Time out weekly smile: A pilot test of a virtual respite program

Abstract

Respite care provides alternative care for persons living with dementia (PLWD) and is intended to alleviate the burden of caregiving. However, the evaluation of respite programs is limited. Time Out Weekly Smile (TOWS) is a virtual intergenerational respite care program designed to meet the needs of PLWD and their care partners and provide allied health students opportunities to serve as respite volunteers. This multimethod pilot study aimed to evaluate the experience of TOWS participation for all (i.e., care partners, PLWD, students) and identify outcomes of interest for future efficacy studies. Semi-structured interviews with all participants after experiencing TOWS were analyzed using conventional content analysis methods and student surveys of dementia attitudes were summarized. Results demonstrated lasting mutual benefits for all participants including social connection and creating meaning. Our findings suggest that including all respite care participants in future efficacy studies will elucidate the wide impact of respite care programs.

Introduction

Currently, an estimated 6.7 million people are living with dementia in the United States; a number that is expected to rise exponentially in the coming decades.¹ Dementia is characterized by a decline in cognition and function necessitating assistance in daily life. Assistance for persons living with dementia (PLWD) is largely provided by unpaid or informal care partners (heretofore care partners), often family or friends. More than 11 million friends and family members provided an estimated 18 billion hours of care to PLWD in 2022.¹ While essential to meet the needs of PLWD, caregiving has significant psychosocial and physical consequences for care partners, which were worsened during the COVID-19 pandemic.^2–4

Respite care, specialized temporary support services that provide alternative care arrangements for PLWD, is one intervention intended to provide relief to care partners and alleviate some of the burden of extensive caregiving duties.⁵ However, evidence evaluating these programs is limited and effectiveness has not been demonstrated. A 2014 systematic review identified only four trials evaluating respite care for PLWD and their care partners.⁶ Of the four trials, all had low quality evidence, none demonstrated statistically significant effects on caregiving outcomes, and none explored outcomes for PLWD or respite care workers.⁶

Respite care for PLWD is typically provided, either formally or informally in the home, by respite care workers with a variety of backgrounds, though most commonly nursing.⁷ However, stimulated in part by the COVID-19 pandemic, there is a shortage of such providers available to meet current needs.¹ Further, working with older adults, including those with dementia, ranks among the least desired specialty in nursing and few interventions have made significant changes in this preference.⁸ However, students with prior high quality positive experiences working with older adults may be more likely to choose careers in geriatrics.^8,9 Additionally, having positive attitudes toward older adults, such as expressing empathy, promoted geriatrics nursing work, while discriminatory attitudes are correlated with less interest in geriatrics nursing work.⁸ Yet, few opportunities exist in nursing school curricula and it is unclear which specific experiences provide positive interactions and impact student attitudes.⁹ Therefore, identifying effective positive opportunities for nursing students to interact with older adults, including those with dementia, is needed. Time Out Weekly Smile (TOWS) was designed as a virtual intergenerational respite care program to meet the needs of PLWD and their care partners and to provide allied health students with a guided opportunity to serve as respite volunteers.

Treatment efficacy evaluation is considered an essential first step in reducing threats to validity that may negatively impact future efficacy studies evaluating respite care interventions.¹⁰ Treatment fidelity (i.e., methodological strategies to enhance reliability and validity of behavioral interventions) includes treatment integrity (i.e., delivery of treatment as intended), receipt (i.e., participant knowledge and understanding), and enactment (i.e., participants application of skills in their lives).¹⁰ While respite care has the potential to alleviate care partner burden and provide positive experiences for PLWD and respite care workers, little research describes treatment enactment outcomes for respite care in general, and even less describes benefits for all respite program participants: PLWD, care partners, and respite care workers.

Thus, the purpose of this pilot study is to elucidate treatment enactment by evaluating the experiences of TOWS participation for all members (i.e., PLWD, care partners, and nursing student volunteers) and identify potential benefits that could inform enactment outcomes of interest for future efficacy studies. We hypothesize that there will be treatment enactment behavior changes for all participants, not just care partners. This study is the first step in paving the way for an evidence-based respite care program and demonstrating the impact of respite care programs. Importantly, this pilot serves as an opportunity to explore the potential benefits for nursing students, including factors that may influence their desire to work with older adults in the future. The results of this study will inform design processes for future studies intended to demonstrate efficacy of respite care interventions by identifying relevant enactment outcomes.

Methods

Design

A multi-method single group pilot study was conducted to evaluate the experiences of TOWS participants and identify potential treatment enactment outcomes for future study. As there is very little evidence that identifies which enactment outcomes are most impacted by respite care programs, a qualitative approach was chosen to provide a broad view of the potential benefits of participation.^6,11 Given that some evidence points to positive nursing student attitudes impacting intent to go into geriatric nursing and a validated scale exists to measure this concept, we chose to describe student stigma in dementia quantitatively.^8,12

PLWD, their care partners, and student volunteers were recruited to take part in the TOWS program and invited to describe their experiences and perceived benefits of participation. Data collection occurred in parallel. Qualitative data included an exploratory study using conventional content analysis of semi-structured interviews with all participants to evaluate experiences of TOWS participation and describe potential benefits.¹¹ Quantitative data included structured data to assess eligibility of participants, characterize the sample, and describe nursing student perspectives of dementia stigma after participation in the TOWS program. There was no mixing of the two datasets, which is why this pilot is termed multi-method rather than mixed method. This study was approved by the University of Pennsylvania Institutional Review Board.

Time out weekly smile

Time Out is a nationally recognized respite program that trains allied health college student volunteers to deliver low-cost respite care for community-dwelling older adults with chronic illnesses. In Time Out, students spend 3–9 h per week in the homes and community spaces of older adults engaging in recreational activities with their match. Recreation activities include art, music, reading, playing games, exercising, conversation, small chores around their house, and more. Students are not trained to support older adults in personal care, medication administration, ambulation, home cleaning beyond minor chores, or cooking. During Time Out, caregivers often use respite time to complete chores in and outside of their home and engage in self-care activities such as spending time with loved ones, exercising, and resting.

Time Out Weekly Smile (TOWS) is a tailored virtual version of the Time Out program intended to meet the unique needs of PLWD and their care partners, including training modules on aging, dementia, and meaningful engagement during respite care for student volunteers.¹³ TOWS launched as a virtual arm of Time Out during the COVID-19 pandemic and delivered free respite care to PLWD and their care partners for 45–90 min per week over 12 weeks.¹⁴ Like Time Out, during TOWS students engaged in recreational activities they could do virtually such as art, music, reading, playing games, exercising, and conversation. Care partners were able to use time for themselves, however some care partners chose to join their loved one during their TOWS connection time. TOWS has the potential to engage PLWD, deliver flexible relief to care partners, and offer students positive experiences.

Sample

Participants were recruited for TOWS from a sample of participants who had been recruited for the Time Out program (n = 12), the in-person respite care program, which was terminated due to the COVID-19 pandemic. Participants from the Time Out program were eligible for TOWS if they completed the Time Out baseline visit. Research staff reached out to all eligible Time Out participants (n = 8) to learn more information about TOWS and assess for interest in the virtual program. Three dyads agreed to participation in TOWS and completed consent. Reasons for refusal included inability to effectively utilize technology due to lack of technological literacy or cognitive impairment. Informed consent was obtained with both PLWD and their care partner present. Clinical Dementia Rating Scale < 2 was used as an indicator of consent capacity and research staff also monitored for signs of dissent.

Participants for Time Out were recruited using the following procedures. PLWD and their identified care partners were recruited from the University of Pennsylvania Memory Center, University of Pennsylvania Frontotemporal Degeneration Center, Division of Cognitive Neurology, and University of Pennsylvania Geriatrics Clinic. Clinicians from each of these practices referred patients who had a clinical diagnosis of dementia to participate in the study. PLWD were eligible if they were diagnosed with dementia and had a global Clinical Dementia Rating Score (CDR)¹⁵ of 0.5 to 2 indicating mild to moderate dementia, were 50 years of age or older, community dwelling, independent with basic activities of daily living (Schwab and England Activities of Daily Living¹⁶ > 50), appropriate for companion care, as determined by the study team (e.g., able to engage in respite activities, expressed interest), and had a primary in-home care partner. PLWD with behaviors requiring a higher level of care than a student companionship or those who could not perform activities of daily living independently were excluded. Primary in-home care partners were eligible if they lived with the PLWD being enrolled in the study, were willing to oversee the student respite worker, endorsed any feelings related to care partner burden or stress (12-item Zarit Burden Interview¹⁷ and Depression Anxiety Stress Scale¹⁸), and passed a state background check.

Student participants were recruited from the University of Pennsylvania and Temple University. Allied health students were eligible to participate if they had completed the student TOWS training and passed a Pennsylvania state background check. Nursing students were purposively recruited from allied health professional volunteers. Similar to many other research studies, recruitment efforts into the TOWS program were significantly limited by the COVID-19 pandemic.¹⁹

Data collection and analysis

Qualitative data

Upon completion of the 12-week program, all participants were invited to complete semi-structured interviews aimed at exploring participation experiences and potential benefits of the program (MK). Two separate coders (BM, LF) transcribed and analyzed interviews using NVivo software for data storage and management.²⁰ Conventional content analysis methods were used to identify categories and develop a codebook inductively from interviews with definitions and illustrative quotes.¹¹ The codebook was then used by both coders to independently code all transcripts. Coding consistency was reviewed, and all discrepancies were discussed until consensus was reached. Trustworthiness criteria consisted of credibility, transferability, dependability, and confirmability.²¹ We strove for credibility by using perspectival triangulation (e.g., interviewing PLWD, care partners, and volunteers), multiple coders, peer debriefing, and discussing negative cases. We aimed to maintain transferability via description of sample context (e.g., demographics and situation). Dependability was maintained via verbatim transcription and audit trails of coding decisions. Finally, confirmability was sought through structured reflexivity and utilizing interview guides vetted by experts in dementia respite care.

Quantitative data

Based on hypothesized benefits, self-report surveys were collected from nursing student volunteers to assess student attitudes toward PLWD. Student volunteer participants completed the Family Stigma Alzheimer’s Disease Scale (FS-ADS) after completing the 12-week TOWS program.¹² The FS-ADS is a 58-item measure of stigma assessing seven domains of dementia stigma with responses ranging from 1 to 7 with higher scores indicating higher stigma.¹² Survey questions query respondent’s stigma related to PLWD in general, not specific individuals. Responses to items were then used to create individual nursing student profiles describing their attitudes toward PLWD after participation in the TOWS program.

Results

Nine participants – three PLWD, three care partners, and three nursing student volunteers – agreed to participate in the pilot study and completed the TOWS program (demographics in Table 1). PLWD were an average age of 71.3 ± 4.63 years old and two were men (n = 2 of 3). All PLWD self-identified as white, had a college education and an income level above $25,000 per year. All PLWD had mild level of cognitive impairment (CDR = 0.5) and had some level of dependency on activities of daily living (Schwab and England ADL Scale = 76.7 ± 15.3). Care partners were an average age of 69.5 ± 4.9 years old and two were women (n = 2 of 3). All care partners self-identified as White and as spouses to the PLWD. All care partners exhibited some level of caregiving burden or stress prior to participating in the program. Nursing student volunteers were 18.7 ± 0.6 years old on average. All self-identified as women, one identified as White, one Asian, and one Black. The average length of interviews was 12 min, range (71–5 min).

Table 1.

Participant demographics and clinical characteristics.

		PLWD* (n = 3)	Care Partner (n = 3)	Student Volunteers (n = 3)
Demographics	Age (years), mean (SD)	71.3 (4.6)	69.5 (4.9)**	18.7 (0.6)
	Women, n (%)	1 (33)	2 (67)	3 (100)
	White, n (%)	3 (100)	3 (100)	1 (33)
	College graduate, n (%)	3 (100)	n/a	n/a
	>25,000 income, n (%)	3 (100)	n/a	n/a
	Spouse, n (%)	n/a	3 (100)	n/a
Dementia Severity	CDR Global, mean (SD)^	0.5 (0)	n/a	n/a
Function	Schwab and England ADL Scale, mean (SD) ^	76.7 (15.3)	n/a	n/a
Care Partner Burden	12-item ZBI, mean (SD) ^	n/a	20 (5.3)	n/a
Care Partner Stress	DASS - Stress^	n/a	20 (5.3)	n/a
Care Partner Anxiety	DASS - Anxiety^	n/a	3.3 (4.2)	n/a
Care Partner Depression	DASS - Depression^	n/a	4 (4)	n/a

^*PLWD = person living with dementia, CDR = Clinical Dementia Rating, ADL = activities of daily living, ZBI = Zarit Burden Interview, DASS = Depression anxiety stress scale.

^**One value missing.

^{^}Score ranges: CDR–05 (mild-terminal); ADL 0–100 (bedridden-fully functional); ZBI 0–48 (none-most); DASS-Stress 0–42 (normal-extremely severe); DASS-Anxiety 0–42 (normal-extremely severe); DASS-Depression 0–42 (normal-extremely severe).

We discovered five categories of mutual benefits experienced by all participants including: (1) Connecting with Someone Different, (2) Predictably Different Engagement, (3) A Lasting Impact, (4) Filling in Pandemic Gaps, and (5) Creating Meaning. We discovered three categories of benefits for PLWD and care partners: (1) Reaffirmation, (2) Mood Improvement, and (3) Protected Time. Finally, we discovered five categories of benefits for nursing student volunteers (1) Learning About Aging and Dementia, (2) Building Confidence and Reducing Fear, (3) Developing Empathy, (4) Developing Relational Practice, and (5) Developing Future Career Interests. Nursing student profiles of stigma demonstrated unique patterns described below.

Mutual benefits

Five categories were identified that demonstrated the mutual benefits of participating in TOWS between PLWD, their care partners, and student volunteers that were present across the sample (Fig. 1). First, participants described Connecting with Someone Different, wherein they enjoyed connecting with an individual with different experiences who was outside of their typical social circle and found mutuality and respect despite these differences. As one student volunteer said, “As a college student, we’re usually surrounded by other college students [...] it’s really refreshing to get to talk with a person who has [a] different mindset probably along with perspective on various things.” Second, participants appreciated having programming that was Predictably Different Engagement, or “something [regularly] on the calendar” to break up the monotony of the week that was different and more engaging than their usual activities. Next, participants described A Lasting Impact, wherein they found that the impact of TOWS lasted beyond the time respite was provided. As one care partner said, “We can think of [the respite volunteer] now as a new friend. And I get the chills, actually, as I say that. So, I can foresee where, you know, we might have an enduring friendship out, out of all of this.” While a student volunteer said that the program had “been helpful for me in like multiple aspects of life.” Next, participants felt that TOWS was particularly valuable during the COVID-19 pandemic, when activities and connections were limited as explained in the category, Filling Pandemic Gaps. A care partner demonstrated this by saying, “I think it’s been a very positive experience, especially during this COVID time when we have had to cancel so many things.” Though most preferred in-person programming if it were available, participants also felt that the virtual format worked well and had some benefits. Finally, participants appreciated feeling that their participation was meaningful to themselves or others, as illustrated in the category Creating Meaning and described by a care partner, “it gave a sense of this, there’s some meaning in this day other than how will we fill the time.”

Fig. 1.

Mutual benefit categories with illustrative quotes.

Benefits for persons living with dementia and care partners

Individuals living with dementia experienced Reaffirmation as part of participating in the TOWS program where they felt reaffirmed in their abilities, self, and agency. As one care partner described of their loved one’s experience, “she tends to be very hard on herself in all sorts of ways. And, uh, in the current context, she, she tends to think that she’s you know, not making any sense, when usually she’s making quite a bit of sense [...] and so, I think [...] more opportunities to have normal conversations with people are valuable.” Participants living with dementia also experienced Mood Improvement because of the experience – “he always did have an upbeat mood that clearly was improved by the experience”.

Care partners, on the other hand, felt that they were granted Protected Time, where not only were they not responsible for the PLWD but they were also able to engage in activities that brought them joy. As one care partner described, “I took an online painting class and so I said, ‘This has to be my one hour, special, and it can’t just be regular.’ And so, I did that. So, it was very helpful to me, even though it was one hour.”

Benefits for nursing student volunteers

Nursing student volunteers described benefits of TOWS participation in five categories identified through interview analysis. First, they described Learning About Aging and Dementia through didactic and experiential knowledge that they felt they hadn’t received elsewhere in their schooling. Student participants mostly had experiences with dementia through their family networks, so this program offered something outside of their established connections that also incorporated evidence-based practice. Student volunteers also described Building Confidence and Reducing Fear about aging, dementia, and death. As one volunteer stated, “I was really worried about the older adults, ‘cause older people kind of scare me [laughing]. They do a lot and I’m just like, ‘Please don’t hurt yourself!’ But now I’m, more comfortable for them, so this really helped make me comfortable with the idea.” Next, students discussed developing an understanding of the experiences of older adults, persons living with dementia, and care partners that allowed for greater empathy in the category Developing Empathy. As one student described, “it’s helped me understand like how difficult aging is and really like, think about that when [...] I’m providing care or even just talking to an older person.” Further, students described ways in which this program helped them in Developing Relational Practice including interpersonal communication and relating to others on a human level. As one student said that her experience in TOWS, “change[d] my mindset on how to, I guess, approach along with, talk with elderly people. They’re just people and they want to talk about interesting things as well, and their life can be really, um interesting to know about as well, since they have a lot more experience.” Finally, student volunteers discussed Developing Future Career Interests. While this experience may not have influenced student volunteers to choose a career in aging, it did influence them to reconsider their careers given what they learned. As one student said, “I am still not entirely sure about what I wanna do in the future, but I am definitely more open now to working with older people now that I have an understanding of how kind and friendly they can be and how really accepting they are.”

Nursing student perceptions of dementia stigma

We described student profiles using the FS-ADS. All students most frequently endorsed more (i.e., higher scores) either support or pity domains (i.e., to what extent to you think that other people feel [pity or willingness to give support] toward persons with dementia) and less (i.e., lower scores) for domains of aesthetics (e.g., looks filthy, looks unkempt) and danger (e.g., is dangerous to themselves or others).

Discussion

This is the first study to our knowledge to report the experiences and potential benefits to all participants in a respite care program, including respite care workers.⁶ Our study found that TOWS participation was mutually beneficial and created a lasting impact for all participants. Key features of mutual benefit included Connecting with Someone Different, Predictably Different Engagement, Filling in Pandemic Gaps, and Creating Meaning. PLWD and their care partners experienced specific benefits. PLWD experienced reaffirmation of their abilities and mood improvement. Care partners received protected time away from caregiving duties and to engage in other meaningful activities. Nursing student volunteers gained aging and dementia knowledge, built confidence, reduced fear, developed empathy and relational practice, and expanded their career interests. Nursing student volunteer profiles of dementia stigma are consistent with caregiver profiles and those who are female.^22,23 Further, they may demonstrate a more accurate representation of dementia symptom severity than the general public.²²

This study is limited because it is a pilot study and not intended to demonstrate efficacy or data trends. Further, this study focused on enactment fidelity and did not evaluate treatment integrity or receipt fidelity. Future efficacy studies should consider monitoring all elements of fidelity.¹⁰ The participant group for this study was small due to recruitment and retention challenges during the COVID-19 pandemic.¹⁹ Further, PLWD and their care partners were racially homogenous, well-educated, and able to participate virtually therefore limiting generalizability. This is especially important to consider in the setting of inequity in respite care access and use.^24,25 Future studies should consider how best to create and study accessible respite care programs for the diversity of PLWD and care partners and enhance recruitment efforts. Quantitative data are lacking pre-posttest surveys; therefore, we cannot make definitive statements about how individual participants were impacted by participation in the program.

Despite these limitations, there are important implications of this work. First, there is a dearth of evidence testing the efficacy of respite care programs.⁶ Those studies that test efficacy have not demonstrated impact on care partner outcomes and have not explored the impact for the care receiver or respite care worker (e.g., treatment enactment).⁶ Therefore, there is value in understanding how respite care is experienced and potential benefits for all participations, in order to design future efficacy studies that demonstrate outcomes.

The categories of benefit from the qualitative data in this study suggest potential enactment outcomes that may be impacted by respite care interventions for future trials. First, there may be benefits that carry across all participants including respite care providers, suggesting all participants may be included when measuring outcomes. For example, TOWS demonstrated an impact on socialization outside of anticipated social groups for all participants in the category Connecting with Someone Different, therefore measures of components of socialization could be considered across participants. As social engagement declines after dementia diagnosis and lack of social engagement can worsen care partner burden, interventions that may provide social engagement are important for PLWD and their care partners.^26,27 As with other similar intergenerational programs like Socrates Cage, TOWS may be a mechanism for social interaction for PLWD, their care partners, and students.²⁸

Next, PLWD in this study experienced mood improvement and reaffirmation in their abilities, self, and agency. Future studies may consider including measures for mood, dignity, and personhood. While measures for care partner burden may be a valuable outcome measure, future studies should also consider process measures such as time spent caregiving and time spent engaging in meaningful activities. Engagement in pleasurable activities for both PLWD and their care partners may lead to improvements in physical health and reduction in caregiver burden.²⁹

Finally, including respite care providers in research is an important and often neglected opportunity to understand the mutual benefits for all participants of the TOWS program and other respite programs. Future studies may consider including measures of dementia attitudes, empathy, and relational practice. We found that nursing student profiles of dementia stigma demonstrated interesting patterns. First, patterns were similar to a national sample of caregivers and women.²² Second, nursing student evaluation of dementia symptom severity may be more consistent with accurate representation of dementia symptom severity. For example, in national survey, nearly 75% of respondents reported that individuals with mild stage dementia would be very likely to be unable to remember recent events, whereas nursing students in the current study expected this not to be the case.²² Due to these findings, we suggest including the FS-ADS in future efficacy trials as a pre-post test to detect potential changes in perspective.²² Nursing curriculums lack positive experiences with older adults.⁹ Nursing schools may consider implementing TOWS programs to increase opportunities for positive clinical engagement with older adults.

Conclusion

This pilot study explores the benefits of TOWS, a virtual intergenerational respite program for PLWD and their care partners, using qualitative and quantitative methods. Though limited by a small and homogenous sample, this pilot study points to potential measures that should be considered in future efficacy studies of TOWS and other respite care programs. Importantly, including all respite care participants in research studies is essential for capturing the wide value of respite care programs.