JBS047@bham - Ac.uk: Identifier Code

Identifier code:
Instructions for first round questionnaire
Thank you for agreeing to participate in this study. The aim is to establish a
framework for discussing advanced care planning (ACP) with people with
dementia. You will find a questionnaire attached to these instructions
consisting of both statements and questions.
For the statements please indicate your level of agreement by underlining or

circling one of the responses. Please also feel free to make any comments
about the statement in the space underneath. These comments will be passed
onto other participants in the next round but they will not know who made
them.
For the questions please write your answer in the box immediately below the
question.
‘Diagnosis’ always refers to a diagnosis of dementia and ‘disclosure’ always

refers to the process of telling someone about such a diagnosis. All statements
and questions refer to a person with dementia who still has the capacity for
decision making (i.e. does not have someone else making decisions for them).
Please answer the questions and rate the statements as honestly as you can as
some of the statements may go against cultural norms or professional codes of
practice. We are interested in your thoughts and opinions rather than current
guidelines or expectations. Please remember that other participants will not
know your identity and only the researcher and his supervisor will have access
to that information.
Please also complete the short demographic questionnaire which follows the
main section.
You have two weeks to complete the questionnaires from the date you receive
this and you will be sent a reminder after one week. The questionnaires should
take no more than 45 minutes to complete. Please e-mail the completed
questionnaires to JBS047@bham.ac.uk or return by post in the stamped
addressed envelope provided.
Thank you.
First Round Questionnaire
1. A person with dementia should:
Always be told their diagnosis.

OR
Not be told their diagnosis
OR
Whether or not to disclose to a person with dementia should be
left to the discretion of the health care professional.
2. Disclosure to a person with dementia should be done by:
A healthcare professional.
OR
A family member.
OR
It depends
3. The person with dementia has a right not to know their diagnosis if they
don’t want to.
Strongly Disagree Neither Agree Strongly

disagree agree nor agree
disagree
Comments:
4. What information do you think it is helpful to give when disclosure to
the person with dementia does take place?
5. What information, if any, do you think it is unhelpful to give when

disclosure to the person with dementia does take place?
6. Disclosure usually causes distress to the person with dementia.

disagree
Comments:
7. Disclosure usually causes distress to the carer.

disagree
Comments:
8. Disclosure usually causes distress to the person who is doing the

disclosing.

disagree
Comments:
9. Information about diagnosis can be gleaned from the manner in which

the discloser conducts the conversation.

disagree
Comments:
10.Dementia should be discussed, with whoever you think is appropriate

(carer or person with dementia):
As soon as it is suspected.
OR
Once the diagnosis is certain
11.People with dementia and their families generally receive enough

information about the symptoms and prognosis of dementia.

disagree
Comments:
12.Disclosure should be an on-going process where carers/people with

dementia can access more information and support at a time that suits
them.

disagree
Comments:
13.Advance care planning is a process by which an individual’s wishes for

future care are documented in case their condition deteriorates to the
extent that they can no longer communicate these wishes. What do you
think that an advance care plan should include?
14.Full disclosure to the person with dementia is essential before a

discussion about advance care planning can take place.
disagree
Comments:
15.Advance care planning can take place without full disclosure to the
person with dementia.

disagree
Comments:
16.At what point should advance care planning be discussed?
17. How should the issue of advance care planning be explained to those
involved?
18.Who should be involved in advance care planning?
19.Very few people with dementia have advance care plans. Do you have
any suggestions as to why this might be?
20.Advance care planning is important to the future care of a person with
dementia.

disagree
Comments:
21. All people with dementia should have an advance care plan.

disagree
Comments:
22. Are there any other issues surrounding advance care planning you feel
are important but have not been discussed?
Demographic questionnaire
Please either underline or circle the answer which applies best to you. Please
underline or circle only one answer per question.
1) What gender are you? Male
Female
2) How old are you? 18-25
26-35
36-45
46-55
56-65
66-75
76-85
86-100
3) How would you describe your ethnicity?
White (British) Black Caribbean
White (Other) Black African
Mixed race Black (Other)
Indian Other (Please state)
Pakistani _______________________
Bangladeshi
Other Asian (Non-Chinese)
Chinese
4) For policy makers and healthcare professionals only. How many years of
experience do you have of dealing with dementia and/or related issues?
Less than a year
1-2 years
3-5 years
5-7 years
7-10 years
10+ years
5) For people with dementia and carers only. For how many years have you
either had dementia (people with dementia) or have been the primary carer
for a person with dementia (carers)?
Less than a year
1-2 years
3-5 years
5-7 years
7-10 years
10+ years

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Instructions for first round questionnaire

For the statements please indicate your level of agreement by underlining or

‘Diagnosis’ always refers to a diagnosis of dementia and ‘disclosure’ always

Always be told their diagnosis.

2. Disclosure to a person with dementia should be done by:

Strongly Disagree Neither Agree Strongly

5. What information, if any, do you think it is unhelpful to give when

6. Disclosure usually causes distress to the person with dementia.

Strongly Disagree Neither Agree Strongly

7. Disclosure usually causes distress to the carer.

Strongly Disagree Neither Agree Strongly

8. Disclosure usually causes distress to the person who is doing the

Strongly Disagree Neither Agree Strongly

9. Information about diagnosis can be gleaned from the manner in which

Strongly Disagree Neither Agree Strongly

10.Dementia should be discussed, with whoever you think is appropriate

11.People with dementia and their families generally receive enough

Strongly Disagree Neither Agree Strongly

12.Disclosure should be an on-going process where carers/people with

Strongly Disagree Neither Agree Strongly

13.Advance care planning is a process by which an individual’s wishes for

14.Full disclosure to the person with dementia is essential before a

Strongly Disagree Neither Agree Strongly

16.At what point should advance care planning be discussed?

Strongly Disagree Neither Agree Strongly

Strongly Disagree Neither Agree Strongly

1) What gender are you? Male

3) How would you describe your ethnicity?

White (British) Black Caribbean

White (Other) Black African

Mixed race Black (Other)

Indian Other (Please state)

Other Asian (Non-Chinese)

Less than a year

Less than a year

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