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your voiceyour rightsyour choice

Raising the voices of those living with dementia

17th May 2024

This week is Dementia Action Week which for 2024 brings the UK together to take action on improving dementia diagnosis rates. In a study led by King’s College London last year, it was found that people with dementia and their caregivers often faced multiple barriers to equitable health and social care, because of a lack of understanding within these services. The study suggested that the lived experiences of those with dementia were that their rights weren’t being respected or upheld.

‘Mum had a right for her voice to be heard and it wasn’t and she was ignored, totally’       A bereaved caregiver

At The Advocacy Project, our vision is a world in which every person has a voice, and our work across London helps people speak up and make decisions about their health, wellbeing and social care, across all ages and care groups. We do this in a number of ways, including our Healthwatch services in Brent, RBKC and Westminster.

Our Healthwatch Brent team has been working closely with the Community Action on Dementia team to make sure people with dementia and their carers have the opportunity to speak up. Over the past few months, we’ve been regular attendees of the dementia cafes collecting feedback about important topics such as access to adult and social care and experiences of hospital discharge. The cafes are a welcoming space where people can go to socialise and get support in accessing local services. By visiting and collecting feedback, our team hopes to make a meaningful change to how local services support people with dementia and those looking after them.

Alongside this, our Older People’s Voice project which runs consultations, speaking up groups and events for older people in Westminster, supports members to feed back to commissioners and service providers that plan and run services for older adults. One campaign has been against the communication barriers to equitable healthcare caused by digital exclusion. Members have raised the issue that ‘some older people are physically or mentally unable to use digital devices’ with dementia an impediment to following instructions.

Finally, our core advocacy work can help people with dementia (for those who have been deemed to lack capacity after a capacity assessment) by supporting them to understand information so they can make choices and feel in control of the decisions about their care. Advocates make sure that consideration is given to the provision of extra time to process information and the option to rephrase sentences where necessary to help with understanding. With such adjustments, individuals with dementia can be supported to arrive at their own decisions and maintain their sense of autonomy.

If you’d like to know more about this work, or any of our projects, please get in touch. We’d love to hear from you.