Dementia Action Alliance survey for carers and professionals

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1 Dementia Action Alliance survey for carers and professionals Are we making any progress? To mark the fourth year of the National Dementia Declaration, the Dementia Action Alliance (DAA) is conducting a survey to find out how we are doing to improve the lives of people with dementia and those that care for them. The survey will provide a snapshot of progress to date and can be completed in minutes depending on how long you spend on each question. If you have professional or personal interest in the National Dementia Strategy (NDS), you will be asked to rate progress against the outcomes of the NDS launched in 2009, which map across to the statements in the National Dementia Declaration. The successor to the strategy, the Prime Minister s Challenge on Dementia, is still in operation so we have gone back to the original objectives to chart progress over the last five years. The results will be broken down by postcode areas to inform the work programmes of the national and local Dementia Action Alliances. The closing date is 9am on Monday 8th September. Thank you for taking the time to provide us with this information. We would also like to thank everyone who has helped to design and develop this survey. This includes the Association for Dementia Studies at the University of Worcester for creating the survey and a number of DAA members for providing feedback.

2 About you To help with our work it would be useful to find out some brief information about you, so we would be grateful if you could fill in the following details. 1. Please select the option that best applies to you: I am a carer completing this survey from my own perspective I am a professional whose job involves providing direct care and support for people with dementia e.g. frontline staff I am a professional whose job involves providing services for people with dementia e.g. management Other If 'other', please specify 2. If you are a carer, how old was the person you care/cared for when they received their diagnosis of dementia? Younger than or older 3. If you are a professional, please state your job role: 4. If you are a professional, please state the name of your organisation:. Please indicate where you are based (Select more than one response if necessary) rth East rth West Yorkshire and the Humber East Midlands West Midlands London South East South West. Please provide the postcode of where you are based

3 7. Are you a member of the Dementia Action Alliance? Don't know 8. I feel able to comment on activity related to the National Dementia Strategy in the following area/s: England as a whole rth East rth West Yorkshire and the Humber East Midlands West Midlands London South East South West I do not feel able to comment on the National Dementia Strategy (please go to final page of survey)

4 The National Dementia Strategy Objectives (1 of 17) The following questions relate to objectives 1 of the National Dementia Strategy. Objective 1: Improving public and professional awareness and understanding of dementia. Public and professional awareness and understanding of dementia to be improved and the stigma associated with it addressed. This should inform individuals of the benefits of timely diagnosis and care, promote the prevention of dementia, and reduce social exclusion and discrimination. It should encourage behaviour change in terms of appropriate help seeking and help provision. Objective 2: Good quality early diagnosis and intervention for all. All people with dementia to have access to a pathway of care that delivers: a rapid and competent specialist assessment; an accurate diagnosis, sensitively communicated to the person with dementia and their carers; and treatment, care and support provided following diagnosis. The system needs to have the capacity to see all new cases of dementia in the area. Objective 3: Good quality information for those with diagnosed dementia and their carers. Providing people with dementia and their carers with good quality information on the illness and on the services available, both at diagnosis and throughout the course of their care. Objective 4: Enabling easy access to care, support and advice following diagnosis. A dementia adviser to facilitate easy access to appropriate care, support and advice for those diagnosed with dementia and their carers. Objective : Development of structured peer support and learning networks. The establishment and maintenance of such networks will provide direct local peer support for people with dementia and their carers. It will also enable people with dementia and their carers to take an active role in the development and prioritisation of local services. 9. How much progress do you think there has been since 2009 in relation to objectives 1? progress Little progress Some progress Lots of progress Don't know Objective 1 Objective 2 Objective 3 Objective 4 Objective

5 10. Do you think the objectives were suitable to include in the 2009 strategy? Objective 1 Objective 2 Objective 3 Objective 4 Objective 11. Do you think the objectives should be included in any future strategy? Objective 1 Objective 2 Objective 3 Objective 4 Objective 12. Please add any comments or examples relating to objectives 1 in the box below:

6 The National Dementia Strategy Objectives ( 10 of 17) The following questions relate to objectives 10 of the National Dementia Strategy. Objective : Improved community personal support services. Provision of an appropriate range of services to support people with dementia living at home and their carers. Access to flexible and reliable services, ranging from early intervention to specialist home care services, which are responsive to the personal needs and preferences of each individual and take account of their broader family circumstances. Accessible to people living alone or with carers, and people who pay for their care privately, through personal budgets or through local authority arranged services. Objective 7: Implementing the Carers' Strategy. Family carers are the most important resource available for people with dementia. Active work is needed to ensure that the provisions of the Carers' Strategy are available for carers of people with dementia. Carers have the right to an assessment of their needs and can be supported through an agreed plan to support the important role they play in the care of the person with dementia. This will include good quality, personalised breaks. Action should also be taken to strengthen support for children who are in caring roles, ensuring that their particular needs as children are protected. Objective 8: Improved quality of care for people with dementia in general hospitals. Identifying leadership for dementia in general hospitals, defining the care pathway for dementia there and the commissioning of specialist liaison older people's mental health teams to work in general hospitals. Objective 9: Improved intermediate care for people with dementia. Intermediate care which is accessible to people with dementia and which meets their needs. Objective 10: Considering the potential for housing support, housing related services and telecare to support people with dementia and their carers. The needs of people with dementia and their carers should be included in the development of housing options, assistive technology and telecare. As evidence emerges, commissioners should consider the provision of options to prolong independent living and delay reliance on more intensive services.

7 13. How much progress do you think there has been since 2009 in relation to objectives 10? progress Little progress Some progress Lots of progress Don't know Objective Objective 7 Objective 8 Objective 9 Objective Do you think the objectives were suitable to include in the 2009 strategy? Objective Objective 7 Objective 8 Objective 9 Objective Do you think the objectives should be included in any future strategy? Objective Objective 7 Objective 8 Objective 9 Objective Please add any comments or examples relating to objectives 10 in the box below:

8 The National Dementia Strategy Objectives (11 1 of 17) The following questions relate to objectives 11 1 of the National Dementia Strategy. Objective 11: Living well with dementia in care homes. Improved quality of care for people with dementia in care homes by the development of explicit leadership for dementia within care homes, defining the care pathway there, the commissioning of specialist in reach services from community mental health teams, and through inspection regimes. Objective 12: Improved end of life care for people with dementia. People with dementia and their carers to be involved in planning end of life care which recognises the principles outlined in the Department of Health End of Life Care Strategy. Local work on the End of Life Care Strategy to consider dementia. Objective 13: An informed and effective workforce for people with dementia. Health and social care staff involved in the care of people who may have dementia to have the necessary skills to provide the best quality of care in the roles and settings where they work. To be achieved by effective basic training and continuous professional and vocational development in dementia. Objective 14: A joint commissioning strategy for dementia. Local commissioning and planning mechanisms to be established to determine the services needed for people with dementia and their carers, and how best to meet these needs. These commissioning plans should be informed by the World Class Commissioning guidance for dementia developed to support this Strategy. Objective 1: Improved assessment and regulation of health and care services and of how systems are working for people with dementia and their carers. Inspection regimes for care homes and other services that better assure the quality of dementia care provided. 17. How much progress do you think there has been since 2009 in relation to objectives 11 1? progress Little progress Some progress Lots of progress Don't know Objective 11 Objective 12 Objective 13 Objective 14 Objective 1

9 18. Do you think the objectives were suitable to include in the 2009 strategy? Objective 11 Objective 12 Objective 13 Objective 14 Objective Do you think the objectives should be included in any future strategy? Objective 11 Objective 12 Objective 13 Objective 14 Objective Please add any comments or examples relating to objectives 11 1 in the box below:

10 The National Dementia Strategy Objectives The following questions relate to objectives 1 17 of the National Dementia Strategy. Objective 1: A clear picture of research evidence and needs. Evidence to be available on the existing research base on dementia in the UK and gaps that need to be filled. Objective 17: Effective national and regional support for implementation of the Strategy. Appropriate national and regional support to be available to advise and assist local implementation of the Strategy. Good quality information to be available on the development of dementia services, including information from evaluations and demonstrator sites. 21. How much progress do you think there has been since 2009 in relation to objectives 1 17? progress Little progress Some progress Lots of progress Don't know Objective 1 Objective Do you think the objectives were suitable to include in the 2009 strategy? Objective 1 Objective Do you think the objectives should be included in any future strategy? Objective 1 Objective Please add any comments or examples relating to objectives 1 17 in the box below:

11 National Dementia Declaration 'I' statements 2. Over the last four years, on which 'I' statements from the National Dementia Declaration have we made most progress? progress Little progress Some progress Lots of progress Don't know I have personal choice and control or influence over decisions about me I know that services are designed around me and my needs I have support that helps me live my life I have the knowledge and know how to get what I need I live in an enabling and supportive environment where I feel valued and understood I have a sense of belonging and of being a valued part of family, community and civic life I know there is research going on which delivers a better life for me now and hope for the future

12 Future national strategies on dementia This page aims to capture your thoughts regarding any future national strategy relating to dementia. 2. What do you think should be the priorities for any future national strategies on dementia? (Please select any that apply) Support for people with young onset dementia Dementia friendly communities Support for carers Support for people with dementia and co morbidities Support that takes into account diversity, e.g. culture, disability and sexuality Increasing diagnosis rates Post diagnostic support Other (please state): 27. Please provide details of any ideas or interventions that would make a big difference, which could be included in any future national strategies on dementia. (Please include web links or examples where possible) 28. What do you think should happen in the future in terms of a national strategy on dementia? The existing strategy should be continued in the same format The strategy should be continued but with new or modified objectives A new strategy needs to be developed There is no need for a national strategy on dementia in the future Other (please state): 29. Please complete the following sentence: In my view, the best thing the National Dementia Strategy has achieved is...

13 30. Do you think that the National Dementia Strategy got it right overall? Don't know For people with dementia For carers

14 Thank you Thank you for taking the time to complete this survey, your input is much appreciated. The results will be announced at the DAA annual event in the winter, and the findings will be used to inform the future work of the DAA and any successor to the National Dementia Strategy. If you would like to be kept informed of the findings and any DAA work, please provide your address below. 31. What is your address?

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