Unfortunately, most types of dementia are irreversible and progressive.
As the dementia progresses, the damaged parts of the brain may get more damaged. Other parts of the brain may also start getting damaged. So existing symptoms get worse, and more symptoms start appearing. The patient finds it more and more difficult to perform the activities of daily living (ADL) required every day. Examples are bathing, dressing, cooking, eating, taking medicines, managing money, and shopping. Caregivers have to help patients more. The patient may begin wandering and get lost. Agitated, aggressive patients may hurt themselves and people around them. Some get abusive. Some become apathetic. They may face problems in recognizing objects. Some are unable or unwilling to communicate. Patients may neglect themselves, such as forgetting to wear warm clothes during winter, or forgetting to eat their meals. Finally, they become fully dependent and cannot move around, speak or respond.
How fast the dementia gets worse differs across patients. It depends on which disease the patient has, and how fast it progresses in the patient. In some cases the disease reaches late stage in just a few years. In some the decline takes decades. The deterioration also depends on the patients’ general health and other medical problems.
We often talk of “stages of dementia” while discussing how dementia will change the person 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) differs across patients.
Even though each situation is different, discussion on the stages of dementia helps caregivers get an overall understanding of what to expect. They are able to think of how they will have to provide care. They can do some planning. They can also prepare emotionally for the years to come. Usually we discuss the stages using a simple indicative three-stage classification: early stage dementia, mid-stage dementia and late-stage dementia.
On this page:
- Early stage dementia
- Mid stage dementia
- Late stage dementia
- Some links on progression of various types of dementia diseases
(For a discussion on caregiving through the various stages, check: Plan care for various stages of dementia)
In the early stage, the problems are mild and not clearly noticeable. Symptoms visible at this stage vary widely depending on the type of dementia, 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 changes are mild, they are often dismissed as age problems or stress or the person being “difficult.” Doctors may not be consulted.
In cultures like India, where awareness about dementia is low in society and in the medical community, diagnosis at the early stage is unusual.
Patients 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 patients are now obvious to people close to them, though outsiders may not notice them. Daily life and relationships are impacted. Patients need more help because they are either unable to do tasks or have lost interest in everything. Frustration, anger, mood swings, conflicts are more common. Caregivers have to pay more attention to the patient. They have to handle behavior challenges. Patients may be suspicious or uncooperative when caregivers help them. This is often a stressful period for caregiving, especially in societies where systems and support services are poor and awareness of dementia is low. Caregiving work is high and full of difficulties.
Some examples of problems seen here are:
- Patients 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 high and affects almost all aspects of the patient’s life. The physical changes are severe. Patients usually become dependent for all activities. Their mobility declines drastically and they are wheelchair bound or bedridden. Communication reduces. Their health begins to get 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 severe problems in walking and balance, and become increasingly immobile.
- Problems in chewing and in swallowing food or liquids are often noticed.
- Aspiration pneumonia, caused by food particles entering the lungs, is a common problem
- They often become bedridden and are prone to infections and medical complications and multi-organ failure
Dementia is now recognized as “life-limiting” condition. Having dementia hastens death because of the damage it causes and also because patients may not notice or communicate their health problems to caregivers, and therefore don’t get treatment in time. Dementia is also called a “terminal” condition. This document of Alzheimer’s Society 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 is not the main cause but has interacted with other conditions and complicated and worsened them.
Overall, a person may take anywhere from two to twenty years from diagnosis till the end of life stage, typically varying between four to eight years in most types of dementia.Caregivers must be able to provide more and more care as the dementia progresses. This requires planning.
Alzheimer’s Disease progression is described as a seven stage model at the Alzheimer’s Association site. These 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 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. Links to read more: The Stages of Alzheimer’s (Eldercare Online) and FAST Scale Administration (UT Health Center) (PDF file).
Frontotemporal dementia symptoms and progression is discussed in this downloadable document: Frontotemporal Disorders: Information for Patients, Families, and Caregivers and also as a section on this page at AFTD Frontotemporal Degeneration: Management and Prognosis, on this page: Frontotemporal Dementia (FTD): Treatment and outcomes, and on these pages: Disease Progression: Behavioral variant FTD, Semantic dementia, Progressive nonfluent aphasia, and End stage FTD. Some caregivers have shared their personal experiences of the stages observed in their loved ones, as in this document on FTD caregiving perspective here (PDF file).
Lewy Body Dementia prognosis and progression is discussed in a section in this page: Diagnosis: Prognosis and Stages.
Vascular/ multi-infarct dementia prognosis is discussed in sections on pages at: NINDS Multi-Infarct Dementia Information Page: What is the prognosis? and Vascular Dementia: Treatment and outcomes.
Parkinson’s Disease patients often go on to develop dementia. The progression of Parkinson’s is described here: NINDS Parkinson’s Disease Information Page
The discussion on this page focuses on how dementia may affect the patient 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 also discusses how caregiving focus changes across the stages, moving from dignity and autonomy in the first stage to safety in the second, and finally to comfort and quality of life in the third stage.
[This page was last updated in June 2015]