Understanding the True Reality of People Living with Dementia

‘People living with dementia are not mad, but have a condition that affects cognition, not who they are or the place they hold within the world, so please treat them with dignity, do not make fun of them, and do not be ashamed.’ (Boden.1998)

Why be ashamed of the physical breakdown of brain cells any more than the physical breakdown of any other organ?!

Dementia damages brain cells, not a person’s humanity, nor the persons need to continue to experience relationships with others and to be valued and affirmed as a person within this present moment. Losing one’s memory doesn’t mean losing oneself, nor the people one cares about.

Dementia is NOT the end of the road. Life can be just as fulfilling, uplifting and joyful as it has always been…..just different to our perception of this period of the life journey.

Caring for a person living with dementia is a complex and very much, misrepresented, misunderstood and mismanaged area, fostered by archaic stereotypical philosophies, based on ignorance and judgemental attitudes towards those that are different.

As Tom Kitwood declared, this is considered a “malignant social psychology” that is often the catalyst behind the negative attitudes and labels that people living with dementia have had to shoulder. These views continue to instil fear and undesirable perspectives.

Dementia could in fact be considered as the start of a new voyage into yet another chapter of each person’s life. Yes it may differ to what we view as a quality lifestyle, but it does not mean in any way that life is over.

People living with dementia deserve this time to continue to be one of growth, stimulation, happiness and pleasure. The only way to truly care for a person living with dementia is to enter their reality.

This requires, as caregivers, true commitment, compassion, and empathy in relation to caring for individuals living in a world that is constantly changing, and in which they may be progressively losing abilities and skills. All people living with dementia have strengths that can be utilized and fostered to obtain those golden years that should be part of every aged experience.

We are the ones who remain cognitively aware, thus should have the imagination to put ourselves in the place of others, and to understand and implement the level of care that is required to maintain the continuation of life.

However, Alzheimer’s dementia and other dementias cause memory loss and further symptoms serious enough to hinder life on a day-to-day basis thus place a person at risk.

Dementia was a relatively rare occurrence before the 20th century as fewer people lived over the age of 65 in pre- industrial society.

It is a harsh fate, that as we become a healthier society and live longer, we also face a higher risk of dementia. This has only become apparent in recent years with the advancement in treatments that allow us to live past the age of 65.

Prior to this the statistics were much lower.

• There are over 353,800 Australians living with dementia
• This is expected to increase to around 400,000 in less than five years
• By 2050 the number of people with dementia is predicted to be almost 900,000
• There is around 25100 people in Australia with Younger Onset Dementia including people as young as 30
• An assessed 1.2 million people care for a person living with dementia
• Worldwide, there are over 46.8 million people with dementia presently and this is expected to increase by 2050 to 131.5 million

The formal definition has three parts: (DSMV)

1. A decline in cognitive ability

2. Widespread cognitive problems with at least one of the following

• Problems with abstract thinking
• Problems with judgement
• Problems with speaking and understanding others Problems with complicated activity
• Difficulty recognising people or things
• Difficulty drawing or building things
• Personality changes

3. Being awake and alert as opposed to intermittent drowsiness

It is important to remember that dementia is NOT:

• Part of normal ageing
• Irreversible – e.g. In the cases of depression/delirium
• Universal – not every person has every single symptom
• Unilateral – some symptoms may be severe/others not
• Consistent

Often misdiagnosis can occur so it is vital that correct investigations are completed to rule out presentations that almost exactly mirror the symptomology of dementia.

The major 2 conditions that are similar in symptomology to dementia CAN be cured and CAN be resolved:

Delirium – Acute onset, can be treated

Depression – Acute onset, can be treated

*Please note this is PART 1 of the Series of articles to be shared by Leah Bisiani over the coming weeks.

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