Supporting those impacted by dementia

With Dementia Action Week taking place from 16-22 September, we shine the spotlight on what it means to live with this condition and how it affects families and caregivers who also require support.

Dementia describes a collection of symptoms caused by disorders affecting the brain. It is not one specific disease. 

Dementia Australia's executive director of services, advocacy and research, Dr Kaele Stokes, says the early signs of dementia can be very subtle and may not be immediately obvious. 

According to Dr Stokes, common signs of dementia can include: 

• Memory loss 

• Changes in planning as well as problem-solving abilities 

• Difficulty completing everyday tasks 

• Confusion about time or place 

• Trouble understanding what we see (objects, people), and distances, depth, and space in our surroundings 

• Difficulty with speech, writing, or comprehension 

• Misplacing things and losing the ability to retrace steps 

• Decreased or poor judgement 

• Withdrawal from work or social activities 

• Changes in mood and personality. 

“A number of conditions have symptoms similar to dementia, so it is essential to talk to your doctor when symptoms first appear,” Dr Stokes says.

An early dementia diagnosis means early access to support, information, and if it is available, medication. 

National Seniors Australia member, Adam, says his father lived with dementia for several years before being diagnosed. 

“The signs were there early on, but we didn’t pick up on them as Dad was so good at covering them up,” he explains. 

“He would buy the newspaper religiously each and every morning and read it from back to front, just so he could converse with everyone about current events. 

“It got to the point where the signs became more apparent, and we noticed his cognitive decline.  

“Dad was still living at home with Mum but was doing irrational things and going missing regularly. A sudden urinary tract infection landed him in hospital and while he was there, he became totally delusional and aggressive, which was not in his nature. 

“Once the infection was treated, he was still delusional, and we were advised by his geriatrician that it was not safe for him to go home. He had good and bad days in care before he passed away three years later.” 

According to Dr Stokes, most cases of dementia are not caused by an inherited genetic mutation. 

“Because inherited forms of dementia are very rare, genetic testing is not relevant for most families affected by dementia,” she explains. 

“For those affected by familial dementia, genetic testing is available. 

The decision to undergo genetic testing for familial dementia is very complex and the advantages and disadvantages must be carefully considered. 

“There are about 10 genes that have been identified as increasing the risk of Alzheimer’s disease. The most important of these is the apolipoprotein E (ApoE) gene. It comes in three forms—ApoE2, ApoE3, and ApoE4. 

“Having ApoE4 increases the chance of developing Alzheimer’s disease but does not make it certain. Some people with ApoE4 never develop Alzheimer’s disease, and others who develop Alzheimer’s disease do not have ApoE4. 

“ApoE3 is associated with an average risk, and ApoE2 with a reduced risk. A blood test can identify which forms of ApoE a person has, but it is not possible to predict who will or will not develop Alzheimer’s disease. 

Dr Stokes says that to help people consider the issues for themselves and their families, specialised genetic counselling is essential. 

This is available through state-based genetics services and your doctor can provide details and referrals. The National Dementia Helpline (1800 100 500) is also available 24 hours a day, seven days a week. 

Qualified and friendly advisers can provide information on early symptoms of dementia and can talk through the next steps if you think you or someone you love is experiencing them. 

It is certainly normal for some changes to occur in our memory and thinking as we age, Dr Stokes explains, however, major changes in memory are not normal. 

“Occasional memory lapses and forgetfulness are normal. Changes to memory and thinking that interfere with someone’s normal social or working life are concerning,” she says. 

Several conditions produce symptoms similar to dementia. These can often be treated. They include some vitamin and hormone deficiencies, depression, medication side effects, infections, and brain tumours. 

It is important to talk to a doctor when symptoms first appear. If symptoms are not caused by dementia, early diagnosis will be helpful to treat other conditions. 

“Keeping the brain stimulated and active is important for our cognitive health, at any age,” Dr Stokes says. 

“Staying active and sociable can help your skills and memory. Look after your heart, body, and mind. Keeping your mind active can help you feel good and think more clearly.” 

Dementia Australia recommends: 

• Avoiding harmful substances. Brain cells can be damaged by drinking alcohol at risky levels and by drug abuse. 

• Challenging yourself. Reading widely, keeping mentally active and learning new skills strengthen brain connections and promote new ones. 

• Checking in on your feelings and emotions. Feeling positive and in control will help your brain to function well. 

• Relaxing. Tension may prolong a loss of memory. 

• Getting regular and adequate sleep. 

• Eating a varied and balanced diet. 

• Using a notepad and calendar. 

• Taking your time with tasks. 

• Keeping essentials such as keys and glasses in a particular place. 

• Repeating names of new acquaintances in conversation. 

• Keeping physically active and trying new physical routines and activities. You can also track and optimise your brain health over time with Dementia Australia’s free BrainTrack app. 

BrainTrack uses games and challenges to help users monitor and understand changes to memory and thinking over time. It’s available on the Apple App Store or Google Play. 

When Marie was diagnosed with vascular dementia a few years ago, it didn’t affect her day-to-day life that much, her son James explains. 

“She would forget the odd thing here and there, but it was manageable. Unfortunately, Mum had a very small brain bleed and ended up in hospital, which saw her dementia become a permanent thing almost immediately. It is something she did not recover from. 

“At the start of this hospital stay, she was in and out of being lucid and couldn’t work out why she was there. We had to keep repeating what happened to her on a daily basis. We felt it was important not to stress her out and let her ask the question a thousand times to reassure her she was safe. 

“She was never going to get better. That was our challenge to deal with and it was very difficult to accept,” James says. 

“Mum ended up having to go into high-level permanent dementia care. We were dealing with delirium and dementia—two different things that are easily confused with one another. 

“Learning how to deal with her new life has been incredibly hard for the family, and we are all handling it differently. 

“Sometimes she doesn’t remember you and that is crushing, and other times she does and you see small glimpses of the old Marie. Some days there can be aggression and other days laughter— either way, you still walk away from a visit crying because you know it’s not where she would want to be.” 

James says Dementia Australia has been an incredible source of support and information for the family while they navigate this difficult time.

“They have helped us in some very dark times. We are trying to learn as much about dementia as possible to understand what Mum is feeling. 

“This journey is not about us—it’s about how we care for Mum and how our reactions can trigger her and make her feel worse or better. We also started following dementia experts on social media to get tips and advice.” 

Dementia Australia offers a range of services to support anyone impacted by dementia. 

“No one should face dementia alone, which is why we offer a variety of support including post-diagnostic support, counselling and education services, as well as carer support groups and more,” 

Dr Stokes says. that has been shown to slow disease progression in clinical trials. 

“Dementia Australia is also home to the largest publicly accessible dementia library in the world. The library provides free access to print and digital resources about dementia and is available to everyone.”

During the past few years, there have been hundreds of revolutionary studies and research breakthroughs that have advanced our understanding of dementia and given us more informed insight into how to provide exceptional care to people and their families while scientists strive for a cure. 

According to Dr Stokes, one example of a recent development was the approval by the Food and Drug Administration (FDA) in the United States for Donanemab—a treatment for Alzheimer’s disease 

“Drug developers hope that when taken in the early stages of Alzheimer's, donanemab would allow people to have more time to participate in daily life and live independently. 

The drug is not yet approved in Australia,” she explains. 

“Other interesting studies have indicated that females may be more affected by dementia than males. Researchers are still investigating why this may be, with menopause believed to be related. 

“The gut is also another interesting area of dementia research. Researchers are currently examining if bacteria in our gut, known as the microbiome, may hold the key to early detection of dementia and more targeted personalised treatments for the condition.” 

The Dementia Australia Research Foundation More Than a Cure report (bit.ly/3WUCHtY) highlights many of these game-changing research studies that have advanced our understanding of dementia over the past 25 years. 

The National Dementia Helpline on 1800 100 500 operates 24 hours a day, seven days a week, 365 days a year—even on public holidays. Dementia Australia doesn’t just support people who live with dementia but also loved ones, carers, healthcare workers and anyone else impacted by dementia. 

This article is featured in National Seniors Australia’s quarterly member magazine, Our Generation. 

Become a member today and receive a yearly subscription to Our Generation digital magazine as part of your membership, along with exclusive discounts, competitions, branch access and more! 

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