In Today’s Age of Information, Why is Dementia so Misunderstood? — A Fresh Perspective from a Family Caregiver
Dementia is the number one global health and social care problem. Increasing focus centres on research and improving care practice to cope with the escalating numbers of new diagnoses in an ageing society. However, have things progressed in our understanding of a condition that costs governments around the world billions of dollars?
What’s in a name? — Misunderstanding Number 1
Much confusion surrounds the name itself.
The word “dementia” is really only a label used to describe the array of symptoms caused by changes happening in the brain, due to various brain conditions such as Alzheimer’s Disease. Other conditions include Dementia with Lewy Bodies, Vascular Dementia and Frontotemporal Dementia.
Saying that someone has dementia is like saying that someone has a headache — it doesn’t imply anything about the underlying cause. Yet, it has now taken over as the most feared condition by people over the age of 40.
People wouldn’t be happy to just receive a diagnosis of cancer, without an explanation, course of action or treatment plan. So why are we just receiving a diagnosis of dementia when we should be informed, as with cancer, of the type and stage, specific symptoms, treatment and prognosis?
And So to Press….and to Further Misinformation
Dementia continues to be depicted in catastrophic terms with words such as “tsunami”, “a ticking time bomb” and “worse than death” — a quick look through today’s newspapers demonstrates the ongoing concept of “burden” with stories of “victims”, “sufferers”, “battling with”, “heartbreak” and “worst nightmare” continuing to spread fear and dismay among the masses.
The media is a key influence on how we construct knowledge and disease. So it’s no wonder that we react in horror when we pick up a newspaper or read online about the condition.
We’ve all seen them. Sensationalised newspaper headlines that value entertainment over accuracy.
Headline news doesn’t do much for depicting people with dementia and their families as anything other than leading burdened, forlorn and stressed-out lives!!
Globally, dementia comes with a whole load of misbeliefs.
In some areas around the world, dementia is still considered to be a normal part of ageing — even relatively recently being associated with old myths such as being punishment for the sins of past ancestors.
It’s still the case today that people with the condition, in some cultures, are being locked in their rooms or hidden away behind closed doors for fear of embarrassing the family.
So, What’s Not to Understand?
Dementia is a degenerative brain condition.
Millions of people’s lives significantly deteriorate after diagnosis.
They experience memory loss, difficulty performing familiar tasks, problems communicating, poor judgement, and changes in mood and behaviour.
In terms of disease pathology in people with dementia, it is well known that the region of the brain that governs many higher-level intellectual activities are the first to be affected resulting in confusion and declining verbal communication skills.
However, research has shown that the frontal lobes, responsible for personality and emotional control, are often relatively intact until the end stages of the condition; aesthetic preferences remain constant as does musical abilities and memories.
Fighting to Live and “Save Face”
People with dementia want to continue to live a life as best possible. They want to remain in relationships, part of the family, as citizens in their own right.
What’s more, many go to great lengths to do this.
This fact is evident not only in the early stage but throughout the progressive stages of the condition.
It’s not difficult these days to find inspiring stories relating to people with dementia. One such story is that of a gentleman by the name of Lester Potts who was brought up during the American depression, a member of a hard-working family who owned their own family sawmill.
Mr Potts developed dementia in his mid-70s. His close-knit family was astonished when shown how to paint by a volunteer, Lester started to create fabulous watercolours. Lester was proud of his work, taking enormous pride in his creations.
In the late stages of dementia, with cognitive ability and verbal communication diminished, his last painting before he died was that of a very simple image of a cross saw. The model may have been simple but, as his son described, it spoke volumes in terms of its poignant meaning. It was an image which, for him, summed up his whole life, representing teamwork, strength, labour, trust, family, and a longing for home.
Keeping Up Appearances
One of the most exciting pieces of research I came across during my years at university studying for my degree in Dementia Studies was an article by Dr Christina Buse and Professor Julia Twigg at the University of Kent in the UK.
The researchers demonstrated how handbags are significant in supporting the identities of women with dementia as ‘biographical’ and ‘memory’ objects. Both in terms of the bags themselves and the objects they contain.
This is particularly so during the transition to care homes, where previous aspects of identity and social roles may be lost.
The researchers noted the importance of handbags in the life of most women throughout history. They occupy a special place freighted with social and personal meaning as well as being immensely private. Handbags have never only been items of fashion for women but markers of public identity and status.
And here they were in research demonstrating how women with dementia — including those in moderate to late-stage dementia — were able to still “negotiate identity, memories, security and privacy” through material culture, namely their handbags.
If that doesn’t speak volumes in terms of an underlying desire to retain one’s self-image, life and history as a woman, I don’t know what does!
Recently, I was privileged to listen to Dr Maggie Ellis’ (University of St Andrews, UK) work on communicating with people with late-stage dementia. Dr Ellis found that even in people with severe dementia with little or no speech, there was still a strong desire to hold on and connect with others.
Even in the absence of speech, Dr Ellis found that people with severe dementia engaged in what she refers to as “self-stimulating behaviours” such as patting objects. This, for them, was in response to the failure of the environment to provide them with occupation and a feeling of security.
Dr Ellis found that even people with very advanced stage dementia retained awareness of self and functional communication skills in a bid to “remain psychologically alive”.
The Quietest Revolution Ever
When my mother was diagnosed with combined Alzheimer’s Disease/Vascular dementia nine years ago, there was very little information available. Things have moved on since that time, but why do we still have such a huge lack of awareness and understanding?
Well, for one, governments around the world are trying, but it’s not reaching the grassroots.
What’s the grassroots?
That’s the 2/3rds of all people with dementia who still live at home in the community. And their family carers.
Why is it not reaching them? Because dementia care is lumped in with elderly care but it’s a totally different type of specialized care.
Another reason is that everything happens behind closed doors in the community:
- Poor care
- Good care
- New Insights
- New Knowledge
- New Information
- Improved ways of doing things
In general, there is no gatekeeper or whistleblower for poor care or, for that matter, any form of mechanism for sharing positive information or increasing knowledge with the outside world.
The Buck Stops Here
If governments aren’t making headway in changing our understanding and challenging the negative stigma surround dementia, then who is?
The answer is people with dementia themselves and their family caregivers who are becoming more and more resourceful in seeking out ways of helping themselves and raising awareness of their situation.
My latest book also sheds light on this issue. With over a decade of care experience and a degree in dementia studies, I’ve put together a manual to help those living at home with dementia to keep their independence and live as best possible in their own homes.
Family carers are becoming more informed and empowered in the role they have taken on by venturing forward and taking bold steps in a bid to help improve the negative stigma surrounding the condition, raise awareness as well as help themselves and those in their care.
It might be a quiet revolution at the moment, but it is coming.