​​Domenica Disalvo   BMedSci(Hons), PhD​

​​Centre for Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), ​Faculty of Health, University of Technology Sydney​

​​Co-design is an emerging methodology in research that acknowledges the value of lived experience and collaborative partnerships in designing services and systems of care. In the co-design process, all stakeholders are regarded as experts, and strategies are implemented to eliminate potential inequalities, ensuring an open, empathetic, and responsive environment. The impact of co-designing on research outcomes, particularly with people living with dementia (PLWD), is substantial. Involving people with dementia and their family carers in the codesign process leads to a better understanding of their needs, preferences, and experiences, resulting in more effective and meaningful outcomes aligned with their lived realities. 

​"Every research initiative involving PLWD should include those people and the services that support them. Not only does this ensure that the initiative is meaningful, desired, and required, but also feasible to deliver." – Dr Tom Morris, Head of Research & Information Excellence - HammondCare 

​Despite these benefits, as an Early Career Researcher, I have encountered the practical challenges of engaging PLWD in the complex and often rigorous approaches required to meet key co-design principles. PLWD may vary in their ability to engage in these research processes due to their emerging cognitive limitations and difficulty expressing preferences. I have learnt the importance of being flexible and creative and exploring alternative ways of communication and engagement with PLWD, to suit the varying needs and participant's abilities. For example, while I had initially only planned to run workshops to allow all stakeholder participants 'a voice,' I learnt that some PLWD did not feel comfortable engaging in research in that way. Instead, providing an additional avenue for people living with dementia to share their voice meant sending a hard-copy questionnaire through the mail so that they could take their time responding, in the safety and comfort of their own home. I then fed their questionnaire responses into the following scheduled stakeholder workshop. 

​"The hesitancy around involving people living with dementia in research is often fuelled by a sense of discomfort in collaborating with someone with reduced cognitive function; this means that those who would like to contribute are often denied this opportunity. The research is poorer without the lived experience input…dementia by its very nature produces unique responses and unique rates of cognitive decline, because each person living with dementia experiences a unique journey." – Imelda Gilmore, Dementia Advocate 

​I have also learnt the importance of family carers, who are often advocates and can contribute to a more respectful and inclusive research process. They have provided invaluable insights into the preferences and care needs of people living with dementia during initial workshops, which have clarified research directions. Family carers also play an important role during interviews with people living with dementia, helping to navigate communication challenges and providing a supportive environment for the person living with dementia to feel safe in collaborating and sharing their voice. To understand the care needs of PLWD, researchers must participate in education and training to develop dementia awareness, collaborate with experts, and foster partnerships with advocacy groups and associated community care organisations. 

​Partnering with people living with dementia in the co-design process means researchers must take their time to respectfully explore all the ethical considerations, including capacity issues and appropriate informed consent procedures, provide clear information, involve family or guardians when necessary while respecting autonomy, and prioritise the comfort and dignity of the PLWD throughout the research. Overall, embracing all stakeholders' diverse perspectives and expertise in co-design processes enriches research and ensures more effective, person-centred outcomes.​

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

​​Tom Gauci, Holly Markwell​

​​Dementia Support Australia, HammondCare​

“The ache for home lives in all of us. The safe place where we can go as we are and not be questioned.” Maya Angelou 

If you have ever contemplated what it might be like to have dementia, you may well have reflected on a desire to stay at home and not enter residential care. But the reality for carers of people living with dementia is that life at home is changed in ways that were unimaginable prior to the diagnosis. The journey from spouse or adult child to carer can leave people feeling lonely and isolated, unsure of how to navigate services or respond to the many changes the person is going through. How we support family carers to navigate this changing landscape is a key component of Dementia Support Australia’s Staying at Home (SAH) program. SAH is a carer well-being and respite retreat for people living with dementia and their family carers. The program empowers family carers with the knowledge, tools, and confidence to navigate changes in their caring role. Guests living with dementia are offered a gentle and supported introduction to respite, with opportunities to connect with others who have similar lived experiences.  

Developed in recognition of the barriers people living with dementia and their family carers face when accessing respite services, the program was a beacon of hope for Chris and Suzie. Their participation in the SAH program resulted in many changes and insights, improving the well-being of both. Suzie’s sensitivity to loud noises was causing considerable distress for both parties. From in-program discussions, Chris realised the sensitivity was a result of sensory changes linked to dementia, compounded by her hearing loss. 

Chris shared “I learnt a lot about how to communicate better with Suzie. I realised my words overwhelmed her, so I started to use non-verbal cues, reducing the number of words, and discovering new ways to connect.” 

Chris also began recognising when Suzie needed reassurance and extra attention. If he saw her getting anxious during a noisy conversation, Chris gently guided her to a quieter spot for coffee, something they both loved. During their participation, Suzie tried activities tailored to bring her joy. An unexpected highlight was when she embraced a robotic dog, Sammy, talking to it in French. Suzie was genuinely touched by the offer from the team to take Sammy home with her. 

Back at home, Suzie started painting, and they tried papier-mâché together. Suzie even played a word game accompanied by Sammy, radiating happiness. The program gave Chris and Suzie a new way to connect and find happiness in everyday moments. 

Over the past 18 months, Dementia Support Australia has delivered more than 35 SAH programs nationally in all states and territories. The sense of community, shared experience and social connection has been integral to the success of the program, with one carer commenting, “I felt I was in a safe place where I didn’t need to put on a brave face to everyone. We were with people who understood the journey we are on”.  
 
The Department of Health and Aged Care made additional funding available, with 12 new providers delivering this program across Australia, greatly increasing access to this innovative carer well-being and respite program. More information is available on the DSA website. 

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

Marianne Coleman, Bao Nguyen, Lynette Joubert, Allison McKendrick

Australian College of Optometry, University of Melbourne, University of Western Australia

Being able to see well matters to people living with dementia. In our study, we interviewed people living with dementia and carers, and found many activities enjoyed by people living with dementia are visual, such as gardening, seeing friends and family, and arts/crafts. The 2022 World Alzheimer’s Report highlights that looking after sensory health, such as vision and hearing, is really important to help people living with dementia maintain their independence, and to create environments/opportunities for them to be and do what they value.  

While people living with dementia at home and in aged care facilities are not any more likely to develop sight-threatening eye diseases than people without dementia, they are at greater risk of experiencing preventable sight loss. A UK study sent mobile optometrists to assess over 700 people living with dementia at home and in residential aged care facilities. They found one in three people with dementia had reduced eyesight, often due to addressable issues such as cataract or outdated glasses.  

Poor eyesight makes living with dementia harder.  It can increase risk of falls and make it more difficult to engage in tailored activities and programmes to enhance wellbeing.  Therefore, preventing sight loss for people with dementia is important, and regular eye tests considered as part of primary preventive care. Unfortunately, people living with dementia can experience barriers to accessing routine eyecare.  

We wanted to share some key messages from our research about dementia-friendly eyecare with the aged care sector: 

1. Good eyesight is important for people living with dementia.  Regular eye tests should be part of the post-diagnosis care pathway and continue  even when care needs have escalated, such as transitioning to residential aged care, or if glasses are no longer being worn.  Support people with dementia to get their eyes tested once a year with a dementia-friendly optometrist. For people with younger onset dementia, this would be every three years, or more often if the person has an eye condition. We have developed information booklets about eye tests for people with dementia which are available online and can be printed for your use.  
2. Many parts of the routine eye examination can be successfully performed for people with dementia, with adaptations to accommodate communication difficulties and cognitive impairment. Simply telling the optometrist about a dementia diagnosis in advance is a huge help. Useful information about visual function can be obtained even from simple tests, and any vision impairments can be documented for the benefit of other care professionals, to inform person-centred care, rehabilitation or reablement across settings. Examples include visual field defects, reading difficulties, or poor contrast vision due to cataract. 
3. Optometrists can perform eye tests in residential aged care or at home using portable equipment. If you are worried about the eyesight of someone under your care, or their glasses are damaged, broken or missing, an optometrist can perform a check, and this is usually billed under Medicare.  You can use search functions on Optometry Australia to find optometrists servicing aged care, doing home visits or who are dementia friendly. 

You can download the information booklet about eye test for people living with dementia video (3 mins) or  watch the 20 seconds silent video on YouTube. You can also read more about why everybody living with dementia needs regular eye tests on Melbourne University website.

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.

Bethany Kings (National Program Manager), Marie Alford (Head of Dementia Professional Services)

DSA Dementia Support Australia

They say change is inevitable, and also that change can be slow. That is, until there is a crisis. We have seen how the impetus of a pandemic and aged care reform has challenged the pace of change and has pushed us to creatively adapt processes, communication channels, systems and funding mechanisms to meet the immediate health demands.

Dementia Support Australia (DSA) is not immune to this change as we seek to support a sector in flux. One strength of the service is our ability to pivot in response to the surrounding landscape. Whilst our core business is to support people living with dementia where behaviour impacts care, the way this is undertaken has evolved since the inception of DSA in 2016.

At the beginning of COVID-19, access to residential care homes was limited. However, with a cocktail of reduced visitation, changed routines, staff in masks, goggles, gowns and gloves, and constantly changing staff, the need for DSA support only grew. Out of this came the Dementia Engagement Modelling Program (DEMP) and greater utilisation of our brokerage services. Engagement continues to be a core focus within our work.

With the implementation of Royal Commission recommendations came the strengthening of behaviour support plans and an overdue focus on reducing restrictive practices. The sector needed guidance but, more importantly, support. With our expertise in non-pharmacological approaches to behaviour management, DSA sought to understand the regulations and published our Behaviour Support Plan resources to help providers build their plans and bring them to life. We consider this a work in progress, with care providers facing previously unseen workforce challenges.

Our focus has been drawn more recently to the outcome of increased regulation and workforce issues further impacting care transitions, particularly from the hospital. We have been piloting the Acute to Residential Care Transition program, designed to understand some of the complex factors that lead to ‘bed block’ and offer policy and practice development. DSA has been supporting General Practitioners who care for people with behaviours and psychological symptoms of dementia through the GP Advice Service, offering opportunities to talk with our medical specialists about prescribing and de-prescribing, and introducing Dementia Support Coaches in response to feedback that on the ground modelling of behaviour support is the most effective way to effect change.

With the current aged care workforce shortages, the aging population, rising costs and continuing reforms, we are working to make our recommendation reports more streamlined and accessible to front-line staff, taking it to single concepts, using different mechanisms to deliver interventions. But we need your help to ensure this meets the diverse needs of the sector. We have a strong and stable vision focussing on holistic, seamless, borderless support consistently delivered with respect to local geographic context. Knowing the person is the foundation of everything we do as we build recommendations and interventions in partnership with those who provide care.

Funded by the Australian Government, call DSA on 1800 699 799 or head to the DSA website; we are here to help.

*The views and opinions expressed in Knowledge Blogs are those of the authors and do not necessarily reflect those of ARIIA, Flinders University and/or the Australian Government Department of Health and Aged Care.