“What is important to you?” A study on how to assess,

“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
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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.
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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.
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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.
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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)
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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.
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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.
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Victoria Johnson (Researcher)
Telephone: 0191 217 0377
Fax: 0191 217 0350
E-mail: victoria.johnson@ncl.ac.uk
Postal address: Mental Health Concern, Buttress House, 36
Brenkley Way, Seaton Burn, Newcastle upon Tyne, NE13
6DS
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What is important to you?
Participant Information Booklet
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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.
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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.
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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.
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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
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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.
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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: victoria.johnson@ncl.ac.uk
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.