New campaign sheds light on ‘unseen struggles’ faced by dementia caregivers

Caregivers of people with dementia could be lacking adequate support, according to a prominent Australian dementia organisation chief.

It's estimated that 70 per cent of people with dementia live at home and receive support from their families and carers.

The 'Dementia affects us all' campaign by Dementia Support Australia (DSA) sheds light on carers' often-unseen struggles.

The television commercial depicts the journey of a husband and wife living with dementia and their challenges, emphasising the importance of seeking help. 

"Most people don't realise that support is available for family carers and people living with dementia at home, as well as home and community care providers," DSA Head of Professional Services Marie Alford said.

"We want caregivers to get help before they reach their limit."

Aged Care Insite spoke with Ms Alford about the importance of supporting caregivers in their vital role.

ACI: What challenges do caregivers face in supporting people with dementia?

MA: Up to 90 per cent of people living with dementia will experience behaviours and psychological symptoms of dementia (BPSD) at some point in their journey.

Behaviours are our natural responses to daily life events. 

For people with dementia, behaviours, like everyone else, can be influenced by factors such as the environment or communication difficulties. 

Some behaviours are caused by actual dementia, depending on the type of dementia a person has.

Certain types of dementia, like frontal lobe dementia and dementia with Lewy bodies, can also result in changed behaviours due to specific brain damage.

Other factors, like noise or communication style, can trigger agitation or confusion.

Then there could be communication difficulties, such as language barriers, speaking speed, and approach direction, which can also trigger behaviours in individuals with dementia.

Nevertheless, many of these behaviours can be addressed and improved with simple interventions, tips, and techniques provided by our team.

How does the campaign aim to educate caregivers?

One of the goals of this campaign is to educate people and help them learn these techniques, especially if they are still living at home. 

Instead of waiting for significant changes to occur, paying attention to early signs of change is essential. 

For example, if someone starts getting out of bed more in the evening than their past behaviour, it could indicate something is going on. 

Our team would then engage with the family or the caregiver involved in providing care, including home care providers, to understand the situation better. 

We would explore the person's usual preferences, likes, dislikes, and assess if the observed behaviour is out of character. 

We also consider any potential medical issues that might be impacting the situation.

Delirium, for instance, is a modifiable factor that can cause behavioural changes in many individuals with dementia, and early treatment can make a significant difference.

What specific aspect of dementia care does the campaign address?

Most people don't realise that support is also available for family carers and people living with dementia at home, as well as home and community care providers.

Sometimes, family caregivers, like spouses, partners, children, or parents of someone with dementia, forget that other services are available to support them. 

These services help them keep their loved ones at home longer.

The campaign shows the experiences of people with dementia and their caregivers in a strong and direct way. 

We want caregivers to get help before they reach their limit.

It also reminds people that the relationship between the caregiver and the person with dementia is just as important as the caregiving itself. 

For example, in the campaign, they show a husband caring for his wife with dementia, and we want to remind everyone that he is still her husband, not just her caregiver.

By encouraging caregivers to seek help early and emphasising the importance of relationships, the campaign aims to give caregivers the support they need and improve the quality of life for both them and their loved ones.

What challenges might aged care providers face in caring for people with dementia?

I'd like to say first that I think aged care providers are already doing a fantastic job in supporting people with dementia.

The dedicated workforce tirelessly attends to their responsibilities every day, striving to enhance the quality of life for those under their care.

But in nearly all situations, there's always room for improvement.

It's important to acknowledge the challenges they face, such as not having enough time and dealing with factors beyond their control.

I truly believe that if people slow down and focus on the person with dementia, it can save time in the long run and reduce challenging behaviours.

This means stepping back and ensuring the workforce gets the support they need, including providing proper coaching and mentoring to the staff.

The DSA can also help in training and provide support.

It's not easy to deliver attentive and mindful care, especially with the ongoing pandemic and how care is perceived in the community. 

But I strongly believe that aged care providers and home and community care providers show exceptional dedication every day. 

We should celebrate their hard work and prioritise a partnership of care that is built on relationships.

How can we improve the care we provide to people with dementia, both from home and in residential aged care?

Both home care and residential aged care providers have the opportunity to improve their support for people with dementia and their caregivers.

One important aspect is truly getting to know the person receiving care, including their background, what they like and dislike, and their life experiences.

Having this understanding can greatly enhance the quality of care provided.

It's also crucial to ensure that the caregivers receive proper training and education not only on the different types of dementia but also on the changes that can happen with the condition.

Dementia involves more than just memory loss, and caregivers need to be prepared to address various aspects of the disease.

Lastly, building a collaborative partnership with the person with dementia and their care network, which may include family and friends, is vital. 

This approach focuses on relationships and includes everyone in developing and delivering care. 

People with dementia can express their preferences and emotions, no matter their stage, while caregivers can offer valuable insights into the person's life and history.

By working together in this care partnership, regardless of the care setting, we can significantly improve the quality of care and the overall experience for people with dementia.

Do you have an idea for a story?
Email [email protected]