This qualitative study explores enablers and barriers experienced by rural community organisations in engaging people living with dementia as volunteers. Semi structured, qualitative interviews were conducted with 13 individuals responsible for managing volunteers within rural and regional organisations in Victoria, Australia. Participants identified three primary factors associated with ability to engage people living with dementia as volunteers within their organisations: ability to provide suitable volunteer roles for people living with dementia, ability to resource support and ability to manage disclosure and progression. These factors were mediated by characteristics of organisational and volunteer program environments, and the attitudes and capacities of volunteers living with dementia. Findings indicate that while possible, engagement of volunteers living with dementia is potentially not achievable in all rural community settings and is contingent on flexible volunteer programs and experienced volunteer management, provision of resources to support volunteers and changing attitudes toward capacity of people living with dementia.

1. Introduction

This qualitative study explores enablers and barriers experienced by rural community organisations in engaging people living with dementia as volunteers. Understanding this is important given there are more than 55 million people living with dementia globally [1]. Given that there is no current cure, there has been an increasing focus on quality of life for people living with dementia [2]. Integral to the idea of living well with dementia are social relationships and community participation [3], with a significant proportion of people living with dementia residing in a community setting [4, 5]. A review has highlighted that people living with dementia express a desire for continuity through continued engagement in social activities and a need to feel useful [6]. Volunteering provides opportunities for social participation for older people [7], as well as opportunities for them to feel that they are contributing to society [8]. This is important for people living with dementia who often experience high rates of social exclusion and reduced perceptions of citizenship [9].

For people living with dementia, volunteering provides opportunities for practising active citizenship [10], to connect with others [11] and to contribute to their communities [12]. Given the known benefits of volunteering for people living with dementia, organisational capacity to support people living with dementia to volunteer is an important topic. However, current scholarship relating to people living with dementia and volunteering primarily focuses on experiences of volunteers in supporting people living with dementia [13–16]. While some articles focus on volunteer programs that support people living with dementia, these tend to be in clinical settings and focus on the benefits for people living with dementia [17–20] or volunteer motivation to engage in these programs [21].

There is a small body of work focussing on experiences of people living with dementia as volunteers, and the limited research available examines this phenomenon primarily within discrete, intervention-based activities [22–27]. There is little research focused on organically emerging community volunteer opportunities for people living with dementia, beyond discrete interventions. The few volunteer programs discussed recognise the potential for people living with dementia to continue to participate in their communities, through volunteering opportunities facilitated by community partnerships across various public organisations and businesses [11, 28–31]. These opportunities provided people living with dementia with socialisation benefits [11], a sense of purpose and meaning [30], support to adjust to living with dementia in their community [31] and health benefits [28].

Despite the benefits that volunteering provides, there is limited work interrogating the capacity of community organisations to support people living with dementia to volunteer, though a number of studies explore institutional capacity for engaging older adult volunteers [32–36]. This is problematic, especially in rural areas where volunteering provides older people with critical opportunities for social and civic engagement [37]. The intersection of ageing and rurality can contribute to social exclusion, especially for older people who are without access to resources, and support [38]. Volunteer activities contribute to healthy ageing in rural settings, as well as to community sustainability through the delivery of community services, including some which were previously delivered by government [39]. However, in rural communities, geographical isolation, inadequate transport and services can prevent people living with dementia from fully participating in society, which challenges their social citizenship and promotes social isolation [40, 41]. These issues are compounded by stigma associated with dementia [42]. Within a rural context, there has been some focus on volunteer support for families and carers of people living with dementia [43, 44]; however, we know little about how rural organisations can support older people living with dementia to volunteer within existing programs. This understanding is essential in promoting activity continuity for older people, who often have significant relationships with, and attachments to their rural community organisations [45]. It is also important to understand this phenomenon in the context of the resource constraints reported by rural health and community organisations, who experience significant workforce and financial difficulties in delivering services to their communities and are heavily reliant on the volunteer sector to compensate [39, 46]. Consequently, this paper investigates the practices of rural volunteer managers in engaging people living with dementia as volunteers. In doing so, it also examines perceived and actual barriers to inclusion of people living with dementia within rural volunteer programs and settings.

2. Materials and Methods

This research is situated in an interpretivist paradigm, which supports analysis of practices in context, actor/structure discourses and individual behaviours [47]. Here, this allows for investigation of the practices of engaging and managing volunteers living with dementia among diverse individual and organisational contexts, and the structural and individual factors influencing how these practices are enacted (or not enacted). This research was conducted in Australia, which has dementia prevalence rates consistent with those in other OECD countries. In 2022, it was estimated that 15 people per 1000 Australians were living with dementia, and this figure increases to 84 per 1000 among Australians aged 65 and over. Approximately one third of the people living with dementia in Australia reside outside of major cities [48]. Semi structured, qualitative interviews were conducted with 13 individuals responsible for managing volunteers within rural and regional organisations in Victoria. Victoria is Australia’s most southern mainland state and has the second-highest prevalence of dementia among Australia’s states and territories, with almost 100,000 Victorians living with dementia [48]. Approximately 24% of Victorians live in rural and regional settings, with 29% of the regional Victorian population aged over 60 years [49].

Participants were recruited in 2020 using a variety of convenience sampling approaches to ensure that an adequate sample could be obtained. Recruitment took place during the COVID-19 pandemic, where volunteers were stood down across a number of volunteer-involving organisations (VIOs) and subsequently managers of volunteers were difficult to engage. Information on the study (a recruitment flyer) was forwarded by email to a database of VIOs in rural Victoria compiled by the research team, with contact information sourced using publicly available data. This encompassed volunteer resource centres, rural local government, health and community organisations and rural volunteer networks. Advertising was also undertaken using social media.

Participants who registered interest were provided with a participant information and consent form (PICF), to be returned prior to interview. The study received ethical approval from the lead researcher’s university human ethics committee, and all participants provided informed consent. Single interviews were conducted by telephone by the first and third authors (who are female, have PhDs and significant experience undertaking qualitative interviews and are working as academic researchers) and lasted between 40–90 min. The first author has a research interest in the rural volunteer sector, with particular interest in how volunteering supports healthy ageing. The third author has a research interest in active citizenship and citizenhood for people living with dementia. Only the interviewer and participant were present. Participants were provided with a copy of the interview schedule prior to interview, and the interviewer had a conversation with the participants prior to interview where they introduced themselves and the background to the study and their interest in the topic. Some of the participants (3) were aware of the first author’s interest in the topic based on their knowledge of previous research projects. Topics explored included current engagement of people living with dementia as volunteers within their organisations, current organisational policies or approaches aimed at increasing participation of people living with dementia as volunteers, perceived or actual facilitators or barriers to having people living with dementia as volunteers and support needed to better engage people living with dementia as volunteers. The interview guide was piloted with two volunteer managers prior to use.

Interviews were audio recorded and transcribed with participant permission. While transcripts were not returned to participants, participants were followed up where terms used in interview transcripts were unclear. Transcripts were uploaded into a qualitative data analysis program (QSR NVivo) and analysed deductively in accordance with the interview questions. Field notes compiled by the interviewer were cross checked against these codes to ensure key interview themes were maintained. Two coders were involved in coding the data. Initial coding was undertaken by the second author and checked and further refined by the first author, with changes to code structure and content discussed and resolved. Codes were also further reviewed once article writeup commenced to ensure fidelity of codes was maintained. To interrogate the key research question, data relating to enablers and barriers were subcoded inductively using open coding. Using an axial coding process, these subcodes were then grouped under categories, where subcodes from both the enablers and barriers questions were reviewed, compared and contrasted to identify key categories that were salient to both questions. Finally, selective coding took place, where these categories were further collapsed to identify three key themes—matching volunteers to roles, resourcing support of volunteers and managing disclosure and progression.

3. Findings

A total of 13 participants were recruited and given that themes discussed were relatively consistent across the sample at first analysis; this sample was deemed sufficient for the study. The 13 participants represented a diversity of organisations and geographic contexts (see Table 1) but had a high prevalence of managers from health-related organisations. Only one male participant was recruited, which largely reflects the service profile of volunteer managers as being primarily female [51]. Participants were recruited from most of the non metropolitan remoteness health classification regions in Victoria. Only remote and very remote regions were not represented, which reflects the limited number of these regions in Victoria, and the reduced likelihood of having social infrastructure to support volunteers in these settings.

Table 1. Participant profile.

	Gender	Type of volunteer involving organisation	Level of rurality ^∗ [50]
VL1	Female	Health organisation	Medium rural town (MM4)
VL2	Female	Health organisation	Large rural town (MM3)
VL3	Female	Local government	Large rural town (MM3)
VL4	Female	Not-for-profit organisation	Large rural town (MM3)
VL5	Female	Health organisation	Medium rural town (MM4)
VL6	Female	Health organisation	Medium rural town (MM4)
VL7	Male	Health organisation	Regional centre (MM2)
VL8	Female	Health organisation	Medium rural town (MM4)
VL9	Female	Volunteer network	Regional centre (MM2)
VL10	Female	Health organisation	Small rural town (MM5)
VL11	Female	Health organisation	Medium rural town (MM4)
VL12	Female	Community organisation	Large rural town (MM3)
VL13	Female	Community organisation	Medium rural town (MM4)

^∗The Modified Monash Model classifies metropolitan, regional, rural and remote areas according to geographical remoteness, as defined by the Australian Bureau of Statistics (ABS), and town size, and is primarily used for workforce purposes. It classifies regions into seven types of regions (MM1-7), with higher numbers indicating higher levels of remoteness.

Participant organisations engaged volunteers in different ways. Roles ranged from direct provision of services to program support, social companion roles and gardening/repair tasks. Approximately half of the participants had previously or were currently managing volunteers living with dementia, where it had been specifically disclosed to them. Others were not aware of volunteers that had a formal diagnosis but had noticed memory loss or cognitive decline among older volunteers. As one participant noted, there was generally no reason for them to know, stating “if it’s not obvious through behaviour or something that happens, we’ve got no reason to bring it up” (VL10). Consequently, participants who said that they were not currently managing volunteers living with dementia were relatively noncommittal in their responses. As one participant admitted, “I’m not aware of any… But that doesn’t mean that I haven’t got them” (VL6).

Existing volunteers living with dementia were primarily current long-term volunteers within their respective organisations who had developed dementia, as one participant related “it seems to be a progressive thing, that people might start volunteering and then it progresses into—well this is the way my ageing is going and damn it, I’ve got dementia—then how do I continue to try and be useful and make a contribution?” (VL2). However, one participant described recruitment of volunteers with a dementia diagnosis who were new to their organisation but had had life-course experience volunteering in other settings. This was either initiated by families or a referral from a health service based on the organisation’s perceived capacity to support volunteers living with dementia as this participant described “they (health service) know that we are a safe and welcoming place that can support them, so they recommend them on to us” (VL3).

3.1. Ability to Provide Suitable Roles for Volunteers Living With Dementia

In discussing enablers and barriers relating to engagement of volunteers living with dementia (both perceived and actual), the first key theme related to organisational ability to provide suitable roles. Many participants referenced a culture of inclusion relating to volunteering, and a person’s dementia diagnosis was viewed as secondary to their ability to perform a role, as one participant suggested, “there is a job description … and so if someone turns up and says, I’d like to do this and I’m really interested in recycling, and it turns out that they have dementia, I don’t care” (VL12). Participants from organisations with capacity for more diverse roles suggested that recruitment was often based around developing roles that supported people’s skills and capacities:

We have roles but we don’t recruit specifically to a very structured role. So we have areas that people volunteer in. So (organisational unit) is a really good example. We have volunteers in there, but we don’t have A, B, C, D positions. It’s all about, what do you bring to the table? What skills and abilities have you got? (VL2).

However, participants identified three key concerns that would impact their ability to provide suitable roles. The first was their capacity to provide roles that were safe for volunteers living with dementia. This reflected their ability to provide roles that were not located in high-pressure, dynamic environments that did not require complex interactions, high-level occupational health and safety requirements or significant levels of responsibility or autonomy. As one participant related, it was about assessing “does this situation cause any undue stress for that person because, again, if someone gets stressed while they’re in that role that can open up a whole other can of worms” (VL5). Given their familiarity with dementia-related behaviours, a number of participants highlighted the benefits of aged care environments for volunteers as one described in relation to a previous volunteer:

I mean we were lucky with (volunteer) that not only am I saying that the fact that she was in an aged care environment meant that it felt like she was somewhat safe. But also the fact that she was in an aged care environment meant that everyone who was working with her had a really good understanding of dementia (VL8).

Participants also highlighted the utility of engaging people living with dementia in volunteering roles such as backroom tasks, activity preparation, social visiting and knitting. Alternatively, activity-based roles where volunteers could engage as hybrid volunteer-participants within supervised activities could be beneficial:

What I did was let them come in and be volunteers in our aged care but spoke to the staff and got them to include them as participants. Like—you know, sort of helping. Like I would say to them, you’ve got to help (this person) play bingo… it’s taken a bit of time but because we’re a small community and everyone knows everyone, it’s worked quite well (VL1).

The second concern identified was the organisation’s ability to provide roles that were meaningful to the volunteer while enabling them to actively contribute and participate, as well as being safe:

It can’t all be one way. They have to want to come and do it and the sense of feeling that they’re feeling good about themselves. I′m just not sure, depending on I dare say the severity of the dementia, (how we) would ascertain whether that was being met or not (VL6).

This was contingent on having meaningful work that the person living with dementia could complete in their role that also met their social and occupational objectives for participating in that activity. In some instances, this was seen as challenging, especially where volunteers did not have the capacity to be flexible within their roles and required significant direction. One participant questioned, “if I’m away or something’s fallen down, or there’s no work for them to do, what would I get them to do instead? I do find I’m much more cautious with those volunteers, and much more cautious that they do have something good to tackle that week” (VL7).

However, roles similarly needed to suit the organisation’s requirements, in that they needed to fill an emergent need or objective within the organisation. For organisations or sectors with less flexible, higher responsibility models of volunteer involvement, maintaining the balance between accommodating volunteers living with dementia and fulfilling the requirements of a volunteer role was not always possible:

Volunteering is a very powerful thing and clearly, a lot of GPs are recommending it to people with mental health or disability or—go and volunteer. Very often, those people will go to the biggest organisations, but it’s not always as easy as that. Some people are just not suited to some sectors (VL9).

So if we’ve got somebody with dementia who wants to volunteer but they’re actually struggling with it more than the clients they’re wanting to volunteer with, then we really have to look at their capacity to do the job (VL11).

Consequently, the ability of organisations to provide suitable roles was a delicate balance between individual capacities and interests and the capacity of the organisation to be flexible.

3.2. Ability to Resource Support for Volunteers in Their Roles

The second key theme related to organisational ability to resource support of volunteers living with dementia. In discussing the provision of suitable roles, there was explicit discussion of the potential staffing impost of providing support to volunteers living with dementia, within the constraints of existing resource pressures. Participants discussed the need for volunteers living with dementia who had memory loss or trouble communicating to have someone with them. This could be accommodated where these volunteers were working in closely supervised environments or buddied up with a family member, as one participant described “we have one gentleman who goes out and does (volunteer role). But he now takes his wife with him because he’s got to that stage where he, himself, needs a bit of prompting. So it’s great that she supports him to go and do that. He’s been with us over 10 years” (VL2). Some organisations also had models in place where the buddy was another volunteer who was aware of their role as a support person, as another participant explained “we would put them with another person… those volunteers that are in that role, they know and understand why they’re there” (VL5). However, a number of participants questioned the potential willingness of volunteers to support volunteers living with dementia where they had not elected to take on a buddy role, with one stating:

I’d like to think that all of the volunteers would, in that context, be really supportive, but in all honesty they wouldn’t. Some people just like to go and do their hours and not have to fuss about anybody else and that would put them off coming and then I would lose them and the other person’ (VL13).

Regardless, participants were clear that volunteers living with dementia could not be accommodated where there was a significant impost on staffing, as they did not have the resources or funding to support active supervision:

If it is going to be effectively looking after them while they’re onsite, that’s probably not going to work, not having another responsibility for the staff member. The volunteer is supposed to assist the staff member, not be another thing they need to look after, person they need to look after (VL10).

This reflected not only active supervision of the volunteer but also the ongoing time investment involved in juggling the provision of suitable roles, sourcing and providing specialised training around dementia and ensuring that rostering reflected the level of support needed. As a number of participants suggested, there were no extra resources allocated for supporting inclusive models of volunteering despite their desire to accommodate it:

You want to put people on from all abilities and you want to support everybody to do that but if you’ve got a budget constraint that says you’re losing money hand over fist because it takes three people to do a job of one, then there’s got to—as harsh as it is, you′ve got to figure out how you make that work (VL2)

Issues related to resourcing were seen as more challenging in rural and regional locations where organisational budgets were smaller and volunteer management itself was often not well resourced:

They (volunteer managers) might be allocated to volunteer coordination for one day a fortnight or six hours a fortnight. What can you do on that? So that makes it super difficult. More so here—again, more so here I think in the rural and regional areas because there are less resources, there’s the tyranny of distance, there is an ageing volunteer population (VL9).

Consequently, as these quotes demonstrate, greater resource support was seen as essential to ensure that rural community organisations could support people living with dementia to volunteer.

3.3. Ability to Manage Disclosure and Progression

The third theme discussed by participants related to their ability to manage disclosure related to dementia and the subsequent progression of symptoms associated with dementia. Specifically, there was an observed tension between maintaining the confidentiality of volunteers in terms of their dementia diagnosis and ensuring they were adequately supported within the organisation. Participants agreed that disclosure of a dementia diagnosis required a level of trust and was not necessary unless it impacted on the ability of a volunteer to complete their work. As such, they would not bring this up with a volunteer unless it was impacting on other volunteers or the function of the organisation, with one participant noting “unless they wanted to disclose, I would be just a lot more vigilant” (VL12). Specifically, there was a desire not to label volunteers as one participant explained “you don’t want to label them and make it a thing. You want their lives to be as normal within the community as any other person or as they were before” (VL3).

Disclosure could also potentially create stigma when integrating volunteers into organisational settings. As one participant related, staff could be wary about supervising people with memory loss or cognition challenges. This was based on both a perception that they would need significant support and a lack of awareness as to how to support these volunteers:

I have it already when we have volunteers who might be living with disability. Even before the supervisor has even met them, (they are)—very nervous about recruiting volunteers who are living with disability, even when they just hear the words and don’t even know what the disability might be (VL8).

However, disclosure was helpful in that it enabled the right supports to be put in place for that person as one participant described “we can then share that information with the people who would be working with them, because those people are going to need to support that person if they suddenly do forget what they’re doing or where they are or whatever it might be” (VL10). Where participants had volunteers living with dementia within their organisations, they were generally well received, as one participant described:

I don’t really see a lot of stigma around it here. Obviously, there is a fear of when someone’s diagnosed and their family and the unknown. But that would apply everywhere, I think. But there’s not a real stigma where, oh my god, he’s got dementia, what’s he doing volunteering, or why hasn’t he been retired. We’re pretty lucky that way’ (VL3).

A reluctance to disclose, therefore, presented a tension between “prepared for what’s around the corner, while still respecting (their) rights and dignity” (VL8).

Another key challenge for participants related to the management of volunteers living with dementia who were no longer able to fulfil their current volunteer roles. Role modification related to the emergence of behavioural or cognitive changes was raised by a number of participants, in terms of being able to sensitively address this:

I think the hardest thing would be at the point at which you’d have to say this is no longer working. So you take someone on when they’re quite high functioning, but they have dementia, they’re deteriorating. I would then have the staff contact me saying, look, this is not working. This happened, we had an incident with aggression, so I think that would be the biggest challenge. How to have those conversations when they are no longer—they’ve aged out so to speak or they’ve deteriorated to the point where they’re not able to do the job or they’re more disruptive than helpful (VL11).

A particular challenge in this circumstance related to ensuring that the position of the organisation as inclusive was maintained as one participant admitted, “you’re sort of walking a very fine line of am I going to be seen as not supporting people with disabilities or is this a reasonable thing to say?” (VL9).

Where role modification conversations had been successfully achieved, volunteers had proactively addressed this with volunteer managers, as one participant described in relation to one of their current volunteers:

She’s approached us—she said a couple of years ago, this is my diagnosis, this is what the doctors told me. We sat with that for a while, and she kept volunteering here on a weekly basis. Then, in discussions with her, stepped her back (VL7).

It was important that the process of modifying roles was gradual and gentle, as another participant related:

We’ve gently taken them—progressed them off the oneon- one community-based volunteering. So instead of them being matched up to people out in the community, we’ve progressed them into maybe caring for people in a nursing home and then from there, because it then becomes a safe place (VL2).

It was preferable to have the volunteer identify that they were not able to undertake their volunteer roles, or that modification was needed, and often this involved active consultation with family members. However, participants highlighted challenges associated with these conversations. Primarily, this occurred where volunteer leaders had been forced to have conversations with volunteers based on an observed or reported inability to perform their role rather than an elective conversation. Challenges were also observed where volunteers were not willing to change their roles, as one participant described:

We had a chat with her husband, and as part of that, she took a short-term break, which then extended, and she actually did not then make a return. We didn’t manage to find a way forwards. She was very set on the role that she wanted and didn’t want to be reallocated to a different area (VL7).

This was linked to the routine that the role provided, which was seen as a source of security. Coupled with reduced cognitive ability to understand change, this proved challenging in terms of having conversations around role modification or cessation:

There’s not the same, I guess, level of comprehension when we’re at that point of retirement. Like I said, it’s very much habit. That that’s where they should be on that day because that’s what they′ve always done. So there isn’t that level of understanding of why we’re making changes or that it′s time (VL3).

Managing a change in volunteer roles with families could also be challenging, particularly where volunteering provided respite for family members as one participant related, “they (the carer/family member) will become quite defencive if the volunteering stops because it impacts on the caretaking or their level of freedom; their day off” (VL9).

4. Discussion

Drawing on perspectives from rural volunteer managers, this study has contributed new knowledge in relation to organisational, program and environmental settings that can support and hinder engagement of volunteers living with dementia in rural community settings. It has identified that rural organisations are supportive of engaging people living with dementia as volunteers and are successfully doing so. Their ability to do this, from both a current and future perspective, was linked to their ability to provide suitable roles, to resource support and to manage disclosure and progression in roles. Barriers and enablers to doing so were observed at varied levels of environmental context. Organisational environments with inclusive policies and flexible recruitment protocols, with volunteer opportunities that were low-pressure and low responsibility and/or routine and sequenced, were viewed as beneficial in fostering opportunities. However, this was contingent on having staff that could match volunteer capacities to roles and appropriate supervision or support in place where required. At the individual level, this was also enabled by the person’s desire to disclose their dementia diagnosis and by pursuit of volunteer opportunities in familiar environments. Conversely, organisational environments that required high levels of autonomy and responsibility, and adherence to strict safety and role protocols, were seen as barriers. Other barriers to engagement encompassed staff lack of knowledge and awareness related to the actual capacity of volunteers living with dementia to undertake training and volunteer activities and the capacity of volunteer programs to provide adequate resource and knowledge support. This was mediated by the extent to which volunteers were exhibiting behaviours associated with dementia and their level of flexibility in working with organisations to accommodate these.

These findings suggest that while possible, engagement of volunteers living with dementia within rural community organisations is potentially not achievable in all settings and is contingent on flexible volunteer programs and experienced volunteer management, provision of resources to support these volunteers and changing attitudes towards capacity of people living with dementia. These findings build on existing data related to volunteering among people living with dementia, including the importance of having skilled, innovative program staff with knowledge of dementia [30, 31], challenges relating to capacity of volunteers living with dementia [30], difficulties broaching the topic of cognitive decline with older volunteers [52], lack of organisational support for volunteers living with dementia [30] and the importance of providing buddying support [53]. In addition, these findings are significant in the context of contemporary issues being faced by both the rural volunteer and dementia care sectors. These include policy initiatives seeking to make volunteering more inclusive and accessible to diverse groups [54], the role of volunteering in maintaining citizenship of people living with dementia [55, 56] and neoliberal policies increasing rural community reliance on the ageing volunteer sector [57]. Specifically, they highlight two key tensions.

First, questions must be raised about the long-term capacity of the rural volunteer sector to accommodate inclusive volunteering. In rural contexts where organisations rely on volunteers to deliver services and supports in the face of significant workforce constraints [39, 58], these tensions relate to balancing necessary levels of volunteer service provision with accommodating needs and capacities of volunteers who require support. The genuine inclusion of people living with dementia should address key human rights principles, which ensure equal treatment, equal opportunities and equal access [59]. As Bartlett and O’Connor [60] suggest, the citizenship lens applied within the contemporary dementia literature emphasises its utility in recognising stigma and discrimination by supporting active citizenship. However, they similarly recognise that declining cognitive abilities may restrict the capacity of people living with dementia to fully perform their responsibilities and exercise their rights. While the volunteer leaders in this study demonstrated significant ability to make “reasonable adjustments” [61] to volunteer roles, the ability of all rural organisations to do this, given the scarcity of volunteers and their role in direct service provision, must be questioned. Given the role that “buddy” volunteers played in providing supportive environments for volunteers living with dementia, this research also raises questions around the extent to which rural volunteers wish to, or should be expected to, accommodate the support needs of other volunteers. Research has highlighted the emergence of voluntarism as an activity of consumption, where prospective volunteers select volunteer activities based on individual interests and goals [62]. In this context, such a model would only work if supporting volunteers living with dementia fit with volunteer interests and goals. This suggests that no matter how dedicated organisations are to the cause, facilitating inclusive volunteering in resource-poor rural contexts may be challenging. To this end, inclusive rural volunteer programs will need strategic resourcing from organisations and governments to ensure that volunteers living with dementia can participate fully, and the rural volunteer sector is not being subjected to further pressure.

Second, this research has highlighted tensions around respecting confidentiality and privacy relating to disclosure of a dementia diagnosis, while providing a supportive environment. Notable here are the difficulties associated with actively promoting rural organisations as a safe space for people living with dementia, while acknowledging limited capacity to accommodate large numbers of these populations, and at the same time not wanting to stigmatise people living with dementia. While disclosure of a dementia diagnosis can result in discrimination and stigma and is a barrier to participation of people living with dementia in volunteer programs [30, 31, 63], it can also empower people living with dementia and help to combat stigma through challenging society’s beliefs about incapacity by modelling agency and empowerment [63]. While participants demonstrated an understanding around the reluctance of volunteers with dementia to disclose a diagnosis, they also noted that appropriate support could not be provided without disclosure. Disclosure can also pave the way for citizenship, as it can lead to the implementation of adaptations [63, 64]. To ensure support for people living with dementia, volunteer organisations need to be informed of a diagnosis; however, the process of disclosure needs to be sensitive and uncomplicated. Volunteer managers also need training, resourcing and support to empower them to have conversations with volunteers in relation to role modification, and/or the cessation of volunteer activity. This is supported by research examining management of older volunteers more generally, where volunteer managers reported a lack of skills and training, experiences of frustration relating to performance-related conversations with volunteers experiencing cognitive decline and the time taken to manage performance [52]. In addition, volunteer managers can feel frustration at the amount of time it can take to support and assist a volunteer whose capabilities are changing [52]. Consequently, given the ageing profile of rural volunteer organisations [65–67], training and education for volunteers and managers is crucial to managing volunteers with dementia.

Given that this is only a small qualitative study conducted in one Australian state, these findings are not representative of the views of volunteer managers in different geographical or social contexts. Moreover, it should be acknowledged that the sample had a high prevalence of managers from health-related organisations and, consequently, other types of organisations should be explored. Despite these limitations, findings highlight important resourcing, training and management issues associated with recruitment and retention of rural volunteers living with dementia. These must be addressed, given the importance of volunteering in facilitating community participation and recognising the social citizenship status of people living with dementia [68]. More work is needed to explore the experiences of volunteers living with dementia in rural community settings, in order to determine how they can be better supported. However, given the precarious nature of the rural volunteer sector, this research has highlighted some challenges in ensuring that all rural organisations and volunteer roles can be accessible to people living with dementia, in terms of maintaining the rights of other volunteers and supporting the ability of rural community organisations to fulfil their service responsibilities. Policies promoting inclusive forms of volunteering and social prescription initiatives aimed at increasing participation among people living with dementia must consider the resource requirements of rural community organisations—in terms of funded coordination, upskilling and training. Addressing these needs is crucial in ensuring that volunteering can meet both the social and role identity needs of its participants and provide the types of assistance that rural community organisations desperately need.

Conflicts of Interest

The authors declare no conflicts of interest.

Funding

This study was funded by La Trobe University’s Transforming Human Societies Research Focus Area.

Open Research

Data Availability Statement

The data are not publicly available due to ethical, legal or other concerns.

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Rural Stakeholder Perspectives on Engaging People Living With Dementia as Volunteers

Abstract

1. Introduction

2. Materials and Methods

3. Findings

3.1. Ability to Provide Suitable Roles for Volunteers Living With Dementia

3.2. Ability to Resource Support for Volunteers in Their Roles

3.3. Ability to Manage Disclosure and Progression

4. Discussion

Conflicts of Interest

Funding

Open Research

Data Availability Statement

References

References

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Rural Stakeholder Perspectives on Engaging People Living With Dementia as Volunteers

Abstract

1. Introduction

2. Materials and Methods

3. Findings

3.1. Ability to Provide Suitable Roles for Volunteers Living With Dementia

3.2. Ability to Resource Support for Volunteers in Their Roles

3.3. Ability to Manage Disclosure and Progression

4. Discussion

Conflicts of Interest

Funding

Open Research

Data Availability Statement

References

References

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