please see news on my dementia carer voice project based on the Tommyontour campaign
The ALLIANCE is pleased to announce that Dementia Carer Voices will be the subject of a Members Business debate on the 20th of March.
Just after 5 pm next Wednesday, Members of the Scottish Parliament will debate Jackie Baillie MSP’s parliamentary motion which highlights the role played by those who care for the estimated 86,000 people in Scotland living with dementia, the challenges they face and the importance of supporting them by raising awareness of dementia and the carer journey. The motion welcomes the ALLIANCE’s Dementia Carer Voices project for giving a platform to the views and experiences of carers of people with dementia across Scotland
The Dementia Carer Voices project team have produced a briefing and will be available in the Garden Lobby from 2-2:30pm, to meet with MSPs and discuss the work of the project.
The debate can be watched on the Scottish Parliament’s ‘Parliament TV’ section of its website-http://www.scottish.parliament.uk/newsandmediacentre/3168.aspx
Motion S4M-05522: Jackie Baillie, Dumbarton, Scottish Labour, Date Lodged: 30/01/2013
Dementia Carers’ Voices
That the Parliament understands that there are currently 84,000 people in Scotland living with dementia*, a figure that is expected to double over the next 25 years; acknowledges that caring for someone with dementia can be a difficult experience; values the contribution made by families and carers of people with dementia in the Dumbarton constituency and across Scotland who, on a daily basis, provide support to loved ones with the illness; recognises the importance of carer support and respite where appropriate; notes the importance of raising awareness of dementia and ensuring that people with dementia are treated with dignity and respect, and welcomes the work of a number of key stakeholders and organisations who give a platform to the views and experiences of carers of people with dementia across Scotland including the Health and Social Care Alliance's Dementia Carer Voices Project and Alzheimer Scotland's National Dementia Carers Action Network.
*The most recent statistics now put this figure at 86,000.
Dementia Carer Voices
Dementia Carer Voices, managed by the ALLIANCE, is a two year project funded by the Scottish Government which harnesses the work of Tommy Whitelaw and recognizes the importance of the carer voice, in informing future service provision and in empowering carers themselves.
In June 2011, as part of his ‘Tommy on Tour’ campaign, Tommy Whitelaw, a carer for his late Mum Joan, walked around Scotland’s towns and cities to raise awareness of the impact of dementia on families and the difficult but vital role played by carers. Since then, he has engaged with thousands of carers through twitter, his blog and frequent talks to health and social care professionals and carers organisations across Scotland, allowing him to collect hundreds of life stories from people which detail their experiences of caring for a loved one living with dementia. The letters demonstrate that carers of people with dementia often feel isolated and that there is insufficient recognition of the range of complex issues about which they are expected to have understanding, from legal to financial, to health and housing, as well as, cope with the distressing, social and emotional demands of caring.
As Project Officer with Dementia Carer Voices. Tommy continues to collect letters and stories and build on that work. The project aims to –
Capture the experiences of carers across Scotland with a view to informing future policy and service provision;
Empower carers by providing information based on the Charter of Rights and Carer Strategy about caring for someone with dementia;
Highlight the role of carers as natural resources; carers as people with needs;
Work with other carer organisations and key stakeholders to ensure that relevant strategies are well informed by the views of service users.
Establish a greater understanding of dementia and the carer journey among health and social care professionals;
Highlight the importance of family carers being enabled after diagnosis to build and sustain a network of support, preventing crisis situations and enabling carers to ask for additional help when it is needed;
Reduce isolation of carers of people with dementia;
Increase awareness of carer rights;
Gather information supporting family and person centred approaches to health and social care.
The project will achieve this through visits and talks by the Project Officer Tommy Whitelaw to Carer Organisations; the provision of written materials with key carer messages; dissemination of information including through social media; and films to raise awareness/understanding. A Dementia Carer Voices survey is presently in operation via the ALLIANCE website to collect key carer information which will be captured and published to raise further awareness of issues of importance to carers. Evaluation feedback from talks to carer organisations is also available on the web and indicates high levels of satisfaction particularly from health and social care students about hearing the carer voice first hand.