Advocating for a person with dementia

Key points

• Advocacy and education are important steps to destigmatising dementia
• Further awareness about the various types of dementia is still needed
• Community groups provide support and direction for a person with dementia

As more research is conducted, our understanding of dementia and the types of dementia grows. However, there are still many unknown factors, particularly on the genetic causes.

Because dementia is still not widely understood by the public, there are also pre-existing assumptions as to what dementia is and the symptoms.

Gwenda Darling, a dementia advocate and a member of the Federal Government’s Council of Elders and the Older Persons Advocacy Network (OPAN) National Older Persons Reference Group, says that ongoing advocacy is needed to challenge existing assumptions.

Ms Darling, who was diagnosed with younger onset behaviour variant frontotemporal dementia ten years ago, become a strong dementia advocate because of her personal experiences living with dementia.

“It’s really important that we advocate [and] raise awareness because of the discrimination from the misunderstandings [about] dementia,” says Ms Darling.

“I truly think some people still believe that dementia can be caught – the way you lose your friends, the way people avoid you, the way you’re excluded from invitations.

“There are so many types of dementia, it’s not just Alzheimer’s, either. My type of dementia I don’t lose my memory until right at the end. It’s so much more.”

Advocating for yourself – as a person with dementia – or for a loved one with dementia is necessary to break down barriers and provide quality of life to people who have to live with dementia every day.

Provide support when they need it

Unpredictability is a challenge when living with dementia. There are days when a person will not be able to interact socially or they are not lucid compared to other days.

On these occasions it may be up to you, as a carer or family member, to speak for them. Talking with respect and honesty will educate others as to the challenge of living with dementia.

This kind of advocacy will help break down social stigma attached to cancelling plans when a person with dementia is unwell.

“I think it’s important for people to have awareness that we don’t pick and choose how we are, it is what it is,” explains Ms Darling.

“There’s nothing I can do about it and there’s nothing you can do to coerce me into feeling good. It just happens.

“You might have something planned but I just can’t do it on the day. Those around us need to know that sometimes we just can’t honour commitments and obligations.”

It may also be difficult for a person with dementia to communicate and interact with others. However, you should never talk over them if they are just struggling to find the right word.

“You have no idea what’s coming out and you need people around you who love you enough to talk about it,” adds Ms Darling.

“[For instance], I know the word in my head but I couldn’t get it to my mouth.”

When this occurs, slow the conversation down and let the person with dementia know they have either said the wrong thing or misunderstood the conversation.

Then allow the person with dementia to recentre and refocus, and then support them to find the right word.

Advocating for dementia specific support

The official starting point for anyone with dementia is the day they receive a diagnosis. Unfortunately, you may find there is not always clarity in regards to what will occur over the coming years – or even what you should do next.

Ms Darling experienced her own challenges when she was diagnosed, and says advocacy and education is just as important for medical professionals as it is for friends and family.

“We need to educate medical professionals, and people with dementia need to ask for their variant because you can then receive appropriate treatment and support,” explains Ms Darling.

“I was provided with medication and a diagnosis but he never told me what was wrong with me.

“That’s where we need to educate professionals and have them tell people the truth about what their dementia is and what may happen.”

Dementia is an umbrella term, encompassing many different types of neurological disorders that affect brain function. This is why there is no concrete approach to managing or supporting dementia.

The most common types of dementia include:

• Vascular dementia
• Lewy body disease
• Alzheimer’s disease
• Frontotemporal dementia
• Childhood dementia
• Chronic Traumatic Encephalopathy (CTE) dementia

To learn more about the different types of dementia, read our article, ‘What is dementia?‘.

The symptoms you experience will differ from someone with a different type of dementia. For example, where Alzheimer’s disease impacts short-term memory and communication, Lewy body disease may cause hallucinations, tremors and stiffness.

Some types will impact the brain more quickly than others, too, and clarity around those expectations from day one is beneficial for everyone involved.

If you do have any unanswered questions from a diagnosis or concerns at any point, do not be afraid to speak to your medical professional or dementia support services.

Educate others around you

Sometimes it will fall on yourself to advocate and educate others about dementia and the different types of dementia. If you have lived with dementia for a while, you are likely to have more tools and resources at the ready.

Talking about dementia does not have to be an arduous task though. An effective education tool could be your own set of business cards, something Ms Darling uses herself regularly.

The cards can include your name and links to useful websites where more information can be found. It is a quick and easy support for situations where you might otherwise feel overwhelmed with your dementia, such as travelling on public transport.

“People living with the disease have to destigmatise it as well. We have to get the message out there,” says Ms Darling.

“I often give them to a bus driver I don’t know because getting on the bus is very anxiety inducing. I ask them to tell me when I need to get off at a certain stop. People are generally very helpful if you ask them.”

Pointing people to different resources that may help them better understand dementia can also further spread awareness and education on the subject.

Creating safe spaces in the community

Dementia advocacy not only benefits yourself, but also others in a similar position. Social inclusion and a sense of belonging helps to avoid isolation for people with dementia, while also providing mental stimulation.

It is also about finding people in a similar position where you can share thoughts and feelings on your dementia.

If there are no dementia community groups in your area, look to create one. You could contact a local community hall or council in regards to setting something up.

Regular catch-ups will keep you socially engaged and help build a support network for yourself and your carer.

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

What are your tips for dementia advocacy? Tell us more in the comments.

Related content:

What is dementia?
Dementia behaviour changes and challenges
Accessing the right dementia support
The link between dementia and depression