World Dementia Month: The Journey of Dementia

Terminology and the Journey & Stages of Dementia

© Danielle Robertson Consulting Pty Ltd t/as DR Care Solutions

In taking part in World Dementia Month[1] - September 2020 - let's explore the terminology and stages of dementia.

 

Definition snapshot

The global governing body, Alzheimer's Disease International, defines dementia as the collective name for various progressive degenerative brain syndromes which affect memory, thinking, behaviour and emotion.

There are over 100 forms of dementia, the most common being Alzheimer's Disease comprising 60% to 70% of all dementia cases, followed by Vascular Dementia (10% to 20%) and Frontotemporal Dementia (FTD) (10%).

There is currently no cure for most types of dementia.

 

Prevalence

Every three seconds, someone in the world develops dementia. The number of people living with dementia around the world is over 50 million. This figure is expected to almost double every 20 years, reaching 152 million by 2050.

In Australia, around half a million people live with dementia. Almost one if 10 Australians over 65 years develop dementia and an estimated 250 Australians are diagnosed each day.

 

Stages

While every person's experience of dementia is different, researchers have defined three common stages of the journey. 

For some, the journey through the stages may progress rapidly, or progress slowly over a number of years. There is no hard statistic on the number of years. It could be decades.

 

1. Early stage

The early stages of dementia are often overlooked because the onset is gradual. Common symptoms include:

  • Forgetfulness.
  • Losing track of the time.
  • Becoming lost in familiar places.

 

2. Middle stage

During the middle stage, the signs and symptoms become clearer and more restricting. This is usually the time when families start to question some of the symptoms from the early stage and realise there are more underlying issues happening. Diagnosis is often sought at this stage.

The common symptoms include:

  • Becoming forgetful of the recent events and people's names.
  • Increasing difficulty with communication, often repetitive conversation.
  • Needing some help with personal care.
  • Behaviour changes.
  • Difficulty with meal preparation.
  • Finding it increasingly difficult to perform simple tasks of daily living.

 

3. Late stage

The late stage of dementia is one of near total dependence and inactivity. Memory disturbances are serious and the physical signs and symptoms become more obvious.

Common symptoms include:

  • Becoming unaware of time and place.
  • Difficulty recognising relatives and friends.
  • An increased need for assisted self-care.
  • Difficulty walking.
  • Difficulty swallowing.
  • Behaviour changes that may escalate and include aggression.

 

It is important to remember that while many abilities are lost as the disease progresses, the person retains their sense of touch and hearing, and their ability to respond to emotion.

The journey can be a long one. For carers, I draw attention to three points made in prior blogs:

  1. You need to be mindful that the person does not wish to be a burden to you: Overcoming The Guilt Felt As A Carer[2].
  2. You will need support: Taking a Break While Looking After A Loved One Diagnosed With Dementia[3].
  3. You need to allow the person to experience their journey of dementia. Try not to intervene and continually correct the person. Constant hounding will only add to their feeling of uselessness and being a burden. Focus on 'what they can still do' rather than 'what they can no longer do'. Living With Dementia: A Story By Mr Velvet Ears, Dementia Assist Dog[4].

 

Helen Alexander, a colleague in aged care with specific experience in dementia care, advises:

"Dementia is about living in the moment and enjoying life in the present. A shared activity or outing may be remembered wholly or even just in parts. Irrespective, the smiles, laughter and pure joy of the moment is retained emotionally, if not cognitively, and this add to wellbeing on a day-to-day basis."

 

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Living In The Moment; Enjoying The Present
Activity Poster For Visiting A Loved One With Dementia

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My thanks to Helen for her contribution to this article.

 

For advice and assistance on how to set up the right care, support and assistance for your loved one, at the right time and in the right place, please feel free to contact me, Danielle Robertson, at DR Care Solutions, for an initial discussion.

 

 

Resources

[1] World Dementia Month
[2] Blog: Overcoming The Guild Felt As A Carer
[3] Blog: Taking a Break While Looking After A Loved One Diagnosed With Dementia
[4] Blog: Living With Dementia: A Story By Mr Velvet Ears, Dementia Assist Dog

 

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