Stages and Prognosis

Each person’s experience with dementia is unique to them. Dementia may last many years, sometimes progressing faster, sometimes more slowly. This means that it is not possible for anyone to tell you exactly how the condition will progress and how long a person can live with dementia.

Many people find it stressful that they do not have answers to these questions and that is normal. It is important to understand as much as you can about dementia as it can help you to come to terms with the diagnosis and what may lie ahead. It can be useful to think about the way dementia progresses in stages, however it is important to remember that this is only a guide, some symptoms may appear earlier or later or not at all.

The following provides an outline of the three stages that are associated with Alzheimer’s disease. Following this, there is a note on the progression of vascular dementia, dementia with Lewy body and Frontotemporal dementia which all have specific characteristics associated with them.

The progression of Alzheimer’s disease

On average people live 8 to 10 years from the time first symptoms emerge. However, life expectancy varies considerably depending on how old a person is when symptoms begin. A person diagnosed in their 60’s will live longer than someone diagnosed in their 90’s. Life expectancy is also affected by other illnesses the person experiences.

Early Stage

In the early stages of dementia changes are slight and it is possible to continue to do lots of things. This typically means a person may:

• Forget things easily or repeat things frequently
• Experience problems with language, such as appearing to be stuck for words or losing track of a conversation
• Find new situations or places confusing
• Show poor judgement or find it hard to make decisions
• Lose interest in other people or activities
• Be unwilling to try new things
• Experience low mood, may become anxious or withdrawn
• Feel frustrated or angry

Many people in the early stages of dementia engage in activities they enjoy but at times they may find it hard and may need to rest more frequently.

Middle Stage

As dementia progresses, changes are greater and a person will need more support to help them to manage day to day living. As a person finds it harder to do things, they may lose confidence and withdraw or be upset. Others may feel frustrated and angry and be argumentative or quick to lose their temper.

During the middle stage a person may:

• forget recent events completely
• find conversations, television or reading difficult to follow or confusing
• get lost easily, even in familiar places
• find bathing and dressing difficult or confusing
• need reminders to eat, drink and take medication
• find meal preparation and managing money very difficult
• believe things are real even when they are not
• feel restless or agitated
• confuse time and experience difficulties with sleeping

The symptoms and behaviours that can occur during this stage are difficult for both the person with dementia and their families. There are supports and services to help and strategies for coping which are listed at the bottom of this page

Late Stage

During the late stage of dementia, a person will need increasing amounts of support and will gradually become dependent on others for nursing care. A person will become increasingly frail and may walk unsteadily; they may need a wheelchair or be confined to bed. During this stage the ability to fight even simple infections is low.

Typically, a person may:

• have difficulty recognising people, although there may be flashes of recognition
• experience gradual loss of speech
• have difficulty eating and sometimes swallowing
• experience incontinence
• appear restless and seem to be looking for someone or something

While a person with late stage dementia may have difficulty communicating, they will often respond positively to affection, a smile, and a soothing voice. Music, scent and hand massage can bring comfort and enjoyment.

The progression of vascular dementia

Vascular dementia is generally caused by a stroke or a series of small strokes. As a result this type of dementia may progress in a ‘stepped’ manner, which differs from the more gradual progression of Alzheimer’s disease. Symptoms may appear to suddenly worsen due to a stroke and then remain level for a period of time. It may be months or years until the next stroke occurs and symptoms can then worsen. Where vascular dementia is caused by a series of small strokes, then symptoms can emerge in a more gradual way.

People with vascular dementia tend to maintain their personality and emotional responsiveness until the later stages of the condition. This can mean that people are more aware of their condition and can be more prone to depression than people with Alzheimer’s disease.

In general people with vascular dementia live for around five years after symptoms begin. In many cases, the person’s death will be caused by a stroke or heart attack.

The progression of dementia with Lewy Bodies

Half or more of people with dementia with Lewy Bodies will also develop symptoms of Parkinson’s disease. These include slowness of movement, stiffness and tremor. Other symptoms include difficulty judging distances, falls and fainting. Visual hallucinations, paranoia and delusions may also emerge.

In the early stages of this dementia, the abilities of the person may fluctuate drastically, even during the course of a day. This can be very confusing for all concerned.

In the later stages, this dementia progresses in a similar way to Alzheimer’s disease. People usually live for six to twelve years following onset of symptoms.

Each person’s experience with their dementia is unique to them, and there is no way to say exactly how their dementia will progress, which symptoms will emerge and when and how long they may live with their condition. The above is just a guide to help to understand how a dementia may progress however it is important to note that everyone’s experience with dementia is unique to them.