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The feasibility of volunteers facilitating personalized activities for nursing home residents with dementia and agitation
Geriatric Nursing 35 (2014) 142e146
Contents lists available at ScienceDirect
Geriatric Nursing journal homepage: www.gnjournal.com
Feature Article
The feasibility of volunteers facilitating personalized activities for nursing home residents with dementia and agitation Eva S. Van der Ploeg, PhD, Helen Walker, MTP, Daniel W. O’Connor, MD, FRANZCP * School of Psychology and Psychiatry, Monash University, Melbourne, Australia
a r t i c l e i n f o
a b s t r a c t
Article history: Received 10 October 2013 Received in revised form 3 December 2013 Accepted 9 December 2013 Available online 31 January 2014
Background: Nursing home residents’ behavioral and psychological symptoms of dementia are often exacerbated by a lack of social contact and meaningful activity. Volunteers might assist in addressing this deficiency but they are often discouraged by staff from engaging with residents with challenging behaviors. As a result, some of the neediest residents receive the least social and psychological support. Aim: This project explored the implementation of personalized, one-to-one activities by nursing home volunteers to determine if volunteers were able and willing to complete a training program and undertake activities with residents with dementia and challenging behaviors. Methods: 19 nursing home volunteers in Melbourne, Australia, were trained to apply Montessori-type personalized activities with a selected resident whose dementia was complicated by a frequent, nonaggressive agitated behavior. The volunteers were asked to attend a workshop and pay six 30-min visits to the resident over a three week period. They completed knowledge and attitude rating scales before and after the intervention and were interviewed afterward regarding their experiences and perceptions. Results: 16 volunteers completed the program and eight met or exceeded every study requirement. Most of them derived satisfaction from engaging residents’ interest and were pleased to learn new skills. The scores on the dementia knowledge and attitude rating scale of those who completed the visits were higher at the study’s outset than the scores of those who failed to make any visits. Conclusions: It is certainly feasible to train volunteers to work with residents who might otherwise be isolated. It is important to demonstrate activities to volunteers at the outset and to provide them with careful, ongoing supervision and support. Notwithstanding some difficulties and challenges, volunteers represent a growing and hitherto untapped pool of support for people with dementia and complex needs. Ó 2014 Mosby, Inc. All rights reserved.
Keywords: Dementia Nursing homes Agitation Activities Volunteers
Introduction Dementia is often associated with challenging behavioral and psychological symptoms. In a population-based study in the United States, 61% of people with dementia had exhibited one or more behavioral or psychological disturbances in the past month including agitation (13%) and irritability (17%).1 Rates are higher still in residential facilities. In an Australian study, for example, 53% of nursing home residents showed an “activity disturbance” and 77% behaved aggressively.2 Behavioral symptoms stemming from pain, major depression or psychosis respond to treatment with analgesics, antidepressants * Corresponding author. Aged Mental Health Research Unit, Kingston Centre, Warrigal Road, Cheltenham, Victoria 3192, Australia. Tel.: þ61 3 9265 1700; fax: þ61 3 9265 1711. E-mail address: [email protected] (D.W. O’Connor). 0197-4572/$ e see front matter Ó 2014 Mosby, Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2013.12.003
and antipsychotics respectively but, in other cases, psychotropic medications have only limited efficacy. This has prompted an interest in developing, testing and implementing a wide range of non-pharmacological interventions to lift residents’ mood, reduce behavioral symptoms and improve their quality of life.3 Cohen-Mansfield postulated that people with dementia behave in an agitated manner when their needs (for example for social interaction) are not correctly perceived and addressed by caregivers. These unmet needs are best remedied in her view by means of an enriched, ‘person-centred’ care model and, more specifically, through psychosocial interventions that are designed to elicit interest, engagement and social inclusion.4 Two recent systematic reviews concluded that psychosocial interventions including music and recreation therapy are effective in reducing agitation, particularly when tailored to participants’ backgrounds, relationships, interests and skills.3,5 By way of illustration, music that people had enjoyed earlier in life reduced
E.S. Van der Ploeg et al. / Geriatric Nursing 35 (2014) 142e146
agitation better than “standard” relaxing music while audiotapes of a family member’s voice worked better than a stranger’s voice.6,7 Despite a growing evidence base, truly personalized activities tend not to be offered in many aged care facilities due to constraints on staff members’ time. As an alternative resource, aged care volunteers could, if given the opportunity, work closely with individual nursing home residents to help engage them in personallytailored activities. Volunteering is “the voluntary giving of time and talents to deliver services or perform tasks with no direct financial compensation expected.8 It is increasingly popular with up to 36% of Australian adults engaging in recent years in some sort of volunteer activity.9 According to the social exchange model, volunteers’ motives include altruism, self-development and socialization. Facilitating factors include an extroverted personality, extensive social networks and prior volunteer experience.10 The consequences for volunteers are mostly beneficial. People with better than average mental and physical health are more likely to seek community service and then derive from it an even greater sense of personal well-being.8 Previous reports of volunteer programs for people with dementia were generally positive. In a study of nine volunteers in a Norwegian activity centre for people with early stage dementia, benefits for volunteers included meeting new people and working collaboratively. For those with a health care background, it was sometimes difficult though to adjust to the absence of professional colleagues and a paid role.11 Caring for people with dementia can present special challenges. For 45 North American volunteers, fear of dementia and problem behaviors emerged as one of the reasons for 38 failing to complete training as in-home respite carers.12 By contrast, some of the six Portuguese in-home respite carers who received 3 h of intensive training in engaging people with dementia in meaningful activities felt disappointed that the experience was not more challenging. Most were rewarded by learning greater patience, better communication skills and emotional sensitivity.13 Residents of nursing homes are typically more cognitively and behaviorally impaired than people living in the community. In a large Canadian nursing home complex, eight volunteers were given 5 h training in dementia care, empathic communication and cultural sensitivity followed by personal mentoring. Some of them had cared for a family member with dementia and wanted to help others in the same situation. One volunteer thought that residents would be “far worse” behaviorally than proved to be the case. Most succeeded in building positive relationships, identifying congenial activities and staying “in the moment.”14 In an earlier study, we found that nursing homes welcomed volunteers’ provision of company and stimulation but tended to discourage them from engaging with residents with prominent behavioral symptoms, fearing that they would be unable to cope. As a result, the residents most in need of company, stimulation and meaningful activity were actually the least likely to receive it. The volunteers themselves reported being motivated by a wish to give something back to their community and by personal needs to remain active and form new relationships. Training was greatly valued and most reported that they would be interested in learning new approaches to working with confused, agitated residents.15 In this current study, we set out to train a small sample of nursing home volunteers in the delivery of personalized activities using an approach that has proved effective in promoting engagement and reducing agitation in nursing home residents with advanced dementia. It was not the purpose of the study to test the treatment’s effectiveness. This has been demonstrated previously.16 Instead, we set out to determine volunteers’ interest in helping deliver such a program, and their capacity to persist with it despite
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likely obstacles, as a guide to future practice. The question addressed by this pilot study was: Are volunteers able and willing to engage in individually-tailored activities with residents with advanced dementia and prominent behavioral symptoms? The Montessori-type activities program employed in the study was developed for use in a readily taught, manualized fashion by professional and family caregivers with access to limited physical resources. The goals of the program were to select a range of activities that matched each resident’s former interests, skills and culture and could readily be made more or less challenging, depending on their current cognitive and physical capacities. Activity facilitators paid close attention to their posture, demeanor and speech with the goal of presenting an inviting, non-threatening presence that engaged and maintained residents’ interest. Residents were typically invited to “help” the facilitator complete a task; the activity was then modeled, and the resident was prompted to participate. Thus, a resident with moderately severe dementia and an interest in baking might be encouraged to sort pictures of baking implements by size or color; to arrange them in a sequence, or to relate a narrative of a baking task. If one task failed to capture the resident’s interest, the facilitator moved quickly to an easier or harder task as indicated. Little verbal interaction was required for people with limited language skills. A detailed description of the program is available online.17 In an earlier randomized cross-over trial involving 44 nursing home residents with frequent, persistent agitated behaviors, an identical program achieved significant reductions in agitated behavior counts and significant increases in positive effect and engagement.16 The purpose of this present study was to explore the potential for the translation of individualized activities into everyday practice with volunteers acting as facilitators. Since recruiting and training volunteers in new endeavors is timeconsuming and therefore expensive, it is important to check that the approach is both feasible and attractive to volunteers. Methods The study was a descriptive feasibility review using largely quantitative methods to gauge: (i) volunteers’ interest in facilitating an individually-tailored activity program with a resident with advanced dementia and agitated behavior; (ii) their capacity to remain engaged in a treatment program after a period of training, and (iii) changes in their attitudes and knowledge of dementia over the course of the study. We anticipated that a greater knowledge of dementia and more positive attitudes to people with dementia at the study outset would be associated with higher retention rates. Sample selection 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 authorizes admission based on need and regulates standards of care. We approached 18 aged care homes in southeast Melbourne, Australia, of which nine agreed to participate. Of the remainder, four facilities expressed interest but took no further action; volunteers at two homes chose not to be involved; one home was closing; one was undergoing accreditation, and one had no volunteers. The nine participating homes had a total of 33 volunteers of whom 14 were unable to meet the study’s training and visitation requirements. The 19 enrolled volunteers were paired with a resident in the same home who met the following criteria: (i) a chart diagnosis of dementia; (ii) a frequent agitated but non-aggressive behavior based on staff members’ ratings on the Cohen-Mansfield
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Agitation Inventory,18 and (iii) residency in the home for more than three months. Activities Family members provided information about each resident’s former interests and preferred activities. The facilitator, in consultation with the family, developed a range of materials that were judged likely to engage the resident’s interest and to match their cognitive, language and physical capacities. Commonly preferred activities in this study included reading, music, craft work, praying, arranging flowers and sorting, folding or matching items.
Ethical considerations The study was approved by the Monash Health and Monash University ethics committees (Number 12027B). Informed written consent was sought from the volunteers and the person responsible for participating residents (usually a family member) in line with local research practice guidelines. While volunteers were tasked with engaging residents in activities, it was made clear that residents were never to be coerced. Results Participants
Training and supervision Each volunteer attended a 2.5 h training session with an experienced facilitator on the principles and practical application of Montessori-type activities, together with information on their selected resident and instruction on 10 individualized activities that had been developed in discussion with family members. They were then asked to make twice-weekly, 30-min visits to their selected resident at mutually convenient times, preferably over a three-week period, and to keep a written record of their activities. Volunteers were contacted by researchers at the half-way point to check on progress, address questions and concerns, and ensure adherence to the program. Measures Volunteers completed the knowledge and attitude subscales of the Tool for Understanding Residents’ Needs as Individual Persons before and after completing the program.19 The knowledge subscale includes five factual items (for example, ‘Challenging behaviors are inevitable with dementia’) while the attitude subscale’s eight items tap values (for example, ‘Social participation is important for people with dementia’). Responses are scored on a 5-point Likert scale to give total scores for knowledge (range 0e20) and attitudes (range 0e32) with higher scores denoting greater knowledge and more positive attitudes. Residents’ cognitive status was assessed using the Clinical Dementia Rating scale20 based on information provided by staff members and the frequencies of 29 agitated behaviors were rated by staff members using the Cohen-Mansfield Agitation Inventory.18 After the final visit, volunteers participated in a semi-structured face-to-face interview concerning the program’s feasibility and acceptability; its most and least appealing aspects; their perceptions of residents’ affect, engagement and behavior during activities; the responses of staff members, co-residents and family members to the program; the experience of volunteering; suggestions to improve the program, and their willingness to continue the activities once the study ended. Data analysis Continuously distributed and categorical numeric data were analyzed using t-tests and chi-square tests respectively. The interviews were audio-taped, transcribed and then subjected to thematic analysis by two researchers (EvdP, HW) to elicit concisely described patterns and themes. This analysis entailed familiarization with the data; generating initial codes; searching for themes; reviewing themes by moving back and forth from the entire dataset to the transcripts; defining and naming themes, and producing a summary using compelling extract examples. This inductive approach allowed the findings themselves to emerge as significant themes.21
The 19 volunteers, 16 of whom were female, had a mean age of 56.7 years (range 19e81) and had spent between 5 weeks and 16 years as a nursing home volunteer (mean 4.4 years). Only two reported that they had no prior exposure to people with dementia. Nine had had a lot of exposure. Of the 19 selected residents, one was rated on the Clinical Dementia Rating scale as having mild dementia and nine each had moderate and severe levels of dementia. Their Cohen-Mansfield Agitation Inventory scores ranged from 9 to 62 with a mean of 34.5 points out of a maximum of 174 points. Outcomes and measures Three volunteers withdrew before completing any treatment sessions. One found paid work; one became unwell, and another person’s matched resident died. None of them participated in the final interview but they completed the initial interview and scales. Of the 16 remaining volunteers, eight completed every study requirement with three far exceeding them, making between 11 and 13 visits each. Another two volunteers missed a single visit; one missed two visits, and one missed four visits. Four volunteers’ visits sometimes fell short of the 30-min goal. Reasons for missed or shortened visits included personal matters in two cases; the failing health or death of residents in five cases, and a resident’s excessive agitation in one case. All of these 16 people participated in the final interview but two failed to complete the final scales. Compared with the three volunteers who withdrew at an early stage, the 16 who embarked on the program had higher dementia knowledge scores at study outset (12.1 versus 10.7 points) and significantly higher dementia attitude scores (24.3 versus 20.3 points; F ¼ 1.5, df ¼ 17, p ¼ 0.046). With respect to specific attitudes, they were more likely to believe that it was important to know residents’ life histories (c2 ¼ 6.1, df ¼ 2, p ¼ 0.047) and less likely to believe that people with dementia had lost their personal identities (c2 ¼ 19.0, df ¼ 4, p < 0.001). They described the activities as feasible, acceptable and helpful and eight of them planned to continue with the activities once the study ended. Over the course of the program, their dementia knowledge scores rose from 11.9 to 12.7 points, and attitude scores rose from 24.2 to 25.5 points, but these differences were not statistically significant. Volunteers’ experiences Four themes emerged from the thematic analysis: the volunteers’ own capacity to engage in activities with residents; a sense of validation of this engagement; their difficulties in engaging in some instances; and their reasons for not wishing to engage. Some textual extracts are shown below by way of illustration.
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Capacity to engage Most volunteers were eager to undertake the activities as prescribed but, on reflection, some recalled feeling apprehensive and others had found it challenging to engage with residents while being mindful of the need to match their pace and to respond sensitively to their mood and level of interest. ‘I was really worried about it at first. Is she going to be like, ‘Why are we doing this?’ but before you know it she had become wrapped up and she would really not think twice. I was actually quite surprised how easy it was to get her to do something’ (Volunteer 8). ‘You remember to be slower I guess, the movements and when showing her what we were doing. Just slow movements so that she could kind of follow or didn’t feel under pressure to keep up’ (Volunteer 6). ‘It’s a little mind game almost but you’ve got to stop and think, ‘Hang on a minute. You’re supposed to be going slow’. It’s all about are they enjoying it? It’s making them go ‘Oh yeah’’ (Volunteer 17). Validation of engaging Volunteers enjoyed facilitating activities when they were able to interact successfully with their matched resident. When engagement was achieved, they experienced a real sense of reciprocal benefit with pleasure being experienced by both parties. ‘I loved the one-to-one sessions actually. Previous to this, my friend and I had been coming in and dealing with big groups. But I really love the one-to-one interaction. You could see that she enjoyed it so much, she was just so happy to see me. You could just see her respond, it was so positive’ (Volunteer 7). ‘When we played with the fabrics, she definitely liked those the best. She was feeling them and helping me put them on pieces of paper. After we finished the task, she would say, ‘We’ve done a good job’ and she would be really happy and smiling. And she seemed to love the interaction as well, just sitting with me holding hands’ (Volunteer 6). ‘I started to clue in and go, ‘I can see the difference from last week, the week before, to today.’ So that’s the sort of difference and just making another resident say, ‘Oh I’d like to do some activities.’ That was huge. I told my coordinator and she was like, ‘Oh yeah’’ (Volunteer 15). ‘I can definitely see a difference in the activities. When she saw it again she didn’t say anything about remembering it but there was less confusion with these activities and everything so you can see those skills are kicking in and whatever she hasn’t been using they’re coming back to her’ (Volunteer 17). Difficulties in engaging When residents failed to engage in activities, volunteers sometimes felt rejected, disappointed and frustrated. They found it difficult to cope with residents’ distress and agitation, especially when their efforts to relieve this distress proved unsuccessful. ‘You can tell with her. I found that she was specifically not liking anything. You could hear from the comments she was making that she totally was not interested’ (Volunteer 19). ‘I suppose seeing someone zoned out or in distress or their restlessness, seeing them in distress is distressing and upsetting. That’s not a pleasant experience for them and it’s not a pleasant experience for anyone around. And obviously trying to settle that down or bring them back to a quiet place is the objective
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and when you’re not successful then that’s frustrating’ (Volunteer 4). ‘She was very unwell. She made it very clear she didn’t want to see me and the last session I said, ‘I’ve brought some beautiful things for you to look at’ and she said, ‘I could not look at anything’ (Volunteer 16). Reluctance to engage A couple of volunteers adopted a negative approach to the program’s philosophy with a sense of futility in trying to work collaboratively and sensitively with confused, agitated residents. ‘I’m not a researcher but once the damage has been done, the nerves or whatever, the cells have been disconnected. Unless you re-connect them, they are going to have this problem. Whether it’s worth going on with this program, I don’t think so. I think we should invest the money somewhere else’ (Volunteer 8). Discussion Our feasibility study complied with many but not all of the recommendations made by the Health Behavior Change Consortium to improve the reliability and validity of complex health intervention studies.22 Research interventions are usually fully standardized but personalized activities cannot be pre-determined by their very nature. In retrospect, though, it would have been desirable to check volunteers’ skills prior to field work; to provide greater supervision over the course of the study to prevent drift in practice, and to minimize differences in conditions between nursing homes. Notwithstanding these limitations, our program proved successful, in line with most previous reports of nursing home volunteering13,14 and with our own earlier observation that volunteers were keen to learn new ways to work with residents with challenging behaviors.15 Sixteen of our 19 recruits completed training and commenced visits to residents, nearly all of whom had moderate to severe dementia and demonstrable levels of motor agitation. Three of the volunteers paid many more visits than we requested and half of them wished to continue with the activities beyond the end of the study. A number fell short of requirements regarding the number and duration of visits but their reasons for doing so were beyond their control. When the activities captured residents’ interest, and volunteers could see evidence of heightened attention and skillfulness, they felt rewarded and wished to persist in their efforts. At the same time, participation was sometimes challenging. It can be difficult to capture residents’ attention when they are agitated, irritable or physically unwell and volunteers sometimes felt that they had “failed” to meet our expectations, despite our best efforts to prepare them for all these possibilities. This was one of the drawbacks of a formal study. Volunteers are not usually required to visit at set intervals, keep log books or complete questionnaires. Our research requirements added pressure and it might prove easier therefore to spend time with agitated people under more normal circumstances. Volunteers with a better knowledge of dementia, and more positive attitudes to people with dementia, were more likely to complete the program. Conversely, three of them left the program early through a lack of interest or satisfaction. They preferred their customary activities and a couple of them voiced doubts about the value of directing attention to markedly disabled residents. To avoid disillusionment, it will be helpful to give interested volunteers an opportunity to trial activities with careful oversight and
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support. Ongoing supervision and opportunities for debriefing will also be required since residents’ responsiveness to volunteers, and their mental and physical health, are subject to change. Few volunteers have health care experience and their capacity to cope with rejection, verbal or physical outbursts, or physical decline will often be limited. Close support and personal supervision might not be feasible on a continuing basis in smaller residential facilities but some larger institutions have dedicated volunteer supervisors who could fulfill this role. This pilot study has demonstrated that it is possible to attract and retain a proportion of volunteers in efforts to improve the quality of life of confused residents whose agitation often precludes them from therapeutic social engagement and meaningful, individually-tailored activity. It is unlikely that staff members will be able to meet all the needs of residents of large aged residential facilities. Volunteers, whose numbers are growing, may help to fill this gap. References 1. Steinberg M, Shao H, Zandi P, et al. Point and 5-year prevalence of neuropsychiatric symptoms in dementia: the Cache County study. Int J Geriatr Psychiatry. 2008;23:170e177. 2. Brodaty H, Draper B, Saab D, et al. Psychosis, depression and behavioral disturbances in Sydney nursing home residents: prevalence and predictors. Int J Geriatr Psychiatry. 2001;16:504e512. 3. O’Connor DW, Ames D, Gardner B, King M. Psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards. Int Psychogeriatr. 2009;21:225e240. 4. Cohen-Mansfield J. Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary and critique. Am J Geriatr Psychiatry. 2001;9:361e381. 5. O’Connor DW, Ames D, Gardner B, King M. Psychosocial treatments of psychological symptoms in dementia: a systematic review of reports meeting quality standards. Int Psychogeriatr. 2009;21:241e251. 6. Gerdner LA. Effects of individualized versus classical “relaxation” music on the frequency of agitation in elderly persons with Alzheimer’s disease and related disorders. Int Psychogeriatr. 2000;12:49e65.
7. Garland K, Beer E, Eppingstall B, O’Connor DW. A comparison of two treatments of agitated behavior in nursing home residents with behaviour: simulated family presence and preferred music. Am J Geriatr Psychiatry. 2007;15: 514e521. 8. Thoits PA, Hewitt LN. Volunteer work and well-being. J Health Soc Behav. 2001;42:115e131. 9. Australian Bureau of Statistics. Voluntary work, Australia. Canberra, Australia: Australian Bureau of Statistics; 2010. 10. Wilson J. Volunteering. Annu Rev Sociol. 2000;26:215e240. 11. Söderhamn U, Landmark B, Aasgaard L, Eide H, Söderhamn O. Volunteering in dementia care: a Norwegian phenomenological study. J Multidiscip Healthc. 2012;5:61e67. 12. Robinson KM, Clemons JW. Respite care: volunteers as providers. J Psychosoc Nurs. 1999;37:30e35. 13. Guerra SRC, Demain SH, Figueiredo DMP, De Sousa LXM. Being a volunteer: motivations, fears and benefits of volunteering in an intervention program for people with dementia and their families. Activ Adapt Aging. 2012;36:55e78. 14. Damianakis T, Wagner LM, Bernstein S, Marziali E. Volunteers’ experiences visiting the cognitively impaired in nursing homes: a friendly visiting program. Can J Aging. 2007;26:343e356. 15. Van der Ploeg ES, Mbakile T, Genovesi S, O’Connor DW. The potential of volunteers to implement non-pharmacological interventions to reduce agitation associated with dementia in nursing home residents. Int Psychogeriatr. 2012;24: 1790e1797. 16. Van der Ploeg ES, Eppingstall B, Camp CJ, Runci SJ, Taffe J, O’Connor DW. The effect of personalized, one-to-one interaction using Montessori-based activities on agitation, engagement and affect in aged care facility residents with dementia. Int Psychogeriatr. 2013;25:565e575. 17. Alzheimer’s Australia. Relate, Motivate, Appreciate: A Montessori Resource. Melbourne: Alzheimer’s Australia. Available at, www.fightdementia.org.au/ common/files/VIC/20130725_-_Montessori_Resource.pdf; 2013. Accessed 28.11.13. 18. Cohen-Mansfield J. Agitated behaviors in the elderly II: preliminary results in the cognitively deteriorated. J Am Geriatr Soc. 1986;34:722e727. 19. Edvardsson D, Fetherstonhaugh D, Nay R. The Tool for Understanding Residents’ Needs as Individual Persons (TURNIP): construction and initial testing. J Clin Nurs. 2001;20:2890e2896. 20. Hughes CP, Berg L, Danziger WL. A new clinical scale for the staging of dementia. Br J Psychiatry. 1982;140:566e572. 21. Braun V, Clark V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77e101. 22. Bellg AJ, Resnick B, Minicucci DS, et al. Enhancing treatment fidelity in health behavior change studies: best practices and recommendations from the NIH Behavior Change Consortium. Health Psychol. 2004;23:443e451.
Contents lists available at ScienceDirect
Geriatric Nursing journal homepage: www.gnjournal.com
Feature Article
The feasibility of volunteers facilitating personalized activities for nursing home residents with dementia and agitation Eva S. Van der Ploeg, PhD, Helen Walker, MTP, Daniel W. O’Connor, MD, FRANZCP * School of Psychology and Psychiatry, Monash University, Melbourne, Australia
a r t i c l e i n f o
a b s t r a c t
Article history: Received 10 October 2013 Received in revised form 3 December 2013 Accepted 9 December 2013 Available online 31 January 2014
Background: Nursing home residents’ behavioral and psychological symptoms of dementia are often exacerbated by a lack of social contact and meaningful activity. Volunteers might assist in addressing this deficiency but they are often discouraged by staff from engaging with residents with challenging behaviors. As a result, some of the neediest residents receive the least social and psychological support. Aim: This project explored the implementation of personalized, one-to-one activities by nursing home volunteers to determine if volunteers were able and willing to complete a training program and undertake activities with residents with dementia and challenging behaviors. Methods: 19 nursing home volunteers in Melbourne, Australia, were trained to apply Montessori-type personalized activities with a selected resident whose dementia was complicated by a frequent, nonaggressive agitated behavior. The volunteers were asked to attend a workshop and pay six 30-min visits to the resident over a three week period. They completed knowledge and attitude rating scales before and after the intervention and were interviewed afterward regarding their experiences and perceptions. Results: 16 volunteers completed the program and eight met or exceeded every study requirement. Most of them derived satisfaction from engaging residents’ interest and were pleased to learn new skills. The scores on the dementia knowledge and attitude rating scale of those who completed the visits were higher at the study’s outset than the scores of those who failed to make any visits. Conclusions: It is certainly feasible to train volunteers to work with residents who might otherwise be isolated. It is important to demonstrate activities to volunteers at the outset and to provide them with careful, ongoing supervision and support. Notwithstanding some difficulties and challenges, volunteers represent a growing and hitherto untapped pool of support for people with dementia and complex needs. Ó 2014 Mosby, Inc. All rights reserved.
Keywords: Dementia Nursing homes Agitation Activities Volunteers
Introduction Dementia is often associated with challenging behavioral and psychological symptoms. In a population-based study in the United States, 61% of people with dementia had exhibited one or more behavioral or psychological disturbances in the past month including agitation (13%) and irritability (17%).1 Rates are higher still in residential facilities. In an Australian study, for example, 53% of nursing home residents showed an “activity disturbance” and 77% behaved aggressively.2 Behavioral symptoms stemming from pain, major depression or psychosis respond to treatment with analgesics, antidepressants * Corresponding author. Aged Mental Health Research Unit, Kingston Centre, Warrigal Road, Cheltenham, Victoria 3192, Australia. Tel.: þ61 3 9265 1700; fax: þ61 3 9265 1711. E-mail address: [email protected] (D.W. O’Connor). 0197-4572/$ e see front matter Ó 2014 Mosby, Inc. All rights reserved. http://dx.doi.org/10.1016/j.gerinurse.2013.12.003
and antipsychotics respectively but, in other cases, psychotropic medications have only limited efficacy. This has prompted an interest in developing, testing and implementing a wide range of non-pharmacological interventions to lift residents’ mood, reduce behavioral symptoms and improve their quality of life.3 Cohen-Mansfield postulated that people with dementia behave in an agitated manner when their needs (for example for social interaction) are not correctly perceived and addressed by caregivers. These unmet needs are best remedied in her view by means of an enriched, ‘person-centred’ care model and, more specifically, through psychosocial interventions that are designed to elicit interest, engagement and social inclusion.4 Two recent systematic reviews concluded that psychosocial interventions including music and recreation therapy are effective in reducing agitation, particularly when tailored to participants’ backgrounds, relationships, interests and skills.3,5 By way of illustration, music that people had enjoyed earlier in life reduced
E.S. Van der Ploeg et al. / Geriatric Nursing 35 (2014) 142e146
agitation better than “standard” relaxing music while audiotapes of a family member’s voice worked better than a stranger’s voice.6,7 Despite a growing evidence base, truly personalized activities tend not to be offered in many aged care facilities due to constraints on staff members’ time. As an alternative resource, aged care volunteers could, if given the opportunity, work closely with individual nursing home residents to help engage them in personallytailored activities. Volunteering is “the voluntary giving of time and talents to deliver services or perform tasks with no direct financial compensation expected.8 It is increasingly popular with up to 36% of Australian adults engaging in recent years in some sort of volunteer activity.9 According to the social exchange model, volunteers’ motives include altruism, self-development and socialization. Facilitating factors include an extroverted personality, extensive social networks and prior volunteer experience.10 The consequences for volunteers are mostly beneficial. People with better than average mental and physical health are more likely to seek community service and then derive from it an even greater sense of personal well-being.8 Previous reports of volunteer programs for people with dementia were generally positive. In a study of nine volunteers in a Norwegian activity centre for people with early stage dementia, benefits for volunteers included meeting new people and working collaboratively. For those with a health care background, it was sometimes difficult though to adjust to the absence of professional colleagues and a paid role.11 Caring for people with dementia can present special challenges. For 45 North American volunteers, fear of dementia and problem behaviors emerged as one of the reasons for 38 failing to complete training as in-home respite carers.12 By contrast, some of the six Portuguese in-home respite carers who received 3 h of intensive training in engaging people with dementia in meaningful activities felt disappointed that the experience was not more challenging. Most were rewarded by learning greater patience, better communication skills and emotional sensitivity.13 Residents of nursing homes are typically more cognitively and behaviorally impaired than people living in the community. In a large Canadian nursing home complex, eight volunteers were given 5 h training in dementia care, empathic communication and cultural sensitivity followed by personal mentoring. Some of them had cared for a family member with dementia and wanted to help others in the same situation. One volunteer thought that residents would be “far worse” behaviorally than proved to be the case. Most succeeded in building positive relationships, identifying congenial activities and staying “in the moment.”14 In an earlier study, we found that nursing homes welcomed volunteers’ provision of company and stimulation but tended to discourage them from engaging with residents with prominent behavioral symptoms, fearing that they would be unable to cope. As a result, the residents most in need of company, stimulation and meaningful activity were actually the least likely to receive it. The volunteers themselves reported being motivated by a wish to give something back to their community and by personal needs to remain active and form new relationships. Training was greatly valued and most reported that they would be interested in learning new approaches to working with confused, agitated residents.15 In this current study, we set out to train a small sample of nursing home volunteers in the delivery of personalized activities using an approach that has proved effective in promoting engagement and reducing agitation in nursing home residents with advanced dementia. It was not the purpose of the study to test the treatment’s effectiveness. This has been demonstrated previously.16 Instead, we set out to determine volunteers’ interest in helping deliver such a program, and their capacity to persist with it despite
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likely obstacles, as a guide to future practice. The question addressed by this pilot study was: Are volunteers able and willing to engage in individually-tailored activities with residents with advanced dementia and prominent behavioral symptoms? The Montessori-type activities program employed in the study was developed for use in a readily taught, manualized fashion by professional and family caregivers with access to limited physical resources. The goals of the program were to select a range of activities that matched each resident’s former interests, skills and culture and could readily be made more or less challenging, depending on their current cognitive and physical capacities. Activity facilitators paid close attention to their posture, demeanor and speech with the goal of presenting an inviting, non-threatening presence that engaged and maintained residents’ interest. Residents were typically invited to “help” the facilitator complete a task; the activity was then modeled, and the resident was prompted to participate. Thus, a resident with moderately severe dementia and an interest in baking might be encouraged to sort pictures of baking implements by size or color; to arrange them in a sequence, or to relate a narrative of a baking task. If one task failed to capture the resident’s interest, the facilitator moved quickly to an easier or harder task as indicated. Little verbal interaction was required for people with limited language skills. A detailed description of the program is available online.17 In an earlier randomized cross-over trial involving 44 nursing home residents with frequent, persistent agitated behaviors, an identical program achieved significant reductions in agitated behavior counts and significant increases in positive effect and engagement.16 The purpose of this present study was to explore the potential for the translation of individualized activities into everyday practice with volunteers acting as facilitators. Since recruiting and training volunteers in new endeavors is timeconsuming and therefore expensive, it is important to check that the approach is both feasible and attractive to volunteers. Methods The study was a descriptive feasibility review using largely quantitative methods to gauge: (i) volunteers’ interest in facilitating an individually-tailored activity program with a resident with advanced dementia and agitated behavior; (ii) their capacity to remain engaged in a treatment program after a period of training, and (iii) changes in their attitudes and knowledge of dementia over the course of the study. We anticipated that a greater knowledge of dementia and more positive attitudes to people with dementia at the study outset would be associated with higher retention rates. Sample selection 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 authorizes admission based on need and regulates standards of care. We approached 18 aged care homes in southeast Melbourne, Australia, of which nine agreed to participate. Of the remainder, four facilities expressed interest but took no further action; volunteers at two homes chose not to be involved; one home was closing; one was undergoing accreditation, and one had no volunteers. The nine participating homes had a total of 33 volunteers of whom 14 were unable to meet the study’s training and visitation requirements. The 19 enrolled volunteers were paired with a resident in the same home who met the following criteria: (i) a chart diagnosis of dementia; (ii) a frequent agitated but non-aggressive behavior based on staff members’ ratings on the Cohen-Mansfield
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Agitation Inventory,18 and (iii) residency in the home for more than three months. Activities Family members provided information about each resident’s former interests and preferred activities. The facilitator, in consultation with the family, developed a range of materials that were judged likely to engage the resident’s interest and to match their cognitive, language and physical capacities. Commonly preferred activities in this study included reading, music, craft work, praying, arranging flowers and sorting, folding or matching items.
Ethical considerations The study was approved by the Monash Health and Monash University ethics committees (Number 12027B). Informed written consent was sought from the volunteers and the person responsible for participating residents (usually a family member) in line with local research practice guidelines. While volunteers were tasked with engaging residents in activities, it was made clear that residents were never to be coerced. Results Participants
Training and supervision Each volunteer attended a 2.5 h training session with an experienced facilitator on the principles and practical application of Montessori-type activities, together with information on their selected resident and instruction on 10 individualized activities that had been developed in discussion with family members. They were then asked to make twice-weekly, 30-min visits to their selected resident at mutually convenient times, preferably over a three-week period, and to keep a written record of their activities. Volunteers were contacted by researchers at the half-way point to check on progress, address questions and concerns, and ensure adherence to the program. Measures Volunteers completed the knowledge and attitude subscales of the Tool for Understanding Residents’ Needs as Individual Persons before and after completing the program.19 The knowledge subscale includes five factual items (for example, ‘Challenging behaviors are inevitable with dementia’) while the attitude subscale’s eight items tap values (for example, ‘Social participation is important for people with dementia’). Responses are scored on a 5-point Likert scale to give total scores for knowledge (range 0e20) and attitudes (range 0e32) with higher scores denoting greater knowledge and more positive attitudes. Residents’ cognitive status was assessed using the Clinical Dementia Rating scale20 based on information provided by staff members and the frequencies of 29 agitated behaviors were rated by staff members using the Cohen-Mansfield Agitation Inventory.18 After the final visit, volunteers participated in a semi-structured face-to-face interview concerning the program’s feasibility and acceptability; its most and least appealing aspects; their perceptions of residents’ affect, engagement and behavior during activities; the responses of staff members, co-residents and family members to the program; the experience of volunteering; suggestions to improve the program, and their willingness to continue the activities once the study ended. Data analysis Continuously distributed and categorical numeric data were analyzed using t-tests and chi-square tests respectively. The interviews were audio-taped, transcribed and then subjected to thematic analysis by two researchers (EvdP, HW) to elicit concisely described patterns and themes. This analysis entailed familiarization with the data; generating initial codes; searching for themes; reviewing themes by moving back and forth from the entire dataset to the transcripts; defining and naming themes, and producing a summary using compelling extract examples. This inductive approach allowed the findings themselves to emerge as significant themes.21
The 19 volunteers, 16 of whom were female, had a mean age of 56.7 years (range 19e81) and had spent between 5 weeks and 16 years as a nursing home volunteer (mean 4.4 years). Only two reported that they had no prior exposure to people with dementia. Nine had had a lot of exposure. Of the 19 selected residents, one was rated on the Clinical Dementia Rating scale as having mild dementia and nine each had moderate and severe levels of dementia. Their Cohen-Mansfield Agitation Inventory scores ranged from 9 to 62 with a mean of 34.5 points out of a maximum of 174 points. Outcomes and measures Three volunteers withdrew before completing any treatment sessions. One found paid work; one became unwell, and another person’s matched resident died. None of them participated in the final interview but they completed the initial interview and scales. Of the 16 remaining volunteers, eight completed every study requirement with three far exceeding them, making between 11 and 13 visits each. Another two volunteers missed a single visit; one missed two visits, and one missed four visits. Four volunteers’ visits sometimes fell short of the 30-min goal. Reasons for missed or shortened visits included personal matters in two cases; the failing health or death of residents in five cases, and a resident’s excessive agitation in one case. All of these 16 people participated in the final interview but two failed to complete the final scales. Compared with the three volunteers who withdrew at an early stage, the 16 who embarked on the program had higher dementia knowledge scores at study outset (12.1 versus 10.7 points) and significantly higher dementia attitude scores (24.3 versus 20.3 points; F ¼ 1.5, df ¼ 17, p ¼ 0.046). With respect to specific attitudes, they were more likely to believe that it was important to know residents’ life histories (c2 ¼ 6.1, df ¼ 2, p ¼ 0.047) and less likely to believe that people with dementia had lost their personal identities (c2 ¼ 19.0, df ¼ 4, p < 0.001). They described the activities as feasible, acceptable and helpful and eight of them planned to continue with the activities once the study ended. Over the course of the program, their dementia knowledge scores rose from 11.9 to 12.7 points, and attitude scores rose from 24.2 to 25.5 points, but these differences were not statistically significant. Volunteers’ experiences Four themes emerged from the thematic analysis: the volunteers’ own capacity to engage in activities with residents; a sense of validation of this engagement; their difficulties in engaging in some instances; and their reasons for not wishing to engage. Some textual extracts are shown below by way of illustration.
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Capacity to engage Most volunteers were eager to undertake the activities as prescribed but, on reflection, some recalled feeling apprehensive and others had found it challenging to engage with residents while being mindful of the need to match their pace and to respond sensitively to their mood and level of interest. ‘I was really worried about it at first. Is she going to be like, ‘Why are we doing this?’ but before you know it she had become wrapped up and she would really not think twice. I was actually quite surprised how easy it was to get her to do something’ (Volunteer 8). ‘You remember to be slower I guess, the movements and when showing her what we were doing. Just slow movements so that she could kind of follow or didn’t feel under pressure to keep up’ (Volunteer 6). ‘It’s a little mind game almost but you’ve got to stop and think, ‘Hang on a minute. You’re supposed to be going slow’. It’s all about are they enjoying it? It’s making them go ‘Oh yeah’’ (Volunteer 17). Validation of engaging Volunteers enjoyed facilitating activities when they were able to interact successfully with their matched resident. When engagement was achieved, they experienced a real sense of reciprocal benefit with pleasure being experienced by both parties. ‘I loved the one-to-one sessions actually. Previous to this, my friend and I had been coming in and dealing with big groups. But I really love the one-to-one interaction. You could see that she enjoyed it so much, she was just so happy to see me. You could just see her respond, it was so positive’ (Volunteer 7). ‘When we played with the fabrics, she definitely liked those the best. She was feeling them and helping me put them on pieces of paper. After we finished the task, she would say, ‘We’ve done a good job’ and she would be really happy and smiling. And she seemed to love the interaction as well, just sitting with me holding hands’ (Volunteer 6). ‘I started to clue in and go, ‘I can see the difference from last week, the week before, to today.’ So that’s the sort of difference and just making another resident say, ‘Oh I’d like to do some activities.’ That was huge. I told my coordinator and she was like, ‘Oh yeah’’ (Volunteer 15). ‘I can definitely see a difference in the activities. When she saw it again she didn’t say anything about remembering it but there was less confusion with these activities and everything so you can see those skills are kicking in and whatever she hasn’t been using they’re coming back to her’ (Volunteer 17). Difficulties in engaging When residents failed to engage in activities, volunteers sometimes felt rejected, disappointed and frustrated. They found it difficult to cope with residents’ distress and agitation, especially when their efforts to relieve this distress proved unsuccessful. ‘You can tell with her. I found that she was specifically not liking anything. You could hear from the comments she was making that she totally was not interested’ (Volunteer 19). ‘I suppose seeing someone zoned out or in distress or their restlessness, seeing them in distress is distressing and upsetting. That’s not a pleasant experience for them and it’s not a pleasant experience for anyone around. And obviously trying to settle that down or bring them back to a quiet place is the objective
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and when you’re not successful then that’s frustrating’ (Volunteer 4). ‘She was very unwell. She made it very clear she didn’t want to see me and the last session I said, ‘I’ve brought some beautiful things for you to look at’ and she said, ‘I could not look at anything’ (Volunteer 16). Reluctance to engage A couple of volunteers adopted a negative approach to the program’s philosophy with a sense of futility in trying to work collaboratively and sensitively with confused, agitated residents. ‘I’m not a researcher but once the damage has been done, the nerves or whatever, the cells have been disconnected. Unless you re-connect them, they are going to have this problem. Whether it’s worth going on with this program, I don’t think so. I think we should invest the money somewhere else’ (Volunteer 8). Discussion Our feasibility study complied with many but not all of the recommendations made by the Health Behavior Change Consortium to improve the reliability and validity of complex health intervention studies.22 Research interventions are usually fully standardized but personalized activities cannot be pre-determined by their very nature. In retrospect, though, it would have been desirable to check volunteers’ skills prior to field work; to provide greater supervision over the course of the study to prevent drift in practice, and to minimize differences in conditions between nursing homes. Notwithstanding these limitations, our program proved successful, in line with most previous reports of nursing home volunteering13,14 and with our own earlier observation that volunteers were keen to learn new ways to work with residents with challenging behaviors.15 Sixteen of our 19 recruits completed training and commenced visits to residents, nearly all of whom had moderate to severe dementia and demonstrable levels of motor agitation. Three of the volunteers paid many more visits than we requested and half of them wished to continue with the activities beyond the end of the study. A number fell short of requirements regarding the number and duration of visits but their reasons for doing so were beyond their control. When the activities captured residents’ interest, and volunteers could see evidence of heightened attention and skillfulness, they felt rewarded and wished to persist in their efforts. At the same time, participation was sometimes challenging. It can be difficult to capture residents’ attention when they are agitated, irritable or physically unwell and volunteers sometimes felt that they had “failed” to meet our expectations, despite our best efforts to prepare them for all these possibilities. This was one of the drawbacks of a formal study. Volunteers are not usually required to visit at set intervals, keep log books or complete questionnaires. Our research requirements added pressure and it might prove easier therefore to spend time with agitated people under more normal circumstances. Volunteers with a better knowledge of dementia, and more positive attitudes to people with dementia, were more likely to complete the program. Conversely, three of them left the program early through a lack of interest or satisfaction. They preferred their customary activities and a couple of them voiced doubts about the value of directing attention to markedly disabled residents. To avoid disillusionment, it will be helpful to give interested volunteers an opportunity to trial activities with careful oversight and
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support. Ongoing supervision and opportunities for debriefing will also be required since residents’ responsiveness to volunteers, and their mental and physical health, are subject to change. Few volunteers have health care experience and their capacity to cope with rejection, verbal or physical outbursts, or physical decline will often be limited. Close support and personal supervision might not be feasible on a continuing basis in smaller residential facilities but some larger institutions have dedicated volunteer supervisors who could fulfill this role. This pilot study has demonstrated that it is possible to attract and retain a proportion of volunteers in efforts to improve the quality of life of confused residents whose agitation often precludes them from therapeutic social engagement and meaningful, individually-tailored activity. It is unlikely that staff members will be able to meet all the needs of residents of large aged residential facilities. Volunteers, whose numbers are growing, may help to fill this gap. References 1. Steinberg M, Shao H, Zandi P, et al. Point and 5-year prevalence of neuropsychiatric symptoms in dementia: the Cache County study. Int J Geriatr Psychiatry. 2008;23:170e177. 2. Brodaty H, Draper B, Saab D, et al. Psychosis, depression and behavioral disturbances in Sydney nursing home residents: prevalence and predictors. Int J Geriatr Psychiatry. 2001;16:504e512. 3. O’Connor DW, Ames D, Gardner B, King M. Psychosocial treatments of behavior symptoms in dementia: a systematic review of reports meeting quality standards. Int Psychogeriatr. 2009;21:225e240. 4. Cohen-Mansfield J. Nonpharmacologic interventions for inappropriate behaviors in dementia: a review, summary and critique. Am J Geriatr Psychiatry. 2001;9:361e381. 5. O’Connor DW, Ames D, Gardner B, King M. Psychosocial treatments of psychological symptoms in dementia: a systematic review of reports meeting quality standards. Int Psychogeriatr. 2009;21:241e251. 6. Gerdner LA. Effects of individualized versus classical “relaxation” music on the frequency of agitation in elderly persons with Alzheimer’s disease and related disorders. Int Psychogeriatr. 2000;12:49e65.
7. Garland K, Beer E, Eppingstall B, O’Connor DW. A comparison of two treatments of agitated behavior in nursing home residents with behaviour: simulated family presence and preferred music. Am J Geriatr Psychiatry. 2007;15: 514e521. 8. Thoits PA, Hewitt LN. Volunteer work and well-being. J Health Soc Behav. 2001;42:115e131. 9. Australian Bureau of Statistics. Voluntary work, Australia. Canberra, Australia: Australian Bureau of Statistics; 2010. 10. Wilson J. Volunteering. Annu Rev Sociol. 2000;26:215e240. 11. Söderhamn U, Landmark B, Aasgaard L, Eide H, Söderhamn O. Volunteering in dementia care: a Norwegian phenomenological study. J Multidiscip Healthc. 2012;5:61e67. 12. Robinson KM, Clemons JW. Respite care: volunteers as providers. J Psychosoc Nurs. 1999;37:30e35. 13. Guerra SRC, Demain SH, Figueiredo DMP, De Sousa LXM. Being a volunteer: motivations, fears and benefits of volunteering in an intervention program for people with dementia and their families. Activ Adapt Aging. 2012;36:55e78. 14. Damianakis T, Wagner LM, Bernstein S, Marziali E. Volunteers’ experiences visiting the cognitively impaired in nursing homes: a friendly visiting program. Can J Aging. 2007;26:343e356. 15. Van der Ploeg ES, Mbakile T, Genovesi S, O’Connor DW. The potential of volunteers to implement non-pharmacological interventions to reduce agitation associated with dementia in nursing home residents. Int Psychogeriatr. 2012;24: 1790e1797. 16. Van der Ploeg ES, Eppingstall B, Camp CJ, Runci SJ, Taffe J, O’Connor DW. The effect of personalized, one-to-one interaction using Montessori-based activities on agitation, engagement and affect in aged care facility residents with dementia. Int Psychogeriatr. 2013;25:565e575. 17. Alzheimer’s Australia. Relate, Motivate, Appreciate: A Montessori Resource. Melbourne: Alzheimer’s Australia. Available at, www.fightdementia.org.au/ common/files/VIC/20130725_-_Montessori_Resource.pdf; 2013. Accessed 28.11.13. 18. Cohen-Mansfield J. Agitated behaviors in the elderly II: preliminary results in the cognitively deteriorated. J Am Geriatr Soc. 1986;34:722e727. 19. Edvardsson D, Fetherstonhaugh D, Nay R. The Tool for Understanding Residents’ Needs as Individual Persons (TURNIP): construction and initial testing. J Clin Nurs. 2001;20:2890e2896. 20. Hughes CP, Berg L, Danziger WL. A new clinical scale for the staging of dementia. Br J Psychiatry. 1982;140:566e572. 21. Braun V, Clark V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77e101. 22. Bellg AJ, Resnick B, Minicucci DS, et al. Enhancing treatment fidelity in health behavior change studies: best practices and recommendations from the NIH Behavior Change Consortium. Health Psychol. 2004;23:443e451.