Sunday 16 June 2019

Why we need to talk about our fears surrounding dementia

A consultant neurologist believes Alzheimer's patients do not lose their 'personhood', writes Alan O'Keeffe

Dr Jules Montague works as a consultant neurologist. Photo: Steve Lawton
Dr Jules Montague works as a consultant neurologist. Photo: Steve Lawton

Alan O'Keeffe

Fears of losing memory and suffering dementia are very real for some people and they should talk about those fears, said a consultant neurologist.

"I want to take away some of the fear around memory loss because we tend to think when we lose our memory we lose ourselves," said Dr Jules Montague.

She will speak about the sense of identity among people who lose their memories in an address at a Memory Clinic Conference in Dublin on Friday. "It's my job to talk about identity and who we are when we lose our memories. I'm seeking to raise awareness so we can have conversations about dementia that we tend to be quite scared of having," she said.

The conference poses the question: 'Can dementia be prevented?'

Dr Montague, a native of Portmarnock, Co Dublin, who works as a consultant neurologist and writer in London, will return to her old university when she takes part in the conference at Trinity College, Dublin.

She said she does not minimise the gravity of Alzheimer's disease, nor the fears it generates for people and their families, but people with mild and moderate stages of the disease "can actually live quite well with the condition".

She said people with worries about getting dementia often ask her if they are likely to lose their memory because their grandparent suffered from the condition. She generally seeks to reassure people that most cases of late onset Alzheimer's are not genetic.

"The other thing I get at talks is people come up to me and say 'I lose my keys' and 'I can't remember why I went into the next room', 'I can't remember where I parked my car' and I reassure them these are all human moments we have all the time. Forgetting where you left your keys is something that happens to us all. Now, if you don't remember what your keys are, or what they are for, then that's a different conversation altogether," she said.

Dr Montague said society considers having a good memory to be one of the most important human attributes but everyone has "flawed" memories. "In the last few years, science has discovered when you remember something, like the fond memory of your first kiss or whatever, you are only remembering the last time you remembered it.

"So all our memories are embellished, conflated, and falsified," she told the Sunday Independent.

In her new book, Lost and Found - Memory, Identity, and Who We Become When We're No Longer Ourselves, she refers to stories of people where dementia did not decimate their identity.

It is important that people, whose loved ones have dementia, should not assume they are "losing whoever they are".

"By focusing on memory, to the exclusion of everything else, we are missing that people can have autonomy and intelligence," she said.

In her book, she refers to a professor of psychology, Tom Kitwood, who warned about "a social environment that actively infantilises, intimidates, stigmatises and objectifies those with dementia".

Kitwood's efforts to end the 'dehumanisation' of those with dementia has led to new strategies used internationally to provide patient-centred care and to empower families.

Dr Montague wrote about an Alzheimer's patient, Anita, who suffered loss of memory, loss of fluency of speech, and loss of dexterity of movement. The neurologist stated she believed it was important to refuse to allow such losses "to withdraw personhood" from Anita.

When caring for a person with dementia who thinks the year is 1945, it is now believed to be less beneficial and more distressing to seek to "bring them back to the present".

"So there is a sense of just living in the moment with them, as long as no harm is done," she said.

She went on to say: "It's basically about not having such low expectations and that people with Alzheimer's actually have more capacity than they get credit for."

Home care for a person with dementia can be improved by making some simple changes to home designs, including the use of contrasting colours to make it easier for the person to navigate around their own homes.

An example of a problem of perception experienced by a person with Alzheimer's would be looking at a black doormat and believing it is a crater in the ground. Getting rid of the mat is a simple solution.

A person with Alzheimer's might think a blue-coloured floor is the ocean and be terrified to walk on it. Changing the colour of the floor would bring that person peace.

Referring to a person's sense of identity, she said: "I'd say that we are more than our memories - we need to separate pathology from the person. People with Alzheimer's can still have expression, compassion, autonomy and intelligence.

"Although I don't want to undermine the ramifications of Alzheimer's, people can live well with it for many years but as a society we need to support this - and by that I mean support those with dementia but also those that care for them.

"Our medical model of dementia often revolves around inability and invisibility; it defines people by their fading away rather than her stepping forth. And so it's really about raising awareness, enabling people with Alzheimer's to exist in the world, and providing practical support to carers. That there is more to Alzheimer's than loss and failure," she said.

The Memory Clinic Conference, organised by Mercer's Institute for Successful Ageing, takes place at TCD on June 8. Professionals welcome and people with dementia and their carers admitted free. Tickets from Dr Montague's book Lost and Found - Memory, Identity and Who We Become When We're No Longer Ourselves is published by Spectre

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