An Introduction to Dementia
There are several authoritative pages that define dementia, and give the symptoms/ early warning signs of dementia. There are also sites that describe Alzheimer’s Disease, the main cause of dementia. What I am providing here is an overview, and links to relevant pages on authoritative sites.
- What is Dementia?
- Types of dementia
- Symptoms of dementia
- Understanding memory loss
- Diagnosis of dementia
- Prevalence and risk factors of dementia
- Treatment and Research
- Prevention
- Dementia is not old age
- Learn more about dementia
What is Dementia?
The word “dementia” comes from “de” (without) and “mentia” (mind).
Dementia, simply put, is a syndrome (a group of symptoms) associated with a progressive loss of memory and other intellectual functions that is serious enough to interfere with performing the tasks of daily life. Which means, someone with dementia will exhibit loss of memory, and show reduction in the ability to do things we all take for granted. For example, activities like planning a party, knowing where we are (orientation in space and time), or even using the right word for what we want to say. The patient’s ability to handle normal activities worsens and dementia advances.
Note that dementia is a syndrome, not a disease. We usually understand that a symptom is not a disease, for example, when we have pain in the abdomen, the reason could be a stomach infection or appendicitis, or even a kidney stone. But in the case of dementia, the confusion arises because a lot of material available online and published talks of dementia as if it is a disease, or we interpret it as such.
It helps to be clear about the difference, because:
- Knowing that it is a group of symptoms makes it easier to remember that there are multiple possible medical conditions for dementia, and to avoid confusions like that discussed in the next point.
- It makes it easier to make sense of material available online, and to use it effectively.
For example, if we remember that dementia is a group of symptoms, and not a disease, it is easier to understand that the progression of these symptoms would vary widely, both in the areas that worsen faster, and in the pace of the progression. It is easier to understand that some people may be helped by medicines, and not others. And a lot of the statistics and articles are easier to understand.
Types of dementia
As dementia is a group of symptoms, there is some disease/ medical condition causing these symptoms. These are the causes of dementia, but are also often referred to as the types of dementia, or sometimes, simply, other dementias. The precision with which terms are used often depend on whether the site is an authoritative medical site written for medical professionals (most precise) right down to what normal laypersons, such as caregivers, use while discussing the overwhelming situation they are facing and/ or sharing tips.
- Some of the causes of dementia can be treated, such as dementia due to depression, hypothyroidism, and vitamin B12 deficient. On successful treatment of the underlying cause, the dementia symptoms will reverse.
- In some situations, such as when the dementia is caused by head injury, the dementia may remain at the same level.
- In most dementia cases, though, the underlying disease(s) cannot be cured, and the dementia progresses from some cognitive decline to a state when the patient is bed-ridden and fully dependent. Here, the dementia is irreversible and progressive. Alzheimer’s Disease, the most common cause of dementia, cannot currently be cured, and is therefore an irreversible, progressive form of dementia. Other disorders that cause dementia include strokes, Pick’s Disease, and Parkinson’s Disease.
One point here is that there is a common confusion about the relationship between Alzheimer’s Disease and dementia. Some people think they are different, some think they are the same. The confusion is made worse because material available on some blogs and community sites apparently uses the word Alzheimer’s and dementia interchangeably.
Fact is, while Alzheimer’s Disease explains 60 to 80 % of the dementia cases, there are 20 to 40% cases of dementia that are not caused by Alzheimer’s Disease. Often, literature is not as easily available for non-Alzheimer’s dementia, and caregivers must extrapolate from what is available for Alzheimer’s Disease patients to understand what can be done. Caregiving concerns remain similar across various types of dementia, but some types of symptoms are more typical in certain types of dementias.
Learn more about the types of dementia here and here.
Understanding memory loss
Because of the number of articles that appear on the subject, and because of stray comments heard, many people are scared when they forget something that they have dementia. But not every apparent sign of poor memory is an indication of dementia. It is useful to understand the difference between the normal forgetting everyone occasionally experiences, and the type of forgetting characteristic of dementia.
This document here (at ADEAR) explains memory loss, and which types of memory loss are part of dementia. It also gives tips on how to handle memory loss. The document, while reassuring us that some memory loss is normal as we age, also reiterates: If you’re worried about your forgetfulness, see your doctor.
Symptoms of dementia.
Memory loss is not the only symptom of dementia. A useful document for understanding dementia symptoms is the 10 signs of Alzheimer’s document from Alzhiemer’s Association. This document also explains how to distinguish between ‘normal ageing’ and dementia for each of these symptoms.
A person may not exhibits all of the symptoms, but if he/ she exhibits some symptoms, it is worthwhile checking up with a doctor, because the doctor will be able to conduct some tests to judge whether this is dementia, and also try to figure out which type of dementia it is. Remember, some conditions that cause dementia symptoms can respond to treatment, reversing the symptoms. And even if a cure is not possible, understanding the cause of the symptoms can affect how the person and his/ her family cope with the situation and plan for the future. A diagnosis is a first step in appropriately managing the medical condition.
It is important to diagnose the cause of dementia as early as possible.
Often, the symptoms may not be obvious in early-stage patients, especially if they are living at a distance, because they tend to cover up for their mistakes. It would take a series of problems or a crisis for the problem to be noticed. However, alert patients who realize something is wrong, and consult doctors, may get an early diagnosis.
Diagnosis of dementia
Doctors have a number of ways to check whether the patient has the symptoms grouped together as “dementia”, and if so, to determine the medical condition that is causing dementia.
The patient may be asked questions, or made to perform some simple activities (like making a small sketch, or walking on a straight line) to judge the level of cognitive impairment, and see whether it falls below the level at which it is classified as dementia.
Blood tests are used to check for vitamin B12, thyroid hormones, and other such things, to detect deficiencies and imbalances.
Brain imaging techniques (MRI, PET scans, CT scans) may be used to check for visible abnormalities, or determine which parts of the brain are active.
The diagnosis is sometimes tentative, especially for dementia types that have no clear criteria. For example, an Alzheimer’s diagnosis can only be confirmed after death, on checking the brain. (Here’s a link for Alzheimer’s diagnosis)
A diagnosis of dementia does not mean the person has to stop living an active life. Terry Pratchett, the well-known fantasy writer, is one example of an Alzheimer’s patient who continues to lead a productive and creative life, while also readying himself for how he will handle the disease as it progresses. Another example is Charles Kuen Kao, winner of the Nobel Prize for Physics in 2009, who was diagnosed in early 2004.
ADEAR has a document designed for patients diagnosed at early-stage dementia, What Happens Next?, which includes topics like how to cope with the diagnosis, how to tell family and friends, and what to expect. The document can also be helpful to caregivers.
Counselors in hospitals, and dementia associations and support groups can also help a patient to cope with the diagnosis and decide how to prioritize at this critical junction. Doctors can probably refer the patient to such groups.
Prevalence and risk factors of dementia
The causes of dementia are not fully understood. It seems to strike across race, gender, social class, and education status. The only clear correlation so far is that the probability increases with age (though not all people who get dementia are old, and not everyone who gets old will get dementia). You can read about risk factors and current understanding of causes of Alzheimer’s Disease, the leading cause of dementia.
According to data quoted by HBO, as part of their Alzheimer’s Project, Alzheimer’s is the second most-feared illness in America, following cancer, and may affect as many as five million Americans. The 2010 Alzheimer’s Disease Facts and Figures Report (for the USA) can be downloaded from this page.
Treatment and Research
Some conditions that cause dementia can be cured. But most types of dementia are irreversible and progressive. (see section on Stages of dementia to understand how the disease progresses.)
Take Alzheimer’s Disease, the most common form of dementia. There are some treatments for patients, to help reduce the impact of memory loss, and these treatments help some patients in the early stage of the disease. But they do not reverse, or even slow down the progression of the disease. Click here, here, here, and here for more detail on the current state of medical research on the disease.
As life expectancy improves, and as dementias are more likely in old age, the prevalence of dementia is expected to go up. Research in the causes, prevention, and treatment are therefore a focus area of concerned professionals and of governments. Interested persons can contribute by funding, through participating in drug trials, and by participating in studies that see how lifestyles and environment affect the chance of getting dementia. A major such study is the ongoing Nun’s Study, which has helped gather a lot of information on Alzheimer’s Disease.
Prevention
As mentioned in an earlier section, there is currently no clear way known to avoid dementia. (See section on “Prevalence and risk factors of dementia”). However, though no clear cause has been identified, a healthy lifestyle is expected to reduce the probability of getting dementia. Examples of what can be done include:
- Maintaining a healthy weight and eating a healthy diet with lots of vegetables and fruits.
- High levels of physical activity
- Maintain mental fitness by learning new things
- Reduce risk of heart disease
- Remain socially active
Also, avoid head injury 
Stages of dementia
Unfortunately, most types of dementia are irreversible and progressive. As dementia progresses, the cognitive ability of the patient declines, as does their ability to perform activities of daily living (often abbreviated leas ADL). What starts off as a not-very-obvious memory loss or occasional disorientation, progresses to increased dependence and the patient harming himself/ herself, and ultimately results in the patient becoming bed-ridden and totally dependent, unable to speak or respond.
An understanding of the progression is available as a seven stage model, described at the Alzheimer’s Association site. The seven stages are:
- Stage 1: No impairment
- Stage 2: Very mild decline
- Stage 3: Mild decline
- Stage 4: Moderate decline (mild or early stage)
- Stage 5: Moderately severe decline (moderate or mid-stage)
- Stage 6: Severe decline (moderately severe or mid-stage)
- Stage 7: Very severe decline (severe or late stage)
The decline of people with dementia can also be understood using the Functional Assessment Staging (FAST) scale, developed by Barry Reisberg and his colleagues at New York University Medical Center’s Aging and Dementia Research Center. The FAST scale has 16 stages and sub-stages. Read more about it here and here.
The earlier the problem is detected, the better the chances to use medication to reduce the impact of the memory loss, and also to plan for the later stages. At the early stage, patients can readjust work-life accordingly, phase out work or business and make fewer commitments. People living alone get time to plan relocating with/ near children or to assisted living facilities. Legal safeguards, such as power of attorney and living wills, can be made in time, before the decline in cognitive ability makes that impossible.
Caregivers are also better equipped to handle their responsibility if they understand what to expect. Children may need to move nearer to where the ailing parent is; some may need to select jobs with flexi-timing, or chose jobs that can be done from home. As dementia progresses, the caregiver role increases and becomes more overwhelming, and knowledge of this can help the caregiver learn whatever is needed well in time.
Dementia is not old age
Dementia is not just a faster case of ageing. It is usually caused by distinct changes in the brain, such as damage to brain cells, and the symptoms are not just an exaggerated case of old age.
Take the example of losing keys. We all lose keys occasionally. We may expect the frequency at which we misplace keys to go up with stress, or with age. But we do not expect that, given a bunch of keys in our hands, we would be puzzled and wonder what the object is, and what it could be used for. Forgetting keys is the sort of problem that may increase with age; forgetting what a key is, is dementia.
Or consider your own name. Do you expect that, however old you are, you will forget your own name? Dementia patients forget their names.
The old age and dementia confusion is one of the major reasons dementia diagnosis may get delayed, because odd behavior may be written off as “old age”. This confusion is worsened by language, where old age and senility are assumed as linked. To top it all, the term “senile dementia” and “pre-senile dementia” are still used by some of the older doctors, linking “senile” with “dementia”. Specialists, however, use the term early-onset dementia for dementia that arrives at an age younger than 65 years.
Another confusion is that people think dementia is inevitable with age. It is not. Not everyone who grows old gets dementia. While the probability of getting dementia increases as one ages (more old people get dementia as compared to younger people), dementia is not a part of normal ageing, and it is not inevitable.
Learning more about dementia
If dementia is a concern area for you (as someone who suspects he/ she has it, or as caregiver of a patient), it makes sense to get the fundamental concepts from an authoritative site. Most authoritative medical sites available to laypersons are focused on Alzheimer’s, because it is the most common cause of dementia, though they also give information on other causes of dementia. Two such sites are: Alzheimer’s Association and National Institute of Ageing’s ADEAR (Alzheimer’s Disease Education and Referral (ADEAR) Center) Most resource sites and discussion groups are also on Alzheimer’s Disease.
For example, see this General Information page at ADEAR, where Alzheimer’s Disease is explained. The lower part of the page explains dementia as well as mild cognitive disorder. Similarly, the Alzheimer’s Association page that explains Alzheimer’s also explains that Alzheimer’s is the most common form of dementia and links to a page on related dementias.