Agnes Houston, MBE, Dementia Campaigner

 Agnes Houston

Agnes Houston

Having been diagnosed with Alzheimer’s Disease in 2006, Agnes Houston was driven to push for better information and resources for people experiencing dementias and sensory challenges. She has occupied many high-level policy and advisory roles through which she has campaigned for improved dementia care and now sits on the Board of Dementia Alliance International. In 2015 she was awarded an MBE for her work in the field.

Please tell us about some of the work you have done to support, improve and contribute to the lives of, people with dementias?

I campaign for better information and resources for people living with dementia and experiencing other sensory challenges at a local, national and international level. This has enabled me to meet thousands of wonderful people living with dementia. 

I am a former chair of the Scottish Dementia Working Group, founding member and past vice-president of the the European Dementia Working Group, member of the Dementia Engagement and Empowerment Group and the Scottish Dementia Alumni. I do reports for Dementia Diaries and sit on many advisory groups.

In 2013 I was awarded a lifetime achievement award from Alzheimer's Scotland. In 2015 I published a peer-to-peer information booklet ‘Dementia and Sensory Challenges’ and was awarded an MBE for my work in the field of dementia. In 2016 I was awarded a Churchill Fellowship which enabled me to travel to Canada and Ireland to seek out examples of best practice relating to sensory challenges and dementia.

What was your motivation for getting involved in the field of dementia? 

I was diagnosed with a dementia - Alzheimer's Disease - in 2006. Soon after my diagnosis I found that I was experiencing sensory challenges. It began with visual disturbances but soon affected my sense of taste, smell and hearing too.

None of the literature or professionals mentioned these sensory challenges. I soon realised that there was very little information or support for this. These experiences have shaped my work over the past twelve years. 

What would you say has been your greatest achievement or highlight?

I am especially proud to be a board member for Dementia Alliance International. Through these platforms, I can campaign for better dementia care, particularly within the area of sensory challenges.

What’s next?

Over the last year I have been working on implementing my recommendations in partnership with other organisations.

I am currently working with Hammond Care on an information booklet that shares peoples’ experiences and practical tips to overcome challenges with sense of taste and smell, and also planning a partnership with the University of Edinburgh. 

If you could change one thing now to improve the lives of people living with dementia, what would it be? 

My hope is that there will be more information, alongside better support and advice that reflects the real experiences of those living with dementia. We can live exciting, fulfilling lives on our own terms if we have the right kind of support around us.

Follow my journey here