Introduction
Approximately 36 million people worldwide were living with dementia in 2010 (Alzheimer's Disease International, 2009). This number is projected to nearly double every 20 years to 66 million in 2030 and 115.4 million in 2050 and between one-third and one-half of all people with dementia are expected to live in residential care homes (Knapp and Prince, Reference Knapp and Prince2007; Macdonald and Cooper, Reference Macdonald and Cooper2007).
Dementia is associated with cognitive decline as well as behavioral and psychological symptoms (BPSD). In the population-based Cache County study in the USA, 61% of people with dementia had exhibited one or more behavioral or psychological disturbance in the past month. Apathy (27%), depression (24%), and agitation/aggression (24%) were the most common symptoms (World Health Organization, 2004). Rates are even higher in residential facilities (Knapp and Prince, Reference Knapp and Prince2007). For example, in a survey of 11 Australian nursing homes, 53% showed activity disturbance and 77% were aggressive (Brodaty et al., Reference Brodaty2001). BPSD are an important cause of carer burden (Perkins et al., Reference Perkins2002) and a common reason of institutionalization (Knapp and Prince, Reference Knapp and Prince2007). Symptoms stemming from pain, major depression, or psychosis benefit from treatment with analgesics, antidepressants, or antipsychotics respectively. In other cases, psychotropic medications have limited efficacy and frequent side-effects (Schneider et al., Reference Schneider, Dagerman and Insel2006), prompting interest in non-pharmacological interventions that are associated with fewer risks (O'Connor et al., Reference O'Connor, Ames, Gardner and King2009a; Reference O'Connor, Ames, Gardner and King2009b).
A recent meta-analysis showed that sensory interventions like aromatherapy and hand massage showed moderate efficacy in reducing agitation (Kong et al., Reference Kong, Evans and Guevara2009), and two recent reviews concluded that one-on-one social interaction, individualized music, recreation therapy, and family videotapes were more effective than control conditions offering an equivalent level of social interaction (O'Connor et al., Reference O'Connor, Ames, Gardner and King2009a; Reference Orsulic-Jeras, Judge and Camp2009b). The largest effect sizes were found with treatments tailored to participants’ backgrounds, interests, and skills. For example, music that participants had enjoyed earlier in life reduced agitation better than standard classical music (Gerdner, Reference Gerdner2000) while audiotapes of a family member's voice worked better than a stranger's voice (Garland et al., Reference Garland, Beer, Eppingstall and O'Connor2007). Treatment effect sizes reached 0.7, exceeding those of some psychotropic medications (O'Connor et al., Reference O'Connor, Ames, Gardner and King2009b). Although it is widely recommended that non-pharmacological interventions are attempted first to manage agitation (e.g. Ballard and Corbett, Reference Ballard and Corbett2010; Gauthier et al., Reference Gauthier2010), nurses continue to request drug treatments for BPSD for the majority of residents and physicians continue to prescribe them (Cohen-Mansfield and Jensen, Reference Cohen-Mansfield and Jensen2008a). In addition, physicians believe that most aspects of their involvement in treating behavior problems associated with dementia in nursing homes should increase (Cohen-Mansfield and Jensen, Reference Cohen-Mansfield and Jensen2008b). Despite a growing evidence base, it has been our experience that personalized activities are frequently not implemented in aged care facilities on a one-to-one basis. Preparation and implementation are time-consuming; too few staff members are available, and staff often lack training. As an alternative resource, aged care volunteers could assist with the implementation of personalized activities.
Volunteer work has been defined as unpaid work that benefits other persons to whom no obligation is owed (Gottlieb and Gillespie, Reference Gottlieb and Gillespie2008), thereby excluding family caregivers. Based on recent surveys, 26% of the US population (Bureau of Labor Statistics, 2010), 34% of the Australian population (Australian Bureau of Statistics, 2006), and 73% of the England and Welsh populations (Volunteering England, 2008) had volunteered in some capacity in the previous year. As many as 48% of English and Welsh adults had volunteered at least once a month while Australian volunteers contributed 713 million hours annually to their communities, mostly in the areas of sport and physical recreation, education and training, community welfare, and religion. Within the aged care sector, volunteer programs in nursing homes are common (Australian Bureau of Statistics, 2006) but Damianakis et al. (Reference Damianakis, Wagner, Bernstein and Marziali2007) noted a tendency for volunteers to pay few visits to the more cognitively impaired residents, possibly because of a fear of dementia (Robinson and Clemons, Reference Robinson and Clemons1999).
Given the potential for volunteers to engage residents with BPSD in therapeutic personalized activities, the current study aimed to explore the recruitment and training processes, characteristics, motives, capabilities, and experiences of current volunteers in the Australian aged care sector both from the perspective of facility representatives and volunteers themselves.
Methods
Participants
Australian aged care facilities provide accommodation and care to individuals who are no longer able to live at home. Fees are subsidized by the Federal Government, which also regulates care standards and selects residents based on evidence of need. There are two levels of care: low and high. Increasing numbers of facilities offer both levels of care whereas older homes tend to provide just one level.
Seventeen of the 23 aged care facilities in the Kingston region of southeast Melbourne, Australia, engaged at least one volunteer and were therefore eligible for the study. A staff member from each of the 17 facilities agreed to be interviewed and to seek the participation of at least one volunteer. Nine facilities provided low-level care, five provided high-level care, and three provided a mixture. Bed numbers ranged from 35 to 119 with full, or near full, occupancy at the time of study. We interviewed eight managers, eight lifestyle coordinators, one volunteer coordinator, and one staff development coordinator (in one facility, both the manager and lifestyle coordinator participated) together with 39 volunteers.
Procedure
A single researcher (SG) conducted semi-structured face-to-face interviews with both facility staff members and volunteers. Interviews with facility representatives focused on recruitment, induction, type of activities, and benefits and difficulties of working with volunteers. Volunteer interviews focused on the volunteers’ expectancies and experiences and the type of activities they engaged in with residents. We also asked volunteers if they would be interested to learn new methods of interacting with residents. All participants gave written informed consent to the study, which was approved by the Monash University Human Research Ethics Committee.
The interviews were audio-taped and then transcribed by an independent professional company. We used qualitative content analysis to code and analyze the data, which involves researchers closely scrutinizing the data to identify patterns related to each interview question (White and Marsh, Reference White and Marsh2006). The data were coded by two researchers who worked independently (EvdP and TM) to identify common themes, categories, and issues across interviewees. Each transcript was read several times by the two researchers before discussion. The researchers agreed on the categorization of most replies (agreement of 89%–98% per topic) and discussed items with divergent scores to reach consensus (Pope et al., Reference Pope, Ziebland and Mays2000).
In the Results section, we present percentages of respondents in certain categories as well as a selection of quotes throughout the paper to illustrate key points. Facility staff (#1–17) and volunteers (#18–57) were allocated a code, which is provided at the end of each citation to demonstrate our sampling of quotes from a range of facilities and volunteers.
Results
Participants
We interviewed eight managers, eight lifestyle coordinators, one volunteer coordinator, and one staff development coordinator (in one facility, both the manager and lifestyle coordinator participated). All facilities employed lifestyle coordinators who devised and ran a range of activities. Volunteers participated in five activities on average (range 2–9). The most common activities included outings or bus trips, games, one-on-one conversation, and walks.
The average number of volunteers per facility was five with a range of one to 18. Thirty-nine volunteers participated in our interviews. Most (79%) were female. Their mean age was 67 (range 19–90) with two-thirds aged 65 years or older. Half were married and one-third were widowed. Nearly all (95%) had some form of secondary education. Four had completed or were currently enrolled in a university course. Just over half were born in Australia. Another 23% were born in English-speaking countries with the remainder coming from Greece, Germany, Mauritius, and Sri Lanka. Eighty-two percent reported English as their first or preferred language. One-third reported speaking another language in addition to English. Volunteers had attended their current facility for between 1.5 months and 19 years and contributed an average of 5.5 hours per week (range 0.5–35).
Recruitment and motivation
Three-quarters of facilities reported finding volunteers via word-of-mouth contact through staff, family and friends of residents, and current volunteers. Most (71%) had also received unsolicited approaches.
They would usually walk in the door, we don't really advertise externally, but we have often had a sign up inside the facility. (#17)
Other recruitment strategies included advertising through newspapers and newsletters (n = 5), churches (n = 5), community centers (n = 4), and the local council (n = 3). Frequently, combinations of recruitment techniques were employed.
It's usually word of mouth, but we also advertise through the church magazines. Some of our volunteers are members of churches . . . through the local city of Kingston newspaper, because we belong to the city of Kingston, and that would be about it. We often have people just come into the door. (#14)
People's motives to volunteer at aged care facilities were categorized as self-interested, altruistic, or neutral. Nearly half of them mentioned at least one factor related to their own needs, such as keeping themselves occupied after retirement (n = 7) or after losing a spouse (n = 4), meeting a requirement for volunteer work to receive financial support from a government agency (n = 4), or obtaining work experience for a university course or job (n = 3).
I think it has helped me deal with what I've been going through in the last couple of years. It's really given me purpose in life and it's good to know that I am perhaps able to help somebody. (#31)
Nearly a quarter (21%) mentioned altruistic reasons with seven volunteers stating they wanted to give something back to the community and one individual reporting that she realized the great need for one-on-one interaction in this setting.
I always wanted to help people. I always said to my husband “as soon as we finish with the shop, I want a volunteer job one day” to spend my time and help people. (#43)
My husband's great aunt came here and my father-in-law had time here and when aunty was here I realized that there was a need for more one-on-one assistance I suppose, or not assistance, communication. (#33)
Neutral reasons included familiarity with aged care as previously they had visited a friend or relative in the facility (n = 9) or because they cared for an ill elderly relative (n = 6). Some were encouraged by a friend who was an employee or volunteer at the facility (n = 8). Some joined through their church (n = 5), because they lived nearby (n = 4), or in response to a newspaper advertisement (n = 2). Most volunteers reported a mix of motivational factors.
My mother passed away. I'd been caring for her for a long time. Primarily because I only had one year to retirement and that was the only way I could get any income from the support agency was to do voluntary work . . .. At first it was filling the gap of losing my mother. But now I think it's seeing that you can, that residents like to see you come and interacting with them and I get pleasure out of that. (#40)
Criteria and training
All facilities subjected volunteers to a police check and an interview. In the interview, staff frequently aimed to obtain information on volunteers’ personalities (n = 9), their motivation for volunteering (n = 5), and insight into what volunteers would like to do (n = 5).
Willingness. Openness. That sort of qualities. (#3)
[. . .] and I usually get a bit of an idea from that interview process whether or not they'll be suitable for our facility . . .. Sometimes people come in with good intentions to volunteer, but it's really more about themselves than about actually doing good for the community. (#9)
With volunteers we've sort of got to look at what they want to do . . . and sometimes they can have needs as well. Sometimes volunteers can be lonely. So sometimes it's them coming to sit down and chat and to fill their need as well. (#8)
Nearly every staff member explicitly mentioned informing volunteers about relevant policies and the importance of confidentiality. Seventy-one percent provided some on-site training focusing specifically on dementia. Four facilities offered (additional) in-depth training on the condition and two referred their volunteers to Alzheimer's Australia for further education. One-third of facilities mentioned providing information on guidelines regarding privacy issues, role definition, and elderly abuse.
One of the things that we frequently have to revisit are boundaries, what a volunteer does and what a staff member does, and so that's all part of the ongoing education and support, and just making sure that they're comfortable within here, making sure the staff aren't asking them to step over the line in any way and reminding staff that volunteers are just that, and that there is a role for volunteers and we're very clear about the sort of duties they should not undertake as part of their training. (#14)
As the facilities had provided us with comprehensive information on the training and induction they provided, we focused with volunteers on their subjective perceptions of these processes. Seventy-four percent reported that their training and support were sufficient or of high quality.
The support here and the acceptance – we're just treated like any other member of staff. There's no difference whatsoever. You're just made to feel so welcome and so much part of it. (#51)
Several volunteers (18%) made the following suggestions to improve training: four would have appreciated a full induction, including training on how to interact with residents, and three stated that they would have liked more support for volunteers in general.
I suppose if they were to give a breakdown of the main illnesses or diseases that the residents are having . . . it would give you more insight into what to expect the resident to – how they're going to act. (#18)
Perceived benefits and difficulties
Staff differed greatly in how they utilized volunteers. Some involved them in activities initiated by lifestyle staff. Others invited volunteers to visit one resident in particular for one-on-one conversation, and some had volunteers perform one specific activity, usually utilizing known skills or resources, e.g. pet therapy or massage therapy with interested residents. More than half of the staff mentioned involving volunteers in the following activities: outings (e.g. bus trips and shopping), one-on-one interaction, and games (e.g. bingo).
Two-thirds of facility staff reported they considered volunteers as a needed extra pair of hands, an additional resource.
They are invaluable, volunteers are invaluable. Dementia specific facilities need a high staff ratio and whilst we can cope with the care side of things, the lifestyle, the quality of life activities would be desperately lacking if we didn't have volunteers, especially for people with dementia, because they need more one to one, they need small group activities. (#14)
It also means that any activity lifestyle staff runs can be larger, because there's more support. (#10)
Approximately half of the staff members mentioned the engagement and stimulation resulting from volunteers’ visits and bonding between residents and volunteers as positives.
I think if they didn't have the volunteers then my thinking would be that they're not stimulated enough to self-motivate and stimulate themselves, so therefore they would just sit there and drop off to sleep. (#13)
And the fact that somebody's on one to one basis with the residents, that's the whole . . . it's not about [painting of] the [finger]nails, it's about the contact. They [residents] often open up to the volunteers better than to staff, because we basically attend, some of us attend to tasks only, not necessarily to do . . . be . . . a holistic communication. (#4)
Most volunteers easily listed a couple of benefits from their work. Seventy-two percent explicitly mentioned that interacting with older people was enjoyable.
I have laughter here, belly laughter . . .. So I feel quite relaxed and like this is my second home. I get more back from what I give them, I receive more so I'm leaving here quite uplifted. (#29)
Another 62% mentioned that they perceived an increased well-being of the residents as a consequence of their visits.
When one of them is really depressed and down, the lifestyle coordinator lets me know to begin with so I can spend more time, but when they put the dog on their knee . . . just the look on their face and they profusely say “thank you for bringing him.” (#30)
And there's so many out there that feel so alone, and missing their home and their own belongings and just being able to express what they feel, I feel, is very beneficial for them. (#22)
Over half of the volunteers also mentioned a benefit for them personally, such as being engaged (n = 8), restoring or increasing their self-esteem and self-insight (n = 4), or helping them through difficult times (n = 4).
It keeps me active, physically and mentally. (#37)
I think at a time when you've made a big life change I suppose retirement . . . it gives you back some confidence and perhaps some self-esteem. (#38)
Almost a third of the facility staff mentioned that sometimes volunteers turned out not to be physically or mentally capable of performing tasks. In some cases, their continuing presence actually resulted in an increased workload for staff members.
I had a lady that was blind and that was fine, but it tended to take more staff time, so it wasn't very helpful for us. (#8)
Half of our sample reported that at some stage they had worked with volunteers who lost sight of appropriate boundaries, for example by becoming over familiar, asking residents for money, or displaying overly intimate behavior.
There was another lady at the time that ran a craft activity . . .. I found out that she was actually charging the residents for stuff that they were making. (#9)
He was giving the ladies hugs and kisses, and that perhaps when he was talking to any of the female residents in the tub chairs, he was standing over them and there was this perception of perceived power, but again it came back to perception and what people see and after speaking to him he was actually quite mortified by the whole thing and didn't realize. (#10)
Over half of the volunteers (59%) answered “no” when asked if they had encountered any problems. Difficulties that were mentioned most often were a shortage of staff and how this impacted on residents (n = 4), managing a range of personalities in group activities (n = 3), and agitated residents (n = 3).
Not towards me, not towards volunteers no, but I see things that I don't like . . .. There was somebody who couldn't breathe, he couldn't talk and I said “look this man needs some oxygen, he can't breathe.” (Staff response:) “Oh we don't.” I said, “You've got to have oxygen, of course” and she repeated “We don't have oxygen” and she just didn't care. And because I insisted she went and got the bottle of oxygen to help. See things like that. (#42)
We also asked if volunteers had experienced difficulties with residents’ expectations or had encountered something distressing. Forty-four percent reported that they had never had any problems with residents’ expectations. Twenty-three percent had at some stage been asked to perform jobs that only staff members are trained to do.
Yes sometimes they ask me to take them to the toilet and I say “Sorry, I can't do it.” (#41)
Four volunteers reported that some residents crossed boundaries by asking them for their phone number or to go out for coffee.
Like if you give out your phone number, not only are you opening yourself up to get random phone calls when you're not in your volunteer role. I suppose it's not appropriate to get to that, to keep within those bounds and just remember your place and that you're not a family member and you're not a doctor. (#18)
When I first started, I was working one-on-one with one of the residents and he started to call me sweetie. I had to say that the only person allowed to call me that is my husband. (#51)
Nearly half (41%) had never encountered anything distressing. The most frequently mentioned sources of distress were related to residents dying (n = 8) or their health status, e.g. witnessing agitation (n = 9), physical discomfort or falls (n = 4), or general deterioration (n = 4).
There's a lady here right this moment who is very distressing. She's . . . you might have heard her calling out. (#38)
One thing that's overall distressing is watching people become sicker and sicker, and eventually be moved on . . . it's also a sad thing to watch people suffer from dementia. (#47)
Staff in three of the eight facilities providing high level care mentioned that their volunteers would not work with individuals with dementia. At four high care facilities where volunteers did interact with residents with dementia, it was clearly stated that volunteers need a gradual introduction and constant supervision to interact with people with more severe dementia.
So basically sitting together with residents with some challenging behaviors it's very good for staff as well not to have that pressure on them constantly, but not everybody can do it so we try to protect the volunteers as well, only those who feel that they can actually tackle the problem do that. (#4)
It's basically we start them off doing simple tasks, it may be just sitting and chatting to a number of residents that they can relate to, and if they're not frightened with . . . and we just gradually introduce them. (#7)
A large majority (82%) of the volunteers reported that they would be interested to learn new methods to interact with residents. The remaining 18% often felt they were too busy juggling different volunteer jobs and their social life to take on something new.
Discussion
This study showed that a majority of facilities in southeast Melbourne worked with volunteers who committed a substantial amount of time. Often a mix of self-interest and altruistic reasons motivated individuals to volunteer in aged care. Although not all volunteers turned out to be suitable for their tasks, overall volunteering in this sector resulted in positive outcomes for facilities, residents, and volunteers. Volunteers provide an extra resource for facilities to assist with group activities and offer one-on-one interaction, resulting in stimulation and engagement for both residents and volunteers. Recruitment, training, and supervision should focus on identifying volunteers who may be socially deprived themselves, which could impact on their performance as volunteers. Lifestyle staff should explore volunteers’ physical and mental competency to establish if their presence may potentially lead to an increased workload for others. Once volunteers have started their work, attention should be paid to residents and volunteers that may (unintentionally) cross boundaries as their relationships with residents may not be perceived as professional in nature. Finally, we identified a need for dementia education and insight into particular residents’ health status as volunteers’ distress was often related to residents’ agitation, morbidity, and mortality. In addition, a large majority of volunteers expressed an interest in learning new methods of interacting with residents.
Limitations
This study included a small number of staff and volunteers in one part of Melbourne, Australia, limiting the generalizability of our findings to other areas. However, with the limited evidence base describing volunteers, our findings serve as a starting point to explore the potential of volunteers in other regions and countries. Furthermore, our findings replicate findings reported in previous publications, such as the limited interaction of volunteers with individuals with dementia (Damianakis et al., Reference Damianakis, Wagner, Bernstein and Marziali2007) and their reasons for volunteering (Clary and Snyder, Reference Clary and Snyder1999).
Implications
Although a relatively small proportion of all volunteers visit nursing homes (Damianakis et al., Reference Damianakis, Wagner, Bernstein and Marziali2007), three-quarters of aged care facilities in our region did work with volunteers. In this urban area, facilities worked with an average of five volunteers each and a total of 213 hours per week was spent volunteering across all sites. This represents a significant resource. Combined with their loyalty to facilities, their knowledge of and confidence in working with older people in this setting, and their willingness to learn new methods for interaction, this group has the potential to assist with implementing psychosocial and non-pharmacological interventions. While many volunteers already spend one-on-one time with individual residents, they usually choose or are directed towards people who are still capable of meaningful conversation. Hence, people with more advanced dementia and associated behavioral and psychological symptoms may at present not benefit from the presence of volunteers. Future research should explore specific barriers to volunteers engaging with people with pronounced BPSD.
Aged care facilities should be aware of volunteers’ motivations. Literature on hospice volunteers has suggested some selection criteria that are potentially relevant to other settings. Hospice volunteers in the USA perceived that emotional resilience and personal hardiness were important dimensions of their own suitability for working in palliative care (Guirguis-Younger and Grafanaki, Reference Guirguis-Younger and Grafanaki2008) and, in a Canadian study, 99 paliative care volunteers scored higher than average on personality traits of agreeableness, extraversion, openness, and empathy, and displayed significantly less neuroticism (Claxton-Oldfield and Banzen, Reference Claxton-Oldfield and Banzen2010). Selection of volunteers could benefit from the use of questionnaires exploring personality characteristics. Training and ongoing supervision of volunteers are essential. Grassel and Schirmer (Reference Grassel and Schirmer2006) highlighted that volunteers should be supported by professionals, in particular by the presence of a contact person, who is available at any time. In the hospice care setting, a number of papers focused on the need for support regarding ethical issues, communication with family members, confidentiality, and compromised care (Rothstein, Reference Rothstein1994), as well as a need for strategies to negotiate the difficult role positioned between that of healthcare professional and friend, which is exclusive to volunteers (Berry and Planalp, Reference Berry and Planalp2009).
Many non-pharmacological interventions including tactile interventions and personalized activities (e.g. those based on the Montessori methodology) have been effective in reducing agitation associated with dementia (Lin et al., Reference Lin, Yang, Kao, Wu, Tang and Lin2009; van der Ploeg and O'Connor, Reference van der Ploeg and O'Connor2010). Reducing agitation will not only calm participating residents, but may potentially also help nursing home staff, co-residents, and relatives. Considering that personalized activities can also increase residents’ positive engagement and affect (e.g. Orsulic-Jeras et al., Reference Orsulic-Jeras, Judge and Camp2000; Lin et al., Reference Lin, Yang, Kao, Wu, Tang and Lin2009), implementing them may potentially be as rewarding as volunteers’ current tasks and might benefit volunteers themselves as volunteering in other settings appears to result in fewer depression symptoms and better perceived health (Gottlieb and Gillespie, Reference Gottlieb and Gillespie2008).
Future research should study the outcomes of training volunteers in these specific methods and implementing them with people with dementia.
Conclusion
Current volunteers in the sector were available, willing, and experienced. Facilities were well able to find and keep volunteers, but volunteers mostly assisted with the current activities program or pursued their own interests. Hence, activities might not always be tailored to residents’ interests and skills. Furthermore, it appears that individuals with more advanced dementia and associated behavioral symptoms, who would benefit most from one-on-one interaction, were often overlooked. Future research should explore what the effects are of volunteers assisting in the implementation of non-pharmacological interventions with residents in aged care facilities.
Conflict of interest
None.
Description of authors' roles
D. O'Connor conceived the research idea; E. van der Ploeg designed the study, was involved with categorizing and scoring interviews, analyzed the data, and wrote the paper; S. Genovesi developed the interview format and conducted interviews with all participants; T. Mbakile was involved in data cleaning and scoring interviews; and all authors approved the final version of the paper.
Acknowledgments
This project has been funded by the Dementia Collaborative Research Centre – Assessment and Better Care, University of New South Wales, as part of the Australian Government's Dementia Initiative.
