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Article
People with Dementia Who Go Missing:
A Qualitative Study of Family Caregivers
Decision to Report Incidents to the Police
Karen Shalev Greene, Charlotte L. Clarke, Francis Pakes and
Lucy Holmes
Abstract Walking and exercising are an important part of living well with dementia. People with dementia may have
an inability to recognize familiar places, find a familiar location, or become disoriented and are more likely to become
missing. The aim of this article is to identify what factors influence family caregivers of people with dementia reporting
them missing to the police. We used a qualitative approach based on semi-structured interviews of 12 family caregivers
of people with dementia in UK. We identify four factors that inhibit family caregivers from reporting a missing person
incident to the police and three factors that prompt family caregivers to call the police. We discuss implications for
improved policy and practices by law enforcement agencies, social services, health services, and non-government
organizations.
Introduction
This study examines the decisions of family care-
givers of people with dementia as to whether or
not report a missing person incident to the police.
It is estimated that between 800,000 to 850,000
people are living with dementia in the UK
(Alzheimer’s Research UK, 2017; House of
Commons Library, 2016). The National Police
Improvement Agency (NPIA) (2011) indicates
that ‘at least 40, 000 people with dementia in UK
will go missing for the first time every year’ (NPIA,
2011) and a minority of those go missing repeat-
edly. There is discrepancy as to the exact numbers.
The National Crime Agency report that 20% of all
missing adults in the UK are repeated cases.
McShane et al. (1998) found that 5% (5 out of
106) of people with dementia went missing re-
peatedly. On the other hand, Bantry White and
Montgomery (2015) found that 27% of people
with dementia (29 out of 106 individuals) in
University of Portsmouth, 141 High Street, St. George’s Building, Portsmouth, PO1 2HY, UK.
All-Party ParliamentaryE-mail: Karen.shalev-greene@port.ac.uk; francis.pakes@port.ac.uk
University of Edinburgh, Doorway 6, Medical Quad, Teviot Place, Edinburgh, EH8 9AG, UK.
E-mail: Charlotte.Clarke@ed.ac.uk
Missing People, 284 Upper Richmond Road West, London, SW14 7JE, UK. E-mail: lucy.holmes@mungos.org;
francis.pakes@port.ac.uk
1
Policing, Volume 0, Number 0, pp. 1–13
doi:10.1093/police/paz007
ßThe Author(s) 2019. Published by Oxford University Press.
All rights reserved. For permissions please e-mail: journals.permissions@oup.com
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their sample from one UK police force went miss-
ing more than once.
People with dementia may have an inability to
recognize familiar places, find a familiar location,
or become disoriented and are unable to find the
way back to where they travelled from or the loca-
tion they were aiming to arrive at (Rowe and
Bennett, 2003; Hillier et al., 2016). The American
Alzheimer’s Association (2011) found that 6 out of
10 people with dementia wander (i.e. venture into
the community without supervision of a caregiver)
and get lost in the community (Rowe and Glover,
2001).
Consequently, Furumiya and Hashimoto (2015)
claim that all people with dementia who can walk as
well as those who continue to drive are at elevated
risk of getting lost or going missing. It is important
to remember that wandering and going missing are
inherently different in terms of frequency, timing
and its nature (Rowe et al., 2015). Nonetheless, the
American Alzheimer’s Association (2011) argues
that it is likely that the majority of people with de-
mentia will have at least one missing incident
during the course of their disease.
In the UK, a person is considered missing when
their whereabouts cannot be established, until
located, and their well-being or otherwise con-
firmed (College of Policing, 2016). Unlike practices
in some countries, across the UK, there is no
required time delay of 24–72 hours before reporting
a person missing to the police. Edkins (2011) and
Parr and Fyfe (2013) assert that ‘missingness’ is
defined from the point of view of the reporting
person. This means that a person may be missing
when they themselves do not consider themselves
to be missing at all. For example, where the person
has changed their plans but did not communicate
that to their relative.
In other circumstances, someone may not be
missing but themselves experiencing feeling lost.
For example, becoming separated from family or
friends in a shop or a crowded street and not know-
ing where they are; or perhaps being unable to find
their way home from routine outings, such as a
daily walk. They may feel lost but will not be con-
sidered missing until they do not arrive at their
expected location.
According to a UK based study, the vast majority
of people with dementia who are reported missing
are found safe and well. Bantry White and
Montgomery (2014) found that 15 out of 281 (i.e.
5%) of people with dementia who were reported
missing came to harm. This is a much higher
figure than the national average of harm suffered
by missing adults which stands on 2.9% (National
Crime Agency, 2017).
When people with dementia go missing they are
exposed to particular risks, such as dehydration,
injuries such as bruising and abrasions, orthopaedic
and soft tissue injuries, hypothermia, hyperther-
mia, and death. The risks of harm while missing
are associated with the age of the missing person,
weather conditions, the terrain, time of day, length
of time missing and the mode of transport used
during the missing episode (Ali et al., 2016; Aud,
2004; Rowe et al., 2004).
Rowe and Bennett (2003) emphasize the import-
ance of an intensive search as people with dementia
may succumb to death by exposure and drowning
relatively quickly. Rowe et al., (2011) analysed 325
newspaper reports of people with dementia who
went missing in the community. They found that
30% of their sample was found dead. The high per-
centage was not reflective of a typical ratio in the
wider population and was a result of their sampling
strategy. However, their findings suggest that those
who died were found closer to the place last seen
and took longer to find than those who were found
alive. Of those found alive, 72% were found by the
next day while only 40%of those dead were found
by the next day. Of those not found by the next day
51% were found alive and 49% were found dead.
For those not found until at least the fifth day after
missing, only 20% were found alive.
This sense of urgency is supported by iFIND,
which is an operational tool designed to improve
the speed and effectiveness of searches for missing
persons in the UK (Eales, 2016). Cases within the
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dataset include people with dementia that can still
walk considerable distances even though they may be
described as having mobility problems. It also in-
forms officers that missing persons with dementia
have been located lying in fields, ditches and
bushes where they have fallen over and were not
able to get back up. Officers are also asked to be
aware if there are incidents where the person living
with dementia may have a desire to take their own
life (p. 56). It is therefore possible that any delay in a
missing person being reported increases the length of
time that the person is missing, thus putting them at
greater risk (Bantry White and Montgomery, 2015;
UK Missing Persons Bureau, 2013).
Missing person incidents can have additional
consequences, such as loss of independence. They
may trigger institutional placements for the person
with dementia. Many caregivers are relatives of the
person with dementia (Department of Health,
2015), who are closely involved in maintaining
their safety (Clarke et al. 2011; Mace and Rabins,
2017) and the stress and anxiety associated with
conjoining the carer role and family relationships
(Draper, 2013; Zwaanswijk et al., 2013) can be exa-
cerbated by a missing incident. This may lead to the
institutionalization of the person with dementia in
a care home or within their own home, with care-
givers locking people with dementia inside the
house and restricting their movement outdoors
(Askham et al., 2007) and infantilizing them
(Marson and Powell, 2014; Salari, 2006).
Additionally, missing person incidents can also
lead to an increased use of law enforcement and
search resources (Rowe et al., 2015).
McShane et al. (1998) warned that police become
aware of only a third of missing person cases invol-
ving people with dementia while approximately
two thirds of these cases are never reported to the
police. Bantry White and Montgomery (2015)
found that only 0.5% of the regional dementia
population estimates, in their study, was reported
missing to police in 2008. Therefore, it is reasonable
to assume that the majority of people with demen-
tia who go missing are never reported to the police.
This is an important issue to explore, because lack
of reporting of such incidents can delay search
activities and will lead to inaccurate official data
(Bosick et al., 2012; Tarling and Morris, 2010).
Managing the possibility of a loved one going
missing is part of the conflict caregivers face between
the prevention of harm and the protection of a per-
son’s right to autonomy (Robinson et al., 2007), par-
ticularly since walking and exercising are an
important part of living well with dementia (Bantry
White and Montgomery, 2015; Clarke et al., 2011).
The extent to which the process of providing
care to a family member with a dementing illness
affects the physical and emotional well-being of
the caregiver has received a great deal of attention
in the literature. Common emotions experienced
by caregivers include anxiety, rage, exhaustion, de-
pression and guilt (Connell et al., 2001; Gonyea et
al., 2008; Rosa et al., 2010; Sanders et al., 2008).
Therefore, caregivers have a heightened need for
information that will assist and support them
making decisions related to the freedoms and au-
tonomy given to a family member with dementia.
Nevertheless, and despite the likelihood of people
with dementia going missing, little is known about
family caregivers’ decision-making process and
willingness to approach the police and report
their relative as a missing person.
Bearing in mind the risks people with dementia
who go missing are exposed to, and how under-
reported such incidents seems to be, a better under-
standing of prompting and inhibiting factors
influencing family caregivers to report missing
incidents may lead to reducing unnecessary delay
in reporting practices. Thus, police officers will be
able to initiate a search and find missing persons
with dementia faster and return them safely.
Methods
Study design
The study utilized a qualitative method design,
using semi-structured interviews.
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Participants
The study is based on interviews with 15 family
caregivers of a person with dementia. The charac-
teristics of the caregivers and relationship to the
person with dementia are presented in Table 1.
We recruited participants who were related to the
person with dementia. The person with dementia
had to be living at home, either on their own or in
their relative’s home. Due to estimates of consider-
able under-reporting of missing person incidents to
the police, family caregivers were interviewed re-
gardless of whether or not they reported a missing
incident to the police. This was done to enable cap-
turing the true experience of caregivers.
The wide inclusion strategy was also done in
order to avoid the possibility that caregivers who
may not regard an experience as a missing person
incident would exclude themselves from the study
by not making contact. The exclusion criteria were
caregivers who were not related to the person with
dementia or that the person with dementia was
living in a care facility. Three caregivers who did
not experience missing episodes were excluded
from the analysis. Thus, the sample we discuss in
this article comprises 12 participants.
Participants were recruited via a snow-ball out-
reach strategy that finds an individual or a source
that has the desired characteristics and uses the
person or organizational social networks to recruit
similar participants in a multistage process. After
the initial source helps to recruit respondents, the
respondents then recruit others themselves. This
technique was chosen as it helped the authors
gain access to this hard to reach population
group. The use of this sensitive recruitment strategy
is both appropriate and effective in enlisting the
involvement of family caregivers of a vulnerable
population (Sadler et al., 2010).
A purposive sample was used based on the char-
acteristics of the population, e.g. living with de-
mentia and are on the mailing list of at least one
of the non-governmental organizations we ap-
proached, including The Alzheimer’s Society,
Missing People, Carers UK, and Age UK.
Information about the study and contact details
of the principal researcher were circulated via an
electronic flyer, and they distributed the informa-
tion through their networks. Where relevant, par-
ticipants were asked to share information about the
study with other family caregivers who were part of
their own social network. This was done in order to
maximize the variance in the caregiver sample.
The authors acknowledge that these organiza-
tions are not engaged with by communities of
ethnic minorities (e.g. BME) as much as they are
by non-BME minority communities, with
Table 1: Demographic characteristics of the participants
Participant’s pseudo name Gender Relation to person with dementia
1 Mark Male Husband caring for wife
2 Elliot Male Husband caring for wife
3 Paul Male Husband caring for wife
4 Kate Female Daughter-in-law caring for mother-in-law
5 Carol Female Wife caring for husband
6 Brenda Female Wife caring for husband
7 James Male Husband caring for wife
8 Claire Female Daughter caring for mother
9 Julie Female Daughter caring for mother
10 Alison Female Daughter caring for mother
11 Jane Female Daughter caring for mother
12 Stuart Male Husband caring for wife
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implications for recruitment for this study (All-
Party Parliamentary Group on Dementia, 2013;
Prior, 2013).
Participants lived across UK (Hertfordshire,
London, Merseyside, Norfolk, North Lancashire,
Nottinghamshire, and Surrey). Family caregivers
were caring for people living with different types
of dementia, and with different levels of function-
ing, and of different age groups. Due to ethical re-
strictions explained below it is not possible to
report on the demographic background in more
detail.
Family caregivers who were interested in taking
part in the study opted in and initiated contact with
the first author via email or phone. The aims of the
study were explained and a formal invitation letter,
an information sheet and a consent form were sent
to participants electronically. Once participants
read the material and verbally agreed to take part
in the study, an interview was carried out by one of
the two interviewers (first and fourth author).
Data collection
Fifteen semi-structured interviews were conducted
between August 2014 and December 2014.
Interviews were conducted in a place of the partici-
pants’ choice: 12 in caregivers’ homes, two inter-
views by telephone, and one interview in a cafe
´.
A topic guide was used to ensure that all the
relevant topics were discussed. The content of the
topic guide was based on discussions within the re-
search team: the context of being a carer to the
person with dementia; carers’ understanding of
the concept of going missing; missing prevention
activities by carers; response to a missing incident;
and the impact of a missing incident on the carers
and their family.
Caregivers were invited to describe any missing
incidents they had experienced, and explain
whether or not they reported them to the police
and why. Where caregivers did not have previous
experience of a missing incident, they were asked
hypothetically whether they were likely to make
such reports to the police and reasons in favour
and against it. Caregivers were given a copy of the
interview schedule if they wished to keep it, as well
as a copy of the consent form with contact details of
the interviewer.
Data analysis
All interviews were audio recorded and anon-
ymized. They were transcribed verbatim by an in-
dependent transcription company vetted by the
University of Portsmouth. Two authors (first and
fourth authors) were involved in the entire process
of data analysis. They read the transcripts individu-
ally and analysed the interviews they conducted.
They verified each other’s coding. Transcripts of
the interviews were analysed using thematic ana-
lysis. Thematic analysis was considered to be the
most appropriate method for this study as it is a
qualitative approach that enables an in-depth
understanding of the phenomenon. It offers a com-
mitment to participants’ viewpoints while conduct-
ing inquiries with minimum disruption to the
natural context of the phenomenon. Thus, report-
ing of findings can be written in a literary style, rich
in participant commentaries (Vaismoradi et al.,
2013). The coding process started with the broad
topics of the interview followed by general themes
for each topics followed by sub-themes. The soft-
ware programme NVivo version 10 was used to aid
in the coding and analysis process. The final analysis
was shared and discussed within the research team,
which helped to enhance the quality of the analysis.
Ethical considerations
The study received ethical approval from the
University of Portsmouth Ethics Committee.
Anonymity and confidentiality of caregivers were
assured within the boundaries of professional re-
sponsibility on the part of the researchers to report
any situation in which the safety of an individual
was of concern. Any identifying details have been
changed. Given that the people with dementia did
not consent to take part in the study, the ethical
committee prohibited the researchers from asking
or reporting on the type of dementia people were
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living with, as that was considered to be a breach of
their privacy.
Findings
Understanding of ‘missing’
At some point, the 12 caregivers were faced with the
decision whether or not to call the police and report
their relative as missing. Since this decision was
based on their own assessment as to whether they
considered their relative to be missing or not, we
asked our caregivers how they defined the term
‘missing’. All caregivers in this study defined
‘missing’ from their point of view rather than
refer to an official definition by the police or
other agencies and indicated that they considered
the person with dementia missing when they did
not know where they were.
Caregivers regarded two further factors as indi-
cative of a person going missing. First, caregivers
intuitively considered the person’s vulnerability
and assessed the potential risk or harm to the
person with dementia. For example, are they able
to find their way back or not, are they able to ask for
help. For example,
When you know their limitations, that
then’s a scary one. So I think limita-
tions and your ability to do things
makes a massive difference to whether
it’s a worry or not. (Brenda)
Secondly, caregivers considered the length of time
that passed from the moment they last saw the
person with dementia. These two factors varied be-
tween caregivers, and between missing incidents in
cases where the person with dementia went missing
more than once. For some, it was the moment they
lost eye contact with them. For example,
Out of sight for me was going missing.
(Claire)
For others, it was a longer time period that followed
an initial search. For example,
I know my mum goes out, and some-
times she doesn’t answer the phone.
She’s not in a mood to speak. So I
tend to just perhaps if you’ve got a
more optimistic frame of mind, I tend
to think she’s okay and I will just keep
persevering. (Alison)
Alison points out that family caregivers may differ
in their reaction to the same event and their assess-
ment of potential risk to their relative, which would
lead to a different reporting decision, saying that
‘My sister would drive down there and ring the
police ....’ In this instance, Alison would not
have made a report whereas her sister would do so.
Missing person incidents
Out of the 12 family caregivers, nine had a repeated
experience (two or more times) of the person with
dementia going missing. One caregiver stated that
his wife had been missing approximately 25 times.
Of the 12 caregivers, only seven reported incidents
to the police, and two of these caregivers had made
several reports. As in Table 2, 42 out of 52 missing
incidents discussed by the participants were not re-
ported to the police.
Since there is no minimum time to wait until a
missing person report can be made any time, delay
Table 2: Missing person incidents
Participant’s
name
Incidents of
becoming
missing (N)
Missing incidents
reported to
the police? (N)
2 Mark 8 2
3 Elliot 1 1
4 Paul 25 1
5 Kate 2 1
7 Carol 1 0
8 Brenda 2 0
9 James 3 1
11 Claire 1 0
12 Julie 3 3
13 Alison 2 0
14 Jane 2 0
15 Stuart 2 1
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in reporting a missing person to the police is likely
to be indicative of practical factors (e.g. not carry-
ing a mobile phone) or internal factors that influ-
ence that decision. Hence, this issue was important
to examine. Caregivers described missing instances
that lasted from a few minutes to several hours or
even a day. Missing incidents could occur while
travelling a familiar route, such as a park or on
the way to their local church or in more crowded
environments such as local shops, restaurants, or a
swimming pool while on a family holiday. For
example,
I parked quite close to the bakery, and
she went to get a loaf of bread and
couldn’t find her way back to the car.
(Stuart)
Decision-making process involved with
reporting a missing person incident to the
police
Below is a summary of factors that caregivers iden-
tified to influence their decision whether or not to
report their relative as missing to the police. There
were three key factors that prompted caregivers to
call the police: protection of the person with de-
mentia; an expectation that the police would be
helpful by offering advice; and an expectation that
the police would be successful in locating their
relative.
Protecting the person with dementia. The
caregivers we interviewed emphasized consistently
throughout the interviews, the vulnerability of
person with dementia and how worried and anx-
ious they felt once they realized that their relative
was missing (for some, this was an anticipatory
anxiety as their relative had not become missing).
It was clear to them that if they did not know where
the person was, they were at risk and needed to be
found as soon as possible. Thus, an overriding
reason for reporting a missing incident to the
police was to protect their relative from emotional
or physical harm. For example,
She potentially is starting to get
stressed, because she doesn’t know
where she is. (Mark)
See my problem was if she fell over and
the big danger of course is if she falls
over she could break her leg or hip or
something of that nature, and she
would just be lying there. (Elliot)
Expecting the police to be helpful by offer-
ing advice. While some caregivers expressed a
sense of helplessness at not being able to find the
person and needing official assistance, two care-
givers stated that they called the police expecting
to maintain responsibility for the search them-
selves. They were not sure how to proceed once
they exhausted their initial search and made a call
expecting to receive only advice and guidance and
not that the police would ‘take over’ the search ef-
forts. In those cases, caregivers called the 101
number (non-emergency number) rather than
999 (emergency number). For example,
I got to the point where I didn’t know
what to do, and so ringing them for
advice. What do I do now? she’s been
gone for two and a half hours, what do I
do now? (Mark)
The police response, in all cases described by the
participants, was to escalate the search, sending of-
ficers to take a statement and caregivers were given
an incident number.
Expecting the police to be successful. Most
caregivers called the police once they had exhausted
their initial search and were unable to locate the
person on their own. A missing person report not
only offered them hope that their relative would be
found but also offered them some reassurance that
more was being done to find them.
We thought that was the best thing to
do, because we had tried on our own.
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Obviously I ...the first thing I thought
is that they can cover much more
ground than what you can and they
can organise things so that more
ground is covered. (Elliot)
Several caregivers had multiple experiences of re-
porting an incident of being missing to the police.
They explained that these previous experiences
were positive and that officers were polite and sup-
portive and found the missing person safely. Thus,
they were inclined to make a new report because
they trusted the police to be successful in locating
the missing person safely again.
All caregivers in our sample instigated an initial
search once they realized the person with dementia
was missing. Fortunately, in most of the incidents
related by caregivers, the missing person was found
at an early stage and there was no need to report the
incident to the police. This was sometimes achieved
through the assistance of the public who came
across the person with dementia and helped them
back home or informed security staff or the police.
While a person was missing, most caregivers in
our sample expressed some reluctance to report a
missing incident to the police immediately. Of the
52 missing incidents participants experienced, they
only made 10 missing person reports (see Table 2).
Despite the modest sample size, this finding offers
an opportunity to consider that only a fifth of miss-
ing person incidents was reported to the police.
This is consistent with McShane et al. (1998) who
argue that there is significant under-reporting of
such incidents. Furthermore, of these 52 incidents,
33 (17%) were experienced by just two of the par-
ticipants, suggesting that for some people, being
missing was a recurrent event, leading to being
faced with this type of decision multiple times.
This finding supports McShane et al., (1998) and
Bantry White and Montgomery’s (2015) assertion
that a minority of people with dementia will go
missing repeatedly.
The findings uncover four inhibiting factors to
contacting the police: (1) feelings of embarrassment
and guilt; (2) fear of disapproval or judgement by
police; (3) fear of negative reactions by person with
dementia; and (4) a distrust of the police and desire
to protect the relative.
Embarrassment and guilt. One of the most
common and important factors influencing a deci-
sion to not call and report the incident to the police
or to delay calling was caregivers’ sense of guilt that
their relative was potentially unprotected and
unsafe because they (in their mind) failed to keep
them safe.
And then I felt irresponsible. It was a
learning thing. It’s like, well, you
wouldn’t take your eye off a baby. It’s
exactly the same thing. Probably worse
because she’s not going to grow out of
it. She’s going to get worse. (Kate)
It was my mistake. (Paul)
Fear of disapproval or judgement by
police. Given the sense of responsibility and
guilt, experienced by caregivers, a few expressed
fear that making a report to the police would lead
to judgement of their ability to care for their
relative.
I think oh my god it’s the police. And then I
thought am I going to be in trouble ... (Julie)
Given that several of the caregivers expressed a
sense of ownership and responsibility for the search
for their relative with dementia, they were unclear
as to whether they were expected, even ‘allowed’ to
call the police. Thus, they feared they would be
judged for wasting police time.
Actually, possibly expecting them to
say, well, we know, she’s an adult, she
hasn’t been gone long enough. I was
quite pleased when they said somebody
was going to come. (Mark)
Fear of negative reactions by person with
dementia. For some caregivers, calling the
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police was very worrying, as they feared the person
with dementia’s reaction on finding out the police
were called. This would have possibly led to the
person with dementia being upset with them,
increased tensions with other family members
who may have reacted differently, and possibly
loss of trust by the person with dementia. For
example,
But, you know, if she was upstairs in a
neighbour’s, for instance, and suddenly
she comes downstairs and there’s sort
of, you know, half the police force
there, she wouldn’t be happy ... And
my mum was very, very embarrassed
about that and then feared that be-
cause, you know, the authorities knew
about this incident that she would be
sort of carted off. (Alison)
Distrust of the police and desire to protect
their relative. Due to the deterioration of cog-
nitive ability associated with dementia, some of the
caregivers described their fear for their relative if
they came in contact with the police or members
of the public as well as a concern that their relative
would become frightened or distressed. This was
due to lack of confidence that police officers
would know how to approach the person with de-
mentia without distressing them. Thus, they pre-
ferred not to alert the police and try to find the
person they cared for by themselves. For example,
I’m just very anxious that because [her
husband] can’t communicate and he
might find it quite scary ... I think it
would be nice to build a relationship
with the police locally ... and have a
chat with them so that maybe we
know who the people are. So if I said
to somebody, here’s a picture of my
husband, this is him. So that at least
they’re aware and if they see some-
body acting strangely they don’t
automatically jump on them, handcuff
them and Taser them or whatever else
they might do. (Brenda)
Discussion
The study examined factors influencing whether or
not family caregivers of people with dementia will
report missing person incidents to the police. This
is an important issue to explore as it has received
little attention to date. Our data suggest that only a
fifth of missing incidents were brought to the atten-
tion of the police. This finding supports McShane
et al.’s (1998) claim of considerable under-report-
ing of missing incidents of people with dementia to
the police.
The data also suggest that the majority of care-
givers (9 out of 15) experience more than one such
incident. This is a much higher percentage than
McShane et al. (1998) and Bantry White and
Montgomery (2015) report. It may be a result of
our small sample size, but it may also be due to the
fact our sample included caregivers who did not
report incidents to the police. We therefore
propose that the ‘true’ rate of missing of people
with dementia, whilst cared for by relatives, may
be substantially higher than previously assumed.
It is most important to realize that where there is
a reluctance to report, sadly, lives may be put at risk
unnecessarily.
Caregivers with experience or concern about
being missing may have been more inclined to par-
ticipate in this research, but none-the-less, these
findings serve as a reminder of the vulnerability
of people with dementia, and while most are
found safe, as indicated by previous literature
(Rowe and Bennett, 2003; Rowe et al., 2011; Eales,
2016), several will come to harm or die as a direct
consequence of being missing.
Managing a missing incident of a person
with dementia is a type of difficult proxy decision
caregivers must make on behalf of their relative
with dementia. Thus, there is evident need for
Study of family caregivers of people with dementia Article Policing 9
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practitioners, such as GPs, law enforcement agen-
cies and non-governmental agencies, to communi-
cate openly with caregivers about the likelihood of a
missing incident occurring as well as prevention
strategies they may wish to consider in order to
safeguard their relatives. For example, relieving
boredom and continuing a habit or interest
(Safeguarding Hub, 2017), using assistive technol-
ogies, or arranging for twenty four hour care at
home, installing door alarms or activity monitors
and recorders, etc. (UK Missing Persons Unit
(2019)).
Our results suggest four factors inhibit family
caregivers from calling the police when their rela-
tives go missing (e.g. costs): embarrassment and
guilt, fear of disapproval or judgement by police,
fear of negative reaction by the person with demen-
tia, distrust of police and the desire to protect their
relative.
These four factors reflect caregivers overall desire
to protect the person with dementia as well as
themselves from any negative consequences of re-
porting missing incidents to the police. The find-
ings also confirm the negative emotional effects
caregivers can experience, as they discuss their
fears and sense of guilt and responsibility. These
are common emotions experienced by caregivers
which can profoundly impact their own well-
being (Connell et al., 2001; Gonyea et al., 2008;
Rosa et al., 2010; Sanders et al., 2008).
Conversely, three factors prompt relatives to call
the police when the person with dementia is found
to be missing (e.g. incentives): the desire to protect
the person with dementia, expecting the police to
be helpful, and expecting the police to be successful
in finding the missing person.
The caregiver’s sense of responsibility for the
safekeeping of the missing person was identified,
in this study, as the dominant factor in their re-
sponse to their relative going missing, as most par-
ticipants in our study immediately initiated their
own search and recruited family, friends and neigh-
bours to assist them. It was only when they were
unable to find the person that they considered
calling the police. This ranged from minutes to sev-
eral hours after the person went missing.
Furthermore, this study demonstrates that
family caregivers intuitively understand the con-
cept of ‘missing’ that is consistent with police and
academic definitions in the sense that their rela-
tives’ whereabouts cannot be established, they
have not been located and their welfare has not
been confirmed (College of Policing, 2016; Rowe
et al., 2015). However, caregivers’ perception of
the term is subjective and, as demonstrated in the
study, the same incident can be judged differently
by various family caregivers.
Furthermore, caregivers assessment of the situ-
ation depends on their judgement of the likely risk
of harm to person with dementia. This depends on
the context of the situation as well as how vulner-
able they deem their relative to be. Since dementia
is a degenerative disease, people with dementia may
lose abilities they previously had. Thus, a person
who went missing at one point and was deemed
relatively safe by their caregiver may now be con-
sidered highly vulnerable, leading the caregiver to
report the incident to the police immediately.
The findings from this study may lead to policy
and practice changes. The College of Policing’s
Authorised Professional Practice (APP) guidance
and training should be updated to increase aware-
ness about the issue amongst all officers but par-
ticularly response officers, neighbourhood policing
teams, and missing person teams. This is to ensure a
non-judgemental response when a person with de-
mentia is reported missing and to ensure officers
know how to work with family caregivers and how
to approach people who are living with dementia
and have been missing.
Neighbourhood policing teams should consider
the issues discussed in this study when building
relationships within the community in which they
work. This could have two positive effects. First, it
will increase caregivers’ awareness about the risks of
people with dementia going missing and the im-
portance of reporting them missing to the police.
Second, targeted events or communications could
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actually allow the police to ‘get to know’ people in
the area who are at high risk of going missing and,
therefore, could increase confidence and trust of the
police by caregivers and the individual with demen-
tia. This may not be practicable in some areas be-
cause of the expanse that neighbourhood teams
cover, but could be hugely valuable where possible.
The police should undertake a public awareness
campaign with the dual aims of encouraging people
to report their loved one missing if they are con-
cerned and reassuring the public that they know
how to support people with dementia. This may
be achieved as part of the Herbert Protocol
scheme (Mayor’s Office for Policing and Crime,
2018), where professional and family caregivers as
well as friends can complete, in advance, a form
recording all vital details (such as medication
required, mobile numbers, places previously
located, a photograph, etc.) in the event of a
person with dementia going missing.
This study has a number of limitations, which
must be considered. The primary limitation is
that the results are drawn from a modest sample
of participants who experienced a missing person
incident. Furthermore, the sample does not repre-
sent all ethnic groups living in the UK, who may be
influenced by other factors. Finally, due to ethical
restrictions, it was not possible to learn more about
the people with dementia and their background,
such as age, type of dementia, etc.
Conclusions
The study proposes that there is considerable under-
reporting of missing person incidents to the police by
family caregivers of people with dementia. The study
also found a high percentage of repeated missing
person incidents that were not reported to the
police. The study helps us to identify push-and-
pull factors involved with the decision to report a
missing person incident to the police.
In order to improve reporting practices and
reduce delays in reporting missing person
incidents, family caregivers of people with demen-
tia should be recognized as requiring support and
assistance as they are faced with the possibility of
their relative going missing. Relevant agencies may
benefit from proactive community work, which re-
assures family caregivers of the advantages of re-
porting missing person incidents. For example,
Health Care and/or Social Services professionals
should discuss the possibility of a person with de-
mentia going missing with caregivers, consider pre-
vention strategies as well as discuss what caregivers
should do in case their relative goes missing.
Additionally, when a family caregiver reports a
missing person incident, police officers and search
and rescue volunteers should be reassuring and
non-judgemental and should explain to the care-
givers how a search is carried out and the process of
investigation as well as reassure them they will not
be in trouble and that they are there to assist them.
They should also be mindful; caregivers may have
important information about how best to approach
and communicate with the missing person, con-
sidering their type of dementia and level of
functioning.
Funding
The authors disclosed receipt of the following fi-
nancial support for the research, authorship, and/
or publication of this article: this study was funded
by the University of Portsmouth, under Faculty of
Humanities Strategic Funding Scheme 2013–15.
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