Social care planning and provision for people with young onset dementia and their families: The DYNAMIC study

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Social care for people living with young onset dementia: The DYNAMIC study

Online Survey

This survey is designed to be completed by those who have a role in or an awareness of adult social care provision, planning, management or commissioning.

You are being invited to take part in a research study. In this study we aim to better understand social care planning and provision for people living with young-onset dementia (where the first symptoms occur under the age of 65). We will use this information to help us develop recommendations and resources for improving social care provision for people living with young-onset dementia.

You will need to complete a short survey which should take no more than 10 minutes. You will be asked about your experiences of social care planning and provision for people living with young-onset dementia. You will be asked some questions about your job role so that we can better understand who is involved in social care planning and provision. You will have the option of saving your responses so you can finish it later.

If you are interested in taking part, please download a copy of the participant information sheet here https://static.onlinesurveys.ac.uk/media/account/107/survey/1110443/question/dynamic_work-package_2_pis__on.pdf and retain this for your records before starting the survey.

If you have any questions, please email or call Helen at h.young@bradford.ac.uk or tel. 07584 368525. If you would prefer a paper or telephone version of the survey, then please contact Helen.

Taking part is entirely up to you. You are free to skip any question you do not want to answer.

1.1. Please provide your current job title(s)

2.2. How long have you been in your current job role(s)?

3.3. What type of service do you work within? (Please click all that apply)

Local Authority

Mental Health Trust

Primary Care

Third Sector Organisation (charity)

Hospital Trust

Integrated Care Board

Other

a.3.a. If you selected Other, please specify:

4.4. How has/does your job role/personal experience give you contact/involvement with people with dementia? (Please do not use abbreviations in your response.)

5.5. In which region of England do you predominantly work?

North East

North West

Yorkshire & The Humber

East Midlands

West Midlands

East of England

Greater London

South East

South West

6.6. Roughly how many people with dementia have you had contact with over the previous 3 months?

a.6.a. Roughly how many of these people had young onset dementia (where the first symptoms occur under the age of 65)?

This part of the survey uses a table of questions,

7.7. Do you refer people with young-onset dementia or their families for:

social care assessments
carer assessments
social prescription

a.7.a. Do you refer people with young-onset dementia or their families for anything else?

i.7.a.i. If yes, please specify below

8.8. Do you undertake or have you oversight of social care assessments, carer assessments or social prescription for people with young-onset dementia or their families?

9.9. Do you devise care plans or provide social care for people with young-onset dementia or their families, for example, related to finances, employment, children/family issues or other? (This could include having oversight of these aspects of social care.)

10.10. What types of situations trigger referrals for social care assessment for people with young-onset dementia or their families?

11.11. Where you work, is there an agreed care pathway for people living with young onset dementia and their families?

12.12. Where you work, do you have a written policy that gives guidance on how to work with people with young onset dementia and their families?

a.12.a. If yes, please can you expand on your answer

i.12.a.i. Do you feel these pathways are appropriate for people with young-onset dementia and their families?

13.13. How knowledgeable do you feel about social care planning and provision for people with young-onset dementia and their families?

14.14. How confident are you in your ability to undertake social care planning and provision for people with young-onset dementia and their families?

15.15. Can you describe below any examples of good practice in social care planning and provision in dementia that you would like to share? Or examples from other areas that could be relevant? (Please keep these anonymous)

16.16. Are you aware of any existing services/pathways that could be (or are already being) adapted for people with young-onset dementia? If so, please tell us about them.

17.17. How could access to social care for people with young-onset dementia be improved?

18.18. Is there anything else you want to tell us?

Some information about yourself:

19.19. What is your gender?

20.20. What is your age?

21.21. What is your ethnicity?

22.22. Do you consider that you work in an urban or rural location?

23.23. Have you ever undertaken any training/education about working with people with dementia?

24.24. Do you access resources relating to young-onset dementia?

25.25. We may be asking some people to take part in follow-up research for this or future studies. Would you be happy to be invited to take part in more research? Note that even if you say “yes” there will be no obligation to take part in the future. Required

26.26. Would you be interested in hearing about the findings of the study?

If you have answered YES to either of the previous two questions and would be happy to be contacted by the researcher for these purpose(s), please provide relevant contact details here:

27.27. Name

a.27.a. Address

b.27.b. Telephone number (optional)

c.27.c. Email address (optional)

28.28. Do you consent to the information you give being used to support other research in the future, so being shared anonymously with other researchers? Required

By clicking the ‘Submit’ button below, you are consenting to take part in this study, as described in the participant information sheet, which you can download here https://static.onlinesurveys.ac.uk/media/account/107/survey/1110443/question/dynamic_work-package_2_pis__on.pdf. If you did not yet download and keep a copy of this document for your records, we recommend you do that now.