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Next of kin should be informed when dementia is diagnosed – Pippa McManus

Pippa McManus

One in seven people in Australia are affected by dementia – either themselves, or through a parent or a friend.

Despite this startlingly high statistic, many people do not think it will happen to them. You certainly would not think this insidious disease could manifest itself in both of your parents. Unfortunately, it can. And for Pippa McManus, the only child of Bill and Sonia McManus, this has been her reality for the last 25 years.

Pippa’s journey with dementia began when her father Bill was diagnosed with Alzheimer’s disease in 1994. Pippa had just started high school. She said it was confusing and heartbreaking to watch her beautiful, charming, smart and hilarious dad just slip away.

Even with an official diagnosis of Alzheimer’s, people around Pippa – including her mum – were reluctant to acknowledge the disease or the changes that were occurring in her beloved father.

Bill passed away in 2001 and it was around ten years later that Pippa started to notice changes in her mum, Sonia.

Pippa said, “She actually left to live in the south of France, for a while

“Before that she was very sociable, but started to cut her friends off – we think she must have known something was going on,

“We noticed some mood changes and organisational issues. She had a reputation as a wonderful entertainer and would host morning teas where she would bake for groups of ladies, but all that stopped,

“When I tried to bring it up with friends, I was told I was ‘seeing it [dementia] everywhere’.”

Pippa says getting her mum to acknowledge there was a problem was an agonising process. With no siblings to call on for support, it was up to Pippa to convince her mum to visit the family doctor.

Sonia was adamant there was nothing wrong, yet her memory loss was becoming so significant it was putting an incredible amount of strain on the relationship.

Pippa said, “I ended up giving her an ultimatum… go to the doctor with me or you will no longer see me for Monday night dinners, movies or coffee dates,

“And she did. We visited her doctor together. I was asked to wait outside. She came out and said ‘he thinks I’m very fit’ and that was it.”

As it turns out, that wasn’t it. Pippa’s mum had been given a diagnosis of dementia, but it took 12 months and a near breakdown before Pippa was informed by her GP.

“I went to the same doctor for a referral to a psychologist because I thought I was going crazy. Mum’s behaviour was getting stranger and her memory was getting worse,

“That’s when I found out she had dementia,

“I had assumed at the appointment a year earlier I would have been informed, being next of kin, or that I would have received a call to discuss it. I wondered if I should have followed up instead,

“If your loved one is given a diagnosis of dementia the next of kin should be informed,” she said.

Once Sonia’s diagnosis was out in the open, Pippa was able to organise support for her mum, and for herself. Sonia, Pippa, and Pippa’s husband attended the Alzheimer’s WA Adjusting to Change program, and Pippa says it was the best thing they ever did.

Pippa said, “I still use the skills I learnt on those Thursday meet-ups two years later,

“Alzheimer’s WA are helping mum live a full and happy life while offering incredible support to me as her carer. I am so grateful everyday for the support I have received.”.

(Image courtesy of Facebook)

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