Kirstie MacLean Kalonji, Sector Engagement Policy Manager, shares how people affected by dementia are influencing vital change.
In the four years I’ve been at Alzheimer’s Society, my focus has been on helping to make a real difference to people affected by dementia in their everyday lives.
Getting their concerns heard by organisations across all sectors is a vital part of this.
Transport is a particular priority at the moment, but there are so many other aspects of life that we’ve been working on too.
Making sure that people can still get face-to-face and telephone support as more services move online is an increasingly important area for us.
Working closely with our Dementia Voice team means I can gather viewpoints from a range of people living with dementia, their families and carers.
This highlights the challenges that people face in real life, so we can help different sectors understand what they need to do to have a positive impact.
Many people have had negative experiences on public transport because of a lack of understanding about dementia from other passengers or staff. People affected by dementia have made it clear to us that COVID-19 has only increased their concerns.
We’re supporting the relaunch of the Department for Transport’s ‘It’s Everyone’s Journey’ campaign. This promotes positive behaviour on public transport, including being patient and ready to help your fellow passengers.
People affected by dementia have reminded us that – whether there’s a pandemic or not – how we choose to behave and treat others is a priority. This is especially true when people are often rushing about, intent on getting to their destination!
We’ve also worked on new guidance for bus and train staff. This highlights many important points, such as understanding that not all disabilities are visible and that many people will need them to communicate slowly and clearly.
Not all online
So many activities and services had to go online due to coronavirus, and this was incredibly helpful for many of us.
However, some people aren’t able to take advantage of online options, and many who’ve had to do so would much prefer returning to in-person contact in future. There’s a similar situation for people who want to continue using cash for purchases instead of cards or online payments.
When Transport for London stopped accepting cash in 70% of its stations during the pandemic, we used feedback from people affected by dementia to convince them to reverse this.
They also dropped plans to make all stations permanently cashless.
We hope for similar successes as we keep sharing people’s insights about the need for ‘offline’ options. This includes ways for people to keep their homes warm, and many other areas.
Do you have first-hand experience of dementia? Help shape our work through Dementia Voice, and use your experience to ensure everything we do reflects the needs of people affected by dementia.