Essay Writing Service http://HelpWriting.net/Actively-Involving-People-With-Dementia 👈

1. RESEARCH FOR NURSING PRACTICE
Actively involving people with dementia in qualitative research
Jane McKeown, Amanda Clarke, Christine Ingleton and Julie Repper
Aims and objectives. This paper aims to:
• Consider the major challenges to involving people with dementia in qualitative research.
• Critique a process consent framework.
• Demonstrate the need for nurses and researchers to explore these issues in research and practice with people with dementia.
• Consider the impact of the Mental Capacity Act 2005 on research with people with dementia.
To achieve its aims, the authors will draw on current literature and use examples which explores the use of life story work with
people with dementia by taking a qualitative approach.
Background. There is acceptance that researchers should consider ways of actively involving people with dementia in research
as participants where appropriate to answering specific research questions. Process consent methods have been advocated as an
ethical way forward in recruiting and gaining consent for people with dementia, the Mental Capacity Act offers guidance to
both practitioners and researchers.
Design and method. This paper does not seek to be a comprehensive review of the current literature but is a discussion paper
appraising a process consent framework against current literature and drawing on the lead author’s PhD study, exploring life
story work with older people with dementia.
Results and conclusions. The Mental Capacity Act and process consent frameworks compliment one another, and their use
should be considered when researching issues affecting older people with dementia. Researchers and practitioners should work
more closely to ensure that the principles of process consent are achieved. Process consent models can equally be applied to
everyday nursing practice.
Relevance to clinical practice. Process consent models can provide an ethical and practical framework to ensure that consent is
continually assessed in people with dementia with all clinical interventions. The paper also draws on literature exploring
practical ways of involving people with dementia in evaluating service delivery.
Key words: consent, dementia, qualitative research, user-involvement
Accepted for publication: 8 August 2009
Authors: Jane McKeown, BA, RMN, PG Dip. Education, Senior
Nurse in Service User and Carer Involvement and PhD Student,
Sheffield Health and Social Care NHS Foundation Trust, Service
Development Directorate, Fulwood House, Sheffield; Amanda
Clarke, BA, MA, PhD, RGN, Senior Lecturer, Centre for Advanced
Studies in Nursing (CASN), Centre of Academic Primary Care,
University of Aberdeen, Aberdeen; Christine Ingleton, BA, MA, PhD,
RGN, RCNT, PGCE, Professor in Palliative Care Nursing, Centre for
Health and Social Care Studies and Service Development, The
University of Sheffield, Samuel Fox House, Northern General
Hospital, Sheffield; Julie Repper, BA, MPhil, PhD, RGN, RMN,
Associate Professor and Reader in Mental Health Nursing and Social
Care, University of Nottingham and Nottinghamshire Healthcare
Trust, Duncan MacMillan House, Nottingham, UK
Correpondence: Jane McKeown, Senior Nurse in Service User and
Carer Involvement and PhD Student, Sheffield Health and Social
Care NHS Foundation Trust, Service Development Directorate,
Fulwood House, Old Fulwood Road, Sheffield S10 3TH, UK.
Telephone: 0114 2263950.
E-mail: Jane.Mckeown@shsc.nhs.uk
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943 1935
doi: 10.1111/j.1365-2702.2009.03136.x

2. Introduction
In the past, people with dementia were largely excluded from
research (Dewing 2002), and, until the 1990s, research
tended to overlook their perspectives (Hubbard et al. 2003).
Research was influenced by the dominance of the symptom-
focussed medical model (Downs 1997), and understandings
of dementia commonly concentrated on charting cognitive
function and decline (Hubbard et al. 2003). The person with
dementia was viewed as a ‘disease entity’, unable to contrib-
ute directly to an understanding of the condition (Cottrell
Schultz 1993). Such exclusions could frustrate the growth of
scientific knowledge, denying future patients and carers the
benefits. Robinson (2002), who has dementia, emphasises the
point: ‘What a hugely missed opportunity it would be if
people with Alzheimer’s were excluded from the very thing
that could be used to gain a fuller understanding of their
disease.’ (p. 104). Nevertheless, researchers must have a
sound justification for including people with dementia, their
inclusion must be appropriate for addressing the study’s
research questions.
The move towards person-centred care has resulted in
growing acknowledgement that people with dementia have
rights, including the right for their experiences to be explored
through research (Downs 1997). Interest in psychological and
biographical aspects of the life experiences of people with
dementia has been important in this change (Hubbard et al.
2003). Increasingly, there is consensus that people with
dementia should be included in research as active partici-
pants, not purely as subjects (Cottrell Schultz 1993,
Downs 1997, Dewing 2002, Hubbard et al. 2003, Hellstrom
et al. 2007).
According to INVOLVE (2007), active public involvement
in research would involve people other than researchers:
• Helping to identify and ask the right questions in the right
way.
• Ensuring that health and social care research is relevant to
patients, service users and the public.
• Participating in the research process, whether designing,
managing, undertaking or disseminating research.
Service users’ participation in research may involve con-
sultation, collaboration and/or commissioning and conduct-
ing the research (Telford et al. 2002). In the early stages of
dementia, it is possible to assess involvement in research
along such models of involvement; however, for people with
advanced dementia, it is unrealistic and indeed undesirable to
expect participation under such models.
This paper explores one approach for providing opportu-
nities for people with advanced dementia and their carers to
become actively involved in research. By this, we mean
ensuring that they participate in all decisions about their
involvement, the research methods that are acceptable to
them and providing opportunities for their voices to be heard
about the research topic, as well as whether they want to
remain involved.
Aims
This paper aims to:
• Consider the major challenges to involving people with
dementia in qualitative research.
• Critique a process consent framework.
• Demonstrate the need for nurses and researchers to explore
these issues in research and practice with people with
dementia.
• Consider the impact of the Mental Capacity Act (MCA)
2005 on research with people with dementia.
To achieve its aims, the authors will draw on current
literature and will also use examples from the lead author’s
PhD study which explores the use of life story work (LSW)
with people with dementia by taking a qualitative approach.
Background
Two main challenges must be faced if the ethical involvement
of people with dementia in research is to be made a reality:
first, how people with dementia are recruited, and second,
how meaningful consent is gained.
Recruitment
Considerable groundwork is required by researchers before
recruitment commences including identifying potential ‘gate-
keepers’. Hellstrom et al. (2007) describe ‘several layers’ of
gatekeepers who have to be negotiated to access older people
with dementia for research, examples include practitioners,
managers, ethics committees and carers. Overprotective
gatekeepers may deny older people with dementia the right
to decide whether to participate in research, and recruiting
participants may depend on how the gatekeeper perceives the
research, the type of relationship they have with potential
participants and their personal judgement about who should
be involved (Bartlett Martin 2002). Hellstrom et al. (2007)
conclude that there are no easy solutions to the gatekeeper
dilemma, and researchers must accept that some form of
protection is necessary and desirable.
An important consideration for recruitment of participants
is whether the research is therapeutic; will it directly benefit
the research participant with minimal burden? Or non-
therapeutic; whilst not directly benefiting the participant, has
J McKeown et al.
1936 2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943

3. it a good chance of benefitting society as a whole and people
with dementia in the future? (Berghman Ter – Melen 1995,
MCA 2005). If the research is non-therapeutic, then the
MCA (2005), enacted in the UK in October 2007, recom-
mends that, on ethical grounds, participation should only be
considered if the research:
• Provides knowledge about the cause, treatment or care of
people with dementia.
• Has negligible risk for the person.
• Does not interfere with the freedom of action or privacy of
the person.
• Is not unduly invasive or restrictive to the person.
Several authors describe how data collection can, in itself,
be therapeutic for the person with dementia and report how
participants were pleased to be heard (Keady Gilleard
1999, Barnett 2000, Clarke Keady 2002). McKillop
(2002) appreciated that his experiences of dementia could
shape the future and benefit others; however, Clarke (2006)
notes that qualitative interviews also have the potential to be
exploitative, particularly when undertaken with vulnerable
participants.
A further issue to consider in recruitment of participants is
the terminology used regarding the person’s condition. Hell-
strom et al. (2007) decided not to use the word ‘dementia’
unless it was introduced by the person or their family,
preferring the term ‘memory problem’. Bartlett and Martin
(2002) discuss the potential deception of using this term and
question whether fully informed consent is only possible when
the person is fully aware of their diagnosis, but concomitantly,
appreciating the harm and distress that may be evoked by a
researcher unwittingly giving the person a diagnosis. Reid
et al. (2001) faced a similar dilemma but concluded that it is
important to meet the participants on their own terms and not
insist on them admitting that they have dementia. The notion
of active involvement in research rests on values of transpar-
ency, honesty and openness, perhaps then it is time to extend
this to honesty about diagnosis.
Consent
Much research continues to use an extension to traditional
competency-based informed consent methods or rely on
proxy consent (Dewing 2008); this section will assess some of
these approaches and then argue that such approaches alone
are unhelpful when considering the involvement of people
with dementia in qualitative research. The authors suggest
that, given a relevant approach to consent, people with
dementia are able to make decisions about whether to
participate in research that may move beyond traditional
approaches to consent.
Gaining consent for research participation is a complex
issue requiring an assessment of capacity to understand the
information given. This may contribute to people with
dementia being excluded from research. A diagnosis of
dementia does not necessarily indicate incapacity to give
consent to be involved in research: capacity to consent is
largely situational (MCA 2005, Dewing 2007) and dependent
on the complexity of the decision to be made. As dementia
progresses, however, it is accepted that abilities of compre-
hension, making judgements, reasoning, communicating and
remembering may become increasingly impaired (Hubbard
et al. 2002) and thereby capacity to informed consent may be
affected.
In England, the MCA (2005) states that people are deemed
capable unless there is evidence to the contrary. If doubts are
raised, then the Act asks: does the person have impairment of
mind or brain? If so, does that impairment mean that the
person is unable to make the decision in question at the time
it needs to be made? If there are doubts over capacity, then an
assessment needs to be made of the person’s ability to have: a
general understanding of what decision needs to be made and
why, a general understanding of the likely consequences of
making (or not) the decision, an ability to understand, retain,
use and weigh up the information and an ability to
communicate this.
Once a person has been deemed incapable of giving
informed consent, proxy consent is commonly employed.
This may further compound ethical problems. Proxy consent
is common in bio-medical research when people with
dementia are deemed legally not able to give informed
consent (Dewing 2002). The support for making use of
proxy consent is the belief that the proxy, most often a
relative or close carer, knew the person before they
developed dementia and will base the decision on their best
interests, taking into consideration past desires and values.
However, communication with carers of people with
dementia suggests that they are often surprised at the
choices their relatives make with regard to diet or partic-
ipation in activities, compared to the past, so it is difficult to
ensure that other values and preferences remain the same
with the experience of dementia. Several studies have
highlighted the potential conflict that can exist between
people with dementia and their proxies when consenting to
research (Buchanan Brock 1990, Sachs et al. 1994,
Stocking et al. 2006). Being a proxy decision maker can
also be a burdensome activity for some care givers (Sugar-
man et al. 2001), and Bartlett and Martin (2002) draw
attention to the lack of practical guidance on the best way
to involve carers in the process. A further concern regarding
the use of a proxy is that the person with dementia is not
Research for nursing practice Actively involving people with dementia in qualitative research
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943 1937

4. meaningfully included in the process as the attention is on
the researchers and proxy’s responsibilities (Dewing 2002)
so disempowering a person who has made their own
decisions throughout life. The MCA (2005) supports the
appointment of a proxy or ‘consultee’ in cases where the
research participant is lacking in capacity to give informed
consent. Responsibility, however, remains with the research-
er to ensure that involvement is in participants’ best
interests and concords with their wishes. Fisk et al. (1998)
suggest researchers have an obligation to ensure any
decision is guided by the individual’s wishes. Assent from
the person with dementia is required even when the proxy
has given consent. McKillop, who has dementia (McKillop
Wilkinson 2004), urges researchers to seek permission
from the person with dementia before interviewing but
believes the involvement of family is important. He suggests
differing views to participation between the carer and
the person with dementia can be negotiated with the
researcher to prevent any confrontation and that ‘if
anything goes wrong they (the carer) are left to pick up
the pieces.’ (p. 119).
The discussion so far has focussed on traditional consent
processes based on a cognitive competency-based approach,
which by their nature excludes people with cognitive
impairment (Dewing 2002). Indeed, researchers may feel
that their values about the participation of older people with
dementia in research are compromised to satisfy research
ethics committee requirements (Grout 2004). McCormack
(2003) and Dewing (2007) believe researchers need to present
a range of alternative approaches to ethics committees, and
consent must move towards methods that fully engage the
person lacking in capacity in the research process. However,
researchers need to accept that ethical review boards may be
reluctant to accept process consent methods alone; therefore,
the methods discussed later need to be considered in addition
to more traditional approaches to consent.
A ‘one-off’ act of attaining consent is inadequate for people
with dementia (Dewing 2002, Hubbard et al. 2003), this is
particularly relevant in qualitative research where consent is
rarely viewed as a single event but a continual, ongoing
process between the researcher and the participant (Kayser-
Jones Koenig 1994, Reid et al. 2001). McCormack (2002)
suggests that any ‘one-off’ consent process places the person
with dementia in a less powerful position than the person
seeking the consent.
Terms used to describe ongoing processes towards consent
include process consent (Usher Arthur 1998, Reid et al.
2001, Dewing 2002, 2007), ongoing negotiated consent
(Crossan McColgan 1999) and narrative-based approach
to consent (McCormack 2002). Dewing (2007) proposes a
model where consent is seen as a process running through the
whole research project, incorporating the key characteristics
of process consent models.
Methods
We will now explore the application of a process consent
model (Dewing 2007) in the lead author’s PhD study (the
co-authors are academic supervisors). This used a multiple
case study approach to explore the implementation and
impact of LSW with people diagnosed with dementia
(Table 1).
Dewing (2007) proposes a model of process consent
comprising five elements: preparation and background,
establishing basis for consent, initial consent, ongoing con-
sent monitoring, and feedback and support. Researchers may
choose to consider this as a pathway to undertaking research
with people with dementia in addition to more traditional
approaches.
Preparation and background
Dewing (2007) urges researchers to be transparent about how
access to people with dementia is negotiated with family,
staff or other significant people. Sherratt et al. (2007) discuss
this ‘gatekeeper challenge’ and offer the example of care
home managers who may refuse access to researchers on the
grounds that residents would not wish to be disturbed.
‘Gatekeepers’ were identified at the beginning of the LSW
Table 1 A multiple case study exploring the experience of using a
life story work (LSW) approach with people with dementia and
‘challenging behaviour’
Aims to investigate the ways in which LSW
Shapes the care that the person with dementia receives
Effects the relationships between the person with dementia,
carers and staff
Is understood and developed in practice
A qualitative multiple case study design is underpinned by a
constructivist approach. The use of LSW with six people who
have a diagnosis of dementia and ‘challenging behaviour’,
receiving care within a Health and Social Care Trust, is being
investigated through semi-structured interviews, observation,
documentary analysis and behaviour rating scales
Life story work is undertaken by care staff with the person and their
family. Data are being collected from the individual, staff members
involved in their care and where appropriate, family and friends
who contribute to the intervention. There is an emphasis on
qualitative methods and participatory approaches
This study is being undertaken by the lead author who is a Senior
Nurse undertaking a PhD. The co-authors are supervising the study.
J McKeown et al.
1938 2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943

5. study, and representatives from different ‘gatekeeper groups’
were invited to collaborate in the development of the research
protocol and join the research reference group. This com-
prised carers, nursing staff, support workers, occupational
therapist, research supervisor and service manager. This
group was crucial in offering advice and overcoming barriers
in the recruitment of staff, service users and carers. Identi-
fying and accessing gatekeepers were relatively straightfor-
ward as the lead researcher worked as a nurse in the service;
however, this may prove more challenging for researchers
who are relative ‘outsiders’. The challenge for researchers
involves finding ways to develop relationships with potential
gatekeepers whilst also ensuring that the person with
dementia is fully involved in the process.
An important element of Dewing’s method (Dewing 2007)
is to discover something about the person’s biography and, in
particular, develop an awareness of signs of well-being so
that the researcher can then assess this in research interac-
tions. In the LSW project, to ensure that the persons’ values
and preferences were considered, before recruitment
occurred, staff and family carers were asked to consider
whether the service user had been someone who was happy to
talk about their life and whether there was anything from
their past about which they may not wish to be reminded.
Understanding biography and well-being were integral to the
project, which was based on listening to the individual’s life
story, and a well-being scale (Bradford Dementia Group
2001) was used as part of the data collection. The process of
gaining this information improved communication with the
person with dementia and highlighted significant people in
their life. Where biography is not an aspect of the study,
researchers need to consider how best to ensure that they get
to know the person without it appearing forced or contrived.
This inevitably requires an investment in time.
Establishing basis for consent
It is important for researchers to understand the usual ways
the person would communicate consent or non-consent and
be able to support any decisions made with detailed notes
(Dewing 2007). Care staff in the LSW study were asked to
identify a person who met the inclusion criteria and whom
they thought might enjoy participating, the lead researcher
then met with the person and their relatives to explore this
further. A deliberately flexible approach was taken to
describe the project to the person with dementia, and the
experience of nursing people with dementia allowed the lead
researcher to adapt the way information was provided to
each person and assess their response to that information. In
the absence of relative, the MCA gives guidance to help
ensure people with dementia are not exploited or railroaded
into participation. In the LSW study, participants were seen
alone if they were comfortable with this and if they had some
understanding of what was being asked, this was confirmed
by them talking a little about their life story without
prompting. Timing was particularly important, in the case
of one participant who had very few ‘good days’ where he
was able to communicate, the researcher needed to be able to
seize the opportunity to meet with him on a ‘good day’.
Premeetings may be helpful to get to know the person and
to assess their abilities (Hubbard et al. 2003). McKillop and
Wilkinson (2004) recommend that the first visit involves an
‘ice breaker’, such as sweets or biscuits, or reference to some
aspect of the person’s life such as their garden or family. In
Hellstrom et al.’s (2007) study, a flower was taken to the first
meeting, customary in Sweden where the research occurred.
This should be set in context, and researchers must ensure
that such gifts do not make the person feel obligated in any
way.
In the LSW study, all encounters were detailed in a research
diary and discussed in supervision. Care staff can also have a
valuable role to play in making the researcher aware of any
changes in the well-being of the person with dementia
following the research intervention.
Initial consent
Providing relevant information in a way that is understand-
able to the person is important in facilitating their decision
whether or not to consent to the research. This can be
challenging as ethics committees may require adherence to a
specified framework, with standard information sheets that
may not always be accessible for people with dementia or
their relatives. Researchers therefore must verbally explain
the research to each person with dementia at a level each
individual can understand. As Cowdell (2008) explained:
‘trying to find the right words without being patronising was
challenging’ (p. 32). In the LSW study, detailed field notes
were made about interactions with participants and their
family, and observations were discussed with care staff to
establish whether the person was assenting to participation.
One relative became overwhelmed with the information
sheets which had followed a template required by the ethics
committee. She clearly stated that she was happy for her
husband’s participation (and it was clear he was assenting);
however, she thought there was ‘too much’ for her to get
involved and did not wish to sign anything. This was
discussed with care staff and the academic supervisors who
agreed there was evidence to support the husband’s consent
and to respect the wife’s decision to not participate. With
Research for nursing practice Actively involving people with dementia in qualitative research
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943 1939

6. hindsight, a range of more illustrative information sheets may
have helped but the best tool was skilled communication.
The process method relies on researchers’ ability to engage
in critical reflection whilst also having the skills to interact
with the person with dementia (Dewing 2007). Not all
researchers will possess such skills, and this situation raises
the issue of who should conduct research with people with
dementia. Hellstrom et al. (2007) suggest that practical
experience of working with people with dementia may help
to ensure interviews are relaxed and sensitive to the individ-
ual’s needs. Certainly, researchers undertaking studies with
people with dementia should be skilled in verbal and non-
verbal communication whilst also being knowledgeable and
sensitive to the ways dementia has an impact on the person
(Hubbard et al. 2003). A possible solution would be a much
closer working relationship between academics and clinical
staff working with people with dementia.
Ongoing consent monitoring
Fundamental to process consent is the need to continually
assess the person’s choice to continue in the research, and
such approaches to consent rely on the researcher’s con-
science in ensuring that the person is consenting to continue
with each research encounter (Reid 1999). In the LSW study,
consent was continually assessed for both the practice and the
research aspect of the work. One person could clearly
articulate his desire to remain involved by his verbal
comments and enthusiasm in all interactions. Another par-
ticipant was unable to communicate verbally, and staff
monitored his verbal and non verbal behaviours on a simply
designed recording form following any encounter. Hubbard
et al. (2002) noted that some participants did not tell
researchers of their reluctance to participate at the time but
raised their concerns with care staff once the researcher had
left. Some participants may opt in and out of the research on
the same day or in the same encounter (Hubbard et al. 2002).
Hellstrom et al. (2007) illustrate the realities of responding to
the changes in consent to participation with people with
dementia, describing a participant who changed their mind
on several occasions throughout their study. A participant in
the LSW study was at times very angry and frustrated with
any situation, be it care interventions or research and yet on
other occasions could express his pleasure at the same things
that had previously evoked anger. This demonstrates the
complexity of assessing consent in practice and research.
Cowdell (2008) observes that one participant in her study:
‘was clearly searching for the ‘right’ thing to say and her
anxiety at the thought of getting anything wrong was
palpable.’ (p. 32). Hubbard et al. (2003) also detail the
significance of non-verbal behaviours and verbal utterances in
assessing not only whether to continue to participate but how
or when to intervene.
Equally important in the LSW study was consent moni-
toring with the ward areas where the research was occurring,
and McCormack (2003) draws attention to the importance of
context in person-centred research. At times, difficult cir-
cumstances in the LSW study, such as an unexpected death or
high clinical activity, meant the research was put on hold.
Sometimes planned visits were cancelled at the last minute, it
would have been easy to express irritation, but was more
important to understand the reasons why and re-arrange
another visit. This helped maintain relationships with staff
and maintaining the research, albeit at a much slower pace
than anticipated.
Feedback and support
Throughout this process, it is essential that researchers keep
evidence to demonstrate that consent has been continually
monitored, Cowdell (2008) discusses the importance of
maintaining an audit trail explaining what decisions have
been made and the actions taken. Other ways of achieving
this are through communication sheets where care staff or
carers note any verbal or non-verbal behaviours following the
research encounter.
In the LSW study, care staff participants were kept
involved and updated by face-to-face contact, telephone
and email. In one ward area, a staff nurse acted as the
‘principal liaison person’ (Payne et al. 2007) and kept others
up-to-date with information and facilitating access, this was
not always possible to replicate in other areas. McCormack
(2003) believes that those not directly involved in the actual
research, for example all patients, ward staff and visitors,
must still feel involved. Field notes taken early on in the LSW
study detailed the efforts to ensure that everyone was aware
of the study. All interactions with participants and ward
areas were noted in field notes, and issues for further
discussion were taken to supervision. Issues relating specif-
ically to clinical practice were discussed with ward staff, and
managers and were also raised in the research group, and
invaluable advice was received.
It is important to consider the process of disengagement
from research with people with dementia, Hellstrom et al.
(2007) question the morality of building up trusting rela-
tionships required for engaging people with dementia in
research, when these are ultimately going to end. They
conclude that although there is no easy answer, sincerity and
honesty on the part of the researcher is crucial. McCormack
(2003) suggests a celebratory event, marking the completion
J McKeown et al.
1940 2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943

7. of the work such as lunch and drinks. Advice from a person
with dementia suggests leaving a stamped addressed envelope
to allow the participant to respond with anything that they
had forgotten during the interview. On leaving, the research-
er should aim to instil a sense of achievement in the person
with dementia and maybe follow this up with a ‘Thank you’
card which serves as a reminder of the research encounter
(McKillop Wilkinson 2004). Hellstrom et al. (2007)
describe the importance of accepting the offer of a coffee
and chat following an interview.
Discussion
As has been argued, dementia in itself does not deem a
person incapable of making an informed choice; however,
where capacity to consent is a potential issue, it is wise for
researchers to consider employing a method of process
consent. A strength of Dewing’s (2007) method is it requires
the researcher to be explicit and transparent about how
consent was maintained throughout the research process,
person-centred research with older people requires a:
‘sustained commitment to participants to ensure the value
of the person is held central’ McCormack (2003, p. 182).
This especially is relevant for people with dementia and
their carers to ensure that they do not feel ‘used.’ McKillop
and Wilkinson (2004) reflect on the McKillop’s experience
as a person with dementia and suggest that if the researcher
is not authentic, warm and genuine, then the person with
dementia may pick up on this and be uncomfortable in an
interview. Booth and Booth (1994) discuss the issue of
reciprocity in their interviews with people with learning
disabilities and propose that researchers provide information
of their own so the conversation is a two-way process.
Prompting a person-centred approach to research, McCor-
mack (2003) urges researchers to avoid the ‘hit and run’
approach and consider what should be offered to partici-
pants following the research, this might be a copy of their
recorded interview, sharing findings, ongoing supervision or
training for staff.
Power is an important issue and involves more than the
different status of researchers and the researched (Wilkin-
son 2002), particularly when the factors of age and
disability are considered. Furthermore, the different status
attributed to health professionals and researchers compared
to service users must be acknowledged (Proctor 2001).
Northway (2000) questions whether a non-hierarchical
researcher/participant relationship is ever possible or even
desirable, and Miller (1998) underlines the dangers of
participants divulging more then they may have wished if
they believe the relationship to be reciprocal. Power is also
an issue between the researcher and health professionals. In
the LSW study, there was evidence from interviews that
staff participated partly out of a wish to assist the
researcher.
Researchers wishing to involve people with dementia as
active participants in studies can gain from the experiences
of engaging people with dementia in non-research activities.
The Care Services Improvement Partnership – Older
People’s Mental Health Programme (2007) published a
toolkit to assist care providers and service users to consider
how best to involve people with dementia in developing
and evaluating services. Killick (2001) in discussing how
best to gain the views of people with dementia believes that
direct questioning can lead to anxiety and increased
confusion. He suggests that time and encouragement is
needed to ‘tease out’ their perspectives, he often represents
people’s views in poetry or narrative. In the context of
service evaluation, Murphy (2007) notes that people with
dementia can perceive an interview as a ‘test’ and feel
under pressure, he urges evaluators to prioritise the
relationship with the person over the asking of questions.
If discrepancies are evident in a conversation with the
person, it is important these are not ‘thrown in the person’s
face’ but dealt with through sensitive questioning (McKillop
Wilkinson 2004). Conversations arising out of other
activities, such as walking, hand massage and singing, have
been found to be both enjoyable and providing a promising
approach to gaining the views of people with dementia
(Allen 2001).
Approaches to process consent need to consider the design
and methods employed. Hubbard et al. (2003) reflect that
their research design did not provide the flexibility required
to respond to the individual’s needs to communicate, for
example, a participant might be more communicative on a
day the researcher was visiting another person, and the
researchers were unable to respond because of a rigid
protocol. The need for such flexibility is supported by
McKillop and Wilkinson (2004) who urge researchers to
recognise if a person is becoming tired and re-schedule a
further visit to complete the interview. It is helpful to
establish the ‘best time of day’ for the person with dementia
to participate and to avoid noisy environments which can be
distracting and make it harder for the person to concentrate.
McCormack (2003) summarises this, he suggests that person-
centred research involves researchers being sensitive and
prepared for the variety of unpredictable challenges that may
arise in the practice setting.
A limitation of process consent methods is the skill and
experience of the researcher in interacting and understanding
the needs of people with dementia, indeed in the climate of
Research for nursing practice Actively involving people with dementia in qualitative research
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943 1941

8. person-centred care and research perhaps researchers without
these skills should not be undertaking such research.
Conclusion
This paper has explored several perceived challenges that
may deter researchers from recruiting people with dementia
into research and has argued that these barriers need to be
considered in research with older people. A process consent
method has been appraised using examples from the litera-
ture and current ongoing research. The following points
summarise the findings from this paper:
• Barriers to recruitment and consent still persist, although
researchers exploring studies with people with dementia
are publishing their findings.
• For process consent models to become a reality and to re-
spect the personhood of people with dementia, researchers
and health care practitioners need to develop closer
working partnerships.
• The voice of the person with dementia is becoming more
visible in the literature, and these accounts must inform
development of future methods of engagement in both
research and clinical practice across a range of specialities.
Relevance to clinical practice
• Process consent models to research can equally be applied
to clinical practice, and researchers and practitioners can
learn from one another to develop ethical person-centred
approaches.
• Process consent models can both compliment and exceed
what is expected from MCA moving towards truly person-
centred care and research.
• People with dementia can and should be involved in service
design and evaluation if staff take steps to adapt methods
to allow active participation
Contributions
Study design: JM, AC, JR, CI; data collection and analysis:
JM, AC, CI, JR and manuscript preparation: JM.
Conflict of interest
The authors declare that they have no conflict of interests.
References
Allen K (2001) The Context. In Hearing the User’s Voice: Encour-
aging People with Dementia to Reflect on their Experiences of
Services (Murphy C, Killick J Alan K eds). Dementia Services
Development Centre, Stirling, pp. 2–5.
Barnett E (2000) Involving People with Dementia in Designing and
Delivering Care: ‘I Need to be Me!’. Jessica Kingsley Publishers,
London.
Bartlett H Martin W (2002) Ethical issues in dementia care
research. In The Perspectives of People with Dementia: Research
Methods and Motivations (Wilkinson H ed.). Jessica Kingsley
Publishers, London, pp. 47–62.
Berghman R Ter – Melen R (1995) Ethical issues in research with
dementia patients. International Journal of Geriatric Psychiatry
10, 647–651.
Booth T Booth W (1994) The use of depth interviewing
with vulnerable subjects. Social Science and Medicine. 39, 415–
424.
Bradford Dementia Group (2001) Well-Being Profiling. University of
Bradford, Bradford.
Buchanan A Brock D (1990) Deciding for Others: the Ethics of
Surrogate Decision Making. Cambridge University Press, New
York.
Care Services Improvement Partnership – Older People’s Mental
Health Programme (2007) Strengthening the Involvement of
People with Dementia: A Resource for Implementation. CSIP.
Available at: http://www.olderpeoplesmentalhealth.csip.org.uk/
silo/files/strengthening-the-involvement-of-people-with-dementia.
pdf (accessed 8 August 2008).
Clarke A (2006) Qualitative interviews: encountering ethical issues
and challenges. Nurse Researcher 14, 19–29.
Clarke C Keady J (2002) Getting down to brass tacks: a discussion
of data collection. In The Perspectives of People with Dementia:
Research Methods and Motivations (Wilkinson H ed.). Jessica
Kingsley Publishers, London, pp. 25–46.
Cottrell V Schultz R (1993) The perspective of the patient with
Alzheimer’s disease: a neglected dimension of dementia research.
The Gerontologist 33, 205–211.
Cowdell F (2008) Engaging older people with dementia in research:
myth or possibility? International Journal of Older People Nursing
3, 29–34.
Crossan B McColgan G (1999) Informed consent: old issues
re-examined with reference to research involving people with
dementia. Paper presented at the British Sociological Association
Annual Conference. Glasgow.
Dewing J (2002) From ritual to relationship: a person-centred
approach to consent in qualitative research with older people who
have a dementia. Dementia 1, 157–171.
Dewing J (2007) Participatory research: a method for process
consent with persons who have dementia. Dementia 6, 11–
25.
Dewing J (2008) Process consent and research with older persons
living with dementia. Research Ethics Review 4, 59–64.
Downs M (1997) The emergence of the person in dementia research.
Ageing and Society 17, 597–607.
Fisk J, Sadovnick A, Cohen C, Gauthier S, Dossetor J, Eberhart A
LeDuc L (1998) Ethical guidelines of the Alzheimer Society of
Canada. The Canadian journal of neurological sciences 25, 242–
248.
Grout G (2004) Negotiating consent in research. Nursing older
people 16, 18–20.
J McKeown et al.
1942 2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943

9. Hellstrom I, Nolan M, Nordenfelt L Lundh U (2007) Ethical and
methodological issues in interviewing pesons with dementia.
Nursing Ethics 14, 608–619.
Hubbard G, Downs M Tester S (2002) Including the perspectives
of older people in institutional care during the consent process.
In The Perspectives of People with Dementia: Research Methods
and Motivations (Wilkinson H ed.). Jessica Kingsley Publishers,
London, pp. 63–82.
Hubbard G, Downs M Tester S (2003) Including older people with
dementia in research: challenges and strategies. Aging Mental
Health 7, 351–362.
INVOLVE (2007) Good Practice in Active Public Involvement in
Research. Available at: http://www.invo.org.uk/pdfs/GoodPrac
ticeD3.pdf (accessed 1 May 2008).
Kayser-Jones J Koenig B (1994) Ethical issues. In Qualitative
Methods in Aging Research (Gubrium J Sankar A eds). Sage,
London, pp. 15–32.
Keady J Gilleard J (1999) The early experiences of Alzheimer’s
disease: implications for partnership and practice. In Dementia
Care: Developing Partnerships in Practice (Adams T Clarke C
eds). Balliere Tindall, London, pp. 227–256.
Killick J (2001) ‘The best way to improve this place’ – gathering
views informally. In Hearing the User’s Voice: Encouraging People
with Dementia to Reflect on their Experiences of Services (Murphy
C, Killick J Alan K eds). Dementia Services Development Cen-
tre, Stirling, pp. 6–9.
McCormack B (2002) The person of the voice: narrative identities in
informed consent. Nursing Philosophy 3, 114–119.
McCormack B (2003) Researching nursing practice: does person-
centredness matter? Nursing Philosophy 4, 179–188.
McKillop J (2002) Did research alter anything?. In The Perspectives
of People with Dementia: Research Methods and Motivations
(Wilkinson H ed.). Jessica Kingsley Publishers, London, pp.
109–114.
McKillop J Wilkinson H (2004) Make it easy on yourself! Advice
to researchers from someone with dementia on being interviewed.
Dementia 3, 117–125.
Miller T (1998) Shifting layers of professional, lay and personal
narratives. In Feminist Dilemmas in Qualitative Research (Ribbens
J Edwards R eds). Sage, London, pp. 58–71.
Murphy C (2007) User involvement in evaluations. In Evaluation in
Dementia Care (Innes A McCabe L eds). Jessica Kingsley
Publishers, London, pp. 214–229.
Northway R (2000) The relevance of participatory research in devel-
oping nursing research and practice. Nurse Researcher 7, 40–52.
Payne S, Field D, Rolls L, Hawker S Kerr C (2007) Case study
research methods in end-of-life care: reflections on three studies.
Journal of Advanced Nursing. 58, 236–245.
Proctor G (2001) Listening to older women with dementia: rela-
tionships, voices and power. Disability Society 16, 361–376.
Reid D (1999) Conscience and consent: involving people with
dementia in social research. Paper presented at Society for the
study of social problems annual meeting. Chicago, IL.
Reid D, Ryan T Enderby P (2001) What does is mean to listen to
people with dementia? Disability Society 16, 377–392.
Robinson E (2002) Should people with Alzheimer’s disease take part
in research? In The Perspectives of People with Dementia:
Research Methods and Motivations (Wilkinson H ed.). Jessica
Kingsley Publishers, London, pp. 101–107.
Sachs G, Stocking C, Stern R, Cox D, Hougham G Sachs R (1994)
Ethical aspects of dementia research: informed consent and proxy
consent. Clinical Research 42, 403–412.
Sherratt C, Soteriou T Evans S (2007) Ethical issues in social
research involving people with dementia. Dementia 6, 463–479.
Stocking C, Hougham G, Danner D, Patterson M, Whitehouse P
Sachs G (2006) Speaking of research advance directives: planning
for future research participation. Neurology 66, 1361–1366.
Sugarman J, Cain C, Wallace R Welsh-Bohmer K (2001) How
proxies make decisions about research for patients with Alzheimer’s
Disease. Journal of the American Geriatrics Society 49, 1110–1119.
Telford R, Beverley C, Cooper C Boote J (2002) Consumer
involvement in health research: fact or fiction? British Journal of
Clinical Governance. 7, 92–103.
Usher K Arthur D (1998) Process consent: a model for enhancing
informed consent in mental health nursing. Journal of Advanced
Nursing. 27, 692–697.
Wilkinson H (2002) Including people with dementia in research:
methods and motivations. In The Perspectives of People with
Dementia: Research Methods and Motivations (Wilkinson H ed.).
Jessica Kingsley Publishers, London, pp. 9–24.
Research for nursing practice Actively involving people with dementia in qualitative research
2010 The Authors. Journal compilation 2010 Blackwell Publishing Ltd, Journal of Clinical Nursing, 19, 1935–1943 1943