ALICE: A Stronger Voice Together

Authenticity comes from empathy. It is a genuine desire to understand and respect the experience and perspective of a person, no matter the circumstance of the interaction.

I can always tell the difference between an authentic and an inauthentic experience. You may not think I can see through it, but I can.

Living experience expert

Being genuine in all forms of communication is critical. Patronising or non-inclusive communication undermines good intention. Choice of language is important. If you’re unsure about something, seek to understand. Don’t assume you are the expert. You may have knowledge and experience but authentic engagement honours all perspectives.

Authentic engagement can make a world of difference to the person accessing support from, or engaging with Dementia Australia.

People who are authentic follow through on what they say, so you’ve got to back up words with action.

Dementia Australia staff member

Dementia Australia’s Staff, Executive and Board:

• take the time to get to know a person and have a genuine interest in them
• listen actively
• discuss people’s ability to influence decisions
• back up words with actions
• are clear and real about expectations
• follow through on what they say and keep people informed
• uphold the values of the organisation.
   

We use the term ‘living experience’ to explain how someone’s experience has informed their perspective. The voices of people with living experience (people living with dementia, their families and carers) are central to our work and we elevate their voice to create positive change.

My own personal living experience is at the heart of everything I am, and I do. It’s the most important thing you need to consider when you interact with me.

Living experience expert

The principle ‘living experience’ challenges you to interact meaningfully with each person in the present moment, which is shaped by everything up to and including that point. Intentional and deliberate use of the current tense (living vs lived) focuses your attention on the person in front of you.

It is easy to assume that all experience is equal, but of course it is not. Ignorance and assumptions are barriers to understanding living experience. It’s important not to rely on past information. Experience is unique for each person and should not be generalised. It also changes over time - it is real and current.

The living experience makes it real and when I have heard someone share their experience, I have never forgotten it.

Dementia Australia staff member

Dementia Australia’s Staff, Executive and Board:

• recognise and respect the power of hearing from living experience experts
• are not afraid to ask hard questions
• don’t make assumptions
• know that people’s experience is insightful: it reflects an accurate and deep understanding of the complex condition of dementia as well as their cultural, spiritual, personal and professional life.
   

To be truly inclusive, consider the multiple ways someone is either included or made to feel excluded. People aren’t their dementia; their diagnosis is one part of them. People aren’t just one ‘thing’. To truly be inclusive is to see the whole person as they are, not as they have been categorised.

If you want to include me - see me as the person that I am. The first letter of Inclusive is ‘I’.

Living experience expert

It is always one person you are talking to, not a group. If it’s multiple people, it’s a collection of individuals, each bringing their individual self to the interaction you are having with them.

When being inclusive of Aboriginal and Torres Strait Islander, LGBTI+ and culturally and linguistically diverse communities, it is important to seek guidance from ‘living experience’ experts to help you effectively, respectfully and safely engage.

When we consider being inclusive, it is important to understand that:

• people can have many diversity characteristics: for example, an Aboriginal person can also be LGBTI+
• people are more than their diversity characteristic: for example, a person from a culturally diverse background may first and foremost identify with their career as a pilot rather than their cultural background
• people have specific experiences that cannot be generalised within diverse groups: for example, people don’t live in ‘regional’ Australia, they live in their town or city.

Nothing changes unless we engage with all our stakeholders.

Dementia Australia staff member

Dementia Australia’s Staff, Executive and Board:

• prioritise making it easier for people living with dementia, their carers and families above what’s easiest for staff. We will meet people where they are, at their preferred times, places and ways
• are clear about the reason for engaging
• understand that ongoing research, consultation, and skill development is required to safely engage with people from diverse communities
• welcome and receive each person as equal
• ensure methods of engagement are accessible.

Collaboration is more than a collection of people coming together to work together.

Any collaboration has a direct impact on the lives of people living with dementia, their families and carers. It’s important to remember that tokenistic collaboration is transparent to those it affects.

Genuine collaboration is achieved when you both have strong feelings that you have equally contributed to the outcome.

Living experience expert

If you are ‘ticking a box’ by including someone in the collaboration process, it will be obvious. Collaborative effort should start at the beginning of any engagement, not at the end as the ‘final check’.

The person living with dementia, their families and carers will feel the result of that collaborative effort more than you. It’s important to ensure the collaboration has appropriate balance in the way it’s constructed and delivered. One of the best things about working collaboratively with people who bring different skillsets and backgrounds to the table is learning from their experience. Being collaborative means listening and acting, not just talking.

If a collaborative culture is embedded from the start and with living experience experts, then great things naturally and organically happen.

Dementia Australia staff member

Dementia Australia’s Staff, Executive and Board:

• continually build on their knowledge of co-design and co-production
• question from the start: ‘How is the voice of living experience being heard?’
• are committed to a culture that includes communication and transparency
• see people living with dementia, their families and carers as partners in their endeavours
• work together and communicate with each other and with people living with dementia, their families and carers for a greater outcome
• know that we do not always have the most accurate perspective; we understand that it takes many people, a variety of views, different types of expertise, lots of listening and working together to achieve collaborative outcomes
• value contribution and enjoy seeing others contribute with passion and joy, watch their confidence grow as they realise their contribution is valued.

True empowerment comes when people are part of decision-making.

Empowering people is not tokenistic. You shouldn’t feel like you are empowering people simply by involving them, although it starts with involvement.

Empowerment is about respecting me and hearing my voice; encourage me, listen to me, and always include me.

Living experience expert

Empowerment is when the person living with dementia, their family member or carer has a seat at the table: not just as a voice, but as a decision-maker.

To empower people means relinquishing some degree of control and being comfortable with people making their own decisions.
People are empowered when they are respected and treated as equals and can influence decisions that impact them. It is more than consultation.

Empowerment is when we demonstrate that we value and trust people to make their own decisions.

Dementia Australia staff member

Dementia Australia’s Staff, Executive and Board:

• value and trust people living with dementia, their families and carers as decision-makers
• highlight the skill, passion, and strength of people’s living experience
• focus on the strengths and abilities of people living with dementia, their families and carers
• support and encourage involvement in decision-making
• respect the decisions a person makes about their own life
• look for opportunities for people living with dementia to find and use their power.