Urgent Call to Action for Carers of People with Dementia

1. Carers Call To ActionCarers of people with dementiaThe urgent need for changeupdate June 19th 2013

2. Why – re-cap • There are 800,000 people with dementia • Recent figures suggest family carers save the economy £119 billion every year • 3 out of 5 of us will be a carer at some point • Last week was carers week – but every day is carers day 24/7 365 days I have come to believe that caring for myself is not self indulgent. caring for myself is an act of survival Audre Lorde

3. We are now talking about: • Family/partners etc should be included in the assessment process • Timely diagnosis has most benefit if support and resources are available. • There is currently a ‘Care (and support) vacuum from diagnosis to crisis’

4. The needs of carers recognised • ‘There is not enough emphasis on support’ – Dr Martin Brunet • Care and support is an essential part of the diagnosis process and afterwards – Dr Chris Dyer

5. Our Shared Vision Our Shared Vision is of an England and Wales where the health and wellbeing of carer of a person with dementia are of equal priority to those of the person for whom they care

6. We will know this has been achieved when: Carers of people with dementia are confident that their own health & wellbeing needs and requirements are recognised and supported, so that no carer feels alone, and are given regular breaks in order to avoid carer breakdown Carers of people with dementia are recognised as essential partners in care Carers of people with dementia have access to expertise in dementia care for personalised information, advice, support and co-ordination of care Carers’ assessments identify the on-going and changing support needs of the carer to maintain their health and well-being, make arrangements to meet these needs, and thereby value the support carers provide to enable the person with dementia to live well Carers of people with dementia are able to access good quality care and support services that are flexible, appropriate, timely and provided by skilled staff for both the carer and the person for whom they care

7. Our First Step The health and wellbeing of carers is central to our vision – this drives our first action as we aim to gain a commitment from 152 Health and Wellbeing Boards • By the end of March 2014 we will have secured the commitment of Health and Wellbeing Boards of England to Our Shared Vision

8. To Take This Forward.... We are exploring working with/alongside initiatives such as: • The Triangle of Care • Dementia Information Prescriptions • Social Prescriptions

9. Organisations who have, so far, contributed to developing a shared vision, narrative and goals.... • Alzheimer’s Society • Carers Trust • Crawley Dementia Alliance • Dementia UK • Department of Health • Family carers • Guidepost Trust/Dementia Web • Local Government Association • Stuart Hill – Independent Consultant • Nutricia • PayingForCare • RCN • SCIE • Secretariat, DAA • Uniting Carers

10. What next..... • Please contact us now at:dementiaactionalliance@alzheimers.org.uk If: • You would like to or can help us signup all Health & Wellbeing Boards of England and Wales to Our Shared Vision • You would like to work with us to develop the next phase of our Carers Call to Action • You can or would like to help us in another way to achieve Our Shared Vision to improve the experience of Carers of People with dementia