Tips for dementia awareness and inclusivity

Key points

• A dementia diagnosis impacts both the individual who receives it and their support networks
• It’s important to be patient and considerate as symptoms appear or worsen
• Social interaction is beneficial for both mental health and brain function

Whether you are someone with dementia, a carer, family member or friend, raising awareness and remaining inclusive are two of the best things you can do, according to dementia advocate Gwenda Darling.

“It’s really important that we advocate and raise awareness because of the discrimination from the misunderstandings of dementia,” said Ms Darling, a member of the Federal Government’s Council of Elders and the Older Persons Advocacy Network (OPAN) National Older Persons Reference Group.

Ms Darling has provided several tips on how to be inclusive of people with dementia.

Acknowledge the emotional challenges

A dementia diagnosis is just the start of a new experience. Whether it is long or short, it helps to acknowledge all of your thoughts and feelings.

That goes for someone with dementia or family and friends. There is no right or wrong way to feel and often you just have to communicate and express your worries.

For Ms Darling, she says there was a feeling of loss and grief over losing herself when she received her dementia diagnosis. However, she has lived with her diagnosis for ten years now and has experienced the highs and lows.

“You can either give in and let the disease live with you or you can live with it. There is no cure, I know there is no cure, but I forward plan,” says Ms Darling.

She also says that as a person with dementia, you need to acknowledge your own fears and set up care supports that make you feel safe.

“When people are in denial about their diagnosis, they go into ‘anosognosia’ where they refuse to accept their diagnosis and that’s out of fear. We have to remove that fear and say it’s okay and safe in the world,” adds Ms Darling.

“It’s okay to say ‘there’s something wrong with me’, we can get you help. If you don’t want people coming into the home, let’s choose who comes in, let’s work with you.”

As a carer or friend, it’s important you do not push or force any decisions onto someone with dementia. If there are fears, offer support and work together so everyone is comfortable.

Be patient and understanding

Among the common symptoms of dementia is the loss of comprehension and communication skills. Personalities can change, incorrect words can be said, and conversations may be misinterpreted.

These symptoms may show up sooner in some people than others, while there will be days of lucidity and days of confusion. Understanding and patience helps when speaking to a person with dementia.

“Dementia is called the ‘long goodbye’ because it is such a long goodbye for the family and yourself. You watch yourself deteriorate, you’re not the person you were,” explains Ms Darling.

“But other people don’t always understand that and I think that’s where the anger outbursts come from.

“I have lost family and friends living with my diagnosis, but the new friends I have gained are people within the dementia community and people who are carers of people with dementia.

“There is a brutal honesty, caring and understanding.”

When engaging or talking to a person with dementia, it is important to be patient and let the conversation flow at their pace.

Being aware and understanding of what ways dementia can impact a person can also ensure that you are able to react in the appropriate way.

For a person with dementia, you shouldn’t be too hard on yourself! You will have good days and bad days, so you shouldn’t get down on yourself for having a bad day.

Take steps to be inclusive

Family and friends should never exclude a person with dementia from events or social gatherings.

Maintaining a sense of belonging and social inclusion provides countless benefits for people with dementia.

Social activities keep your brain engaged and your body active, two important steps that promote brain cell health and reduce the risk factors of developing dementia.

Positive social interaction also helps with mental health, as a dementia diagnosis may be isolating for some people.

For someone who already has dementia, mental and physical challenges are not always easy.

There will be bad days, but it is important for friends and family to never exclude a person based on age or ability.

Speak to the person with dementia and ask if they would like to come and if they need anything catered for.

Accept the good days and the bad

Dementia does not affect everyone in the same way. One thing you can do as a family member or friend is to put any pre-existing assumptions to the side, and start fresh.

For day to day interactions, Ms Darling says it is important to meet a person with dementia where they are at. Clear communication, patience and understanding all comes together for the benefit of everyone.

“I might wake up absolutely brilliant today but tomorrow I might be dysfunctional. I know when I can’t function but I’m still able to say it’s not a good day,” explains Ms Darling.

“It’s very hard for the care partners as every day is different and they have no idea what they’re waking up to, just like I have no idea what I’m waking up to.”

It is always easiest to support someone with dementia when you can be honest and inclusive.

For information, advocacy or support regarding aged care or dementia, please call the Older Persons Advocacy Network (OPAN) on 1800 700 600 or visit their website.

In what ways can people be more inclusive to people with dementia? Tell us in the comment below.

Related content:

What is dementia
Advocating for a person with dementia
Dementia behaviour changes and challenges