has difficulty recognizing family and friends, suffers from behavioral changes, and is dependent on others regarding their basic needs such as bathing, eating, drinking, walking, sitting. 

· Stage 7 (Very severe cognitive decline): This is the last stage when a person is entirely dependent on others regarding the basic needs, experiences loss of bladder and bowel control, difficulty communicating (struggling with words or speaking very little if at all). 

Each person’s experience with dementia is different depending on what form of dementia they have and the progression of that individual’s disease. In my grandmother’s case, she moved in with us for a small period of time when she was between Stage 4 and 5. She was for the most part able to take care of herself from washing her face, brushing her hair and teeth, dressing, to going to the bathroom. The tasks my grandmother needed assistance with was showering, cooking and walking. We had to keep her constantly entertained because she had a tendency to want to escape and wander and thus needed constant supervision. 

What Are the Most Common Forms of Dementia?

The most common forms of Dementia are: Alzheimer’s Disease, Vascular Dementia, Lewy Body Dementia, Frontotemporal Dementia, and reversible causes. Remember, not all causes of Dementia are known. 

· Alzheimer’s Disease – This is the most common form of Dementia. according to Alzheimer’s Association and accounts for 60-80 % of the cases. Alzheimer’s Disease patients have plaques, also known as beta-amyloid, that are fibrous tau proteins that damage healthy neurons and the fibers connecting them. 

What we do know is that Alz leads to tissue loss and nerve cell death in the brain. The brain actually shrinks over time.

Scientists are not sure what causes the tissue loss and cell death but believe plaques and tangles in the brain are at least part of the cause.

Plaques are clumps of a protein called beta-amyloid. The clumps interfere with the brain’s functioning by blocking the cells signaling to one another. They may also trigger an immune response where inflammation starts, and disabled cells are attacked.

Another protein called Tau generally helps keep the strands in the cells straight which is needed to function properly. If tangles start forming the strands disintegrate.

Plaques and tangles spread through the cortex of the brain in a predictable pattern. 

Early Alzheimer’s - The earliest changes may have occurred even as much as 20 years before a person is diagnosed and might affect learning and memory and thinking and planning.

Mild to Moderate Alzheimer’s, generally lasts from 2-10 years and the plaques and tangles spread to additional areas of speaking and understanding speech and one’s sense of where one’s body is in relation to objects around you.

Severe Alzheimer’s – may last 1-5 years and the brain starts to shrink a lot. Individuals may no longer recognize loved ones, often lose ability to communicate and have difficulties taking care of themselves.

See https://www.alz.org/alzheimers-dementia/what-is-alzheimers/brain_tour_part_2

· Experts claim a small percentage of Alzheimer’s Disease is related to the mutation of three genes, one important gene is apolipoprotein E4 (APOE), which can be passed down to parent to child. 

· Vascular Dementia – this is the second most common form of Dementia. This form of dementia damages the blood vessels that supply blood to one’s brain. Blood vessel problems may lead to strokes and may affect the white matters fibers of the brain. 

· Lewy Body Dementia – this is a progressive form of Dementia that includes abnormal balloon like clumps of protein found in the brain, which have been found in Alzheimer’s Disease and Parkinson’s.

· Frontotemporal Dementia – this form of Dementia is characterized by the breakdown of nerve cells and their connections in the frontal and temporal lobes of the brain. 

· Mixed Dementia – a combination of two or more types of Dementia usually seen in people 80 years old and older. 

Other diseases connected to Dementia include Huntington’s Disease, Traumatic Brain Injuries, Creutzfeldt-Jakob disease and Parkinson's Disease. 

Diagnosis of Dementia:

Dementia can be diagnosed by a health care provider who performs a range of test that involve memory, attention, problem-solving and other cognitive abilities to determine whether there should be a concern. Doctors first assess the underlying cause that relate to cognitive difficulties and whether it can be treated by performing a physical exam, blood tests and brain scans. In addition, a family medical and family history is important to determine whether there is an increased risk for Dementia. 

Typical questions your health provider may ask you or your loved one are: 

· Does Dementia run in your family?

· When did the symptoms start?

· What are the behavioral and personality changes?

· Are there any medications that might cause or worsen symptoms?

Common procedures are performed to diagnose Dementia such as: 

· Cognitive and Neurological Tests – used to analyze brain function such as thinking and physical performance which include assessments of memory, language and math skills, problem solving, sensory response, reflexes and so on. The most common neuropsychological test used for Alzheimer’s and other dementia-related diseases is the Mini-Mental State Examination (MMSE); 

· Brain Scans - identify strokes, tumors, other possible indications that cause dementia. Different types of scans include computed tomography (CT) scans that produce images of the brain and other organs, magnetic reasoning imagining (MRI) scans to produce detailed images of body structures (tissues, bones, nerves and bones), and position emission tomography (PET) that produce pictures of brain activity. 

· Psychiatric Evaluations – help determine if there is an underlying mental health condition causing or worsening to the person’s symptoms.  

· Genetic Tests – some forms of dementia are caused by a person’s genes. These tests can be a good indication as to whether a person is at risk for Dementia. 

· Blood Tests – these tests are still limited; however, blood tests are available to measure the levels of beta-amyloid, a protein that abnormally accumulates in the brain commonly detected in Alzheimer’s Disease. 

Risks factors: 

Mayo clinic has an extensive list as to risk factor that can and cannot be changed at: https://www.mayoclinic.org/diseases-conditions/dementia/symptoms-causes/syc-20352013

Risk factors that cannot be changed: 

· Age

· Family history

· Race/ethnic

· Down-syndrome

Risk factors that can be changed: 

· Diet and exercise

· Poor heart health

· Traumatic brain injury

· Diabetes

· Smoking

· Excessive alcohol consumption

· Air pollution

· Medications that can cause or worsen the disease

Treatment 

There are currently no cures for Dementia. Currently, the medications on the market to treat Dementia are those that help with symptoms and others that may help with the progression of the disease. Researchers are actively studying new drugs with several ones are in Stage 3 trials.

The FDA has approved two types of drugs to specifically treat Alzheimer’s Disease symptoms which include Cholinesterase inhibitors and Memantine. Memantine is approved to treat the later stages of Alzheimer’s Disease. These drugs have potential benefits and associated risks. The current drugs on the market are: 

· Galantamine (Razadyne) – FDA approved and a cholinesterase inhibitor to treat mild to moderate dementia associated with Alzheimer’s which can improve the nerve function in the brain but does not stop the disease’s progression.

· Donepezil (Aricept)– is FDA approved to treat all forms of dementia which is a Cholinesterase inhibitor that block the normal breakdown of acetylcholine, a compound found that occurs throughout the nervous system. 

· Rivastigmine (Exelon) - FDA approved and a cholinesterase inhibitor to treat mild to moderate dementia associated with Alzheimer’s Disease or Parkinson’s disease which can improve the thinking ability, but does not stop the disease’s progression. 

· Memantine(Namenda) – FDA approved and a memantine to treat moderate to severe Alzheimer’s disease to regulate the activity of glutamate, a messenger chemical involved with brain functioning. It comes in the form of a pill or syrup. 

· Memantine (Namzaric) – FDA approved combination of donepezil and memantine which is taken as a capsule. 

· Aducanumab (Aduhelm™) – is FDA approved and the first therapy aimed at removing the protein, amyloid, plaques. Aducanumab is not a pill, but rather a 45- to 60-minute infusion every 4 weeks. Infusion can be done at hospitals or infusion therapy centers.

Several other drugs are in or are moving into Phase 3 trials including Lecanemab also by Biogen and Donanemab by Eli Lilly. Solanezumab is another one, but it isn’t showing any benefit for individuals with mild or moderate disease. They are still studying it, as perhaps it may be helpful if given earlier in the disease.

Keep in mind that physicians may prescribe other medications to specifically address other concerns which are a result of your loved one’s Dementia. This includes everything from drugs to treat hallucinations to sleeplessness to depression to aggression.

It is important to realize that with some of these medications, there may need to be a trial and error period to get the right dosing and frequency. Drugs may have to be changed. A combination of drugs may be needed. Remember, few will know your loved one like you, so your involvement during the period of the introduction of drugs is very important. 

Carefully educate yourself about all medications given to your loved one and, as always, ask the doctor all the questions you may have. If you notice changes or odd behaviors after the introduction of a medication or a change in one, tell the doctor. Never stop a prescription without discussing it first with their doctor!