OPINION

We must end the discrimination of people living with dementia

MISSION: Dementia Australia wants to change attitudes and foster greater empathy and acceptance. Picture: Shutterstock
MISSION: Dementia Australia wants to change attitudes and foster greater empathy and acceptance. Picture: Shutterstock

This week is Dementia Action Week, providing us all with an important opportunity to reflect on how we can do more to support people living with dementia.

The theme for this year's action week (September 21-27) is "Dementia. A little support makes a lot of difference''.

Dementia is the chronic disease of the 21st century. It affects close to half a million Australians, with that number set to double in the next 25 years.

One of the biggest issues people face following a diagnosis of dementia is social isolation, as friends, family and their community may struggle to understand how to best support and continue to include people living with this progressive and ultimately debilitating condition.

Often people stop talking to those living with dementia, staying in touch or inviting them to things. That's not dementia, that's discrimination.

Dementia Australia has been tackling discrimination head on so that no-one with dementia feels isolated.

We want to change attitudes to dementia and create greater empathy and acceptance within the wider community.

This week, we have released findings from a survey undertaken last year.

More than 5000 people responded to the survey, including people living with dementia, families and carers, people who work in the health and aged care sectors, and members of the general public.

The purpose of the survey was to help create an informed, national picture to better understand how discrimination for people living with dementia occurs and what it would take to shift that discrimination.

The survey findings reveal just how big an issue discrimination is and the impacts it has for people living with dementia, their families and carers.

Three out of four people who live with dementia say people don't keep in touch like they used to, while 65 per cent say people they know have been avoiding or excluding them.

Other key findings from those who responded to the survey include:

  • 94 per cent of family members, friends or carers who responded to the survey say people haven't kept as in touch with a relative who lives with dementia as they used to
  • 71 per cent of family members, friends and carers who responded to the survey say they haven't been included in family activities
  • 80 per cent of family members, friends or carers who responded to the survey say that people have gone out of their way to avoid their friend or relative who lives with dementia when they are out and about
  • 81 per cent of family members, friends and carers who responded to the survey felt that people in shops, cafes and restaurants treat people with dementia differently
  • 90 per cent of family members, friends or carers who responded to the survey say that their friend or relative who lives with dementia is treated with less respect than other people

These findings show us that discrimination stems from a lack of understanding and knowledge of dementia - what it is and how it impacts people.

However, it would not take much to turn those findings around.

A little bit of support can make a lot of difference to someone with dementia.

It could be as simple as giving someone space to do things for themselves, listening to the person, not trying to solve all their problems, giving the person time to find the right words or using technology to support someone in their day-to-day activities.

The way we respond, communicate and interact with a person living with dementia has an enormous impact on their day-to-day life and we can all do more to make sure people living with dementia remain included and accepted in their own community.

During the week, we are sharing one tip a day showing simple, yet effective, ways to support people living with dementia.

The concept for Dementia Action Week 2020 has been developed in consultation with dementia advocates, who have a lived experience of dementia.

The stories and voices that will feature across the week are real.

It is a human right to be treated with respect and dignity.

People living with dementia, their families and carers, deserve a better informed and supportive Australia, where everyone understands dementia.

To find out more about how to support someone living with dementia, visit dementia.org.au/dementia-action-week

Maree McCabe is chief executive of Dementia Australia.