Research Proposal: Qualitative Investigation into Internet-based Interventions for Professional Dementia Caregivers' Wellbeing

Abstract

This paper proposes a qualitative investigation into internet-based intervention for the wellbeing of professional dementia caregivers. Dementia care is associated with care burden leading to negative psychological consequences, such as stress, anxiety, and depression. The coronavirus disease (COVID-19) has made access to the traditional face-to-face therapy challenging for dementia caregivers. Accordingly, some dementia caregivers have started to use therapy via information and communication technologies (ICTs) including internet-based interventions. The interventions offered in this medium include cognitive behavioural therapy (CBT) and psychoeducation. To date, research has only examined the effects of these ICTs interventions among informal/family dementia caregivers, suggesting a need to examine the effects on professional dementia caregivers. In order to capture their first-hand experience receiving ICTs interventions on wellbeing, a qualitative research, using thematic analysis on semi-structured interview is proposed. Interviews will focus on the strengths and weaknesses of ICTs interventions on their mental wellbeing and care burden. Findings can inform the utility of these interventions for professional dementia caregivers in COVID-19 to help protect them from severe mental distress such as burnout supporting long-lasting care for their patients/clients.

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Journal of Concurrent Disorders Vol. (TBD) No. (TBD) , 2020 (pp. TBD)
Research Proposal: Qualitative investigation into Internet-based Interventions for
Professional Dementia Caregivers’ Wellbeing
Muhammad Aledeh1, Yasuhiro Kotera1
1University of Derby. Online Learning, Derby, United Kingdom
Corresponding author:
Muhammad Aledeh
m.aledeh1@unimail.derby.ac.uk
Abstract
This paper proposes a qualitative investigation into internet-based intervention for the
wellbeing of professional dementia caregivers. Dementia care is associated with care burden
leading to negative psychological consequences, such as stress, anxiety, and depression. The
coronavirus disease (COVID-19) has made access to the traditional face-to-face therapy
challenging for dementia caregivers. Accordingly, some dementia caregivers have started to
use therapy via information and communication technologies (ICTs) including internet-based
interventions. The interventions offered in this medium include cognitive behavioural therapy
(CBT) and psychoeducation. To date, research has only examined the effects of these ICTs
interventions among informal/family dementia caregivers, suggesting a need to examine the
effects on professional dementia caregivers. In order to capture their first-hand experience
receiving ICTs interventions on wellbeing, a qualitative research, using thematic analysis on
semi-structured interview is proposed. Interviews will focus on the strengths and weaknesses
of ICTs interventions on their mental wellbeing and care burden. Findings can inform the utility
of these interventions for professional dementia caregivers in COVID-19 to help protect them
from severe mental distress such as burnout supporting long-lasting care for their
patients/clients.
Keywords: Qualitative investigation; Internet-based; ICTs; CBT; Psychoeducation;
Interventions; Professional dementia caregivers; COVID-19; Research proposal
Introduction
There has been a steady increase in life
expectancy due to improvements in
medicine, science, and technology
(Weatherall et al., 2006). One of the several
factors leading to dementia is ageing (Chen
et al., 2009) and the population of aged
people continues to increase with a resultant
increase in the cost of caring for this ageing
population (Papadopoulos, 2020;

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Wittenberg et al., 2020). New report shows
that the number of people with dementia is
going to double by 2050 (Health Europa,
2020). Consequently, caring for this
population group becomes challenging to
dementia caregivers who suffer physically
and psychologically from care burden (Hsu
& Willis, 2013). There is significant amount
of stress as a result of care burden from
dementia caregivers’ caregiving role where
gender and educational background are
some of the risk factors (Adelman et al.,
2014; Cheng, 2017; Yu et al., 2015).
Dementia caregivers are faced with
significant physical and psychological
challenges. The caregiving roles of
dementia caregivers stretch across the
whole day as they work round the clock and
consequently, they are isolated (Adelman et
al., 2014; Yu et al., 2015).
The wellbeing of dementia
caregivers is expected to be challenged in
the unprecedented time of the coronavirus
(COVID-19). A recent study noted that
people with dementia and their caregivers
are seriously affected by the lockdown and
isolations (Wang et al., 2020). Dementia
caregivers suffer from care burden which
negatively affects their quality of life
(Igarashi et al., 2020). Stress, anxiety, and
depression are comorbid with dementia and
dementia caregivers suffer from these
diseases (Ferrara et al., 2008; Fiske et al.,
2009; Kuring et al., 2018; Kwak et al.,
2017; Mortamais et al., 2018; Muliyala &
Varghese, 2010) that can be treated with
either pharmacological or
psychological/psychosocial interventions
(Bandelow et al., 2017; Ng et al., 2017;
Worthen & Cash, 2020). However, in order
to curb the further spread of the COVID-19
disease, it is important to maintain social
distancing and follow the required public
healthcare measures that are put in place
(Wang et al., 2020). Consequently, for
dementia caregivers to continue accessing
the therapy that they need during the
COVID-19 crisis, accessing psychological
and psychosocial interventions such as
Internet-based method is key to helping
them remain safe
(Cuffaro et al., 2020).
Aims and Objectives
The aim of this research proposal is
to conduct a qualitative investigation to
determine whether receiving Internet-based
interventions is effective for professional
dementia caregivers who are prevented by
the COVID-19 pandemic from attending
the traditional face-to-face therapy. The
objectives of this research proposal are to
answer some relevant questions to the
accessibility of Internet-based interventions
for professional dementia caregivers and to
evaluate the effectiveness of these
interventions.

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Rationale/Justification
In the unprecedented time such as
the coronavirus (COVID-19) pandemic, it is
necessary to determine effective ways to
deliver therapy to professional dementia
caregivers who require receiving
psychological or psychosocial
interventions. The unprecedented
coronavirus pandemic has forced people to
go into isolation (Wang et al., 2020). With
the fear of new outbreaks of the virus,
meaning that there is going to be longer
periods of isolation for people with
dementia and their caregivers if there is a
renewed lockdown (The Guardian, 2020;
Wang et al., 2020). Continued and
prolonged isolation have significant
negative consequences not only on the
wellbeing of people with dementia but also
on that of their caregivers (Gerritsen &
Oude Voshaar, 2020; Wang et al., 2020).
Literature Review
Numerous studies conducted in the
recent years have reported that
informal/family dementia caregivers can
access Internet-based interventions, and
they received positive effects on their
wellbeing (Boots et al., 2014; Cristancho-
Lacroix et al., 2015; Egan et al., 2018; Guay
et al., 2017; Hurley et al., 2014; Jensen et
al., 2015; Stefanopoulou et al., 2019; Zhao
et al., 2019). Furthermore, Aledeh and
Adam (2020) conducted a literature review
evaluating the efficacy of those
interventions for dementia caregivers
including both professional and informal
ones. The review reported that while there
was a great amount of evidence for informal
dementia caregivers, whether Internet-
based/Web-based interventions were
effective for professional dementia
caregivers’ wellbeing or not remained to be
explored. (Aledeh & Adam, 2020). These
findings suggest that there is the need to
further research into these technological
interventions. Considering the challenging
wellbeing status of professional dementia
caregivers, it is important to determine
helpful approaches to deliver the required
psychological and psychosocial
interventions for professional dementia
caregivers.
Research Question
The following research questions
will be developed and addressed: (1.) how
accessible is internet-based intervention for
professional dementia caregivers? And (2.)
how effective is internet-based intervention
for professional dementia caregivers?
Method
Study Design
This study will adopt a qualitative
research design using thematic analysis in
order to capture participants’ experience
and their subjective meanings as it will

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allow researchers “to gather detailed and
specific information” (Booth et al., 2016;
Clarke & Braun, 2018). The interview will
be on Internet-based interventions and a
focus group with semi-structured interviews
(Green & Kotera, 2020). Furthermore,
specific variables and data that are
associated with the study will be analysed
(Denscombe, 2017).
Study Setting
In the organisation that we intend to
recruit study participants, there are eight
hospitals and nine long-term (nursing
homes) care facilities with each of them
having more than a couple of dementia ward
including geriatric psychiatric wards (Stadt
Wien, 2020). Five dementia wards will be
selected for the recruitment of study
participants. The interview will allow
minimal intrusion in order to help
participants feel at ease as that would make
them more open to discuss freely (Edwards
& Kotera, 2020).
Reaching Out to The Right Population
Sampling and Recruitment
Choosing the right populations is a
crucial aspect of any successful research
project (Kendall, 2003). Participants to be
recruited for this study will be professional
dementia caregivers caring for people living
with dementia. The participants will be
drawn from carers in institutional facilities
such as nursing homes or residential homes,
and community care settings. We plan to
recruit the proposed study participants by
sending through
psychologists/psychotherapists who deliver
Internet-based interventions to this
caregivers’ population. Additionally, in
order to capture participants' experiences
brief telephone or email interviews will also
be used. The sample size, that is the
minimum number of participants for the
study sample will be calculated in order to
allow us to detect any clinically important
difference between groups being compared
(Kendall, 2003).
Eligibility Criteria
For participants to be eligible for the
study, they must be 18 years old and above,
and must be caregivers working with people
living with dementia. Their workplace
should either be in a nursing home or care
facility, geriatric psychiatric department,
day care centre and or in the community
care setting: within the walls of care
recipients' homes. These caregivers will
also be receiving any form of psychological
or psychosocial intervention.
Inclusion criteria
To be included in the study, carers
must be caregivers of people with dementia
either in a nursing facility, and community
care setting. The caregivers can be either

Journal of Concurrent Disorders Vol. (TBD) No. (TBD) , 2020 (pp. TBD)
professionals on paid services or those in
voluntary service.
Exclusion criteria
Caregivers not caring for people
living with dementia will be excluded from
the study. Also, caregivers with cognitive
decline will not be included in the study.
Informed Consent
Each of the participants will be
given a consent form to fill in ensuring them
that their data will be kept safe and used
ethically until they are safely deleted.
Demographic Outcomes
Demographic data from all
participants which include their age,
gender, marital status, ethnicity, level of
education, and the number of years working
with people with dementia will be collected
(Edwards & Kotera, 2020).
Data Collection and Analysis
Data for the study will be collected
through interviews and will be analysed.
Because we will be applying the qualitative
method, the data collection through
sampling will either take the semi-
structured form (Creswell & Creswell,
2018). Data will be analysed by co-authors,
and triangulation will be formed with
another researcher in the field to ensure that
data analysis was done fairly.
Procedure
There will be information available
for the participants to know what the study
is about and forms to seek participants’
(Informed consent) consents. The interview
questions will be open-ended in order to
allow the participants the freedom to
express themselves well (Gaudet & Robert,
2018). The audio recordings which will be
transcribed and coded (Denscombe, 2017).
Participants can withdraw from the study at
any time they feel to do so without any
consequences as regards their interventions.
Ethical Considerations
Ethical approval of the study will be
sought from the university and care
facility`s review board. The data collected
will be treated complying with the Data
Protection Act 1988. Consequently,
participants’ personal data will strictly be
protected as regulated by the general data
protection regulation (GDPR) (Mourby et
al., 2019). The research study will be in
accordance with the Helsinki Declaration of
1975 (Edwards & Kotera, 2020).
Remuneration
None of the proposed participants
will be rewarded nor be given any incentive
for participating in the study.

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Data Protection
All participants will be assured that
their privacy will be ensured. The
information collected from them as part of
the study will be securely stored and only
accessible by (research team) us and any
future collaborators. In order to ensure
anonymity, a unique participation number
will be assigned to each participant. There
will be no mention of names or places to
ensure participants’ confidentiality.
Study Strengths and Limitations
This research applying qualitative
research approach will enable us to capture
participants experience (Adu, 2019; Booth
et al., 2016; Creswell & Creswell, 2018). It
is hoped that this study will provide some
insights into how professional dementia
caregivers can benefit from internet-based
psychological interventions on their
wellbeing and care burden, by identifying
the strengths and weaknesses of this
approach.
Limitations
The relatively small participants’
population size will make it difficult for the
outcome or findings of this research to be
generalisable (O'Cathain et al., 2013).
Furthermore, research show that not all
qualitative research undertaken with trials
are published in peer-review journals
(O'Cathain et al., 2013).
Knowledge Gaps
From the literature review carried
out there are a few gaps in knowledge that
exist regarding factors that influenced
informal/family dementia caregivers’
mental wellbeing but to date not much has
been researched into these interventions
with professional dementia caregivers.
Therefore, this study will enable us to
answer some of the research questions
whether professional dementia caregivers
are more mentally resilient than
informal/family dementia caregivers.
Additionally, this study will enable us to
understand the contributing factors that are
responsible for the outcome.
Outcomes and Dissemination
This research will be disseminated
by pitching findings of the study to
stakeholders, policymakers, researchers and
non-researchers through conferences, peer-
reviewed journal publication and through
the media. Furthermore, findings and
highlights about the research findings will
be published using the social media such as
Twitter, LinkedIn and ResearchGate.
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