By Stuart Warren, ARC KSS Living Well with Dementia Research Assistant
Stuart, an ARC KSS Living Well with Dementia Research Assistant shares his very personal story. He is currently working on the Co-Cog study, a feasibility study for adopting a smartphone-based app to improve the time people with dementia and their carers spend with their consultants.
Dementia is one of the cruellest diseases. It affects a person's cognition and their ability to recall and use information. Living with dementia is described as a slow, expectant loss where the person can lose their sense of self, their memories and their ability to recognise what and who is around them.
The hardest part is watching your loved one fade away. Sometimes, the loss of function is immediate and dramatic; sometimes, dementia progresses over a long period, and some are lucky to have no progression at all. There is still so much that we do not know about dementia, making the research we conduct even more valuable. My story about dementia and my reasons for researching dementia started years before I was born, and I would like to share my journey with you.
My grandmother was well into her forties when she had my mum and was already showing the behavioural and memory symptoms of dementia by the time my mum was an infant. My grandmother would pace, mutter the same words repetitively and forget to turn off the cooker. My grandfather was frustrated with the behavioural changes and decided to avoid home as much as possible.
As a preteen, my mum became my grandmother’s primary carer with little support from her father and no professional support. She was expected to feed, wash, dress, and care for her, protecting her from going out alone where she could get hurt or lost. My grandfather tried to put her into a care home, but she was adamant that she wanted to be at home and became exceptionally distressed when left alone. She remained in the family home to be cared for by my mum, and she passed shortly after falling down the stairs trying to get to the chip shop.
My mother has never been able to get over the guilt of not being there to go to the shop instead of her mother. She was thirteen.
This story is not as uncommon today as you would hope. The difficult decisions families face when trying to care for a loved one at home, when to ask for help, and even when to put their loved one into supported housing, need to be highlighted. Even though there have been improvements in care provision, there is still a massive gap between services. One of my driving factors for being in dementia research is to improve the quality of and access to these services.
Remembering my mother's stories of my grandmother has filled me with a great desire to work on bringing more support to those who have had a diagnosis, support the carers to be trained in how to work with their loved ones and support families to feel confident to ask for help during their time of need. Ensuring that appropriate professional care can be put into place - something that would have significantly supported my mum when she was a carer.
My first research project was with the University of Chichester to evaluate the Sage House project in Tangmere. Participating in the project was exceptionally eye-opening. Listening to the caregiver's stories reminded me of how similar they were to my mums and how much I wanted to improve the quality of service we offered those who still struggle with this illness. To, in some way, make it easier for those affected to get the support they need. The Sage House Model is an exceptional example of an integrated community care model that offers all dementia services for people with dementia, their carers, and the communities to which they belong. Presenting these results demonstrated that centres like Sage House could improve the quality of services we offer and even save the UK government £1.6 billion per year, which could be used to enhance further the care we provide.
My recent projects aim to improve our understanding of dementia and our services. I worked to support the DETERMIND project, which aimed to understand the post-diagnostic period of dementia by following caregivers and their person with dementia for the first five years after diagnosis. We researched their access to social care, the timeliness of their diagnosis, well-being and quality of life, and barriers to accessing effective care. My current project, the Co-Cog study, is a feasibility study for adopting a smartphone-based app to improve the time people with dementia and their carers spend with their consultants. I am producing a thematic analysis on the impact of a timely diagnosis, which should be available shortly after the new year.
These projects are part of our commitment to improving our services and supporting those with dementia and their caregivers. By understanding how to intervene effectively to provide the best services, we can identify which areas need improvement and what services we need to provide to facilitate. I am excited to be a part of these services and use the skills I’ve learned through studying to improve the quality of life for those who suffer from this condition the most. Hopefully, together, we can support those suffering from this condition when they need us the most and improve access to these services so that future generations do not have to suffer like my mum did.
For more information visit the Co-Cog study webpage here.
