Stigma and silence surround dementia, as research funding is sadly neglected. By Ruth Johnson.

Facing up to dementia

Currently 342,000 Australians suffer from dementia.
Currently 342,000 Australians suffer from dementia.

As soon as I enter, I spot her on the far side of the large communal sitting room, shuffling slowly along, arms extended stiffly as she leans on her walking frame. It is the end of my mother’s first week in an aged care residence. She looks up, seeming a little lost, but quickly recognises me.

Only after my stepfather’s recent death did I realise how ill my mother was. Living on the opposite side of the country, I’d only been able to visit twice a year. Neither Mum nor my stepfather had given me any indication she was ill, and had continued living independently in their small home in a retirement village.

As soon as I arrived at her house I could see she was unable even to heat a frozen meal for herself; the fridge was full of rotting food, the washing machine and shower had not been used for some time; clothes, papers and garbage were strewn everywhere. Her neighbours told me they hadn’t seen her outside the house for several years. Fortunately, my mother wanted to enter a care residence, an Aged Care Assessment Team found she satisfied the criteria, and a pleasant bedsitting room was soon available in a home she liked.

Consumed by guilt at having noticed nothing for years, and mystified about the cause and nature of her symptoms, I began my own research. Starting with the Alzheimer’s Australia resources, I found most of her symptoms matched many listed under “moderate level of Alzheimer’s disease”, and some on the “severe level” list, in the About Dementia help sheets.

The term dementia describes a syndrome caused by one or more of a large number of brain diseases that afflict mainly the elderly; three in 10 Australians over the age of 85 have this syndrome. Dementia is the second leading cause of death for women in Australia, the second most common cause of death in people aged 85 and above, and the single greatest cause of disability in people over 65.

Alzheimer’s accounts for about two-thirds of all dementia, has no clear causes, except for the rare familial Alzheimer’s, and no cure, although some medications can slow the damage. Dementia-linked diseases damage many of the brain’s functions, so that specific abilities are progressively lost, leading to death. Depending on the disease and the sufferer, onset can be swift or gradual, sometimes taking up to 15 years before symptoms are noticed by others. Alzheimer’s and other brain diseases can exist as a mixture in the one person, and symptoms vary considerably from person to person. For example, while most dementia sufferers have impaired communication skills, my mother retains a semblance of normal language use in contexts of casual conversation, even though she quickly forgets most of what is said to her.

There are currently 342,000 dementia sufferers in Australia, and as life expectancy continues to increase, the number is predicted to rise to 400,000 by 2020, and to nearly a million by 2050. By the 2060s, government spending on dementia care is projected to outstrip any other health condition, according to a Victorian parliamentary briefing. Paradoxically, funding for dementia research has lagged behind funding for other diseases, such as cancer, although in 2014 the Australian government promised $200 million for dementia research.

Despite the dire projections, a general lack of knowledge and dearth of discussion mean most of us won’t recognise symptoms of dementia in our parents, making concealment by sufferers all the easier. But as soon as I began confiding in colleagues about my mother’s health, many began sharing similar stories.

Anne, a psychologist whose mother is 79, says she first noticed her mother’s symptoms when her parents came to stay for three months. She saw her father treating her mother strangely, trivialising her behaviour, almost humiliating her. This alerted Anne to her mother’s increasing incapacity: she realised it was not simply a manifestation of old age. “We tend to normalise the symptoms,” Anne says. “We see them as a normal part of being old, which they are not. But we view them like this because no one wants to talk about these diseases, as anything to do with mental health is taboo.”

Contributing to this veil of silence, according to anecdotal reports, many doctors of affected patients do not inform their adult children about dementia symptoms. In my mother’s case, I was told nothing, and when I asked her doctor for a copy of the report he was sending to her aged care residence, I was told this was in breach of confidentiality, despite my mother having granted me an enduring power of attorney. Fortunately, the medical staff at the residence have promised to hold a meeting with my mother and me, once they have completed their testing process after a few weeks.

How does a doctor even know that a patient with dementia symptoms is being cared for correctly by his or her partner or children? My friend Sandra’s mother, who suffers from Alzheimer’s disease, is cared for at home by her similar-aged husband, but when she started to become increasingly unco-operative, her husband decided that her medication was the cause of the problem and began withholding the tablets. Fortunately, Sandra quickly noticed and intervened.

Conversely, some partners or adult children notice a person’s symptoms several years before a doctor is able to diagnose dementia. After all, reduced brain function is relative; not everyone can follow complex conversations, even when young, and many people have failing memories or struggle to find the right word from time to time. The salient factor in noting symptoms is to compare the person’s current abilities with the abilities they have had for most of their adult life, according to Alzheimer’s Australia. Not everyone has a sufficiently close relationship with their doctor for this comparison to be made accurately. This is probably one of the reasons why 60 per cent of dementia sufferers remain undiagnosed, a figure noted in a British Department of Health publication.

Has our extended lifespan resulted in old age becoming a game of Russian roulette with short odds? Not necessarily. A growing body of research links Alzheimer’s to lifestyle, at least partially preventable factors. Large group studies show that good cardiovascular health and the control of diabetes, combined with physical activity and a healthy diet, reduce the risk, according to Associate Professor Catherine Itsiopoulos at La Trobe University. A recent analysis of research studies on 1.5 million people worldwide shows that following a Mediterranean diet, with its antioxidant and anti-inflammatory components, lowers the likelihood of death from brain diseases.

Other recent findings on the links between dementia and lifestyle in men, reported by Professor Peter Elwood at Cardiff University, show a 60 per cent decline in dementia among men who followed at least four of the following healthy forms of behaviour: not smoking, low body weight, healthy diet, low alcohol consumption and regular exercise.

The research also noted that social activity was important, and this is a major part of the therapy in my mother’s residence. Two days ago she was delighted to be part of an organised bus trip to a shopping centre. With encouragement, she has also started attending group art classes, singing sessions and quizzes. Not everyone is so fortunate, and 70 per cent of dementia sufferers remain living in the community, often in less than ideal circumstances.

As we can see with cancer and heart research, there’s a clear link between research investment and the discovery of ways to treat and prevent disease. Strategies are also needed to improve communication surrounding dementia, to foster frank conversations and reduce stigma, so that sufferers do not feel they have to hide away and deny there is anything wrong with them.

“Oh, it’s you!” My mother’s voice is soft but clear. “I didn’t realise you were coming today.” I don’t mind that she has forgotten I rang yesterday to remind her of my visit; I’m just thankful she still recognises me. We walk to her clean, tidy room. She tells me how much she likes the floral bedspread and the green carpet, and how she’s making new friends. Her symptoms won’t disappear, but in this structured and caring environment, her remaining abilities can be supported, enabling her to live with dignity.

This article was first published in the print edition of The Saturday Paper on July 25, 2015 as "Rising decline".

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Ruth Johnson is the pseudonym of a Melbourne author and communication researcher.

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