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Stage 1 – Survey Themes emerging from the survey inform…

Stage 2 – Focus Groups Themes emerging from both the survey

and the focus groups inform…

Stage 3 – Interviews

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%Information Sheet for Participants in Focus Groups (1)

Exploring How the General Public Understand and Respond to

Dementia This research project is part of a PhD study exploring how the general public in Northern Ireland understand and respond to dementia. The research team includes the PhD student, Patricia Mc Parland and two supervisors, Dr. Anthea Innes and Prof. Kirstein Rummery. I would like to invite you to take part in this research project. Before you decide, I would like to explain why the research is being done and what it involves for you. I will go through this information sheet with you and answer any questions you may have. This will probably take about ten minutes. What is this research exercise for? The aim of this research is to find out what members of the general public know and think about dementia and how they feel they might respond to someone with dementia. What is my involvement in the research? To find out the views of the general public a series of focus groups will be held. The focus groups are groups of around 6 individuals and will be facilitated by Patricia Mc Parland. You are being asked if you would be willing to participate, as you indicated during the Northern Ireland Life and Times Survey that you would be interested in taking part in further research about dementia. Your participation is voluntary. If you decide to take part, you are still free to withdraw at any time. Focus groups will take approximately 1 hour and will be held in a location close to where you live. You will only be asked to participate in one focus group. What will happen to the information I give? I would like to tape-record our conversations, but will ask your consent to do this. If you would prefer not to be recorded, I will respect this and will ask to take notes instead.

% [::%

I will write a report on my findings and would like to quote you to illustrate the points I make. All quotes from participants will be recorded anonymously. Will the research benefit me? The numbers of people living with dementia in Northern Ireland continues to grow and the NI assembly has just released a Dementia Strategy. One of the issues raised is the need to improve public understanding and address stigma. While you may not benefit directly from this research, it is hoped the research will provide valuable information, which could be used to inform how public understanding can be improved and as a result improve the experience of dementia for people living with dementia, their carers and those in the wider community. Further information If at any time you wish to make a complaint, you may do so by contacting: Professor Alison Bowes, Head of School School of Applied Social Science, University of Stirling Telephone: 01786 467740 Email: [email protected] Should you wish to discuss the study further prior to making a decision the team can be contacted via e-mail or telephone: Patricia Mc Parland: [email protected] Telephone: 07912063448 Anthea Innes: [email protected] Kirstein Rummery: [email protected] Telephone: 01786 467740 Thank you for taking the time to read this information sheet. If you are happy to take part in a focus group I will discuss the main points again when I meet with you and will ask you to sign a consent form then.

Patricia Mc Parland PhD Student School of Applied Social Science University of Stirling

% [:B%

Information Sheet for Participants in Focus Groups (2)

Exploring How the General Public Understand and Respond to Dementia

This research project is part of a PhD study exploring how the general public in Northern Ireland understand and respond to dementia. The research team includes the PhD student, Patricia Mc Parland and two supervisors, Dr. Anthea Innes and Prof. Kirstein Rummery. I would like to invite you to take part in this research project. Before you decide, I would like to explain why the research is being done and what it involves for you. I will go through this information sheet with you and answer any questions you may have. This will probably take about ten minutes. What is this research exercise for? The aim of this research is to find out what members of the general public know and think about dementia and how they feel they might respond to someone with dementia. What is my involvement in the research? To find out the views of the general public a series of focus groups will be held. The focus groups are groups of around 6 individuals and will be facilitated by Patricia Mc Parland. You are being asked if you would be willing to participate, as you have responded to a call for volunteers to take part in research about dementia. Your participation is voluntary. If you decide to take part, you are still free to withdraw at any time. Focus groups will take approximately 1 hour and will be held in a location close to where you live. You will only be asked to participate in one focus group. What will happen to the information I give? I would like to tape-record our conversations, but will ask your consent to do this. If you would prefer not to be recorded, I will respect this and will ask to take notes instead. I will write a report on my findings and would like to quote you to illustrate the points I make. All quotes from participants will be recorded anonymously. Will the research benefit me?

% [:[%

The numbers of people living with dementia in Northern Ireland continues to grow and the NI assembly has just released a Dementia Strategy. One of the issues raised is the need to improve public understanding and address stigma. While you may not benefit directly from this research, it is hoped the research will provide valuable information, which could be used to inform how public understanding can be improved and as a result improve the experience of dementia for people living with dementia, their carers and those in the wider community. Further information If at any time you wish to make a complaint, you may do so by contacting: Professor Alison Bowes, Head of School School of Applied Social Science, University of Stirling Telephone: 01786 467740 Email: [email protected] Should you wish to discuss the study further prior to making a decision the team can be contacted via e-mail or telephone: Patricia Mc Parland: [email protected] Telephone: 07912063448 Anthea Innes: [email protected] Kirstein Rummery: [email protected] Telephone: 01786 467740 Thank you for taking the time to read this information sheet. If you are happy to take part in a focus group I will discuss the main points again when I meet with you and will ask you to sign a consent form then.

Patricia Mc Parland PhD Student School of Applied Social Science University of Stirling %

% [:e%

Information Sheet for Participants in Interviews

Exploring How the General Public Understand and Respond to Dementia

This research project is part of a PhD study exploring how the general public in Northern Ireland understand and respond to dementia. The research team includes the PhD student, Patricia Mc Parland and two supervisors, Dr. Anthea Innes and Prof. Kirstein Rummery. I would like to invite you to take part in this research project. Before you decide, I would like to explain why the research is being done and what it involves for you. I will go through this information sheet with you and answer any questions you may have. This will probably take about ten minutes. What is this research exercise for? The aim of this research is to find out what members of the general public know and think about dementia and how they feel they might respond to someone with dementia. What is my involvement in the research? To find out the views of the general public a number of interviews will be held with people who have already participated in a focus group. The interviews are one to one and the interviewer is Patricia Mc Parland. You are being asked if you would be willing to participate, as you indicated during a focus group that you would consider taking part in further research about dementia. Your participation is voluntary. If you decide to take part, you are still free to withdraw at any time. Interviews will take approximately 1 hour and will be held in your own home. If this is not convenient we can arrange to meet in a location convenient for you. You will only be asked to participate in one interview. What will happen to the information I give? I would like to tape-record our conversations, but will ask your consent to do this. If you would prefer not to be recorded, I will respect this and will ask to take notes instead. I will write a report on my findings and would like to quote you to illustrate the points I make. All quotes from participants will be recorded anonymously.

% [:d%

Will the research benefit me? The numbers of people living with dementia in Northern Ireland continues to grow and the NI assembly has just released a Dementia Strategy. One of the issues raised is the need to improve public understanding and address stigma. While you may not benefit directly from this research, it is hoped the research will provide valuable information, which could be used to inform how public understanding can be improved and as a result improve the experience of dementia for people living with dementia, their carers and those in the wider community. Further information If at any time you wish to make a complaint, you may do so by contacting: Professor Alison Bowes, Head of School School of Applied Social Science, University of Stirling Telephone: 01786 467740 Email: [email protected] Should you wish to discuss the study further prior to making a decision the team can be contacted via e-mail or telephone: Patricia Mc Parland: [email protected] Telephone: 07912063448 Anthea Innes: [email protected] Kirstein Rummery: [email protected] Telephone: 01786 467740 Thank you for taking the time to read this information sheet. If you are happy to take part in a focus group I will discuss the main points again when I meet with you and will ask you to sign a consent form then.

Patricia Mc Parland PhD Student School of Applied Social Science University of Stirling %

% [:K%

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University of Stirling

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Consent form for people participating in the Study of How the General Public Understand and Respond to

Dementia

This study is part of a PhD project. The research team consists of the PhD student, Patricia Mc Parland and two university supervisors – Dr. Anthea Innes and Professor Kirstein Rummery. This consent form relates to your willingness to take part in a focus group. The groups will be facilitated by Patricia Mc Parland and are part of the above PhD study. %FOCUS GROUP Please initial boxes

I I 1. I confirm that I have read and understood the information sheet for for the above research and have had the opportunity

to ask questions.

%

2. I 2. I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason.

%

3. I agree to take part in the above research.

%%%

4. I agree to take part in a focus group. %

% [:G%

5. I understand that all information will be kept confidential.

%

6. I agree that the information can be used on condition that it is kept confidential and anonymised.

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7. I understand that all information will be accessed only by the research team and that it will be deleted upon completion of the study.

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!Please confirm if you wish to view the findings of this study on completion " - Yes I would like to view the findings of this study " - No I would not like to view the findings of this study

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% [:O%

University of Stirling

Stirling FK9 4LA Scotland

Consent form for people participating in the Study of How the General Public Understand and Respond to

Dementia

This study is part of a PhD project. The research team consists of the PhD student, Patricia Mc Parland and two university supervisors – Dr. Anthea Innes and Professor Kirstein Rummery. This consent form relates to your willingness to take part in an interview. The interview is part of the above PhD study and the interviewer is Patricia Mc Parland. %Interviews

Please initial boxes

I I 1. I confirm that I have read and understood the information sheet for for the above research and have had the opportunity

to ask questions.

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2. I 2. I understand that my participation is voluntary and that I am free to withdraw at any time without giving any reason.

%

3. I agree to take part in the above research.

%%%

4. I agree to take part in an interview. %

5. I understand that all information will be kept confidential.

%

% [B\%

6. I agree that the information can be used on condition that it is kept confidential and anonymised.

%

7. I understand that all information will be accessed only by the research team and that it will be deleted upon completion of the study.

%

!!!Please confirm if you wish to view the findings of this study on completion " - Yes I would like to view the findings of this study " - No I would not like to view the findings of this study

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QFF#&:%^!ID!5-+.%3%F-&.!:#,*'+-F0%3!e7#4.%*&&-%+#!

%BACKGROUND QUESTIONS

1. NAME:

2. AGE:

18 - 30 31 – 50 51 – 65 66 – 80 over 80

3. Gender: %Male Female

%% %% % %%

4. Level of Education:

%Primary ! ! !!!Secondary/Grammer !!!Third level %%%%

5. Are you currently working?

%Yes No

%%

% [[\%

6. If your answer to question 5 was no, are you

Retired Unemployed Off work as a result of sickness Other !

7. Please describe your type of work in your current or last

employment

8. Would you describe yourself as a carer for anyone?

Yes No

9. If you were to describe your current financial circumstances would you describe yourself as

Doing OK

Struggling Doing very well In difficulty %

% [[:%

10. Do you know someone with dementia

Yes No If the answer is yes please tick one of the following boxes %Family member Friend Acquaintance %%%

11. How would you describe your own health?

Very good Good Ok Not so good Not in good health %%

!""#$%&'()*(+,-./(01,."23$4#15&#6(7814&-&"8$4(9#:,;18"<&-/((

!Focus Group and Interview Participants - Background Demographics

Participant Age Gender Education SES Carer Working status

Knowing someone with dementia Health

!

1 66-80 M Third Level Doing OK No Retired

Family Member Good

!

2 66-80 F Primary Doing OK No Retired Yes OK

!

3 51-65 M Third Level Doing OK No Semi-retired No Good

!

4 66-80 M Third Level Doing OK Yes Retired No Good

!

5 66-80 M Secondary/Grammer Struggling No Retired No Good

!

6 66-80 M Third Level Doing OK No Retired

Family Member Very good

!

7 66-80 M Third Level Doing OK No Semi-retired Friend Good

!

8 51-65 F Third Level Doing OK No Retired

Family Member Good

!

9 31-50 F Third Level Doing OK No Unemployed No Very good

!10 80+ M Secondary/Grammer Struggling Retired Friend Good !

!

! """!

!



11 66-80 F Secondary/Grammer Doing OK Yes Retired Friend

Not so good

12 31-50 F Secondary/Grammer Doing very well No Working No Very good

13 31-50 M Third Level Doing OK No Working No Very good

14 66-80 M Third Level Doing OK No Retired Family Member OK

15 31-50 F Secondary/Grammer Doing OK No Working No OK

16 51-65 F Third Level Doing OK No Working Family Member

Not so good

17 31-50 M Third Level Doing OK Yes Working No Very good

18 51-65 M Secondary/Grammer Doing OK Yes Working Friend Very good

19 31-50 M Secondary/Grammer Doing OK No Working No Good

20 51-65 M Third Level Doing OK Yes Semi-retired Family Member Good

!

! ""#!

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31 51-65 F Secondary/Grammer Doing OK No Retired No Very good

32 31-50 F Third Level Struggling Yes Other No Good

33 51-65 F Third Level Doing OK Yes Working Acquaintaince OK

!!!

!""#$%&'()*+(,-./0(12-/"34$5#26&#7(8925&.&"9$5(:-%&$;(<=05#>(

!Code Trust Location Focus Group/

Interview Person

BFC Belfast Belfast Focus Group Details removed

BFD Belfast Belfast Focus Group Details removed

BFF Belfast Belfast Focus Group Details removed

BFJA Belfast Belfast Focus Group Details removed

BFJ Belfast Belfast Focus Group Details removed

BFJO Belfast Belfast Focus Group Details removed

BFP Belfast Belfast Focus Group Details removed

BFS Belfast Belfast Focus Group Details removed

BFT Belfast Belfast Focus Group Details removed

SEFD South Eastern Lisburn Focus Group Details removed

SEFE South Eastern Lisburn Focus Group Details removed

SEFER South Eastern Lisburn Focus Group Details removed

SEFJ South Eastern Lisburn Focus Group Details removed

SEFI South Eastern Lisburn Focus Group Details removed

SEFP South Eastern Lisburn Focus Group Details removed

SEFT South Eastern Lisburn Focus Group Details removed

NFP Northern Antrim Focus Group Details removed

NFA Northern Antrim Focus Group Details removed

NFJA Northern Antrim Focus Group Details removed

NFS Northern Antrim Focus Group Details removed

NFJ Northern Antrim Focus Group Details removed

!

! ""#!

!

Code Trust Location Focus Group/ Interview Person

WFV Western Omagh Focus Group Details removed

WFR Western Omagh Focus Group Details removed

WFH Western Omagh Focus Group Details removed

WFG Western Omagh Focus Group Details removed

WFD Western Omagh Focus Group Details removed

WFB Western Omagh Focus Group Details removed

WFDE Western Omagh Focus Group Details removed

WFT Western Omagh Focus Group Details removed

SFJ Southern Newry Focus Group Details removed

SFM Southern Newry Focus Group Details removed

SFMA Southern Newry Focus Group Details removed

SFG Southern Newry Focus Group Details removed

BIC Belfast Belfast Interview Details removed

BIF Belfast Belfast Interview Details removed

SEIE South Eastern Lisburn Interview Details removed

SEIT South Eastern Lisburn Interview Details removed

NIP Northern Ballymena Interview Details removed

WIR Western Omagh Interview Details removed

WIH Western Omagh Interview Details removed

SIG Southern Newry Interview Details removed

SIM Southern Newry Interview Details removed

Key: First letter refers to Trust name except in the case of the South Eastern Trust where it is the first 2 letters Second letter refers to whether the setting is focus group or interview Third letter refers to the initial of the participant's first name (where there is more than one person with the same first initial, the second letter is also included, e.g. SFM- Southern Trust, Focus Group, Mark and SFMA - Southern Trust, Focus Group, Margaret !!

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