Jun 28, 2018

Dementia: “there is no shame involved, my ignorance had lead me to feel that way”

Dementia ambassadors from around Australia, people living with dementia and their families, and politicians gathered in Canberra yesterday for the Parliamentary Friends of Dementia meeting.

Peter Gill, who is living with dementia, spoke movingly about his experiences since being diagnosed.

Mr Gill said he was “shocked and ashamed” when his geriatrician told him he had Alzheimer’s dementia, but that he very quickly realised “there is no shame involved, my ignorance had lead me to feel that way”.

“That didn’t stop me from being totally pissed off,” he admitted to the room.

“Today’s event highlights the necessity to make our community very aware of dementia and its many guises.”

Mr Gill’s wife of 50 years cares for him, and he said she has encountered nothing but kindness from family, friends and doctors.

The couple have found that being open about the situation has helped them.

“We found that by declaring my dementia at the outset, most people are very understanding and keen to help.”

Mr Gill was keen to encourage people to become Dementia Friends.

“Understanding dementia as a community, we can develop an awareness of the needs of those living with it,” he said.

He spoke of recent experiences where help was provided when he revealed he was living with dementia – and situations when it wasn’t, and the difference both made to his life.

Mr Gill said he would like to see more chairs in shops. “Something I really need when I am out, is a chair to sit on. I get tired very quickly and find it difficult to walk very long,” he said.

Mr Gill spoke of a “wonderful cruise” he and his wife took from Singapore to Mumbai, “but it could have been made so much better had the company been educated and dementia friendly.”

“Our needs, even after being notified of my dementia, were ignored. There were no offers of assistance, so we just managed the best way we could.”

“We have since made them [the cruise operators] aware of our disappointment,” he said.

Conversely, Mr Gill said that at Canberra airport, a wheelchair was made available on arrival, and allowed all the way to the door of the aircraft.

“The airline, having been notified, was dementia friendly every way,” he said.

“In Singapore, at the enormous Changi airport, there were staff were on hand to assist us with luggage and transport. It was seamless,” he said.

“By becoming a dementia friend and having knowledge of its many forms and the day-to-day struggle for sufferers and carers, it would make the world of different to people like me.”

What is a Dementia Friend?

Janice Hodgson, who cares for her husband Fred who is living with dementia, also spoke of her experiences.

Mrs Hodgson said a ‘dementia friend” is someone “who takes the time to find out something of what it means to live with dementia in order to be able to relate more meaningfully with them.”

Mrs Hodgson’s husband was diagnosed with dementia 7.5 years ago, and since then she has done everything possible to give him the best quality of life possible.

She read books, attended Dementia Australia education classes, and joined support groups where she would share the tears and laughter of her daily ups and downs in a ‘safe’ environment.

Mrs Hodgson said her children have come to understand their father’s condition.

“Having been a high school teacher in my distant past I gathered family together and gave them a lecture on communication and dementia. I’m not sure if they appreciated it at the time. But we do now have a family that has accepted the diagnosis, they relate well to their dad, and even more encouraging, they’re helping our grandchildren to be dementia friendly as they spend time with their grandfather,” she said.

But socialising has been harder, Mrs Hodgson said.

When her mother had dementia 30 years ago, Mrs Hodgson said her father struggled with anger, shame and fear.

“As I look back on those times and those years that we went through I’m very grateful for all the changes that have happened since that time. However, stigma and shame are still prevalent.”

Mrs Hodgson said the Dementia Friends campaign is an important part of the “jigsaw” to develop dementia friendly communities, which would give people like Fred and the almost half a million people like him, “a sense of belonging, a sense of worth, and a sense we care.”

Mrs Hodgson said she struggles with “outspoken ignorance”. She said some friendsn have challenged Fred’s diagnosis. “They have no idea of the battle it has been and the courage it takes to actually get a diagnosis and then dealing with the diagnosis and the associated stigma.”

She said others say of Fred, who is 88, “it’s just his age”. Others ignore him in conversation. And some people correct Fred when he makes a factual mistake.

“I want my husband to be able to walk into a bank and know there will be someone there who can recognise his difficulties and help him conduct his business without his getting agitated and confused,” she said.

“I want him to be able to walk down to the local cafe and order a coffee and a piece of cake.

“I want him to be able to go for a walk around lake and if he forgets his way home, someone will recognise he’s lost and walk home with him.

“Fred’s life is restricted because people are ignorant,” she said.

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