Feature ArticleThe feasibility of volunteers facilitating personalized activities for nursing home residents with dementia and agitation
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 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 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 personally-tailored 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 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 time-consuming and therefore expensive, it is important to check that the approach is both feasible and attractive to volunteers.
Section snippets
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
Participants
The 19 volunteers, 16 of whom were female, had a mean age of 56.7 years (range 19–81) 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
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
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