“What is important to you?” A study on how to assess, measure and improve quality of life for people with dementia Information Booklet for Professionals Page |1 Who we are and what we do Newcastle University Institute for Ageing and Health has joined forces with Gateshead Primary Care Trust and Mental Health Concern to research and develop a tool to assess positive outcomes in quality of life specifically for individuals with a diagnosis of dementia. The project aims to complement similar research in this field in order to make positive recommendations to commissioners and care providers. The end goal is simple, yet important: to be able to assess and improve the quality of life of people affected by dementia. Page |2 Mental Health Concern is a registered charity that provides support to people with severe mental health problems and dementia in order to help them live valued lives. Victoria Johnson is the researcher for this project and will be carrying out the interviews. If you have any queries about the project, or would like to be involved, please contact Victoria using the contact details at the end of this booklet. Page |3 The Study The study itself has the following aims: 1. Initially to recruit as many people with dementia as possible to participate in the study, regardless of ability, stage of the dementia, gender, ethnicity, or other demographical variables. 2. To conduct one semi-structured interview per participant, ascertaining what they individually define as a good quality of life and what they feel are the main factors are in order for them to achieve, maintain or improve this. 3. To analyse this in-depth information and design a tool that can be used with any individual with dementia in order to assess their quality of life and what can be done to improve it. Page |4 4. To forward this tool to commissioners and care providers so that it can be consistently applied, enabling the measurement of whether the individual’s quality of life has improved or declined over time. Also, to highlight any common key themes that have emerged as being of importance to people with dementia, so that these can be focussed on in care settings. We may also ask the carer some questions to get a more rounded view, with the permission of the participant and carer. “Quality of life is defined primarily by the person, as a person, and their circumstances, not their dementia” (Williamson, 2010) Page |5 Ethics This research will be conducted in accordance with the ethical guidelines set by Newcastle University and Mental Health Concern. Confidentiality Information will be treated confidentially at all times. Any personal details such as names and addresses will be anonymised. The participant will have the option to be interviewed alone if they would prefer not to be overheard. Safety The interviews will be conducted in a place where the participant feels safe and they will have the option to be accompanied by another individual of their choice if this makes them feel more comfortable. Page |6 Informed consent All participants and their carers will be fully briefed on the study and provided with a consent form to sign. For those unable to sign, an assent form will be completed. No one will participate in the study unless consent has been given. Any participant can withdraw from the study at any time without question. All of their data will be destroyed. Should anyone involved in the study have any queries or issues regarding their participation in the study, they have been provided with Victoria’s contact details and have been encouraged to contact her to resolve these. Page |7 Victoria Johnson (Researcher) Telephone: 0191 217 0377 Fax: 0191 217 0350 E-mail: [email protected] Postal address: Mental Health Concern, Buttress House, 36 Brenkley Way, Seaton Burn, Newcastle upon Tyne, NE13 6DS Page |8 What is important to you? Participant Information Booklet Page |9 Who we are and what we do Newcastle University Institute for Ageing and Health has joined forces with Gateshead Primary Care Trust and Mental Health Concern to research what you think is important in helping you to live a happy and healthy life following your diagnosis. This could be something as simple as being able to read the newspaper first thing in the morning, or something more complicated such as living independently in your own home. We want to hear about what you want and how you would like to see this done. P a g e | 10 The Project Our research project aims to help services to be more responsive towards making your individual needs, wishes and aspirations a reality. By looking at what you find important in your daily life, we hope to enable service providers to understand this more clearly. The project is split into different stages; 1. We will ask you some questions to find out your views on certain topics. You can talk about past experiences, your own observations, or simply point to a picture to explain your answer. For example, we may ask you whether you go out much and where you like to go. 2. We will then write down these responses, anonymise them, and then compare them to what other people affected by memory difficulties have said. P a g e | 11 3. After this we’ll look for any common views to see if what you have said matches other people’s opinions. We will keep an anonymous copy of your interview to avoid losing any important information that you have given. 4. Lastly, we will put all of this information into one document (except for details such as names, locations and so on) and publish it so that anyone can access it, including healthcare commissioners and providers. This will improve their knowledge of what is important to you and give you the opportunity for your views to be heard nationally. We may also ask your significant other/s some questions to get a more rounded view, although if you are not happy with this just say and we won’t. P a g e | 12 Ensuring that you are protected Confidentiality It is important for you to know where the information you provide goes. All of your details, such as your name or where you are staying will be kept in a secure file managed by Victoria so that no one else can access it. When the project has ended, this file will be destroyed. The published document will be designed so that no one will be able to tell that your responses came from you. Your contributions will be anonymised and given a code number. We would like to interview you by yourself so that you can be comfortable knowing that your responses will not be overheard by anyone else. However, if you would like someone to be with you, this is also fine. Safety The interview will be done in your home or care setting in an area where you feel safe and P a g e | 13 comfortable. As mentioned previously, your responses to our questions will be anonymous so no one will be able to follow up these responses with you. Your safety and privacy are our top priority. Right to refuse/withdraw from the project If at any stage you feel uncomfortable during the project, please say so at any time and we can immediately withdraw your participation without question. This means that we will remove all traces of any responses that you have made and you will no longer participate in the project. Informed consent This booklet informs you of the purpose of the project as well as the steps to be taken to complete it. In order to be able to interview you, we need your consent. You provide this by signing a consent form which Victoria can go through with you. Once we have received your consent form, Victoria will arrange a time to do the interview and will come and visit you when it is convenient for you. P a g e | 14 Victoria Johnson is the researcher for this project and will be carrying out the interviews. If you have any queries about the project, contact Victoria using these contact details: Victoria’s Contact Details Victoria Johnson (Researcher) Telephone: 0191 217 0377 Fax: 0191 217 0350 E-mail: [email protected] Postal address: Mental Health Concern, Buttress House, 36 Brenkley Way, Seaton Burn, Newcastle upon Tyne, NE13 6DS If you require this booklet in an alternative format or language, please contact Victoria using the details above.