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Scent expert and carer Linda Harman shares her experiences of meeting the Dementia Alliance – a group of people living with dementia who are determined to prove what they CAN do, not what they can’t…

Last week I was lucky enough to be invited to the Alzheimer’s Disease International (ADI) Conference in Budapest. Aside from enjoying my first visit to this wonderful, friendly city, I was able to meet many of the very best academics researching dementia as well as the incredible members of the Dementia Alliance, a group of people diagnosed with early on-set dementia, who speak out on behalf of all people living with dementia.

It was an eye-opening experience for me. There is so much to learn about dementia – for all of us. It was impossible to hear all of the presentations, many ran simultaneously anyway. There is so much to say when experts from all over the world come together! Presentations covered every aspect of living with dementia, caring for people with dementia, research participation and developments, law affecting people with dementia, creating dementia friendly communities.…. My head is reeling with ideas and information!

The most humbling experience was meeting the Dementia Alliance. This group exists to campaign for involvement in the ground-swell of activity to accommodate dementia in society. They collectively talk about what it is like to live with a dementia diagnosis and lobby to ensure that their voices contribute to discussions about the topic under the slogan Nothing about us, without us.

As a dementia carer, I previously thought that I was very dementia aware and dementia-savvy. Listening to people with early on-set dementia has made me reevaluate this opinion of myself; no matter how aware we are as professional or family carers, it is so easy to patronise or reduce a person with dementia to a by-stander in life; making decisions without involving them, allowing our concern for safe-guarding to reduce their quality of life.

The Dementia Alliance campaign for inclusion has so many parallels with campaigns on human rights for the disabled, different races or sexual orientations – all of which have fought for the right to be heard and are now listened to. I hope that this happens soon for people living with dementia.

Let’s unite to position dementia as something that people live with, just like any other disability, and focus on what they can do rather than what they find difficult. Taking time to talk to and listen to people with dementia is one of the simplest and most effective ways to help them feel included, using prompts and communication aides where necessary. The effort is well worth the reward. I see it myself all the time.

Of course carers need support too, but our needs are different from those of the person living with dementia and our role as their advocate is to ensure that we support them to live as well as they are able, not take over their life until we absolutely have to. Early on-set dementia is, of course, different from end of life dementia but what Dementia Alliance members are able to do very effectively, is give us all insight into a huge range of experiences about which those of us caring for elderly relatives can only speculate.

Thanks to ADI and Dementia Alliance for the friendship and support: