#TFx8.0#U:\...\DECIDE1.SAV
Participant ID
Date of completion
T1_S1_A1 I have to overcome a lot of ‘red tape’ when sorting things out for the person I care for
T1_S1_A2 I find it hard to switch off from my caring responsibilities
T1_S1_A3 I worry about what people think of the behaviour of the person I care for
T1_S1_A4 Most people around me recognise what I do as a carer
T1_S1_A5 It is hard to decide what to tell others about the person’s dementia
T1_S1_A6 I can't travel far in case a crisis arises with the person I care for
T1_S1_A7 I ignore my own health needs
T1_S1_A8 I regularly have to do things as a carer that I am not comfortable with
T1_S1_A9 I get help from people who know a lot about how to care for someone with dementia
T1_S1_A10 I have distressing arguments with the person I care for
T1_S1_A11 I worry about what will happen if I can no longer provide care
T1_S1_A12 The stresses of caring make me think about harming myself
T1_S1_A13 Almost all of my conversations are about dementia or caring
T1_S1_A14 I am not in control of my emotions
T1_S1_A15 My life now is much worse than it was before I was caring
T1_S1_A16 People see me only as a carer rather than a person in my own right
T1_S1_A17 I don't trust anyone with my true feelings about caring
T1_S1_A18 I am not sure when to correct the person I care for and when to go along with them
T1_S1_A19 It is hard to know when to help the person I care for and when to let them do things on their own
T1_S1_A20 It is distressing when I have to upset the person I care for to do the right thing for them
T1_S1_A21 I find it hard to understand how dementia affects the person I care for
T1_S1_A22 It is hard to find anyone else to spend time looking after the person I care for
T1_S1_A23 It is distressing to the see the person I care for changing
T1_S1_A24 I dread the future
T1_S1_A25 I can only get through one day at a time
T1_S1_A26 We have fewer opportunities for closeness now
T1_S1_A27 My role in our relationship (e.g. as spouse, or as child) has changed
T1_S1_A28 I have been given clear information about finances (e.g. benefits, financial planning)
T1_S1_A29 I provide the person I care for with good experiences
T1_S1_A30 I receive all the support I need to help me provide care
T1_S1_A31 I've had to put my own life on hold
T1_S1_A32 Receiving help is more hassle than it is worth
T1_S1_A33 I have planned for when things get worse
T1_S1_A34 Other people are critical of the way I provide care
T1_S1_A35 I have to cope with a lot of opinions about what I should and shouldn't do
T1_S1_A36 I never get things right in the way I provide care
T1_S1_A37 There is always something new to deal with when providing care
T1_S1_A38 I feel guilty that I don't give good enough care
T1_S1_A39 Caring has given me a purpose in life
T1_S1_A40 Little things add up to make caring difficult
T1_S1_A41 I have been given clear information about medical issues (e.g. diagnosis, managing medications)
T1_S1_A42 I am always tense
T1_S1_A43 I have been given clear information about how to make future plans (e.g. care arrangements if circumstances changed, power of attorney)
T1_S1_A44 I rarely have a good night's sleep
T1_S1_A45 I don't take very good care of myself
T1_S1_A46 I feel the good things we have won't last
T1_S1_A47 I often lose my temper with the person I care for
T1_S1_A48 I have been given clear information about support available to me as a carer
T1_S1_A49 I often feel I want to escape my caring responsibilities
T1_S1_A50 I have enough time to myself
T1_S1_A51 I use services (e.g. respite care, day care, "sitters") to give me a break
T1_S1_A52 Caring has made my social life difficult
T1_S1_A53 Caring prevents me from fulfilling my other responsibilities, (e.g. working, being a parent, volunteering)
T1_S1_A54 I have been given clear information about social care for the person I care for (e.g. adult social care services)
T1_S1_A55 I feel guilty if I do something for myself
T1_S1_A56 I am willing to ask for help if I need it
T1_S1_A57 I worry about our future financial situation
T1_S1_A58 I feel other people care about me
T1_S1_A59 Nobody can care for the person as well as I can
T1_S1_A60 I worry about the safety of the person I care for
T1_S1_A61 I feel close to the person I care for
T1_S1_A62 I struggle to communicate with the person I care for
T1_S1_A63 We have found new activities to share together
T1_S1_A64 I would like it if others tried harder to understand the situation I am in
T1_S1_A65 I am well supported by medical professionals (e.g. GPs, psychiatrists)
T1_S1_A66 Everything I do has to be planned in advance now
T1_S1_A67 I spend a lot of time trying to sort out services
T1_S1_A68 The support I receive meets my expectations
T1_S1_A69 I feel I am doing a good job as a carer
T1_S1_A70 I have enough guidance to know how to provide care (e.g. managing difficult behaviours, providing activities)
T1_S1_B1 I don't have time for anything in my life except being a carer
T1_S1_B2 I have an outlet for my thoughts and feelings about being a carer
T1_S1_B3 I still feel as connected to the people around me as I did before I started caring
T1_S1_B4 My health is as good as it was before I started caring
T1_S1_B5 I am able to protect the person I care for from risk or embarrassment
T1_S1_B6 I feel close to the person I care for
T1_S1_B7 I am able to fulfil my duty to the person I care for
T1_S1_B8 I have reassurance and support from professionals (such as doctors, nurses, social workers or support workers) to assist me as a carer
T1_S1_B9 I feel in control of the care provided to the person I care for
T1_S1_B10 Overall, I feel I get care right
T1_S1_B11 I accept what the future will hold for me as a carer
T1_S2_1 EQ5D Mobility
T1_S2_2 EQ5DSelf-Care
T1_S2_3 EQ5D Usual Activities
T1_S2_4 EQ5D Pain/Discomfort
T1_S2_5 EQ5DAnxiety/Depression
T1_S2_6 EQ5D VAS
T1_S3_1 SWEMWBS I've been feeling optimistic about the future
T1_S3_2 SWEMWBS I've been feeling useful
T1_S3_3 SWEMWBS I've been feeling relaxed
T1_S3_4 SWEMWBS I've been dealing with problems well
T1_S3_5 SWEMWBS I've been thinking clearly
T1_S3_6 SWEMWBSI've been feeling close to other people
T1_S3_7 SWEMWBS I've been able to make up my own mind about things
T1_S4_1 How old are you in years?
T1_S4_2 What is your gender?
T1_S4_3 Did you continue education after the minimum school leaving age?
T1_S4_4 Do you have a degree or equivalent professional qualification?
T1_S4_5 Did you give up work to care for the person with dementia?
T1_S4_6 What is your current employment status?
T1_S4_7 If you are in paid work, have you had to take any time off work in the last
T1_S4_8 Is English the language you usually speak at home?
T1_S4_9 What is your ethnic group?
T1_S4_10 What is your relationship to the person you care for?
T1_S4_11 Do you live with the person you care for?
T1_S4_12 How long have you been caring (years)
T1_S4_12 How long have you been caring (months)
T1_S5_1 How old is the person you care for in years?
T1_S5_2 What is their gender?
T1_S5_3 How would you describe the area where the person you care for lives?
T1_S5_4 In what year was their dementia diagnosed?
T1_S5_5 What is their diagnosis?
T1_S5_6 How would you describe the severity of the person’s dementia?