Unfortunately, most types of dementia are irreversible and progressive.
As the dementia progresses, the damaged parts of the brain may deteriorate further, and more parts of the brain may also get damaged. This means that the existing symptoms may worsen, and there may also be more types of symptoms. The patient finds it increasingly difficult to perform the activities of daily living (often abbreviated as ADL) required every day, such as bathing, dressing, cooking, eating, taking our medicines, managing our money, shopping. Caregivers have to help patients more. The patient may get more forgetful and disoriented and begin wandering and get lost. Agitated, aggressive patients may hurt themselves and people around them. Some may get abusive. Some may become apathetic. They may face problems in recognizing objects or be unable or unwilling to communicate. Or patients may neglect themselves, such as forgetting to wear warm clothes during winter, or forgetting to eat their meals. Finally, patients become fully dependent, unable to move around, speak or respond.
Progression depends on the type of underlying disease, and how the disease deteriorates in a particular person. Also, in some cases the disease may reach late stage in just a few years, and in others it may take decades. The other medical problems of the patient, and the general health may also affect progression.
There are no clearly defined “stages of dementia” as every dementia type is different, and as every person is different and has a different combination of symptoms. Also, how the damage increases over time (the progression) differs across patients. Often, the only thing that is stated in terms of prognosis is that the dementia will get worse and shorten the lifespan. Yet for caregivers, it is useful to have at least some understanding of how things could change, and the type and amount of care that may be needed over the years, so that appropriate planning can be done. It also helps them prepare emotionally for the years to come.
One way to consider the progression is to consider a simple, indicative three-stage classification that enables caregivers to get some idea for their planning, namely, 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 our page here: Plan care for various stages of dementia)
This is when the impairment caused by the disease underlying dementia is mild and not clearly noticeable. Symptoms visible at this stage vary widely depending on the type of dementia, because different parts of the brain are affected depending on the underlying disease. For example, for some forms of dementia, like Alzheimer’s Disease, memory loss is dominant, for some others, behaviour changes may predominate. The changes affect the person and family around them, but may be considered as normal part of ageing or just someone being “difficult.” Things may not seem so seriously wrong as to require action, and symptoms may therefore be dismissed.
In cultures where awareness about dementia symptoms is low in society and also in the general medical community, diagnosis at this stage is uncommon.
Some examples of symptoms seen are:
- Patients may be are confused about the date
- They may have problem with names of people and things
- They may not be able to remember recent events, such as whether they have had lunch
- When asked to copy a simple picture, they may find it difficult and are not able to do it
- They may be poorer at analyzing things
- They may have problem talking
- They may withdraw socially
- They may seem irritable and have mood swings
- They may have problems managing money, or show confusion about the value of money
- They may laugh or seem disinterested when people close to them are crying
- They may use abusive language (something they may never have done before) or misbehave with others
- They may show strange behaviour like showing a tendency to alcoholism
The changes in the patients seem more prominent now, and are obvious to people close to them (though outsiders may still be dismissive). Daily life gets affected and relationships are impacted. Patients may also need more help in their activities because they are either unable to do them, or have lost interest in everything. Frustration, anger, mood swings, conflicts may also be more common. Caregivers have to pay more attention to the patient, and also cope with behavior challenges. Patients may even be suspicious or uncooperative when caregivers try to 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 often full of challenges.
Some examples of problems seen here are:
- Patients may get lost in familiar places
- They may not be able to understand things or may not pay attention to things around them
- They may be unable to learn new things, such as how to operate a new device or learn a new subject
- They may not be able to do arithmetic or count
- Cooking, shopping, banking become problems, and they cannot handle these themselves
- They could be prone to delusions, visual hallucinations, agitation, and aggression
- At times, they may seem restless, anxious, or depressed
- Personal hygiene may be poor
- Activities of daily living become problematic. They may find it difficult to wear their clothes, brush their teeth, comb, and have their bath. They may need help for most of these.
- They may look confused when seeing or trying to use common, familiar objects
- They may just lose interest in everything
- They may be abusive and violent and could harm themselves or others
- They may show distinctly odd and inapporpriate social behavior
By this time, the damage to various parts of the brain is high enough to impact most of what the patients do or feel. The physical changes are severe. Patients usually become dependent for all their activities. Their mobility and physical independence declines drastically, and they become increasing helpless and uncommunicative. Their health begins to deteriorate on multiple fronts.
- Their speech becomes very difficult to understand. They may even stop speaking
- The memory may be severely impaired
- They may no longer be able to write or draw, and their movements are clumsy/ uncoordinated
- They can no longer perform their daily tasks
- They are not able to control their bladder and bowel movements
- They may have severe problems in walking and balance, and become increasingly immobile
- They may 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 and are prone to infections and medical complications and multi-organ failure
Dementia is now recognized as “life-limiting”; having dementia hastens death because of the damage it causes and also because patients are often unable to notice or communicate their other health problems to their caregivers, and thus they don’t get timely treatment for these. Dementia is also sometimes referred to as a “terminal” condition. As explained in this document of Alzheimer’s Society, a person with dementia may die of some other illness if the dementia is still in the early stages, but once the dementia progresses, persons with dementia may die from the complications arising from end-stage dementia, or from a mix of problems where dementia is not the main cause but has interacted with other conditions and complicated and worsened them.
It is clear from the above that, broadly speaking, caregivers must plan their lives and other responsibilities to be able to provide more and more care as the dementia progresses. 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. Often, caregiving for a dementia patient is a long journey.
Alzheimer’s Disease progression can be looked at 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 the stages in these articles: The Stages of Alzheimer’s (Eldercare Online) and FAST Scale Administration (UT Health Center) (PDF file).
Frontptemporal 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, and uses a simple, indicative three-stage classification that caregivers may find helpful while planning care. To read about planning care for various stages, read the page Plan care for various stages of dementia, which gives specific caregiving suggestions for each stage and also discusses how caregiving focus may change 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 April 2014]