Katey Twyford

TIDE Advisory Group Member

tide provides unique support to carers of people living with dementia. Tide’s informal networks were invaluable in helping me to manage the challenging aspects of supporting my dad who lived with dementia. They helped me to recognise my limitations and to continue enjoying being with him in the ‘here and now’.

I had worked in social care for all my adult life, focussed on improving the lives of older people, and especially those with dementia. When dad developed dementia I took a break from social care where I had been commissioning community care centres specialising in dementia support. I undertook a PhD focussed on whether supported or extra care housing is suitable for people living with dementia and their carers. None of that prepared me for the reality of being a care partner with my dad!

I initially became involved with tide as a trustee but withdrew from that role as dad needed more support from his family and close friends. As an enthusiastic advocate for making sure carers voices are heard I wanted to stay involved with tide so joined their advisory group (TAG). Thanks to tide I have been able to contribute to their Carer Development Programme, visit the House of Lords to lobby MP’s, shared a platform for the opening session of the Dementia UK Congress in 2024, and been involved in different University research programmes. Most important has been the peer support offered by other tide members though online coffee mornings and WhatsApp groups.

The emotional and physical demands of being a carer are immense – demands those closest to dad willingly took on. We each have our own pathway to follow when we support someone with dementia, but it is so much easier when there are other people to share experiences - both offering and receiving advice. I like to remember the phrase ‘less is more’ - sometimes the only advice from tide members is to ‘remember to take care of ourselves’. It’s surprising how just being recognised, acknowledged, and heard can make everything seem easier!