Sample and recruitment

The inclusion criteria were:

• Self-identifying as a social prescriber (e.g., social prescribing link worker, health and wellbeing coach, care coordinator, community connector, community advisor, community support broker, community navigator or community health worker).
• Experience of social prescribing with people with dementia and their families.
• Working in statutory (primary and secondary healthcare services, local councils), private (homecare services) or voluntary sectors (charities, grassroot organisations).
• Any locality within England.

We recruited through:

• Existing professional and private networks of the study team.
• Development of new network/connections with relevant researchers/professionals/groups.
• Identification of Primary Care Networks (PCNs), voluntary sector organisations (charities), private sector (homecare providers) and local councils that offer social prescribing services nationally through Google searches.
• Registration to professional networks (e.g., The National Academy of Social Prescribing, NASP) and advertised the study in their outputs (newsletters, blogs).

Recruitment was initially undertaken using snowball sampling [24], by asking identified professionals to circulate information about the study within their own networks. This was to pragmatically address the challenges of involving a very busy workforce in research. However, as data collection progressed, we adapted our sampling and employed a purposive sampling strategy [24] to make the study sample as diverse as possible. We scoped participants’ professional role, location, and demographics (gender, age group, ethnicity) to identify areas of underrepresentation, and when recruiting new participants, we prioritised demographic and professional characteristics that were under-represented at the time. We pursued diversification guided by the principle that social prescribers experience different barriers, challenges and benefits based on geographical areas where they operate (e.g., urban vs rural/coastal, larger vs smaller catchment areas), professional role and organisation they work for (e.g., working for the statutory vs third sector), and demographic characteristics (e.g., white male vs black woman) which may affect clients’ responses.

Recruitment started on 14 June 2023 and continued until data sufficiency was reached [25] on 14 November 2023. Given the lack of guidance around data saturation for sample sizes in qualitative research (e.g. when it is reached), in line with Guest, Bunce and Johnson [26], we adopted the concept of ‘conceptual density’ (i.e. gathering data until a sufficient depth of understanding of the domains under investigation is reached) [27].

Initial contact with potential participants was made by email. The email contained an information sheet outlining the study, what taking part would involve and the voluntary nature of participation, a consent form and a demographic form. The potential participant was advised to contact the research team if interested in taking part and return the signed consent form. The team would then make sure the person met the inclusion criteria and if so, agreed a time/date for the interview.

Data collection

Individual semi-structured interview through Microsoft Teams were undertaken by CDL and recorded. The interviews were based on a topic guide informed by a scoping review [28] of existing literature and co-designed with the research team and the social prescriber collaborator (Table 1). The scoping review was undertaken on Google scholar by inputting the terms “social prescribing” and “dementia”. Results were screened and a list of emerging themes was created through inductive thematic analysis [29] by CDL. The emerging themes were presented to the study team and the PPIE co-applicants, as well as our social prescriber study collaborator (LMC) to sense check them and confirm their relevance/appropriateness. The discussion resulted in four final themes: Information and access to social prescribing in participant’s service; type of clients’ needs, and support offered; Confidence and skills; Resources and support. In the same session, questions were co-developed for each of the theme.

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Table 1. Topic guide.

https://doi.org/10.1371/journal.pone.0317749.t001

The topic guide was used to prompt an open-ended guided discussion focusing on challenges and strategies of participants in their own practice, but was used flexibly, so that if and when new relevant themes and topics emerged during the interview, they were explored further.

Data analysis

Audio files of participants’ interviews were securely transferred to a university-approved transcription agency, which transcribed and fully anonymised them. Transcriptions’ anonymity was double checked by the research team, who assigned participants pseudo anonymised codes (Table 2). The transcripts were analysed through inductive thematic analysis [28], setting two themes based on the guiding study research questions:

1. Challenges and barriers (for social prescribers).
2. Strategies (used to address challenges and barriers).

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Table 2. Participants’ characteristics.

https://doi.org/10.1371/journal.pone.0317749.t002

CDL inductively coded data within one of these two themes. The coding frame was presented by CDL in a data clinic meeting to the core research team (JW, MP) to reach consensus on its accuracy (i.e., that every challenge/barrier and strategy presented by participants in the interviews had been identified and coded into theme 1 or 2).

Because of the large amount of data within each theme, the core research team decided to re-arrange the data around challenges/barriers and strategies and present it based on “stages of support”, i.e., from pre-contact with clients through to discharge. This was done within two separate follow-up group meetings on Zoom. The first was held with three social prescribers who had not taken part in the individual interviews, and who were recruited via the research team’s professional network. In this meeting, the data was presented to the social prescribers, who identified seven different stages of support that the challenges/barriers and strategies fit into:

1. 1. Referral and preparatory groundwork.
2. 2. First approach.
3. 3. Nurturing motivation and rapport.
4. 4. Identifying clients’ needs.
5. 5. Identifying resources and signposting to community-based assets.
6. 6. Continued engagement of clients.
7. 7. Termination, discharge and follow up.

The group also identified an overarching theme:

1. 8. Ongoing professional development.

All data on challenges/barriers and strategies were then coded into one of these eight themes by CDL. A second meeting was held with three Patient and Public Involvement and Engagement (PPIE) members with lived experience of dementia. In the meeting, the coding frame and analysis was presented to the group, discussed and refined based on participants’ feedback. The group agreed with the framework, but felt that some of the themes’ names should be renamed by using jargon-free language, to enhance clarity and understanding, as follows:

1. Pre-contact groundwork and preparation.
2. First contact.
3. Developing motivation and rapport.
4. Identifying needs.
5. Identifying and signposting to resources.
6. Engaging the client in social prescribing.
7. Discharge and continuity of care.
8. Ongoing professional development.

Data are presented below by theme, as revised by the PPIE members.

Pre-contact groundwork and preparation

Social prescribers discussed some of the challenges, and possible solutions, of preparing to support a client with dementia. A typical issue was the lack of details and background information about clients on referrals:

“In the referral, it tells me who’s made the referral, their contact details and usually a little bit about the situation. It is very dry, doesn’t tell me where the person is accepting of it, whether he wants to talk”.

SP11

Lack of in-depth information was exemplary of poor liaison and communication within integrated care systems (ICSs), in particular between primary and secondary health services:

“I think one thing that I do struggle when it comes to referral for a client with dementia is it often reflect how secondary care and primary care aren’t as well linked as they should. So, for example, you might find no information around the actual input that the memory clinical service has had on that client. And you could end up duplicating work”.

SP13

Therefore, some further fact finding around client’s circumstances was required. For social prescribers working within in primary care, this happened through accessing clients’ medical records:

“Before I meet them, I examine people’s medical records to get a much clearer idea of what their diagnosis is, and I know whether they’ve got consent for relatives to speak for them”.

SP18

For social prescribers working in the third sector, however, this was not possible, causing a delay in information gathering until it could be relayed by the client (or family) directly. When a referral for a client with dementia was received, the social prescriber did not always feel competent and confident enough to support that client. Some social prescribers reported that their teams had designated a dementia expert social prescriber who could confidently take on the case:

“We consider expertise within our team. We’ll look at the referral and if dementia is mentioned, we try to pass the referral to the one who’s better suited for that client”.

SP02

There were also strategies in place to handle workflow when services are stretched. An example was implementation of traffic light systems based on matter of urgency:

“We prioritise referrals in a matter of urgency. So, urgency would be a person with dementia who is homeless, has no food, no gas and electric. Then, we have high priority, which may be a person with dementia who hasn’t got attendance. We tend to put them on high priority just because how long the process takes to claim. And then we have moderate, which would be people that are interested in social groups or activities”.

SP09

Once a social prescriber was assigned, the case was opened based on matter of urgency, and first contact was made.

First contact

Social prescribers agreed that barriers to communication were common when establishing contact with a client with dementia. First contact often occurred over the phone to save resources, something which could be problematic for social prescribers:

“I think this is this is a big problem, but we are kind of discouraged from face-to-face contact for home visits because it costs time and expenses for travel”.

SP03

In the context of remote interactions, the client with dementia might find it challenging to communicate effectively. They might be confused, reluctant, or unable to interact. A common challenge was client’s resistance to accept support during that first call:

“When I make the phone calls it’s sometimes very dry at first and it’s going nowhere. They’d say—Oh, thank you very much, but I’m alright. I don’t need anything”.

SP11

There was a risk that social prescribers may not identify resistance for what it was. They might mistake the decline to accept support for a lack of current needs, and close the referral too early, leaving the clients’ needs unidentified and unaddressed:

“It happened in the past that I called somebody, and they tell me I don’t need anything. So, I closed the referral, but then later I received a call from their sister, saying—yeah, let’s do this. I’ve got power of attorney—But those people that don’t have the sister, they may not have that second chance”.

SP03

Some social prescribers described some strategies to deal with communication difficulties effectively. The first was to initiate communication in paper format:

“We would send a letter first, so they know who we are, why we’re ringing and when we intend to ring. If they’ve got something in writing, they can pop that in the calendar. If not, we would hope that a family member might pick that letter”.

SP11

Another one was checking information around mental capacity and putting mechanisms in place to support the client:

“If I see there could be issues with mental capacity, I close the case, let the GP know and I push forward for a mental capacity assessment. This would enable us to instigate power of attorney or appoint a mental capacity advocate for the client”.

SP10

If it was documented that the person was likely to have mental capacity to consent to contact but had difficulty communicating this, a good option could be to pay one or more home visit(s):

“I had a client once who was not engaging on the phone. So, I went and knocked on the door and nothing. So, I went a second, third time and eventually we got the person sat on that day. And she was totally fine talking”.

SP01

Another effective tool to support understanding was using clear and accessible language when explaining the role and potential of social prescribing:

“Describing your role rather than saying the name of the role can be helpful because for a lot of people when you say social prescribing the first thought is social worker. So, they get a little bit worried”.

SP13

Trying to establish communication with a family member could also prove very helpful, but it was important to keep in mind that ultimately social prescribing was person-centred, and clients needed to want to cooperate:

“Unless someone has got power of attorney and the person is deemed not to have any capacity, I have to listen to what the client is telling me”.

SP18

When all strategies proved ineffective, the social prescribers reported it was important to acknowledge that the client might simply not be ready to accept support:

“Then I just close the referral. But I let them know that they can always come back to us if they change their mind or that we can schedule a six-month callback as well if they want it. Sometimes people just want to know there’s that someone if they need it”.

SP12

Developing motivation and rapport

Social prescribers reported that motivation and trust were key to building rapport with clients. It was important to acknowledge some strategies to promote these. Social prescribers felt that motivational interviewing could sometimes help to empower clients with dementia in the decision-making process:

“It’s about exploring in a motivational way: how long ago did you try? What’s different now? Would you be against trying that again? Let’s have a little look at amending what you tried in the past. Let’s have a look and try”.

SP15

It could also help to instil a sense of agency and control to further motivate clients:

“I often find myself saying—we can either sit and do nothing, or we can start looking at the options. And that puts the person in much more control”.

SP11

The social prescribers reported that ultimately it was about trying to clients a vision of the changes that engaging in the process could bring in their lives:

“What would that give them? What would their life look like? What would the difference be for their families”?

SP15

Sometimes, involving family members in these discussions could help, particularly if the social prescribers were able to convey the message that they could also benefit from the person they cared for making decisions on goals and processes:

“Remember who the client is. Try to direct only some questions to those who can fill in the gap. Explain to families that they’re also going to benefit from the person deciding what it is that they want out of it”.

SP20

Identifying needs

When identifying clients’ needs, the social prescribers reported that notes on the original referral may reflect GPs’ views, and there may be discrepancies with those of clients. Needs may also have changed over time. The social prescribers suggested it was helpful to double check with clients the reasons for referral and current needs:

“Even when I read the notes on the GP, I like to let the client lead the conversation because what they said during that consultation with the doctor might change. They might need something else”.

SP17

It was key to acknowledge that when identifying needs culture sensitivity was key on the part of the social prescriber. Because of language barriers, cultural factors and background, clients might be reluctant to open up, or unable to identify and voice their needs:

“Some people do not see themselves as carers in certain cultures. They’d say—this is what you do for your family. Or in a lot of languages there isn’t a word for dementia, so it’s not necessarily understood what it is”.

SP11

It was therefore important for social prescribers to think about how to effectively communicate when supporting these clients, helping them to start conversations around and voice their needs. For example, to facilitate communication with these clients, interpreters may help, as well as involving more language-proficient family members. Another common barrier that social prescribers experienced in identifying clients’ needs was sensitivity of certain topics. A social prescribers reported finding difficulties to initiate conversations around sensitive areas:

“Sometimes I struggle to bring up the conversation myself, so most times I expect the client to kind of bring it up because you don’t want to cause that kind of conflict from the beginning.”

SP13

It was important to challenge personal assumptions and understand that because a client belonged to a certain ethnicity or have a gender identity, it does not mean they wanted to take part in activities designed for or specific to that group:

“Just from experience 50% of clients are willing and happy to engage with community service that are part of their own culture. But 50% of them just say no”.

SP13

Identifying and signposting to resources

When it comes to finding support for clients with dementia, many social prescribers reported that they started with an online search to look for evidence of effectiveness on the type of support that the client needed:

“I look online for the evidence base in the literature to have the knowledge to say for example, these are the top five exercises that are proven to be good for good brain health”.

SP04

They then identified who in the community offered that activity. This could also be done online. However, not all services were advertising online, and the information provided might not be up to date, as described by a social prescriber:

“While the website stated that the service could not offer transport, they could find ways and make budget lines work so that they could support an individual in exceptional circumstances. I only learned that by having an in-depth conversation with the people in the organisation”.

SP22

By going in person, social prescribers often found out about services that were not advertised/updated on websites:

“You won’t find out unless you go and look at places in person to check for yourself”.

SP05

Another helpful strategy to learn about resources and opportunities in the community was signing up to social prescribers’ associations and events:

“The National Academy of Social Prescribers and the National Association of Link Workers have been doing monthly newsletters with information on initiatives and activities. So, it is good to sign up. Regional conferences are also a good way to actually get all in the same room and be able to network and make those connections”.

SP22

Finally, social prescribers advocated staying curious and thinking broadly and creatively. They should look out to wider provision that they might not be as familiar with, as this may open up new opportunities for the client (and themselves).

Engaging the client in social prescribing

Social prescribers reported that they may struggle to maintain engagement of their clients with dementia throughout the support process. They often found that seeing clients in person, as opposed to holding sessions over the phone, facilitated engagement. A relaxing and informal atmosphere was key, and this could be set from the start with some small talk:

“I start by asking questions like—How was your day? Talk to me about your day—Humour also works well. Or if they’ve got a dog, I’d ask about its name, and the next time I’ll remember the name. If you show a little bit of humanity and interest, clients open up”.

SP21

Even when securing initial engagement, maintenance over time may prove problematic, because of memory problems, apathy or lack of motivation, and changes of circumstances. The sudden changes that dementia entails could be addressed by gathering ongoing consent and using summary/reminders in sessions:

“There have been times where I have to remind clients who I am really exactly, what conversations we’ve had and revisit those things over and over. So, I start every consultation with a summary of the previous session and end it with recap notes. I ask them to write these and suggest putting them somewhere visible or where they can remember. I also check with them ongoingly that they know that they are with you and that they agree to your support in this journey”.

SP10

Clients with dementia may experience “bad days” and social prescribers should be aware that strategies to engage them might not work on those days. They should therefore be flexible and open to revisit actions later on. They also reported the importance to keep in mind that to successfully engage clients with dementia, social prescribers needed to be realistic about goals they set:

“Sometimes, it is baby steps, really. The first goal that we might agree is that they’ll answer the phone to when we make an appointment, and that really is a lot sometimes”.

SP15

Acknowledging that sometimes lack of engagement may be caused by other factors that need exploring sensitively and over time was also important:

“I had somebody who wanted to be linked with activities and exercises, but when we started talking, they wouldn’t really engage. By digging, I identified mobility issues, bereavement and financial issues that created one big barrier to engagement. And once we started addressing them, the client started to engage”.

SP03

Discharge and continuity of care

The social prescribers reported that discontinuing support with clients with dementia presented with particular challenges. For example, issues of overdependency could develop:

“Suddenly the social prescriber comes in, they listen, they try to put things in place. They’ve just been given somebody who’s there for them. So, sometimes those people do hang on”.

SP03

For clients who lived alone and who had limited support from family or friends, separation could be especially difficult. In these cases, when terminating rapport, a gradual process to prepare clients may help. It started by establishing honest conversations with clients from the inception of support, in which the social prescriber set realistic expectations and professional boundaries:

“It’s about being really honest and upfront with the individual that we’re not here for long term support. We’re not mental health professionals, counsellors, or the befriending service. My job is to help them in to engage with the services that are specialised and other professionals in that field, so I’ll be doing them a disservice if I just keep them on long term. That’s really harsh to say to somebody who is isolated, but really important”.

SP15

When the time of discharge was nearing, the social prescriber invited the client to agree a post-support plan. An example was to:

“Find a local organisation who offers to go to people’s homes, spend some time with them, take them out. And collaborate together. Send them the resources you created for the client, the client’s information with their consent, and details of everything that you did. And then the organisation can take over”.

SP03

Continuing support plans ensured that in case of future need, the client could easily be referred back to social prescribing services, avoiding that they “fell into the cracks of the system”. It was important to remind clients that they could get referred to social prescribing multiple times if they needed it. Leaving contact details and information further reassured them that support was available. Social prescribers also felt that giving out personal numbers should be avoided, as clients may feel free to call social prescribers unannounced. Strategies employed to discourage this included for example that:

“Everybody has to come through the switchboard Team, who are instructed to say—Oh, sorry, Mrs. X, you’re not currently working with Y. Is there anything I can help you with? I can open a case up for you with one of our other team. We also tend to rotate to just avoid working with the same clients over and over”.

SP20

All of these strategies around discharge were in place not only to benefit the clients, but also to ensure the safeguarding, quality of work and emotional wellbeing of social prescribers.

Ongoing professional development

Ongoing professional development was an overarching theme applicable to all stages of support. Social prescribers received mandatory training, but not around dementia:

“The National Association of Social prescribers is the only mandatory training at the moment that social prescribers have to do once in post. It is made up of 10 modules that you have to complete. But there’s nothing about dementia in it”.

SP02

Social prescribers could get dementia training only if and when they chose to. While professional development should be ongoing and proactive, given the diversity of clients and referrals they received, social prescribers reported that they sought dementia training reactively, rather than proactively, typically when receiving a referral for a client with dementia. The problem was that not all clients with dementia had received a formal diagnosis yet, or dementia might not be mentioned in the referral. Without adequate training, social prescribers found themselves second guessing whether their client had dementia or not:

“It’s very hard, especially when people reach a certain stage of their life to know what normal forgetfulness or normal changes in behaviour are that come with age, and what is actually a dementia concern. We’re not particularly well trained to spot that”.

SP05

A dementia diagnosis was a key step to personalised care approaches, so it was important for social prescribers to consider ways to raise their dementia awareness. One suggested strategy was undertaking dementia training around:

“The basics, about how you speak to people who’ve got dementia and how it affects people, just to take a bit of that mystery out of it because not all link workers have had experience of dementia in their career or families”.

SP08

It was suggested that part of the training could focus on different stages of the condition, so that social prescribers were able to grasp the range of different experiences and challenges that different clients may present with. This would include being able to approach clients sensitively based on the degree of acceptance and preparedness they had towards “dementia support”:

“Before my training, I didn’t know that some people don’t want to hear the word dementia. I would take on a dementia referral, call the client and I would just say—hi, I’m calling regarding the dementia of Mr X”.

SP17

It was also helpful for social prescribers to know what the care pathway was once clients get a diagnosis of dementia:

“It would be important to learn what is the pathway from a person seeing to a GP? How do they reach the conclusion of the diagnosis? And then from the diagnosis, what happens?”

SP02

Implications for practice

There are some important implications to be derived from study findings to improve current provision of social prescribing. Exploring and identifying individual needs, and co-designing a support plan, with clients with dementia is a necessary condition to make social prescribing truly person-centred. This requires a degree of flexibility in services to allow face to face consultations and in-person home visits, as participants reported that current means of communications with clients (i.e., via telephone) are not optimal. While face-to-face visits require more financial, time and staff resources, they could pay back because they might facilitate rapport, clients’ engagement, and effectiveness of support [39]. This potential should be considered with caution at present, however, as only limited evidence exists around cost benefits of social prescribing [43].

Preparing and training social prescribers in primary care whilst addressing lack of resources in the system could be addressed through encouraging specialism in dementia, i.e., designating a “dementia-specialist” in social prescribing teams. Such experts can support the implementation of learning, developing tools, and leading on delivery of care, whilst supporting culture change and the professional development, and mentoring of more generalist colleagues. Having access to and working within teams with designated experts in dementia care (e.g., Admiral nurse) has been found to reassure and empower staff to make changes and improve dementia care in other settings, including acute hospitals [44]. Our study found that that social prescribing teams already informally share their clients based on experience and expertise, so implementing this change could be a feasible step.

Effective provision of social prescribing can also be promoted through collaborating with third sector organisations. Voluntary, community, faith and social enterprise organisations contribute to ICSs unique local expertise in working with people in the communities where they live [40]. They possess the know-how and a wealth of expertise they can share with social prescribers. Many work at the intersection of dementia and other characteristics, and can contribute resources that can equip providers with the skills and knowledge to provide highly tailored care to the diverse community of people with dementia (e.g., https://lgbt.foundation/help/pride-in-practice/). The opportunity here is to develop a community of practice with multi-disciplinary expertise to support communities who traditionally “fall within the cracks” of healthcare, including ethnically, culturally, and sexually diverse populations [45]. Meeting the distinct needs of underserved communities of people with dementia would promote an ethos of universal equitable care [46].

In terms of continuity of care services, it is also important for Integrated Care Systems (ICSs) to invest on continuing improvement of liaison, collaboration, and communication with secondary health services [47]. Existing literature on the general older population suggests that the potential of social prescribing to support clients’ health and wellbeing can only be realised through strategic alignment of local level implementation [48]. Our study findings emphasise that this is even more crucial in social prescribing with clients with dementia, due to unique challenges such as communication barriers, clients’ motivational issues and overdependency, to the importance of continuation in support and to the expectation on social prescribers to support their clients effectively by tapping into levels of competence which are beyond their remit [49].

Some initiatives with other clients’ groups have shown great potential providing a cohesive service provision model to improve effectiveness and continuity of care within and beyond social prescribing [50]. For example, a study found that social prescribers valued having access to an occupational therapist when supporting people with Motor Neuron Disease, due to the complexity of the condition and the barriers they faced [13]. Reablement services have successfully implemented this type of service model, and the Royal College of Psychiatrists has advocated the need for inclusion of occupational therapist’s expertise to address clients’ needs that go beyond the level of competence and training of social prescribers [50]. While it must be noted that all the aforementioned evidence is specific to the UK policy, systems and practice, and as such, not necessarily generalisable to other contexts/countries, this evidence presents important learning points. Effective provision for clients with dementia can be pursued through extensive collaboration with other statutory and community partners, structured processes for documentation, seamless exchange of information, and allocated case managers coordinating input from multiple agencies [51].

Strengths and limitations

This study was characterised by certain strengths. It presents evidence about challenges and offers practical strategies (Table 3) that can be used by a range of social prescribers supporting people with dementia in different roles, and which may be transferrable to other population groups. The evidence provided in this study may also be helpful to inform future practice. The study was able to recruit a diverse sample of social prescribers working within primary care and voluntary organisations, and in different roles in social prescribing, which captured a range of different challenges and solutions based on variation of service provision nationally, demographics of the area, availability of resources and demand and offer.

In terms of limitations, the sample only included participants who self-identified as social prescribers. Because of this, some social prescribers who are delivering social prescribing activities but may not have formally received accreditation as “social prescribers” may have refrained from contacting us. In addition, the study did not involve people with dementia and their families. It is important therefore, for future studies, to involve a wider range of professionals who deliver social prescribing, as well as other stakeholders.