Real stories

From going viral on social media to campaigning in Parliament for social care reform

Trevor’s advocacy on behalf of his family and others living with dementia is boundless. Whether he is writing blogs or traveling to attend in-person political events, Trevor continues to share his and wife Yvonne’s story with powerful impact. 

An accidental road into activism

"I was like the many thousands of dementia carers quietly going about my role looking after my wife and trying to keep at least one step ahead of her regression when fate stepped in, in the form of social media. 

"My wife was working for Sainsbury’s when her dementia diagnosis came in late 2013. Rather than dismiss her they kept her employed for a further four-and-a-bit years, constantly adapting her role, reducing her responsibilities as well as her hours. 

"When she finally had to leave in early 2018, our son decided to tweet our family’s thanks to Sainsbury’s. His tweets went globally viral because the story was so unique and attracted much attention across all forms of media and dementia charities, including Alzheimer’s Society. The rest, as they say, is history".

Campaigning for social care reform

"In May 2021, alongside Alzheimer's Society CEO Kate Lee and ambassador Sir Tony Robinson, I launched the Dementia Action Week campaign outside Parliament. This gave me the opportunity to speak to members of the media to call for social care reform through the Cure the Care System campaign. 

"I have never been in awe of politicians or indeed anyone with grandiose roles or job titles. Instead, respect is at the heart of my approach and recognition that we are all human beings with souls and sensitivities that will surely be touched by the issues and challenges faced by those living with dementia and their carers.

"The wonderful professionals who work in the social care system are underpaid, poorly trained, and have no recognisable career path. The care crisis we currently face is only going to worsen based on forecasts that the number of people diagnosed with dementia will pass the 1 million mark by 2030.

If we can’t attract people into social care by introducing immediate employment reforms, then today’s crisis will inevitably become tomorrow’s catastrophe.

"In 2022, I gave evidence to reinforce this message to the All-Party Parliamentary Group on Dementia. They were conducting an inquiry into the social care workforce, and I spoke about my family’s experience with Yvonne’s dementia and the importance of finding the right care for her. I answered questions from the group’s co-chairs Debbie Abrahams MP and the late Baroness Sally Greengross. 

"Later that year in November, a report titled Workforce Matters was published as a result of the inquiry I contributed to. To mark the launch of the report, I was asked by Alzheimer’s Society to speak on a panel in Parliament alongside Baroness Browning and representatives from the social care sector.

"I took the opportunity to talk to the attendees about the sometimes-overwhelming pressures carers of people living with dementia face and what needs to be done to create change".

Support shouldn't come only once someone has reached a crisis point.

A clear call for change

"My message for change is really very simple. Family carers of those living with dementia are the true caring heroes of this dreadful disease. They receive no training for their role and minimal financial support and when their loved one eventually needs professional support in a care home, they face a true funding crisis. The Government cannot and must not continue to defer social care reform."

Receiving the Dementia Hero Award

"I was truly shocked and humbled to win the award. In accepting it, I did so really on behalf of everyone who uses their voice to raise awareness of dementia across society and especially those who tackle the cause at a political level, lobbying the people with the authority to legally affect a difference."

Throughout times of high emotion, whilst navigating asks from Society colleagues, Trevor has always been gracious and is a joy to work with. There is nobody more deserving of our 2023 Campaigns and Influencing Dementia Hero Award than Trevor.