Improving end of life care for people living with dementia
For years after my aunt was diagnosed with dementia she and my family struggled to access adequate care.
That continued up until the day she died.
We never forget how our loved ones were cared for in their final days.
A bad experience never leaves us.
For people affected by dementia, they are far more likely to experience poor end of life care.
End of life
Although dementia is a terminal condition, and the UK’s biggest killer, people living with the condition often struggle to access end of life care*.
Most die in care homes or hospitals, which may not be their preferred place to die.
Many experience a high level of symptoms, such as pain or anxiety. Some people are unable to communicate their symptoms and wishes at end of life, which can affect how their care is managed.
Reducing the inequalities faced by people living with dementia and improving the palliative and end of life care experience must be prioritised.
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Joint call for research
Alzheimer’s Society and Marie Curie have partnered to make available ￡1 million for new research to achieve a better end of life experience for people living with dementia and those who care for them.
We’ve issued a joint research call looking for a team or teams which can provide the evidence needed to change existing policy or practices for the better.
Research commissioned from Carnall Farrar by Alzheimer’s Society estimates that almost 1million people are living with dementia and by 2040 this number will swell to 1.4million.
Everyone deserves access to compassionate high-quality care which is tailored to their individual physical, emotional and spiritual needs.
They should also, wherever possible, be involved in the decisions made about their care.
Part of the problem is that more than a third of people living with dementia in England and Northern Ireland and around half in Wales do not get a diagnosis, which affects their ability to access care and to plan for their future care.
These barriers and others which prevent people with dementia and their carers from accessing good end of life care must be broken down.
Find out more about the research call
The call is open to expressions of interest (EOIs) until July 30, 2024. Successful applicants will be invited to submit a full application.
A webinar will be held on June 11th. Registration and full details of the call can be found here: https://www.mariecurie.org.uk/research/information-researchers/marie-curie-research-grants-scheme
*From Diagnosis to End of Life Care, Alzheimer’s Society, 2020.
#eolc #palliativecare #dementia #dementiaresearch
Director at SylvianCare Woking & VoVo Training Academy - I assist families in organising exceptional care for their loved ones in Woking and Elmbridge.
1 个月Great news Richard. It's vital we continue to improve care and support throughout the entire journey, especially at the end of life. Well done to Alzheimer’s Society and Marie Curie UK for investing in such important research.
Personal Assistant at Pauline Kerr Care at Home
8 个月This is absolutely fantastic news Richard. I decided a few years ago to go self employed as a carer so I could provide care at home to people suffering from Alzhiemer's and Dementia. This allows them to remain in familiar surroundings. I get so much joy out of spending time with all my clients and I am with them right to the very end providing palliative care. The families I have worked with find they have less stress with having someone in the house with them 24/7
Student at University of Sunderland
9 个月Hi everyone! I am currently studying for my master’s degree in Inequality and Society at The University of Sunderland. For my dissertation I am researching if there are any disparities of care and support offered to a person living with dementia (PLWD) in the prison system as opposed to a PLWD in the community. As legislation dictates equivalence of care is a fundamental standard of prison health care. I would really appreciate if you had a few minutes to spare to complete this short survey: The survey will only take a few minutes to complete, and you are welcome to write as much or as little as you would like. The survey is completely anonymous and confidential. Thank You very much for your help. If you are interested and would like to take part, please access the QR code or the anonymised link below which will take you direct to the Qualtrics https://sunduni.eu.qualtrics.com/jfe/form/SV_8w6I6qi9Su9g9ca Best Wishes Sarah Student at Sunderland University studying Inequality and Society. Student number:bi32dn Social Media message_ version 3_12/06/2024/Ethics Application 026075
Raised over ￡258,092 for Charity. Passionate about supporting people living with Dementia?? Follow your hopes & dreams and you can succeed. Give your time to those less fortunate ??
9 个月This is good to hear. The work I’ve been part of with Manchester Dementia Alliance has been inviting people living with dementia and carers with lived experience to share what it’s like to live with dementia. We heard from peoples journey from diagnosis to end of life. Our findings highlighted the lack of support for people at the end of life. Not all Pallative services have vital awareness and understanding to support families and fulfil a persons wishes to die where they requested. Conversation early in a persons journey is vital, including LPA, wishes and wills. Hope the work can help people in the future to get the dignified care they truly deserve ????. Good luck a great piece of work.