Dementia Carer voices 2 year project with the ALLIANCE with funding from the Scottish Government

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.

Outcomes

§  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 centered 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.