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Awareness about dementia is not just public ignorance: it’s also critical to living with dementia



Often I’m struck about how the ‘awareness’ focus in dementia is making people in general public simply knowledgeable that dementia exists in 800,000 people in the UK.

But awareness about symptoms in persons living with dementia themselves is also a critical component, and cannot be factored out of the debate in current policy drive to identify the missing people undiagnosed dementia.

Policy wonks without a scientific or clinical training in dementia have become very adept at blaming GPs for underdiagnosis of dementia, but people who have some knowledge of this specialist field know that the situation is far more complicated. Other issues include perhaps a reluctance of people to seek a diagnosis because of the life-changing impact that such a diagnosis might make. There may also be nuances between different ethnic or social groups in society which might act as ‘barriers to diagnosis’. Also, some persons with dementia may be genuinely unaware of the extent of their own symptoms.

To be fair, it’s impossible for anyone who doesn’t have a diagnosis of a dementia to understand completely what living with dementia really means. Norman McNamara, who was diagnosed with dementia a few years ago at the age of fifty comments: “What can be worse than having dementia?” “It’s knowing you have dementia – it’s like having two diseases, having it, and knowing you have it.”

This is a helpful description of ‘insight’, that people with dementia can have into their own conditions. In this video, Norman reports symptoms which he knows are getting worse, and which knows are visibly getting worse to his wife, Elaine. Patients with neurological disorders are often partially or completely unaware of the deficits caused by their disease. This impairment is referred to as “anosognosia”, and it is very common in neurodegenerative disease, particularly in frontotemporal dementia.

The mechanisms underlying this phenomenon are generally poorly understood. It’s likely, however, memory for facts and events likely plays an important role. In addition, the frontal lobe systems are important for intact self-awareness, but the most relevant frontal functions have not been identified. Motivation required to engage in self-monitoring and emotional activation marking errors as significant are often-overlooked aspects of performance monitoring that may underlie anosognosia in some patients.

Another common type of dementia is a behavioral variant frontotemporal dementia (bvFTD), characterised by a slow change in personality and behaviour, is often unnoticed by the individual himself or herself. Loss of insight is a prominent clinical manifestation of this condition, but its characteristics are poorly understood. Indeed, Mario Mendez and Jill Shapira reported in 2005 some research into what appeared to cause this lack of insight in this particular condition. They found that it is associated with low blood flows in the right hemisphere, particularly the frontal lobe, the part of the brain near the front of the head.

For the most common type of dementia, the dementia of the Alzheimer type, the generally widely-held belief is that persons experience a progressive loss of insight as the severity of dementia increases. People with this type of dementia can get particularly forgetful. Most people aren’t fully aware of their impaired abilities, which doctors describe as a “lack of insight”. This can put them at risk of injury from unsafe actions and also make them less willing to seek and comply with treatment.

However, understanding a person’s level of insight can help doctors and carers better manage their treatment and daily needs, but gauging insight can be difficult. The usual approach is to ask patients questions about their current abilities and compare their answers with those from an ‘informant’, which is usually a family member or someone else close to the patient.

But this method isn’t ideal, as it relies on the informant’s opinion of the patient’s abilities, which can be swayed by factors such as how well they know the patient and how distressing they find their behaviour.

Norman often states that ‘once you’ve met one person with dementia, you’ve met one person with dementia’. This means that for any one person with dementia there’ll be different extents of symptoms of illness, different extents of abilities, different levels of insight, and therefore different perceptions of ‘living well with dementia’. So, it is arguably difficult to compare whether one type of dementia is ‘worse’ than other?

Wellbeing in dementia: Norm McNamara's interview for 'Dementia Awareness Day'



The ‘Wellbeing in Dementia’ initiative

To follow this initiative on twitter, please follow @dementialives here 

To read about the importance of wellbeing in dementia care, please look at the blog here.

 

 

 

 

 

 

Who is Norm McNamara, and what is Dementia Awareness Day?

Norm McNamara (tweet: @Norrms) was diagnosed with early onset Alzheimer’s around 4 years ago and since then has dedicated his life to raising awareness.  Last year he organised the first Dementia Awareness Day in the hope of raising as much awareness as possible with DAD events being held up and down the country. This year, Dementia Awareness Day will take place on September 15th and the charity chosen to benefit this year is the Lewy Body’s Society UK.

Interview

1. What is the motivation behind Dementia Awareness Day?

My biggest motivation has to be my family and eleven grandchildren! How could I possibly give up when I see the hope in their eyes and the smiles on their faces, what kind of example would that be if I just gave up and didn’t fight this awful illness?

 

2. What do you hope to achieve from D.A.D?

 

We hope to raise as much awareness as possible; awareness about this disease is the key to everything. It will first of all reduce the stigma that’s attached to it, and as people start to talk about it openly and not in whispers, funding will follow and things will improve tenfold.

 

 

3. What will be happening on the day?

 

This year is bigger and better than ever!! We have balloons being released all over the world at 3pm. The Lewy Body’s Sunshine Coast of Australia is also holding a HUGE event in the name of DAD day so it truly is a global event. Here in the UK we are holding a huge event in Torquay and Torquay United are having a collection the week after at a home game. Widdecombe House Torquay is also holding a garden party on the day and coffee mornings are going on in care homes across Torbay. In my home town of Boton they are holding a DAD day awareness event and some homes in Gloucester, Cornwall and others places are celebrating it!

 

4. How can people get involved?

 

There are lots of ways to get involved. Head down to your nearest event, support the cause, raise money and most importantly, spread the word. I would just like to state at this point I am just one man, on a computer , in my bedroom, I am disabled and do not work, and we now live in a supported living scheme. If I (as just one ordinary Joe) can organise so much raising awareness about dementia, can you imagine if we all shout “I Can I Will” and “Stand Up and Speak Out” what can really happen?

 

 

5. What aspect of dementia awareness needs most attention?

 

Acceptance, and when I say acceptance I mean not only by the person with a dementia diagnosis but also their family and friends.

 

 

6. What are you looking forward to the most on D.A.D?

 

I am looking forward to raising awareness, meeting new people, sharing the knowledge of this disease and dispelling the myths that surround it.

 

7. What is the future for D.A.D?

 

I would like to see D.A.D day recognised as a national dementia awareness day by all dementia related charities and maybe even become a registered charity itself one day helping to install admiral nurses all over the country.

You can find out more at the D.A.D blog

Join the Facebook page here

 

 

 

 

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