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

Being diagnosed with dementia is life changing. Diagnosed individuals report conflicting emotions such as shock, relief and affirmation (Bronner, Perneczky, McCabe, Kurz, & Hamann, 2016), embarrassment and distress (Aminzadeh, Byzsewski, Molnar & Eisner, 2007), and shame, aggression and denial (Low, McGrath, Swaffer, & Brodaty, 2019). Longer term side effects include depression, isolation and decreased self-esteem (Rahman & Howard, 2018). As such, opportunities to offer support are especially valuable upon diagnosis. While social support is recognised within the United Kingdom's (UK) local and national policies (Department 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.

There were estimated to be 850,000 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).

| Experiencing an early or timely diagnosis
Early diagnoses of dementia occur when the first signs of neurological and cognitive changes are observed but where clinical symptoms may be less apparent (Brayne & Kelly, 2019;Watson, Bryant, Samson-Fisher, Mansfield & Evans, 2018). Those with early stage dementia contradict stereotypes about incompetence and incapacity (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 occurs when individuals retain autonomy to self-manage their health (Mountain & Craig, 2012;Read, Toye & Wynaden, 2017) and, postdiagnosis, most continue to reside in the community, leading active lives (Briggs, McHale, Fitzhenry, O'Neill & Kennedy, 2018) and making 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 distressing symptomology (Wilcock et al., 2016) and pharmacological treatments are at their most effective during early stages (Milne, 2010).
An early diagnosis is not necessarily timely as some feel unprepared 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 reluctance 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 nothing can be done to help (Minghella & Schneider, 2012). While being diagnosed can be stigmatising, intrusive and accompanied by significant losses, such as employment (Milne, 2010), in the NI context, 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 facilitate access to appropriate treatment and support, giving individuals and families time to understand 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).

| Individuals with dementia 'secondary' in diagnosis?
Person-centred care for people with dementia should respect individual preferences and include flexible programmes of support following diagnosis (Martin, O'Connor, & Jackson, 2018). However, the diagnostic process may prioritise the needs of carers over those being diagnosed 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 problems 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 services, 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.

| Professional communication of diagnosis
Previously, studies have found DMP to express uncertainty around diagnosis (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 diagnosis 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 support for those diagnosed. Wilcock et al., 2016). Nevertheless, there remains hesitancy. DMP may be reluctant to communicate diagnoses due to concerns 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 impairment (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 & Neary, 2013).
The development of memory clinics has also improved and hastened 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 service (Lian et al., 2017). One English study reported that two thirds of those diagnosed were referred to a specialist service for the diagnostic event (Wilcock et al., 2016). While GPs may be reluctant 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).
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 .

| Community responses and support
DMP lack knowledge regarding appropriate community or support 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 services or feel they are unreliable (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 discretionary 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 distress at a perceived lack of group services 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 management (Prince et al., 2016). UK and NI guidance state signposting to supportive community or voluntary services improves the lived experience of those diagnosed (Department of Health, 2016; DHSSPSNI, 2011) yet the establishing of support groups for people with dementia is discouraged or seen as a lesser priority by statutory agencies (Minghella & Schneider, 2012).
Research identifies specific benefits from social engagement . Peer support groups help maintain 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 services 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, 2007).

| ME THODS
The article's purpose is to report on how those diagnosed with dementia 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 support and opportunities for consultation and engagement with policy makers and the public.
Sampling was purposive: only those with dementia and attending groups were included. Group facilitators asked members if they wanted to participate and gave interested parties a project information sheet, ensuring individuals were fully aware of the study's aims well in advance. Interviewees were aged between 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, participants retained substantial capacity, autonomy and insight into their condition.

| 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)

| Procedure
The researcher conducted face-to-face semi-structured interviews between June 2017 and April 2018 at the four venues where participants usually met in their groups. The researcher engaged in preliminary 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 between 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).

| Analysis
Grounded theory was used to learn inductively what participants 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

| Experience of diagnosis
Some participants identified positive practice at diagnostic stage.
Teresa conveyed the DMP's compassionate manner and sensitivity.

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?
[I] went in to see [DMP]  Yvonne went on to express concern that consultants did not listen.

| 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.

| Referrals to services
DMP were in their comfort zone when it came to medical processes and referrals and interviewees were often happy with how these matters were activated. 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 participants to reveal a direct link between the DMP and a referral to an empowerment group.

| D ISCUSS I ON
This article finds that diagnosis raises anxieties for both those diagnosed 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 acknowledgement of the importance of social support for those with dementia, the lion's share of the NI Executive's guidance on post-diagnosis 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 healthcare concerns. However, if DMP lack confidence in social support services, the reallocation of signposting to a third party, such as a dementia navigator, is a positive and necessary intermediary approach.
Emotions roused by diagnosis question whether it is appropriate or advisable during the diagnostic event to discuss opportunities 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 consultation. 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 adjustment 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 discuss 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 improve, recommending the allocation of a key worker, and putting a system in place to ensure the provision of practical advice, support 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 advocated by the UK's Department of Health, ensures better opportunities for appropriate and adequate access to multiple supports (Campbell et al., 2016).
Giving those diagnosed written 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 advice 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 strengths and capabilities, often intact at early stages (Yale, 1999) some support to do them in a slightly different way" (ibid., p14).
The use of specialist services such as memory clinics is regarded as being more effective in providing effective post-diagnostic support (Kelly & Innes, 2016;Prince et al., 2016;Robinson, Tang, & Taylor, 2015). Diagnosed individuals view services as valuable if they are able to signpost on to community support initiatives (Mayrhofer, Mathie, McKeown, Bunn, & Goodman, 2018 (South et al., 2008). Navigators take an holistic view of an individual's situation.
However, in line with the UK Government's 2016 joint declaration, high quality post-diagnostic care and support is required at the point of diagnosis (Department of Health & Social Care, 2016) so DMP should aim to be better informed about local social opportunities. Strategic collaborations that complement services help diagnosed 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).

| Limitations
The study has sought the views and experiences of participants 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 uncertainty about social support.

| CON CLUS ION
This paper finds that, while the social needs of people with dementia are recognised as important, direct referrals to services from DMP appear rare. However, this is not entirely bad. First, this study highlights that the diagnostic consultation is often overwhelming for those receiving a diagnosis and therefore 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 dementia 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 support for those diagnosed should not be neglected in the medical process of dementia diagnosis.

ACK N OWLED G EM ENTS
The author is extremely grateful to all interviewees for being willing to participate in the study and also thanks the charity which facilitates the groups of which participants were members.

T WIT TER
Robert J. Hagan @drrjhagan