Dementia Action Alliance survey for people with dementia 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 10 30 minutes depending on how long you spend on each question. If you are a person affected by dementia (either as a carer acting as a proxy, or as someone with a diagnosis or is worried about their memory) you will be asked a series of statements about how well you are living with the condition. Simply tell us whether the statements apply to you. 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.
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 person with a diagnosis of dementia I am worried about my memory but do not have a diagnosis of dementia I am a carer/professional completing this survey on behalf of a person with dementia Other If 'other', please specify 5 6
A bit about you 2. How old were you when you received your diagnosis of dementia? Younger than 65 65 or older No diagnosis / Not applicable 3. How long have you had your diagnosis? Less than 6 months Between 6 months and 2 years Between 2 and 5 years Longer than 5 years No diagnosis / Not applicable 4. Where do you live? North East North West Yorkshire and the Humber East Midlands West Midlands London South East South West 5. Please provide the postcode of where you live 5 6
National Dementia Declaration Outcomes The National Dementia Declaration contains a set of seven target outcomes for people with dementia and their family carers. We would like you to consider each of the outcomes and provide feedback on them. 6. Please give your opinion on the seven outcomes from the National Dementia Declaration and how they apply to you: Dis 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 7. What is the most important thing that your local community could do to help you live well with dementia? 5 6
National Dementia Declaration Statements Outcome 1 Each of the seven National Dementia Declaration outcomes has a number of specific statements linked to them. Please consider each of the statements and provide feedback on them if you want to. 8. Please give your opinion on the statements relating to Outcome 1 from the National Dis I have control over my life and support to do the things that matter to me I have received an early diagnosis which was sensitively communicated I have access to adequate resources (private and public) that enable me to choose where and how I live I can make decisions now about the care I want in my later life I will die free from pain, fear and with dignity, cared for by people who are trained and supported in high quality palliative care
Statements for Outcome 2 9. Please give your opinion on the statements relating to Outcome 2 from the National Dis I feel supported and understood by my GP and get a physical checkup regularly without asking for it There are a range of services that support me with any aspect of daily living and enable me to stay at home and in my community, enjoying the best quality of life for as long as possible I am treated with dignity and respect whenever I need support from services I only go to hospital when I need to and when I get there staff understand how I can receive the best treatment so that I can leave as soon as possible Care home staff understand a lot about me and my disability and know what helps me cope and enjoy the best quality of liife every day My carer can access respite care if and when they want it, along with other services that can help support them in their role
Statements for Outcome 3 10. Please give your opinion on the statements relating to Outcome 3 from the National Dis I can choose what support suits me best, so that I don't feel a burden I can access a wide range of options and opportunities for support that suit me and my needs I know how to get this support and I am confident it will help me I have information and support and I can have fun with a network of others, including people in a similar position to me My carer also has their own support network that suits their own needs
Statements for Outcome 4 11. Please give your opinion on the statements relating to Outcome 4 from the National Dis It's not a problem getting information and advice, including information about the range of benefits I can access to help me afford and cope with living at home I know where I can get the information I need when I need it, and I can digest and re digest it in a way that suits me I have enough information and advice to make decisions about managing, now and in the future, as my dementia progresses My carer has access to further information relevant to them, and understands which benefits they are also entitled to
Statements for Outcome 5 12. Please give your opinion on the statements relating to Outcome 5 from the National Dis I had a diagnosis very early on and, if I work, an understanding employer which means I can still work and stay connected to people in my life I am making a contribution which makes me feel valued and valuable My neighbours, friends, family and GP keep in touch and are pleased to see me I am listened to and have my views considered, from the point I was first worried about my memory The importance of helping me to sustain relationships with others is well recognised If I develop behaviour that challenges others, people will take time to understand why I am acting in this way and help me to try and avoid it My carer's role is respected and supported. They also feel valued and valuable, and neither of us feel alone
Statements for Outcome 6 13. Please give your opinion on the statements relating to Outcome 6 from the National Dis I feel safe and supported in my home and in my community, which includes shops and pubs, sporting and cultural opportunities I my family feel ashamed or discriminated against because I have dementia. People with whom we come into contact are helpful and supportive My carer and I continue to have the opportunity to develop new interests and new social networks It is easy for me to continue to live in my own home and I and my carer will both have the support needed for me to do this
Statements for Outcome 7 14. Please give your opinion on the statements relating to Outcome 7 from the National Dis I regularly read and hear about new developments in research I am confident that there is an increasing investment in dementia research in the UK I understand the growing evidence about prevention and risk reduction of dementia 15. Are there any comments you would like to make about any of the National Dementia Declaration outcomes or statements? 5 6
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 email address below. 16. What is your email address? 5 6