Members of the Dementia Carers Expert Reference Group

Photograph of Patricia O'DohertyPatricia Odoherty (Bolton). Having spent most of my working life in adult social care supporting vulnerable people in the community and residential settings. I spent the last twenty years caring and supporting people with Downs Syndrome, who have a very high risk of developing early onset Dementia and Alzheimer’s. In 2016 my husband was diagnosed with mixed cortical, sub cortical vascular dementia. Having spent a lot of time off work supporting my husband in his daily activities, I made the decision to retire from work, where I continue to support him on his journey with dementia. I am looking forward to being involved with DCERG, and hopefully making a difference to all those living with all types of dementia.

 

 

Photograph of Liz BrookesLiz Brookes (HMR – Rochdale). My professional background is also in nursing, having trained as both a psychiatric nurse and a general nurse. My first job upon qualifying was working with people with dementia. Fast forward several decades, and I have been caring full-time for my husband, who is living with vascular dementia and Alzheimer’s Disease. I joined TIDE several years ago and then became a member of the DCERG when it was formed in early 2019. Prior to that, I had already been involved with Dementia United in several of their work streams. I have also been a member of the Dementia Partnership in Rochdale. I have been involved in developing a specialist digital programme for people living with dementia at risk of delirium. Delirium continues to be a passion of mine, and I have contributed a carer’s perspective to the delirium programme in Dementia United. I now offer training to the domiciliary care company that looks after my husband.

 

Photograph of Ann BoothAnn Booth (Manchester). My professional background is in nursing, with most of my career spent working in a neuro-rehabilitation multidisciplinary team. After I retired, I worked in the voluntary sector teaching gardening skills to people with learning disabilities. We had great links between the voluntary sector organization and social care services. In 2014, I became a full-time carer for my aunt who had vascular dementia. I cared for her at home for the next three years until her death in 2018. It was hard work caring for someone 24/7. I was shocked at how fragmented services were and how little support was available to family carers, who are an invisible workforce rarely recognised. In 2019, through TIDE (Together In Dementia Everyday), I was encouraged to become part of the Dementia Carers Expert Reference Group with the Dementia United Team. We work with the Dementia United leads on most of their projects. I have been involved in the wellbeing plan, delirium, and palliative care projects. We are encouraged to be open and honest about the challenges we have faced in our caring roles, which enables us to raise the voice of family carers whose experiences are often not recognised by professionals. We are also given opportunities to work within our own localities to use our knowledge and experience to develop services in our own local area. I have recently been involved in the development of a new Dementia Strategy for Manchester. The Dementia United team is very supportive and values our input into the work programme. We are regarded as equals and valued as experts. The work is always interesting, sometimes frustrating, but mostly rewarding.

Photograph of Jagdish Brar-OrgillJagdish Brar-Orgill (Manchester). I gave up my career to care for and advocate for my dear Mum, who lived with Alzheimer’s and vascular dementia. Ensuring Mum remained safe in her own home despite fragmented services nearly broke me. I am now channelling my grief into raising awareness about the lack of dementia support within the dementia pathway for South Asian communities. It’s imperative that our lived experiences as carers are central to research and policymaking. Dementia doesn’t discriminate, but services often do. Culturally appropriate and inclusive representative voices are crucial. I am committed to effecting change and ensuring that the needs of diverse communities are met.

 

 

 

 

Photograph of Jeff SeneviratneJeff Seneviratne (Manchester). I was a carer for my wife, who was diagnosed with Alzheimer’s in 2014. She died in early 2020. I became a member of DCERG when it was set up following a meeting in February 2019. This involvement of “experts by experience” in the structure of Dementia United created the opportunity to influence its work and make a difference to people living with dementia (PLWD) and their carers. I am particularly interested in the provision of post-diagnostic support for PLWD and their carers. I have been able to contribute the “carer experience” to the work of several groups within Dementia United, including the Dementia Wellbeing Plan, Improving Quality of Diagnosis, Dementia Care Pathway, and Dementia Data Working Group. I have also been involved in the group discussing the need for system reform. I am a member of the Manchester Dementia Steering Group and Chair of Trustees of Together Dementia Support.

 

 

 

Photograph of Jenny HarrisJenny Harris (Manchester). I am delighted to be part of the DCERG group, as it is so important to me that carers’ voices are heard. My mum has Alzheimer’s and vascular dementia and lives in a care home. I am a freelance drama practitioner based in Manchester. I work on a project called Storybox, which is a creative dementia project for people living with dementia and their families/carers. This work is all about being in the moment and placing the participants at the heart of the activity. I am currently engaged as lead artist on the Care Aesthetics project at Manchester University, where we explore many facets of care. I am also involved with a spin-off piece of work called ‘Beautiful Care,’ where we collect stories from carers of moments of ‘beautiful’ care and turn them into a script to share back with their community. I have also created an exhibition of my photos, film, and writing called ‘Our Long Goodbye,’ exploring my mum’s journey with Alzheimer’s. This will tour venues in Greater Manchester in 2025-6.

 

Photograph of Kim HughesKim Hughes (Manchester). I am profoundly grateful for my professional experience in Adult Social Care and my DCERG membership. This experience enabled me to stay with, provide, and organise care for my parents, both of whom were living with dementia during the pandemic. My dad lived and died well at home, with a smile on his face, and my mum continued to be supported in her wish to remain at home. Her recent passing was peaceful, surrounded by family. Finding and providing care for loved ones is not easy, as every person’s dementia journey is different. The information, support, and learning opportunities available through Dementia United are invaluable. In turn, contributing my ‘lived experience’ to raise awareness and improve access to person-centred care within dementia-friendly communities is incredibly rewarding. I made small adjustments for clarity and flow while preserving the original tone and message.

 

Photograph of Paul SmithiesPaul Smithies (Oldham). I first became involved with dementia in 2012 when my wife was diagnosed. After attending a post-diagnostic information group, it became clear that there were no local resources or support available in Oldham. In response, four other couples in similar situations and I came together to form SPRINGBOARD Oldham Dementia Carers. We became a registered charity in 2014 and currently have 105 members who meet weekly. I am the Chairman and Trustee of SPRINGBOARD. I share my lived experience with various research organizations and have a voice on many working groups. Raising awareness and sharing lived experiences are among my passions, and I am pleased to be involved with Dementia United, assisting in bringing dementia and its associated needs to the forefront.

 

 

PPhotograph of Paul Carteraul Carter (Stockport). I was a carer for my wife, who has had frontotemporal dementia for 13 years. I have been a Director and Trustee for Age UK Stockport since 2011 and served 9 years as a Public Governor for Stockport on Pennine Care. I am a former Borough Councillor and Executive Member for Finance on SMBC. Previously, I worked as a Regional Director for BAE Systems based overseas in Southeast Asia.

 

 

 

 

Ruth Turner (Stockport). I work as a volunteer after nearly 30 years in the NHS, where I worked with all levels of service providers. I gained extensive knowledge about dementia through my experience as a carer for my husband, who was diagnosed with Early Onset Alzheimer’s Disease. I am the Chair of the Greater Manchester Dementia Carers Expert Group, working with Dementia United. In my role as Chair, I attend the Dementia United Strategic Board as a carer representative with lived experience, as well as the Locality Information Forum meetings.I have several areas of special interest and am part of multiple focus groups with Dementia United, where I contribute to compiling guidelines for people living with dementia and their carers. Additionally, I am a local representative for the Alzheimer’s Society and a member of three hospital steering groups—the Dementia Steering Group, the Frailty Group, and the End of Life Group—providing carer input to their work. I am also a member of the Healthwatch Steering Monitoring Group and the Lived Experience Panel. I am passionate about helping to improve services for people living with dementia and their carers. I attend groups to support both carers and those who have lost their loved ones to dementia. Additionally, I am qualified in holistic therapies and have used these skills to help those with dementia and their carers.

 

Photograph of Kellie LeatherbarrowKellie Leatherbarrow (Wigan). Dementia is something close to my heart both personally and professionally. I am a carer for my mum, who lives with vascular dementia, and my dad, who also lives with Alzheimer’s disease. Making a difference for individuals living with a dementia diagnosis and their carers means a great deal to me. Professionally, I first started working with people living with dementia in the community, providing care at various levels and supporting family members. I joined the NHS, working in mental health services for the elderly. Although this work could be heartbreaking at times, it was also very rewarding when you could see the improvements and progress made through person-centred care. Currently, I work within the NHS as an Operating Department Practitioner. I am a deputy team leader and a dementia champion. I am passionate about improving patient care, experience, and services. As a new member, I feel that being involved with DCERG is a privilege.