The progression of dementia

Although dementia is an umbrella term for many conditions, often it can be referred to in stages. We take a closer look at the progression of dementia.

In years gone by the onset and progression of dementia was often referred to as the stages of dementia. Over time, we have gained a deeper understanding of these conditions and we now recognise that each person’s experience of living with dementia is unique (as unique as they are!) and their experience doesn’t neatly fit into “stages.”

Dementia is an umbrella term that can describe a number of different conditions that are grouped together because collectively they are all progressive; irreversible and ultimately fatal conditions affecting the brain and all its functions. There are over 100 different types of dementia.
 
Alzheimer’s Disease accounts for approximately 70% of all diagnosis of dementia. Because the progression of Alzheimer’s disease is somewhat predictable, we can see some commonality of symptoms as the condition progresses. Sometimes this progression of Alzheimer’s will be referred to as stages. 

Early in the experience of living with Alzheimer’s 

At this stage of Alzheimer’s the person will be living a relatively normal life. They may be independent and comfortably caring for themselves. They may also be continuing their regular social activities. It is a good time to stay active, according to Bupa Aged Care’s Head of Dementia Services, Margaret Ryan.

“Find out what information, supports; programs; groups or organisations are out there and what will suit –don’t rule out new interests, there are a variety of things from choirs to art programs. Also try to maintain and perhaps increase physical activity and mental stimulation. Again evidence now suggests that even after diagnosis, keeping the heart and the brain active along with social connection can benefit the person living with dementia and thus support those around them,” suggests Margaret.

The person may struggle at times to find the right word or name. They may forget something they recently read or discussed, or misplace belongings and struggle to organise as they used to. Strategies such as lists, notes, and phone reminders may help at this time.
progression of dementia with an older woman

As the condition progresses

Moderate Alzheimer’s is often the longest stage of the condition, which can last for many years. This stage of Alzheimer’s can be confusing and upsetting for the person living with it because they may now be regularly forgetting their history, finding personal administration such as paying bills impossible, or experiencing difficulties coping with everyday things. Communicating may cause distress; anxiety and frustration. These changes in mood may seem mysterious or odd to others, but all actions have meaning for the person. It is up to us who know them to try and work out what is going on for them so we can alleviate distress.
 
“Take the opportunity to plan now. Find out more about how the person wants to live their life while they can still tell you… you may think you know them well but sometimes, especially children, don’t know their parent except as a parent. 
 
“Seek to know about the person’s life history, their story and personality. Coping styles can really help later on, especially when the person isn’t able to express themselves. Find out now how they want to live their day and try and maintain this. Doing so may decrease anxiety and distress later on when others may be involved in care and support. Advance care planning and directives are perhaps an important discussion to have at this stage and will support you as a key carer later on,” Margaret says. 
 
In this stage, a greater level of care will be required as it is also easy to become lost as remembering addresses and phone numbers may be difficult. Finding and recognizing things like the toilet may be difficult for some, and changes in sleep patterns may arise. 

Late in the experience of living with Alzheimer’s

Late in their experience of Alzheimer’s, the person may have difficulties communicating their needs. Some days conversation may be ok, but other days it may be challenging. 
 
At this time, the person may no longer be able to continue with normal body movement such as walking, dressing, sitting and eventually even swallowing. 
They will also be more susceptible to infection like pneumonia. They will require care around the clock.
 
Deciding on how best to care for the person at this time can be emotionally tough. 
 
“Whilst most of us would say we would hope to have the person stay at home, for many, residential care becomes inevitable,especially when the person requires physical care and 24/7 support. No doubt this is probably the most difficult decision. If you can take your time, draw on trusted supports and plan, it will be easier than if this has to be made in a time of crisis for you or the person living with dementia such as hospitalisation or ill health,” says Margaret.
 
Knowing that your loved one is in a place you can trust they will be cared for as you would care for them, is often a great relief. Getting ready before you need it may allow you more freedom and options.
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