HRB Open Research HRB Open Research 2018, 1:18 Last updated: 24 JAN 2023

STUDY PROTOCOL

The experiences and perceptions of personhood for people

living with dementia: A qualitative evidence synthesis
protocol [version 1; peer review: 2 approved]
Niamh Hennelly 1, Adeline Cooney2, Catherine Houghton 3, Eamon O'Shea 1

1Centre for Economic and Social Research on Dementia, National University of Ireland, Galway, Ireland
2Centre for Teaching & Learning, Maynooth University , Maynooth, Ireland
3School of Nursing and Midwifery, National University of Ireland, Galway, Galway, Ireland

v1 First published: 05 Jun 2018, 1:18 Open Peer Review

https://doi.org/10.12688/hrbopenres.12845.1
Latest published: 05 Jun 2018, 1:18
https://doi.org/10.12688/hrbopenres.12845.1 Approval Status

1 2
Abstract
Background: Personhood in dementia is concerned with treating version 1
people living with dementia with dignity and respect, in a manner that 05 Jun 2018 view view
supports their sense of self. It focuses on treating the person living
with dementia as a person first and foremost. Supporting personhood
1. Steven R. Sabat , Georgetown University,
in dementia is the key goal of person-centred care. Existing qualitative
research examines what personhood means to the person living with Washington, USA
dementia and explores what is important to their personhood and
2. Deborah O'Connor, University of British
sense of self. However, to date little work has focused on synthesising
these studies. Columbia (UBC), Vancouver, Canada
Methods: This is a protocol for a qualitative evidence synthesis of
personhood in dementia. The review examines qualitative peer- Any reports and responses or comments on the
reviewed research of the perspectives and experiences of personhood article can be found at the end of the article.
for people living with dementia. A systematic search will be carried out
on eight electronic databases and supplemented by other purposeful
literature search methods. Title and abstract screening, and full text
screening will be carried out by two authors independently. Included
studies will be critically appraised. Thematic synthesis will be
conducted on all of the included studies. Confidence in the review
findings will be assessed using GRADE CERQual.
Discussion: The findings from this synthesis will be useful to health
care providers and policy makers seeking to understand what
personhood means for people living with dementia. The findings will
also inform optimal service provision, as well as outcome measures in
dementia.
PROSPERO registration: CRD42017076114 (21/11/2017)

Keywords
Dementia, personhood, self-identity, systematic review, qualitative
synthesis

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This article is included in the Ageing

Populations collection.

Corresponding author: Niamh Hennelly ([email protected])

Author roles: Hennelly N: Conceptualization, Methodology, Project Administration, Writing – Original Draft Preparation, Writing –
Review & Editing; Cooney A: Investigation, Methodology, Writing – Review & Editing; Houghton C: Formal Analysis, Investigation,
Methodology, Validation, Writing – Review & Editing; O'Shea E: Conceptualization, Formal Analysis, Funding Acquisition, Methodology,
Supervision, Writing – Review & Editing
Competing interests: No competing interests were disclosed.
Grant information: Health Research Board Ireland [RL-2015-1587]. This work was also supported by the Irish Research Council.
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Copyright: © 2018 Hennelly N et al. This is an open access article distributed under the terms of the Creative Commons Attribution
License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
How to cite this article: Hennelly N, Cooney A, Houghton C and O'Shea E. The experiences and perceptions of personhood for
people living with dementia: A qualitative evidence synthesis protocol [version 1; peer review: 2 approved] HRB Open Research
2018, 1:18 https://doi.org/10.12688/hrbopenres.12845.1
First published: 05 Jun 2018, 1:18 https://doi.org/10.12688/hrbopenres.12845.1

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 HRB Open Research 2018, 1:18 Last updated: 24 JAN 2023

Introduction Hennelly & O’Shea (2017), found synonyms for personhood to

In 2015, the number of people living with dementia was estimated encompass an even wider range of terms such as connection, dig-
at 46.8 million globally. This is predicted to increase significantly nity, holistic, identity, person-centred, relationships, role, respect
to 131.5 million by 2050 (Prince et al., 2015). Dementia impacts and self.
profoundly on the person living with dementia but also has
significant social effects, not least on family and friends. Until There are a number of existing reviews and synthe-
very recently, the biomedical model has dominated our think- ses on the experiences of people living with demen-
ing on dementia (Cahill, 2018). It viewed people living with tia (Ablitt et al., 2009; Eriksen et al., 2016; Górska et al.,
dementia as lacking rationality and capacity and by conse- 2018; La Fontaine & Oyebode, 2014; Steeman et al., 2006;
quence having lost personhood (Baldwin et al., 2007; Caddell von Kutzleben et al., 2012; Wadham et al., 2016; Wolverson
& Clare, 2010; Small et al., 1998; Surr, 2006). Kitwood (1997) et al., 2016). However, there are few reviews of personhood
posits that treating the person living with dementia as if they are in dementia, particularly ones that focus exclusively on the
no longer a person, as if they had lost personhood, exacerbates the direct experiences of the person living with dementia. Caddell
impact and the progression of the dementia. & Clare (2010) conducted a comprehensive systematic review
of both qualitative and quantitative research to investigate self
Research from social psychology into the self in dementia and identity in dementia, but they did not include any type of
concurs with Kitwood’s theory and shows the critical role that synthesis. They found that the majority of studies supported the
people around the person living with dementia play in sup- persistence of self in people living with dementia, including
porting their sense of self and social roles (Sabat & Harré, people with severe dementia. Our review will build on their
1992; Sabat & Collins, 1999). The implications of these find- work by synthesising existing qualitative research on personhood
ings on dementia care have resulted in a gradual paradigm from the perspective of the person living with dementia, explor-
shift from a biomedical model to a biopsychosocial model of ing their experiences and perceptions of personhood, self-
dementia care (O’Shea & Carney, 2016). This model takes a identity, sense of self and selfhood. However, the review will
whole-person approach to understanding dementia and examines not seek to examine the evidence in relation to the existence of
a wide range of factors likely to impact on the person’s subjective self, as Caddell & Clare (2010) have already examined this issue.
experience, including influences from biology, society, economics,
Rationale
psychology and the environment.
In his theorising about personhood in people living with
dementia, Kitwood (1997) identified five psychological needs
Person-centred care is firmly rooted in the biopsychosocial experienced by people living with dementia, namely the
model and is centred on recognising and supporting person- need for comfort, attachment, identity, occupation and inclu-
hood in dementia (Brooker, 2007; Edvardsson et al., 2008; sion. He also talked about the relationship aspect of dementia
Hughes & Beatty, 2013). McCormack et al. (2012) argue that and the importance of inter-personal relations in building and
evidence and research into personhood is critical to the application maintaining personhood. Maintaining personhood in the face of
of best practice in person-centred care. While there are exist- declining cognitive powers presents a huge challenge to care sys-
ing studies on personhood in dementia and in the related areas of tems in all countries. Brooker’s (2004) response was to set out a
sense of self and self-identity, very little of that research has been person-centred care approach comprising of four key elements:
systematically reviewed and synthesised. Moreover the voice of a value base; an individualised approach emphasising unique-
the person living with dementia in relation to personhood has not ness; adopting the perspective of the individual; and providing a
been heard as strongly as one might expect. This review aims to supportive social environment.
systematically search the literature to examine what personhood
means to people living with dementia and, in particular, what they Reviews of person-centred care in dementia have been under-
define as its most important constituent parts. taken (Chenoweth et al., 2015; Houghton et al., 2016; Kim &
Park, 2017). However, there are few reviews of research on per-
Personhood in dementia sonhood. In carrying out this review we will assess how much
Primarily, personhood in dementia is concerned with how research has been conducted on personhood, what the quality of
the person living with dementia perceives themselves this work is, what the results of those studies tell us and, if fea-
(Sakamoto et al., 2017) and how this can be supported by sible, we will synthesise these studies to provide a more compre-
those around them in relation to their own being and identity. hensive view of personhood in dementia. The findings from the
For example, Leibing (2008) explains how personhood is synthesis will be useful in designing, implementing and assess-
concerned with “that which really matters” to us as people ing future work on personhood, in relation to person-centred
and how important it is for people living with dementia that care for people living with dementia in all care settings. Findings
care practices does not “diminish someone’s ‘humanness” will also be useful in informing future practice, regulation and
(2008, p.183). Selfhood and self-identity are intrinsically policy in dementia care, including the measurement of personhood-
linked with, and viewed as, core elements of personhood. related outcomes.
McCormack et al. define personhood as “a sense of self-identity
maintained by relationships” (2012, p.286). Personhood in Protocol
dementia is predominantly conceptualised as relational and Aims and objectives
socially constructed placing it within the domain of roles, This review aims to examine the experiences and per-
relationships and social interaction (Tolhurst et al., 2014). ceptions of personhood for people living with dementia

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in various dementia care settings using qualitative evidence Exclusion Criteria.

synthesis. The objectives of the review are to: Types of studies:
1. Describe the experiences and perceptions of personhood - Quantitative research
for people living with dementia living at home and across - Mixed-methods studies that do not report their qualitative
home, community and long-stay care settings. methods nor present qualitative findings
2. Examine the potential implications of this synthesis for - Literature reviews and editorials
practice, regulation and policy in dementia care.
- Non-peer reviewed items including: grey literature, reports
Methods and theses
Eligibility criteria - Studies which collect data qualitatively and analyse it quanti-
Inclusion criteria. tatively (e.g. descriptive analysis) will also be excluded.
Types of studies:
Primary research studies which are qualitative and mixed- - Studies where the full text is not available
methods will be considered for inclusion. The design methods
(e.g. semi-structured interviews or observation) and the analy- Types of participants:
sis (e.g. thematic analysis or grounded theory) must be clearly - Studies where the person living with dementia is not a
reported and must be qualitative to be included in the review. participant
Mixed-methods studies will be included if the qualitative
element is clearly reported. All studies must be peer-reviewed - Studies where the participants have a mild cognitive
articles. impairment

- Studies where it is not possible to extract the views of

Types of participants: the person living with dementia
Study participants are people with any type of dementia,
including Alzheimer’s disease, Lewy Body dementia, vascu-
Phenomenon of interest:
lar dementia, Pick’s Disease, Huntington Disease, Frontotem-
- Research on artistic expressions of personhood including
poral Dementia, or Creutzfeldt-Jakob disease. Studies focusing
interpretation of texts, art or film
on people with early to late-onset dementia of all ages will be
included. A formal diagnosis of dementia will not be neces-
- Studies which examine interventions to support personhood
sary. Studies will be included once the study author(s) have
including for example, reminiscence, person-centred care
stated that the participants have dementia. If the study also
interventions, self-management interventions, art therapies
contains participants who do not have dementia, then it must be
etc.
possible to extract the views and expressions of the participants
with dementia within such studies. Otherwise, these studies will - Studies which examine other elements of subjective
be excluded. experiences in dementia such as coping, social relationships,
dignity and meaning-making along with personhood
Phenomenon of interest: where it is not possible to extract the data on personhood
The phenomenon of interest in this study are the experiences and
perceptions of personhood for people living with dementia which
Search methods for identification of studies
includes studies of the self, self-identity, selfhood and sense of
This review will use a combination of systematic searching of
self. If studies examine personhood along with another concept
the literature using electronic databases and other search methods
in dementia then it must be possible to extract the information
including purposive sampling of papers using key citations and
specific to personhood in order for the study to be included in the
hand searching of references (Booth, 2016).
synthesis.

Comparison: It will search the electronic databases listed in Table 1.

Perspectives of personhood in dementia will be solely from
people living with dementia. There is the potential for subgroup
analysis within this population, for example, analysis of Table 1. Electronic databases.
personhood in relation to care provided in different care settings.
1. Scopus
Evaluation:
2. Web of Science
The results of this synthesis will be useful in guiding prac-
tice and policy which aim to support personhood in dementia. 3. EBSCO – CINAHL and AgeLine
The results will be useful for both implementation of such practices 4. Sociological Abstracts
and examining outcomes in dementia.
5. PsycINFO
Settings: 6. Medline
Studies will be in three types of settings: home care, day care and 7. Embase
long-stay care. This review will include studies from any country
8. Cochrane
and in any language.
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These databases have been selected, in consultation with an Data extraction and management
expert librarian, in order to source peer-reviewed articles Full text articles will be imported and managed within NVivo.
across a number of disciplines including nursing, psychology, Data extraction and the thematic synthesis will be facilitated
social care and social gerontology. The search will be conducted within NVivo (Houghton et al., 2017). The data extraction form
by one author (NH) in all databases over one day. In addition, will be created within NVivo using categories such as: author,
this review will use the Google Scholar’s Cited by option to include year, location, methodology, ethics, data collection, results/
all papers referencing Kitwood & Bredin (1992) and findings including participant quotes etc.
Sabat & Harré (1992) which are two seminal works on person-
hood in dementia. Reference searches of the included papers Assessment of methodological limitations in primary studies.
will also be conducted. This involves both manual backward The included studies will be assessed for quality using the
searching of their references and forward searches using Google Critical Appraisal Skills Programme tool. This includes examin-
Scholar’s Cited by option (Booth, 2016). The search will not ing: the aims of the study, methodology, research design, recruit-
be limited to particular geographic locations and will include ment strategy, data collection, relationship between researcher
papers in any language. The search will cover from 1985 and participant, ethics, data analysis, findings and the value of
to present, starting several years prior to the publication the research. How the study is reported may not be reflective of
of Kitwood & Bredin (1992) and Sabat & Harré (1992). how the study was conducted and therefore this assessment
will not be used to exclude any studies from the synthesis
Electronic Search. A summary of the electronic search strings is (Dixon-Woods et al., 2007). The appraisal will be carried
presented in Table 2. out by one author (NH) and reviewed by a second (EOS).

Certain terms will be truncated, for example dement* or Data synthesis

Lewy Bod*, to ensure all spellings are captured. MeSH The field of qualitative evidence synthesis is wide and varied
terms will be used for Medline. The use of title and abstract will (Barnett-Page & Thomas, 2009). Qualitative synthesis differs to
depend on the individual databases. This review will report results narrative and systematic literature reviews as it aims to go beyond
of searching, screening and included studies using the PRISMA solely describing qualitative studies to developing new interpreta-
flowchart (Moher et al., 2009). tions or explanations of these studies’ findings (Barnett-Page &
Thomas, 2009). This review will synthesise the included qualita-
Screening tive studies using thematic synthesis (Thomas & Harden, 2008).
All references will be imported into Endnote and duplicates This is a three step process which starts with line by line coding
removed. Two authors (NH and AC) will screen titles and of primary data from the included studies in order to develop
abstracts independently, using Covidence. When there is no descriptive themes and generate broader analytical themes
abstract or it is not possible to determine whether to include (Thomas & Harden, 2008). This process will be conducted within
an article or not, the full text of the article will be retrieved. NVivo with guidance from a previous synthesis on how best to
One author (NH) will review all full-text articles, two other use the coding software (Houghton et al., 2017). Thematic syn-
authors (CH and EOS) will share second screening of all full- thesis was chosen because the final result is particularly useful
text articles. Disagreement between authors will be discussed for providing information for policy and practice (Barnett-Page
and if required, in consultation with all authors. If necessary, & Thomas, 2009). One author (NH) will carry out the thematic
we will contact authors of potential included studies for fur- synthesis with continuous input from the other three authors
ther clarification and information. If the review retrieves more at each stage. Using NVivo to carry out the whole process from
than 40 eligible papers then the CART framework will be line by line coding to analytical themes provides for transpar-
used to determine what articles to include (Aslam et al., 2017; ency and clarity in the synthesis process. All of the authors will
Tennison, 2013). This encompasses examining the complete- read and make contributions to the final paper. As this is
ness, accuracy, relevance and timeliness of the studies (Aslam a qualitative evidence synthesis, no statistical analysis is planned
et al., 2017; Tennison, 2013). on the papers selected for the review.

Table 2. Search strings.

personhood OR person*hood OR selfhood OR self*hood OR self-identity OR self*identity

OR identity OR “sense of self” OR self (Title and abstract)
AND dementia OR Alzheimer* OR “Lewy Bod*” OR “vascular dementia” OR pick* OR
Huntington* OR frontotemporal OR Creutzfeldt-Jakob OR “cognitive impairment”(Title
and abstract)
AND qualitative OR “mixed*method*” OR narrative OR phenomenol* OR ethnograph OR
ethnonursing OR ethnological OR questionnaire OR “grounded*theory” OR “case*stud*”
OR “action*research” OR “focus*group*” OR thematic OR construction* OR hermeneutic
OR heurist* (Title and abstract)

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Sub group analysis and heterogeneity. Given the signifi- makes it difficult to assess how person-centred care can be
cant impact of setting on the dementia experience, a sub group enhanced for people living with dementia through changes in
analysis between home and residential care settings will be current practice. The challenge is to provide the information,
carried out. Other sub group analysis many include experi- knowledge, incentives and resources for personhood to take hold
ence of personhood in formal care provision, people with young in dementia care across all care settings. The purpose of this
onset dementia, gender or ethnicity. Such groups will be protocol is to systematically assess peer-reviewed qualita-
determined inductively through the synthesis. tive studies of personhood in dementia from the perspec-
tive of people living with dementia themselves. This will help
Assessment of confidence in the review findings give direct voice and influence to people living with demen-
Appraisal of review findings. This review will use the GRADE tia in shaping the narrative with respect to personhood and
CERQual approach, to appraise the review findings, which person-centred care in dementia. The outcomes of the planned
involves examining four main elements: the limitations of synthesis will be useful as an aid to developing an experience-
included studies, how relevant the studies are to the review ques- led appreciation and understanding of the key elements of per-
tion, the coherence of the review finding and how adequate that sonhood in dementia. The results will be important in planning
data is in supporting the review finding. This will include a care and supports for people living with dementia that focus on,
sensitivity analysis to examine the contribution of the poorer and support, personhood-focused care, as interpreted by people
quality studies to the overall findings (Houghton et al., 2017; living with the disease. Structuring person-centred care around
Thomas & Harden, 2008). The appraisal of review findings will be what matters to people living with dementia increases the poten-
carried out by one author (CH) and reviewed by a second (NH). tial of enhancing their care and quality of life. Additionally, these
results will be useful for evaluation, regulation and outcome
Reporting. This review will be reported in line with the assessment in dementia care. They will also act as a benchmark
ENTREQ guidelines (Tong et al., 2012). A completed for people living with dementia and their family carers in relation
PRISMA-P checklist is available as Supplementary File 1. to personhood ideals and attributes.

Dissemination of findings. Findings will be submitted to a peer- Protocol registration

reviewed journal for publication. The findings will also be inte- Registered with International Prospective Register of System-
grated into a wider study being conducted at NUI Galway, also atic Reviews (PROSPERO) no. CRD42017076114 on the 21st
funded by the Health Research Board of Ireland (HRB), on November 2017. The following amendments were made to the
resource allocation processes in dementia care provision. The original protocol: the electronic search string was edited and
findings will also be shared with stakeholders, including peo- the expected completion date of the review was extended. Both
ple with dementia, as part of the commitment to Public Patient versions of the protocol are available on www.crd.york.ac.uk/
Involvement (PPI) at the Centre for Economic and Social prospero. Any further amendments to the protocol will be
Research on Dementia in NUI Galway. updated on PROSPERO.
Study status. This study is currently underway. Title and abstract
screening has taken place. Full-text screening is ongoing. Data Data availability
extraction has not yet taken place. No data is associated with this article

Discussion
Personhood, and its realisation in person-centred care, Competing interests
is nowadays part of the narrative, if not always the real- No competing interests were disclosed.
ity, of care for people living with dementia. While it appears
that we have come a long way from Kitwood’s (1993) early Grant information
theorising about personhood to a clearer understanding of Health Research Board Ireland [RL-2015-1587].
the practical application of the model, personhood remains a
contested space within the dementia literature. Moreover, an This work was also supported by the Irish Research Council.
absence of clarity with respect to the conceptualisation and actu-
alisation of personhood within policy documents, for example the The funders had no role in study design, data collection and
Irish National Dementia Strategy (Hennelly & O’Shea, 2017), analysis, decision to publish, or preparation of the manuscript.

Supplementary material
Supplementary File 1 – Completed PRISMA-P checklist.
Click here to access the data.

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381–397. Ment Health. 2016; 20(5): 463–473.
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Kitwood T: Towards a theory of dementia care: the interpersonal process. Wolverson EL, Clarke C, Moniz-cook ED: Living positively with dementia: a
Ageing Soc. 1993; 13(1): 51–67. systematic review and synthesis of the qualitative literature. Aging Ment Health.
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Open Peer Review

Current Peer Review Status:

Version 1

Reviewer Report 28 June 2018

https://doi.org/10.21956/hrbopenres.13907.r26259

© 2018 O'Connor D. This is an open access peer review report distributed under the terms of the Creative
Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium,
provided the original work is properly cited.

Deborah O'Connor
School of Social Work, University of British Columbia (UBC), Vancouver, BC, Canada

Thank you for inviting me to review this proposed study. As the authors note, there is a growing
body of research now linked to how people with dementia experience dementia, much of which is
grounded within the personhood literature. However, to the best of my knowledge, this literature
has not been synthesized. Certainly, as a researcher, I would welcome this and look forward to
seeing the end results of this study.

Generally, I see this proposed study as well-developed and straight-forward. I do have a few
relatively minor questions/comments for the authors to consider:

Criteria for inclusion/exclusion:

1. The authors note that: “Studies focusing on people with early to late-onset dementia of all
ages will be included. A formal diagnosis of dementia will not be necessary”. I have two
questions here. First, how will the authors ascertain that this research has indeed focused
on persons with dementia? Second, while the authors note here they will include early to
late-onset, later in the protocol they indicated that studies where participants have a mild
cognitive impairment will be excluded. Can these two, potentially conflicting statements, be
clarified? Perhaps the authors are referencing MCI as a diagnosis? If so, how does this align
with not requiring a diagnosis of dementia?

2. In terms of selection, the authors indicate that they will examine “all papers referencing
Kitwood & Bredin (1992) and Sabat & Harré (1992) which are two seminal works on person-
hood in dementia”. I would suggest expanding this to include Kitwood 1997 as often this is
cited in lieu of the 1992 paper. As well, anything referencing Sabat is probably relevant as
well.

3. The authors indicate they will only address peer-reviewed publications. While on the one
hand I understand this, it would be useful to explicate why other sources are being
excluded and to recognize the limitations associated with this decision to exclude. This is
particularly pertinent to the decision to exclude autobiographical accounts (which arguably,

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a case could be made for them to be considered case studies). Similarly, there are a number
of policy papers that have attempted to bring forward the perspectives of those with
dementia, can the authors explain why these will be excluded including acknowledging the
limitations of their exclusion.

Analysis and Synthesis

When asked if sufficient details about methodology were provided that this study would be
replicable, I responded ‘partly’. The rationale behind my hesitant response is related to three
issues that I think could usefully be further developed to increase replicability:
1. Initially I wondered if only studies in English would be considered, but later noted that non-
English papers will also be included. How do the authors intend to handle non-English
papers?

2. In terms of developing a protocol that is replicable, it would be useful if the author’s

identified the questions or topics that they will use to insure a systematic reading of each
paper. I recognize that some broad questions have been identified (i.e. Study quality) and I
suspect there are some implicit questions, but as a reader it would be helpful if these were
more explicitly operationalized into some sort of a reading protocol. This would facilitate
contrast and comparison?

3. Picking up on my previous comment: I think there are some aspects related to a

synthesis of this body of research that would be of particular value to address. One of these
is culture: for example, how does culture inform each study including sense-making of
perceptions/experiences of personhood? I note that the authors’ state that “Other sub
group analysis many[*] include experience of personhood in formal care provision, people
with young onset dementia, gender or ethnicity”. Personhood has been critiqued for it’s
cultural relevance. From my perspective, some incorporation of culture into this synthesis
would increase its value. Hence, I would recommend that the tentative ‘may’ be changed to
a more intentional ‘will ‘ be included as a sub-group analysis. I would also encourage
broadening beyond ethnicity to consider for example, race and sexual orientation.
I hope these comments are helpful and as previously noted, I look forward to reading this
synthesis!

* Note need to edit this sentence as this is a direct quote: I’m assuming the ‘many’ is supposed to
read ‘may’.

Is the rationale for, and objectives of, the study clearly described?
Yes

Is the study design appropriate for the research question?

Yes

Are sufficient details of the methods provided to allow replication by others?

Partly

Are the datasets clearly presented in a useable and accessible format?

Not applicable

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Competing Interests: No competing interests were disclosed.

I confirm that I have read this submission and believe that I have an appropriate level of
expertise to confirm that it is of an acceptable scientific standard.

Reviewer Report 21 June 2018

https://doi.org/10.21956/hrbopenres.13907.r26262

© 2018 Sabat S. This is an open access peer review report distributed under the terms of the Creative Commons
Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the
original work is properly cited.

Steven R. Sabat
Georgetown University, Washington, DC, USA

I indicated that the study is "partly" appropriate for the research question because it is appears to
be limited to peer reviewed work. Even though there is a statement to the contrary within the
protocol, there seems to be an omission of important references. For example, the voices of
people with dementia, such as those of Kate Swafford, Richard Taylor, and Christine Bryden, for
example, who have written books on their experience of dementia are omitted in this study, but
should not be. The fact that their work is not peer reviewed should not disqualify their voices from
the study because, after all, their voices are precisely those that the authors seek to hear. Likewise,
books such as Snyder's Speaking Our Minds: What it's Like to have Alzheimer's should be included as
well for the same reasons as mentioned above. All modesty notwithstanding, my own work in
book form is germane as well. The perspective of people with dementia can be found in great
detail in sources other than peer reviewed journals and although the authors have noted that
non-peer reviewed items are included, the above authors' works are not included in the reference
section and, I believe, inclusion of those works would add to the authors' protocol especially
because they are so clearly and correctly concerned with the perspective of people living with
dementia (see Discussion section).

Having said that, it is excellent that the studies reviewed will include the settings of home care,
day care, and long-term care. This is especially important and a potential source of valuable
information as are studies using a variety of methods (quantitative, qualitative, mixed, etc.).
Likewise, I think that the "Phenomenon of Interest" is excellent for its inclusivity of a variety of
expressions of personhood, such as art and social relationships, dignity, and meaning making for
example. The authors are to be congratulated for the breadth of their protocol in this respect as
well as exploring contributions from a number of different disciplines and databases and
geographic locations. This, too, is evidence of the authors' understanding that knowledge can be
gained from using a wide-angle lens, as it were, so as to include a variety of methods and venues
of reporting information. The inclusion of a variety of data bases is also admirable.

I appreciate the authors' intention to assess methodological limitations in primary studies. The
assets and liabilities of methods of investigation is an important contribution to the study. The
same is true of subgroup analysis involving people living in a variety of settings and people with
varied gender and ethnicity. This is especially important because the "one size fits all" variety of

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understanding is terribly flawed in light of the idea of person-centered care.

I agree wholeheartedly with the authors' goal of improving person-centered care by including the
perspective of those very people. In the words of Christine Bryden, there should be "nothing
about us without us" and this, as the authors clearly note, needs to be applied in all care settings
so that it can be shown that doing so is not only beneficial for those diagnosed and their care
partners, but also economically and socially beneficial for the country itself. The protocol is
especially important and timely and I am very impressed with its scope and, of course, with the
rather important rationale for improving further person-centered care for people living with
dementia.

Is the rationale for, and objectives of, the study clearly described?
Yes

Is the study design appropriate for the research question?

Partly

Are sufficient details of the methods provided to allow replication by others?

Yes

Are the datasets clearly presented in a useable and accessible format?

No

Competing Interests: No competing interests were disclosed.

I confirm that I have read this submission and believe that I have an appropriate level of
expertise to confirm that it is of an acceptable scientific standard.

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