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What is the financial impact of a diagnosis of young onset dementia on those diagnosed and on their families?

This questionnaire is for people who have experienced a financial impact following a diagnosis of young onset dementia.


We are a team of researchers from the University of Hertfordshire, and the joint faculty from Kingston University and St George’s University of London, looking at the financial impact of having a diagnosis of Young Onset Dementia (YOD). By young onset we mean people diagnosed with dementia before the age of 65. We know that their finances can be affected as not everyone can access a pension when they stop working, and not everyone has healthcare insurance. There is anecdotal evidence that some families have had to rely on friends to provide some financial support. We are undertaking this survey to find out more about what the financial impact of a diagnosis means for the individual and their families, how they cope, and which support options they might suggest.

We asked several organisations to send this survey to young onset support groups and would be very grateful if you would complete this questionnaire, but we would like to emphasise that you are under no obligation to do so.  You may want to answer some but not all the questions, which is fine. Please remember that there are no right or wrong answers.  All your answers will remain confidential.  We are not asking participants for their names and will not be able to trace the information provided to anyone. Data will be stored securely in locked filing cabinets and will be destroyed once the findings will have been disseminated.This study received Ethics Approval from the University of Hertfordshire. The Protocol Number is: HSK/SF/UH/03799.

If you have any questions about this survey, please don’t hesitate to contact me directly.  My contact details are provided at the end of the questionnaire.

Thank you for taking part.


1.1. Some people diagnosed with dementia will complete this questionnaire on their own. Others will have some assistance. Are you completing this questionnaire on your own?
2.2. If 'no', who is assisting you?
6.6. I am in the:
7.7. Gender:
9.9. Is English your first language?
11.11. How did the finanical impact arise? Please tick as many options as apply.
13.13. Has anyone else outside of your household been affected? (For example, an adult child living in their own household).
14.14. Have you taken any steps to discuss support?

If 'no', go to question number 20

If 'yes', please complete questions 15-19 below as applicable.  These questions ask about different types of support you might have enquired about.


15.15. Did you have a Financial Benefit Review?

If 'no', please go to question 16.

a.15.a. If 'yes', please indicate who completed the review:
16.16. Did you seek support in relation to medical costs that are not covered by the NHS?

If 'no', please go to question 17.

a.16.a. If 'yes', please indicate who you spoke to:
17.17. Did you enquire about support in relation to transport costs?

If 'no', please go to question 18.

a.17.a. If 'yes', please indicate who you spoke to:
18.18. Did you enquire about support to help with family expenses?

If 'no', please go to question 19.

a.18.a. If 'yes', please indicate who you spoke to:
19.19. Did you enquire about any other type of care or support (day care, respite...)?

If 'no', go to question 20.

a.19.a. If 'yes', who did you speak to?
22.22. Financial difficulties can result in low self-esteem and depression.  Is this something you (or a member of your family) experience(d)?