Unfortunately, most types of dementia are irreversible and progressive.
As dementia progresses, the damaged parts of the brain get more damaged. Other parts of the brain may also start getting damaged. So existing symptoms get worse, and more symptoms appear. The person with dementia finds it more and more difficult to perform tasks required every day. These tasks are usually called the activities of daily living (ADL). Examples are bathing, dressing, cooking, eating, taking medicines, managing money, and shopping. Caregivers have to help them more. The person may begin wandering and get lost. Some may get agitated and aggressive and hurt themselves and those around them. Some get abusive. Some become apathetic. They may face problems in recognizing or using common objects. Some are unable to explain their needs. They cannot find the right words to express themselves. They may neglect themselves, such as not wear warm clothes during winter, or not eat their meals. As dementia progresses they become fully dependent and may not be able to move around, speak or respond.
How fast the dementia gets worse differs across persons. It depends on which dementia disease the person has, and how fast it progresses. In some cases the disease reaches late stage in just a few years. In some the decline takes decades. The decline also depends on the person’s overall health and other medical problems.
The phrase “stages of dementia” is often used to discuss how someone with dementia gets affected over the years. However, please note that there are no clearly defined “stages of dementia.” Every dementia type is different. Every person is different and has a different combination of symptoms. How the damage increases over time (the progression) therefore differs across persons.
Even though each situation is different, discussion on the stages of dementia helps caregivers understand what to expect. They can plan how they will provide care. They can prepare emotionally for the future. Usually stages are discussed using a simple three-stage classification: early stage dementia (mild dementia), mid-stage dementia (moderate dementia) and late-stage dementia (severe dementia).
- Early stage dementia (Mild dementia).
- Mid stage dementia (Moderate dementia).
- Late stage dementia (Severe dementia).
- Some links on progression of various types of dementia diseases.
(For a discussion on care through the various stages, check: Plan care for various stages of dementia)
In the early stage, the problems are mild and not very noticeable. Symptoms seen at this stage vary a lot depending on the type of dementia. This is because different diseases affect different parts of the brain. For example, in Alzheimer’s Disease, the part of the brain affected causes memory loss. In FTD, the changes to the brain mainly affect behavior. Because the initial symptoms are mild, they are often dismissed as age problems or stress or the person being “difficult.” Doctors may not be consulted.
In India, awareness about dementia is low in society and in the medical community. Diagnosis at the early stage is uncommon.
Persons may show some or many of symptoms like:
- Confused about the date.
- Forgetting names of people and objects.
- Forgetting recent events, such as whether they had breakfast that morning.
- Unable to draw a simple picture, like a drawing of a clock.
- Problems in analyzing things.
- Not finding the right words while talking.
- Withdrawing socially.
- Being irritable and having mood swings.
- Problems managing money. Confusion about the value of money (is a thousand rupees greater than ten rupees?).
- Laughing or showing no interest when people near them are crying.
- Using abusive language though they have not done so before. Misbehaving with others.
- Showing strange behavior like showing a tendency to alcoholism.
The changes in the persons with dementia are now obvious to people close to them, though outsiders may not notice them. Daily life and relationships are affected. They need more help because they are either unable to do tasks or have lost interest in everything. Frustration, anger, mood swings, and conflicts are common. Caregivers have to pay more attention to them, and handle behavior challenges. The persons with dementia may be suspicious or uncooperative. This is often a stressful period for caregiving, especially in societies like India where systems and support services are poor. Caregiving work is high and full of difficulties. Care is often full-time.
Some examples of problems seen here are:
- Persons with dementia get lost in familiar places.
- They do not understand what they are told or what is happening around them.
- They cannot concentrate or pay attention easily.
- They have problems while learning new things, such as how to use a new mobile phone or learn a new subject.
- Even simple arithmetic and counting becomes a problem.
- They need help for activities like cooking, shopping, and banking. They may not be able to do some of these at all; for others, they need a lot of help.
- They may be prone to delusions, visual hallucinations, agitation, and aggression.
- They may seem restless, anxious, or depressed.
- Personal hygiene can become poor.
- Simple daily living tasks become problematic for them. They find it difficult to wear their clothes, brush their teeth, comb, and have their bath. They need help for most of these.
- They look confused when they see or try to use common, familiar objects like a TV remote or a pen.
- They lose interest in everything.
- Some become abusive and violent and could harm themselves or others.
- Distinctly odd and inappropriate social behavior may be seen.
By this time, the damage to the brain is very high. Dementia now affects almost all aspects of the life of the person with dementia. The physical changes are severe. They usually become dependent for all activities. Their mobility is usually very poor, and they are wheelchair bound or bedridden. Their ability and willingness to talk reduces. Their health gets worse on multiple fronts.
- Their speech becomes very difficult to understand. They may stop speaking.
- Memory may be severely impaired.
- Movements become clumsy and uncoordinated. Hand control may be very poor.
- Full dependence for most daily tasks is common.
- Bladder and bowel control is poor or absent.
- They may have major problems in walking and balance. They become increasingly immobile.
- They often have problems in chewing and in swallowing food or liquids.
- Aspiration pneumonia, caused by food particles entering the lungs, is a common problem.
- They often become bedridden. They are prone to infections and medical complications and multi-organ failur.e
Dementia is a “life-limiting” condition. Having dementia means the person may die earlier. One reason is the damage that dementia causes in the body and brain. Another is that dementia persons may not notice or talk about other pains and health problems to caregivers, so they do not get treatment in time. Dementia is also called a “terminal” (or “life-limiting”)condition. This document of Alzheimer’s Society Opens in new window explains that once dementia progresses, persons may die from the complications arising from end-stage dementia. Or the person may die from a mix of problems where dementia has interacted with other conditions and has complicated and worsened them.
Overall, a person may take from two to twenty years from diagnosis till the end of life stage. The typical range is between four to eight years in most types of dementia. Caregivers have to provide more and more care as the dementia progresses. This requires planning.
Alzheimer’s Disease progression is sometimes described as a seven stage model. While most organizations have shifted over to a three-stage model of mild, moderate and severe, the older seven stage model is given below for reference.
- 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 can also be understood using the Functional Assessment Staging (FAST) scale. FAST was developed by Barry Reisberg and his colleagues at New York University Medical Center’s Aging and Dementia Research Center. It has 16 stages and sub-stages.
A relatively recent model of staging for Alzheimer’s Disease, proposed in 2011 but not yet in use is based on how the brain changes (pathology) due to Alzheimer’s Disease. This is sometimes called the the “spectrum of disease” model. Here,
- Stage 1: Preclinical Alzheimer’s Disease: Here there are no symptoms yet (pre-symptomatic) (such as no memory loss) but the brain has some changes corresponding to Alzheimer’s Disease. Diagnosis is not done for this stage for normal medical practice, even though research studies may use biomarkers to identify persons in this stage and include them in studies.
- Stage 2: Mild Cognitive Impairment due to Alzheimer’s Disease: Here, the person shows some memory changes/ cognitive symptoms (other than what is normal with age) , and these are happening due to the Alzheimer’s Disease effects in the brain. The person is still able to do normal daily activities, but is facing a few problems. Typically most doctors do not give a diagnosis for this stage, at least in India.
- Stage 3: Dementia caused by Alzheimer’s Disease: This corresponds to what a typical dementia diagnosis is given for. Here the symptoms caused by the AD have started affecting daily activities. The mild, moderate, and severe stages usually talked about are considered subcategories of this stage. That is, the typical 3-stage description of dementia discussed above (or the 7 stage model, etc.) are all within this Stage 3 of the new “spectrum of disease” model proposed in 2011.
This proposed Stage 1 to Stage 3 model is not used for doctors to diagnose dementia in India. It is not relevant for caregivers to manage the situation and support the person. All diagnosed dementia persons are at Stage 3 of this proposed model, and the typical mild, moderate, and severe dementia are all subcategories within stage 3 of this proposed model. The above description of the proposed model is only to provide clarity in case caregivers get confused by newspaper reports or websites.
Frontotemporal dementia symptoms and progression is discussed in this downloadable document: Frontotemporal Disorders: Information for Patients, Families, and Caregivers Opens in new window, on this page at AFTD Frontotemporal Degeneration: Management and Prognosis Opens in new window, and on this page, Frontotemporal Dementia (FTD): Treatment and outcomes Opens in new window. Some caregivers have shared their personal experiences of the stages observed in their loved ones. See a document on FTD caregiving perspective (PDF file) Opens in new window.
Lewy Body Dementia prognosis and progression is discussed in a section in this page: Diagnosis: Prognosis and Stages Opens in new window.
Vascular/ multi-infarct dementia prognosis is discussed in sections on pages at: NINDS Multi-Infarct Dementia Information Page: What is the prognosis? Opens in new window and Vascular Dementia: Treatment and outcomes Opens in new window.
Parkinson’s Disease patients often develop dementia. The progression of Parkinson’s is described here: NINDS Parkinson’s Disease Information Page Opens in new window.
The discussion on this page is about how dementia may affect someone over time. To read how caregivers can plan for these various stages, see: Plan care for various stages of dementia. This page gives care suggestions for each stage. It discusses how care focus changes across the stages. In the initial stages, care focuses on helping the persons retain dignity and autonomy. The care focus shifts more to ensuring safety as dementia gets worse, and in the final stages, the focus is comfort and quality of life.