Helen James was constantly explaining her husband to people.

He would stare at people until they squirmed, place his hands on the backs of men he did not know and once pointed and laughed at a paraplegic.

The gentle and intelligent man she married seemed to have lost concept of how his actions affected others.

Gordon James had developed early-onset dementia, a disease characterised by a lack of empathy, confusion, inappropriate behaviour and, in his rare form of the disease, loss of speech.

“The way that I would normally show affection to him didn’t mean that much to him any more,” Mrs James said. “He would walk away or push your hand away. It’s a very, very cruel disease.”

Patients with Alzheimer’s disease generally remain warm and engaged despite their cognitive decline, but those with the behavioural-variant of frontotemporal dementia

[bvFTD] undergo a jarring change in personality.

These early-onset dementia patients have blunted emotions and become puzzled by affection, uninterested in socialising and less responsive to the feelings of others.

But a study published in the Journal of Alzheimer’s Disease may give comfort to carers who have borne the brunt of these changes. It indicates that the changes result from fading grey matter in the region of the brain that governs empathy.

Researchers from Neuroscience Research Australia investigated 71 individuals including 25 with Alzheimer’s, 24 with bvFTD and 22 healthy older control participants through cognitive assessments, carer interviews and neuroimaging.

Both the experimental groups had reduced capacity to understand and appreciate the emotions of others, known as cognitive empathy. But the bvFTD patients were significantly more impaired when it came to sharing the emotions and emotional experiences of others – or affective empathy.

The impairment in cognitive empathy among the Alzheimer’s group was found to be a consequence of their overall cognitive decline, rather than an impairment in empathy per se.

So while they found it difficult to explain how a book character might be feeling, they were still likely to become upset if they saw somebody crying in the street.

But among the bvFTD patients, the loss of empathy was related to patchy grey matter in the frontoinsular cortices of the brain, the integrity of which is critical to social functioning.

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Lead author Muireann Irish said this explained why Alzheimer’s patients continued to be socially appropriate in spite of the decline in cognitive function.

“There isn’t the change in personality, which I think is one of the most jarring things about frontotemporal dementia patients,” Dr Irish said.

“[This study] gives more knowledge and insight to the caregivers that there’s an organic reason for this change that becomes so distressing.”

“Empathy is an abstract concept in a way. It’s not as easily quantified as memory loss or changes in language and it can be seen as a personality issue or somebody being deliberately unsympathetic, but this shows there’s a region in the brain that changes.”

Mrs James said she had to learn to adjust to the new ways of her husband, who is now living in care.

“He couldn’t change, but I could, so I had to re-train my brain and re-train myself to cope with it,” Mrs James said.

For Louise Palmer, the descent into dementia was fast.

Diagnosed at the age of 53, she was put into full-time care three years later, during which time her three children had to learn to adjust to her new personality.

“A lot of her emotions are blunted,” daughter Riley Palmer said.

“She’s a lot more anxious and she’s a lot more angry, but her ability to connect with other people’s lives is much less.

“My sister got engaged last year and she was really excited to tell all of us, but when she told Mum, Mum didn’t even look at her.

“Then 30 seconds later Mum looked at her and said, ‘Can you help me’?”

Source: The Sydney Morning Herald