What next? Experiences of social support and signposting after a diagnosis of dementia

Abstract

The experience of being diagnosed with dementia can be shocking. This may be compounded if individuals feel that there is a lack of signposting onto further avenues of
support following diagnosis. This study, then, examines how social support is promoted in the diagnostic process. Using purposive sampling and a grounded theory
approach, semi-structured interviews were conducted with 13 members of a dementia empowerment group in Northern Ireland, discussing both their experience
of diagnosis and also their subsequent group membership. Respondents reported
both positive and negative experiences of diagnosis. Feelings of shock and bewilderment accompanied this process. Only one was able to identify a direct link between
a medical professional and referral to the empowerment group, others being referred
by other health professionals or dementia navigators. The study indicates that, due
to disorienting feelings, one diagnostic consultation is insufficient to explain both the
diagnosis and offer follow-up support. Therefore, more explicit links to navigators
or other services need to be made at the point of diagnosis to prioritise information
regarding opportunities for social engagement for those being diagnosed.

Full text

Health Soc Care Community. 2020;00:1–10.
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1wileyonlinelibrary.com/journal/hsc
1 | INTRODUCTION
Being diagnosed with dementia is life changing. Diagnosed individu-
als repor t conflic ting emotions such as shock, relief and affirmation
(Bronner, Perneczky, McCabe, Kurz, & Hamann, 2016), embarrass-
ment and distress (Aminzadeh, Byzsewski, Molnar & Eisner, 2007),
and shame , aggression and d enial (Low, McGrath , Swaffer, & Brodaty,
2019). Longer term side effects include depression, isolation and de-
creased self-esteem (Rahman & Howard, 2018). As such, opportuni-
ties to offer suppor t are especially valuable upon diagnosis. While
social support is recognised within the United Kingdom's (UK) local
and national policies (Depar tment of Health, 2016; DHSSPSNI,
2011), there is sometimes a fragmented approach to dealing with
diagnosed individuals’ social needs, with informal carers, rather than
professionals, feeling they take the lead (Bieber et al., 2018). This
article's purpose, then, is to investigate experiences of individuals
recently diagnosed with dementia in Northern Ireland (NI) regarding
how they were signposted on to social support.
1.1 | Context
There has been a notable rise in UK dementia diagnoses since the
launch of a National Dementia Strategy in 20 09 (Donegan et al.,
2017), increasing by 50% since 2012 (Depar tment of Health, 2016).
Received: 5 July 2019
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Revised: 17 December 2019
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Accepted: 12 Januar y 2020
DOI : 10.1111 /hs c.1 2949
ORIGINAL ARTICLE
What next? Experiences of social support and signposting after
a diagnosis of dementia
Robert J. Hagan PhD, BSc (Hons), Senior Lecturer in Social Work
This is an op en access article under t he terms of the Creat ive Commons Attributio n License, which permits use, dist ribution and reproduc tion in any medium,
provide d the orig inal work is proper ly cited .
© 2020 The Authors . Health and Social Care in t he Community publishe d by John Wiley & Sons Ltd
School of Social C are and Social Work,
Manchester Metropolitan University,
Manchester, UK
Correspondence
Rober t J. Hagan, Senior Lecturer in Social
Work, Sch ool of Social Care a nd Social
Work, Manchester Metropolitan University,
Manchester, UK.
Email r.hagan@mmu.ac.uk
Abstract
The experience of being diagnosed with dementia can be shocking. This may be com-
pounded if individuals feel that there is a lack of signposting onto further avenues of
support following diagnosis. This study, then, examines how social support is pro-
moted in the diagnostic process. Using purposive sampling and a grounded theory
approach, semi-structured interviews were conducted with 13 members of a de-
mentia empowerment group in Northern Ireland, discussing both their experience
of diagnosis and also their subsequent group membership. Respondents reported
both positive and negative experiences of diagnosis. Feelings of shock and bewilder-
ment accompanied this process. Only one was able to identify a direct link between
a medical professional and referral to the empowerment group, others being referred
by other health professionals or dementia navigators. The study indicates that, due
to disorienting feelings, one diagnostic consultation is insufficient to explain both the
diagnosis and offer follow-up support. Therefore, more explicit links to navigators
or other services need to be made at the point of diagnosis to prioritise information
regarding opportunities for social engagement for those being diagnosed.
KEYWORDS
dementia diagnosis, dementia navigators, empowerment groups, service user experience,
social support

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HAGAN
There were estimated to be 850,0 00 people with dementia in the
UK by 2015 (Prince et al., 2014) including over 40,000 individuals
under 65 (Roach, Keedy, Bee & Williams, 2014). NI has the highest
per capita percentage of dementia diagnoses (Donegan et al., 2017),
with there being at least 23,000 diagnosed (Dementia Together
NI, 2016) and approximately 7,000 undiagnosed (Mynes & Byrne
McCullough, 2015).
1.2 | Experiencing an early or timely diagnosis
Early diagnoses of dementia occur when the first signs of neuro-
logical and cognitive changes are observed but where clinical symp-
toms may be less apparent (Brayne & Kelly, 2019; Watson, Bryant,
Samson-Fisher, Mansfield & Evans, 2018). Those with early stage
dementia contradict stereotypes about incompetence and inca-
pacity (Murphy, Jordan, Hunter, Cooney, & Casey, 2015) as those
diagnosed largely retain capacity and usually clearly understand
the implications of diagnosis (Milne, 2010). An early diagnosis oc-
curs when individuals retain autonomy to self-manage their health
(Mountain & Craig, 2012; Read, Toye & Wynaden, 2017) and, post-
diagnosis, most continue to reside in the community, leading active
lives (Briggs, McHale, Fitzhenry, O’Neill & Kennedy, 2018) and mak-
ing their own decisions (Read, Toye, & Wynaden, 2017; Watson,
Bryant, Sanson-Fisher, Mansfield, & Evans, 2018). An early diagnosis
provides a concrete answer for enquirer uncertainty over distress-
ing symptomology (Wilcock et al., 2016) and pharmacological treat-
ments are at their most effec tive during early stages (Milne, 2010).
An early diagnosis is not necessarily timely as some feel unpre-
pared for the diagnostic burden when memory problems first arise
(Brayne & Kelly, 2019), timeliness relating to when the enquirer wants
to seek help (DuBois, Padovani, Scheltens, Rossi, & Dell’Agnello,
2016). Diagnosing early may exert undue pressure on already
stretched resources (Brayne & Kelly, 2019), so an appropriate time
for diagnosis may align with perceived eligibility for services (Dhedhi,
Swinglehurst, & Russell, 2014). Nevertheless, timeliness equated to
‘as soon as possible’ for 92% of respondents in Watson et al.’s (2018)
study. Timeliness is dependent not just on practitioner expertise but
also on the duration individuals and families take to identify cognitive
problems, commonly two to three years from the onset of symptoms
(Lian et al., 2017), by which time significant deteriorations may have
occurred. Diagnosis at a younger age may take substantially longer
(Draper et al., 2016), as there may be greater reluct ance to prescribe
dementia as the source of symptoms (van Vilet et al., 2013).
Individuals may fear diagnosis due to uncertainties about the
condition (Mahieux, Herr, & Ankri, 2018) and perceptions that noth-
ing can be done to help (Minghella & Schneider, 2012). While being
diagnosed can be stigmatising, intrusive and accompanied by signif-
icant losses, such as employment (Milne, 2010), in the NI contex t,
policy makers recommend an early diagnosis to allow individuals
the best opportunity to direct their own care planning (DHSSPSNI,
2011). As such, timeliness and earliness should converge to facili-
tate access to appropriate treatment and support, giving individuals
and families time to underst and what is happening and make future
plans (Bronner et al., 2016; DuBois et al., 2016). As early diagnoses
occur when individuals retain control and capacity, opportunities
for meaningful social engagement should be encouraged (Campbell
et al., 2016).
1.3 | Individuals with dementia ‘secondary’ in
diagnosis?
Person-centred care for people with dementia should respect indi-
vidual preferences and include flexible programmes of support fol-
lowing diagnosis (Mar tin, O’Connor, & Jackson, 2018). However, the
diagnostic process may prioritise the ne eds of carers over those being
diagnosed (Manthorpe et al., 2011; Tanner, 2012). Research focuses
on diagnosing medical professionals (DMP) being more likely to relay
a diagnosis to carers (Low et al., 2019) to help them understand the
condition (Phillips et al., 2012) as they may feel ill equipped (Bronner
et al., 2016). However, the majority of individuals with memory prob-
lems both have a right to be informed (Campbell et al., 2016), and also
want to be told whether they have dementia (Mahieux et al., 2018;
Robinson et al., 2011). Post-diagnostic support ser vices, such as day
care and respite, may meet carer needs (Bunn et al., 2012; Low et
al., 2019) but are inappropriate for independent individuals with early
stages dementia.
1.4 | Professional communication of diagnosis
Previously, studies have found DMP to express uncertainty around di-
agnosis (Bamford et al., 2004). However, increasing rates of dementia
diagnosis more recently perhaps reveals growing confidence (Donegan
What is known about this topic
• Both individuals being diagnosed with dementia and the
professional giving the diagnosis find this experience
difficult.
What this paper adds
• Those diagnosed would like more information at diagno-
sis about what social support exists to address their own
needs.
• However, one diagnostic event may be insufficient in
terms of giving information to individuals both about
diagnosis and avenues for social support.
• More explicit pathways could be developed to ensure
connections are made to workers, such as dementia
navigators, who will manage the post-diagnostic sup-
port for those diagnosed.

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HAGAN
et al., 2017; Wilcock et al., 2016). Nevertheless, there remains hesi-
tancy. DMP may be reluctant to communicate diagnoses due to con-
cerns that it may be stigmatising (Koch & Iliffe, 2010; Low et al., 2019).
Some practitioners use euphemisms such as ‘memory loss’ to minimise
distress (Phillips et al., 2012). Others diagnose mild cognitive impair-
ment (MCI), which formally recognises cognitive declines, though there
remains inconsistency as to how this condition is conceptualised and
constructed (Klekociuk et al., 2016) and whether this is a precursor to
dementia or a discrete condition itself (Beard & Near y, 2013).
The development of memory clinics has also improved and has-
tened dementia diagnosis, especially in younger enquirers (Draper
et al., 2016), though those being diagnosed may not wish to be
referred by a trusted GP to an unknown specialist or ser vice (Lian
et al., 2017). One English study reported that two thirds of those
diagnosed were referred to a specialist ser vice for the diagnostic
event (Wilcock et al., 2016). While GPs may be reluct ant or find
it challenging to diagnose dementia, some feel responsibility but
also constrained by time limitations to give the attention required
(Phillips et al., 2012).
DMP are sometimes perceived as poor communicators lacking
empathy (Koehn, Badger, Cohen, McCleary, & Drummond, 2016).
Diagnosed individuals have expressed 'feelings of abandonment or
“being sent away” by professionals on receipt of diagnosis’ (Kelly &
Innes, 2016:167). One area that could improve relates to how those
diagnosed access support services (Manthorpe et al., 2011).
1.5 | Community responses and support
DMP lack knowledge regarding appropriate community or sup-
port services that may assist those diagnosed (DuBois et al., 2016;
Koch & Iliffe, 2010) and, due to feeling accountable for referrals,
may mistrust unknown third sector ser vices or feel they are unreli-
able (White, Cornish, & Kerr, 2017). Some DMP do not prioritise
aftercare arrangements (Prince, Comas-Herrera, Knapp, Guerchet,
& Karagiannidou, 2016; Robinson et al., 2011) and social support
may be regarded as discretionar y or even a luxury (Minghella
& Schneider, 2012). Yet potential social isolation (DuBois et al.,
2016; Herron & Rosenberg, 2017) or exclusion (Greenwood &
Smith, 2016) is a challenge following diagnosis. Carers express dis-
tress at a perceived lack of group ser vices for loved ones (Herron
& Rosenberg, 2017). Moreover, a larger social network involving
friendships for diagnosed individuals is associated with better
cognition (Baloch, Rifaat, Chen, & Tabet, 2019) and supportive
community connections lead to more effective dementia man-
agement (Prince et al., 2016). UK and NI guidance state signpost-
ing to supportive community or voluntary ser vices improves the
lived experience of those diagnosed (Department of Health, 2016;
DHSSPSNI, 2011) yet the establishing of support groups for peo-
ple with dementia is discouraged or seen as a lesser priority by
statutory agencies (Minghella & Schneider, 2012).
Research identifies specific benefits from social engagement
(Manthor pe et al., 2011). Peer suppo rt groups help mai ntain identity
(Harman & Clare, 2006), empower members (Boyle, 2014), promote
acceptance and engagement with society (Read et al., 2017), and
instil hope, facilitate grief, raise awareness of ser vices and provide
opportunities for learning (Yale, 1999). Being with diagnosed peers
reduces burdens and feelings of isolation, normalises difficulties
and adds perspective (Preston, Marshall, & Bucks, 20 07).
2 | METHODS
The article's purpose is to report on how those diagnosed with de-
mentia related the diagnostic event to subsequent involvement in
their empowerment groups. Previously, much research has relied on
caregivers rather than people with dementia (Murphy et al., 2015;
Werner, Karnielli-Miller & Eidelman, 2013), though inclusion of the
voices of those diagnosed is now increasing. To contribute to this
international body of knowledge, this study focuses solely on the
views of 13 participants who attend dementia empowerment groups
in four locations in NI. Two groups were located in cities, the third
in a small town and the final in a village serving a broad rural area.
These groups are facilitated by an advocacy charity and the groups
provide both suppor t and opportunities for consultation and en-
gagement with policy makers and the public.
Sampling was purposive: only those with dementia and attend-
ing groups were included. Group facilitators asked members if they
wanted to participate and gave interested parties a project informa-
tion sheet, ensuring individuals were fully aware of the study's aims
well in advance. Inter viewees were aged bet ween 48 and 80, with
five under 60 years (See Table 1). Seven were female. While eight
of 13 interviewees reported a dementia diagnosis prior to 65, often
the boundary line for a diagnosis of young onset dementia (Draper
et al., 2016), the term early-stage dementia has been preferred as
this clearly delineates that, whatever the respondent's age, partici-
pants retained substantial capacity, autonomy and insight into their
condition.
TABLE 1 Profile of interviewees
Name (pseudonym) Age
Lorcan 74
Maolisa 74
Nuala 48
Oisin 55
Phelim 66
Quinn 74
Roisin 58
Stephen 80
Ter esa 69
Ursula 78
Wilson 69
Yvonne 54
Zachary 55

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HAGAN
2.1 | Ethical considerations
Involving people with dementia in research evokes concern around
consent and capacity. Following the lead of the Bamford review on
mental health and the Mental Capacity Act (2005) in England and
Wales, the Mental Capacity (Northern Ireland) Act 2016 advocates
for capacity to be presumed, including in research practices, unless
otherwise direc ted (Harper, Davidson, & McClelland, 2016; Lynch,
Taggart, & Campbell, 2017). Participants’ capability to take part in
the study was obser ved in a number of ways. First, the researcher
was directed by guidance from the professional facilitators. Second,
group members demonstrated capacity in terms of independently
travelling to and from the group and involving themselves in the
group's decision making processes. Finally, following guidance from
the functional test for capacity, group members were able to under-
stand the research task, could retain this information and were able
to weigh up the importance of this before making a decision (Lynch
et al., 2017). In this study, all those taking part gave written con-
sent. The researcher read this form with every candidate, check-
ing that all aspects were clear before commencing. This included
information on how participants’ contribution was voluntary and
could be withdrawn at any time, specific information as to how their
interviews would be recorded, transcribed and stored, and how re-
sponses and direct quotations could be used in potential journal
articles. Each participant was given a pseudonym to minimise the
chances of their being identified. The research study gained ethical
approval through Ulster University Research Ethics Committee in
December 2016 (reference REC/16/0102).
2.2 | Procedure
The researcher conducted face-to-face semi-structured interviews
between June 2017 and April 2018 at the four venues where par-
ticipants usually met in their groups. The researcher engaged in pre-
liminar y conversation to put the interviewee at ease (Murphy et al.,
2015) and checked, through the consent form process, that each fully
understood the process. Interviews, which lasted bet ween 20 and
55 minutes, were recorded digitally. Given the potential for sensitive
topics, the researcher checked on completion how each participant
felt and asked for reflections on the process (Murphy et al., 2015).
2.3 | Analysis
Grounded theor y was used to learn inductively what par ticipants
considered most important about their social lives post-diagnosis,
with predetermined knowledge being kept to a minimum (Glaser &
Strauss, 1967). Research questions may unintentionally predispose a
respondent towards a particular response (Tufford & Newman, 2010).
An example of the initial draft of questions is in Table 2. Questions
initially examined the pre-diagnosis life, what changed subsequent
to diagnosis, group experiences and views on social lives generally
outside the group. While an interview schedule was used to com-
mence conversations, an iterative and flexible approach was adopted,
ensuring that responses in early interviews led to changes in latter en-
gagements. For example the first question always asked participants
how they joined the empowerment group. Rather than answering this
directly, respondents often used this opportunity to speak about their
diagnosis. The opening exchange with Teresa was somewhat typical:
Researcher: The first question I wanted to ask you is how did you
come to join [the group]?
Teresa: Do you want me to start from when I was diagnosed…?
Participants outlined, often in depth, challenges with diagnosis
and its emotional impact. Reflecting on initial interviews and recog-
nising this was a most important topic for respondents, an inductive
response ensured the researcher gave increasing time for partic-
ipants to explore this matter. This validated participants’ own pri-
orities of what was relevant. This article, then, evidences emergent
data that relays participants’ view of the diagnostic process and its
changes to their social lives.
Initial coding was undertaken by reading interview transcripts
carefully line by line and highlighting meaningful words and sen-
tences in each narrative. These were then categorised, using NVivo
11 software, with a subsequent process of axial coding resulting in
various subthemes. After further analysis and the narrowing of focus
to matters pertaining only to diagnosis and post-diagnostic support
for the purposes of this article, these yielded the three themes high-
lighted below. The extensive use of quot ations in the following sec-
tion adds weight to how themes are evidenced in participants’ own
words. These are then analysed in the Discussion.
3 | FINDINGS
3.1 | Experience of diagnosis
Some par ticipants identified positive practice at diagnostic stage.
Teresa conveyed the DMP’s compassionate manner and sensitivity.
TABLE 2 Draft interview schedule
Main question Suggested follow-up
How did you come to join the
empowerment group?
What was life like for you prior
to joining?
What do you like/dislike about
the group?
How does the group assist in
maintaining social relationships?
What has changed since
becoming diagnosed…?
In terms of (a) employment;
(b) social lives; (c) any other
changes?
What is your experience of
loneliness?
Have you noticed changes in
experiences of loneliness since
becoming diagnosed?
Generally how would you
describe your social life/social
network now?

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HAGAN
[I] went in to see [DMP] and he’d been talking to me for a
long time and he was very good […], and at one stage he
did say to me, Teresa, would you like to know if you […]
have dementia? I says, of course, I would. So he went on
for another wee while and then I saw him kind of getting
down on his honkers a wee bit […], and I thought, there’s
something coming here [….] He says, you’ve got dementia.
(Te res a)
For others the diagnostic process felt lengthy.
I went through all the period then of memory clinics and
all the rest of it which takes a long time and that’s what I
find is frustrating with the medical profession because it
takes so long to get any solutions.
(Lorcan)
I went to see my doctor and tried to talk to him about
it and he didn’t want to know [….I feel they] don’t know
very much about dementia […], they tend to shy away
from it.
(Nuala)
Unhelpful comments from professionals had a lasting impact.
I was quite shocked when [the specialist gave the diag-
nosis], he was […] very abrupt, just stuck his head out the
door and says, you’re not allowed to drive anymore and
you’re not allowed to drink anymore.
(Oisin)
I was diagnosed by [consultant] and he was nearly
gloating about it [….He was] extremely smug about it.
Extremely, it was really off-putting because he was so
smug about the whole thing. He […] was, ‘I diagnosed her
and [other consultant] didn’t.’
(Yvonne)
Diagnosis was terrible. I think it was handled so badly
that day and I want changes there [….] Just the way it’s
done, the whole thing’s done […], he ushers you out and
you go home and that’s it [….] He told us to put […] my
affairs in order [….] He opened the door, ushered us out
[….] This was about ten to four on a Friday. I learned then
he […] flew home to Manchester, he headed to the airport
for half four on the Friday afternoon.
(Zachary)
Ursula di d not give her permissi on to her DMP to share infor mation.
[The consultant] says, you have Alzheimer’s, he says […],
what is your husband’s number? [….] I told him my num-
ber and he phoned him just straight off. He didn’t say to
me, I’m going to tell him but he just phoned him straight
off. He says, your wife has Alzheimer’s.
(Ursula)
Yvonne went on to express concern that consultants did not listen.
It’s just getting that balance right and people listening to
you, which is w hat I found very dif ficult with the Trust with
the doctors [….] GPs were fine, the consultants all were,
they were right [as in correct]. They weren’t always right.
(Yvonne)
3.2 | Reaction to diagnosis
In line with wider findings, interviewees reported shock and
a subsequent inability to take in further information during
consultation. This led to ruminations about things being left
unexplored.
When I did come out of the doctor’s […] and my daughter
was with me, I was sitting in the car and I sor ta, the tears,
feeling sorry for myself and when we come up home, we
chatted about it.
(Maolisa)
It didn’t go […] into my head that I had, you know, so
he was talking and talking and talking and […] I didn’t
hear, I did not hear one word he said. Just went over
my head.
(Te res a)
So that was it, [the neurologist] said I’m really sorry,
there’s nothing we can do […], the only thing we can do is
bring you back once a year for check up and see how it’s
all progressing [….] And I says, right, okay, so then I went
home and obviously tried to digest all this.
(Nuala)
I’m sorry to say, Phelim […] that you’ve got Alzheimer’s
dementia [.…] Look, my mind sort of went blank then [….]
I was listening but I wasn’t listening [….] I was scared of
[my son] crashing the car or something on the way home,
so when I got it, I was in shock like. [….] I don’t know if I
was in that office for two minutes or two hours. I don’t
know […], I honestly don’t know.
(Phelim)
3.3 | Referrals to services
DMP were in their comfor t zone when it came to medical processes
and referrals and interviewees were often happy with how these
matters were activated.

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HAGAN
It was quite intense and then, funny, it’s like I was really
lucky, two weeks later I had got my MRI scan, you know,
within two weeks so that was […] very quick and two
weeks later I was diagnosed.
(Te res a)
When I told [my GP], she already had looked after
[other relatives], so she picked up on it right away. She
says, Phelim, if I send for a scan, will you go for a scan?
I says, I will…. So all this went through […] brave and
quick.
(Phelim)
However, when it came to social support, others were more
clearly instrumental in referring individuals to the empowerment
groups. Ten of the 13 participants talked about this (see Table 3).
It was unusual for participant s to reveal a direct link between the
DMP and a referral to an empowerment group.
There was no referral made to them by the consultant
[….] One of my biggest fights is to get somebody to be
there when you come out the door. Your head might still
be spinning but just take you for a cup of tea and a hand-
ful of leaflets to give you.
(Zachary)
Only one reported being informed of the empowerment group
by their GP and none by consultant s or specialists more likely making
the diagnosis. Other health or social care professionals played a role.
I was with an occupational therapist for a few weeks
and… she was the one who pointed me towards the [em-
powerment] group.
(Oisin)
Three members were referred by dementia navigators, employed
by the health and social care trusts in NI, who typically would be
alerted to diagnoses by memor y clinics (Belfast Health & Social Care
Trust,no date).
Within a few weeks of diagnosis, I had a visit from a de-
mentia navigator and within a week after that [the em-
powerment group facilitator] had come out to see me…
and a week after that I was in the group. So for me it was
very positive and very quick.
(Quinn)
There was, however, a sense that geographical location had an im-
pact on signposting to support services.
The navigators are brilliant but yet if you are unfortunate
to live in [… city], that area, some people there was saying
it was about si x months […] between diagnosi s and seeing
somebody.
(Roisin)
Even when the navigator was seen positively, there were concerns
about the time-limited nature of certain posts and funding.
You definitely need a navigator because […] I think her
time’s running out now [….] She is a fantastic person [….]
It was her really that got me […] on the wee courses that
really sor t of helped me and then getting out here to [the
empowerment group].
(Te res a)
Although evidence of direct referrals to social support was scant,
DMP did acknowledge its benefits.
My consultant […] maintains that, you know, people who
meet in a group like this […] keep at a much more even
keel, even slightly improve whereas if people who would
sit at home all day every day, […] there’s a quick decline.
(Roisin)
One conduit used by DMP for supplying advice on formal and
informal support was through written literature. However, two par-
ticipants reflected upon how the information distributed was clearly
oriented towards carers.
[The consultant had] nothing for me. I’ll never forget and
he said he’d send me out something and five weeks later
I got a leaflet for […] communicating with people with
dementia and that’s the first information I got. It was a
carer’s leaflet.
(Zachary)
I was given the Trust book and the Trust book is, ‘talk
softly to them’, ‘don’t shout’, you know, ‘put the mat
at the door, so they don’t fall’ and I, my mother had
TABLE 3 How participants became aware of voluntary agency
support group
Name Route
Maolisa Dementia Navigator
Nuala Internet search
Oisin Occupational Therapist
Phelim Age NI workers
Quinn GP
Roisin Dementia Navigator
Ter esa Cousin/Dementia Navigator
Ursula Friend (existing group member)
Yvonne Sister-in-law
Zachary Community Psychiatric Nurse

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HAGAN
Alzheimer’s and I was sitting going, I thought it was so
patronising [….] It wasn’t, that book wasn’t for me. It
might have been for a carer but it definitely wasn’t for
me.
(Yvonne)
4 | DISCUSSION
This article finds that diagnosis raises anxieties for both those di-
agnosed and the professional diagnosing, hindering a full and frank
discussion about post-diagnostic options. Social support may bolster
cognitive development and delay the worsening of the condition
(Minghella & Schneider, 2012) and policies recommend social support
for people with dementia. Despite this, referrals to social support at
diagnosis for these interviewees were often overlooked. Despite ac-
knowledgement of the import ance of social suppor t for those with
dementia, the lion's share of the NI Executive's guidance on post-di-
agnosis care is directed towards healthcare needs and management,
and carers’ roles (DHSSPSNI, 2011). These messages relegate the
individual's social needs and ability to be autonomous behind health-
care concerns. However, if DMP lack confidence in social support
services, the reallocation of signposting to a third party, such as a de-
mentia navigator, is a positive and necessary intermediary approach.
Emotions roused by diagnosis question whether it is appropri-
ate or advisable during the diagnostic event to discuss opportuni-
ties for social engagement. In this study, participants talked about
shock, feeling tearful, struggling to listen and denial. These feelings
compromise the ability to retain subsequent advice during consulta-
tion. Participants in Clare, Rowlands, and Quin’s (2008) study speak
of the diagnosis experience as a journey into unfamiliar territory,
accompanied by disorientation and anxiety regarding associated
losses. Diagnosis then is not an ending but a point where difficult
questions and uncomfortable ruminations surface (Campbell et al.,
2016). The diagnosis process should appreciate the time and ad-
justment required to come to terms with this transition (ibid.).
The diagnostic process should not be a one-off event (Dhedhi
et al., 2014; Aminzadeh, Byszewski, Molnar, & Eisner, 2007; Koch
& Iliffe, 2010): there should be more than one appointment to dis-
cuss diagnosis and enable effective care planning (Kelly & Innes,
2016). This could involve the outlining of appropriate support
services that community and voluntary agencies provide. The
NI Executive recognise that the diagnostic interview should im-
prove, recommending the allocation of a key worker, and putting
a system in place to ensure the provision of practical advice, sup-
port and information, including independent sources of advocacy
(DHSSPSNI, 2011). In this study, positive contact with dementia
navigators, other professionals and informal contacts that helped
initiate involvement with empowerment groups, indicate that this
sometimes is activated. The use of different services, as advo-
cated by the UK’s Depar tment of Health, ensures bet ter oppor-
tunities for appropriate and adequate access to multiple supports
(Campbell et al., 2016).
Giving those diagnosed writ ten information on social care
and voluntary services could be best practice on the part of DMP
(Lecouturier et al., 2008) and may be regarded by some GPs as a
sufficient response to social need (White et al., 2017). In contrast, in
this study, two participants reported being given inappropriate ad-
vice pamphlets aimed at carers, a finding that echoes other research
(Kelly & Innes, 2016; Mountain & Craig, 2012), and which reflects a
potential structural oppression whereby people with dementia are
underestimated and perceived as lesser or diminished. Potential
streng ths and capabilities, of ten intact at early stages ( Yale, 1999), are
ignored. Yet, living well with dementia is the central theme in the NI
Executive's strategy in addressing the needs of diagnosed individuals
in the province (Dementia Together NI, 2016). This report focuses on
emphasising what people with dementia can rather than cannot do
and supports the individual “doing the things they enjoy but [with…]
some support to do them in a slightly different way” (ibid., p14).
The use of specialist services such as memory clinics is re-
garded as being more effective in providing effective post-diag-
nostic support (Kelly & Innes, 2016; Prince et al., 2016; Robinson,
Tang, & Taylor, 2015). Diagnosed individuals view services as valu-
able if they are able to signpost on to community suppor t initiatives
(Mayrhofer, Mathie, McKeown, Bunn, & Goodman, 2018). DMP do
not need to fulfil this role: diagnosed individuals appreciate dedi-
cated and sensitive project workers who facilitate referrals to so-
cial support (Kelly & Innes, 2016). What is important is ensuring
there is a clear system in place where the referral agent is identified
early and appropriate processes activated. DMP increasingly rec-
ognise the benefit s non-traditional outlets offer through the con-
cept of social prescribing. This involves linking service users with
non-clinical activities often facilitated by third sector organisations
to enhance community well-being and social inclusion (Baker &
Irving, 2016; Moffatt, Steer, Lawson, Penn, & O’Brien, 2017; South,
Higgins, Woodall, & White, 2008), and includes signposting to rele-
vant agencies that offer social support (Chatterjee, Camic, Lock yer,
& Thomson, 2018). DMP are already comfortable using social
prescribing to tackle mental health conditions and social isolation
(Mossabir, Morris, Kennedy, Blickem, & Rogers, 2015) but may not
respect the roles, knowledge and expertise of non-medical third
sector service providers (Aveling & Jovchelovitch, 2014; White et
al., 2017). If DMP feel less confident about social prescribing, this
emphasises the importance of maintaining the role of dementia
navigators. As one community organiser notes:
I think it’s still incredibly rare for there to be health re-
ferrals. I have never been involved in anything like that
before … to have a doctor saying “I think this would be
a good idea”
(Baker & Irving, 2016, p387)
Although DMP recognise the value of social concerns, they prior-
itise physical care needs and lack insight beyond their own individual
expertise and institutional logic (Baker & Irving, 2016; Vince, Clarke, &
Wolverson , 2017). As a re sult, DMP are not alw ays well informed abo ut

8
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HAGAN
social support opportunities and links with third sector and community
services are weakened. Dementia navigators help negotiate these un-
certain waters, networking between boundaries, gaining knowledge of
local services and being sensitive to the value of connections between
different groups (South et al., 2008). Navigators take an holistic view
of an individual's situation.
However, in line with the UK Government's 2016 joint decla-
ration, high qualit y post-diagnostic care and support is required at
the point of diagnosis (Department of Health & Social C are, 2016)
so DMP should aim to be better informed about local social oppor-
tunities. Strategic collaborations that complement services help di-
agnosed individuals, build mutual understanding and respect, and
promote social prescribing at grass roots level (White et al., 2017).
A confident referral from a DMP can be especially valuable as this
could help legitimise, in the diagnosed person's eyes, the service to
which they are being referred (Mossabir et al., 2015).
4.1 | Limitations
The study has sought the views and experiences of par ticipants from
empowerment groups in four locations in NI and findings may be
difficult to generalise to wider populations elsewhere. Nevertheless,
the study is validated by the wider literature's reporting experiences
of difficult diagnoses, lack of practitioner confidence and uncer-
tainty about social support.
5 | CONCLUSION
This paper finds that, while the social needs of people with dementia
are recognised as important, direc t referrals to services from DMP ap-
pear rare. However, this is not entirely bad. First, this study highlights
that the diagnostic consultation is often overwhelming for those re-
ceiving a diagnosis and t herefore taking in information about potential
avenues of social support is compromised. Second, and linked to this,
DMP expertise is mediated if there are other roles, such as demen-
tia navigators, who can follow-up and make referrals to appropriate
services. DMP do not need to provide insight into areas outside their
institutional logic, but there should be explicit procedures in place
to ensure that people with dementia's social needs are recognised
and respected, and appropriate referrals forwarded. There appears
to be some good practice in this respect but this is not universal. As
such, the importance and value of social suppor t for those diagnosed
should not be neglected in the medical process of dementia diagnosis.
ACKNOWLEDGEMENTS
The author is extremely grateful to all interviewees for being willing
to participate in the study and also thanks the charity which facili-
tates the groups of which participants were members.
CONFLICT OF INTEREST
None.
ORCID
Robert J. Hagan https://orcid.org/0000-0003-1184-229X
TWITTER
Robert J. Hagan @drrjhagan
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How to cite this article: Hagan RJ. What next? Experiences
of social support and signposting after a diagnosis of
dementia. Health Soc Care Community. 2020;00:1–10. ht tp s : //
doi .org/10.1111/hs c.1 2949