An Interprofessional Skills Workshop to Teach Family Caregivers of People Living with Dementia to Provide Complex Care

Abstract

The purpose of this study was to evaluate the acceptability of and satisfaction with an interprofessional educational workshop to teach family caregivers of persons living with dementia to provide complex care. The workshop was developed by a team that included nursing, occupational therapy, speech-language pathology, nutrition and dental hygiene. Caregivers who attended the workshop completed an evaluation to describe their satisfaction and acceptability using a Likert-type scale, as well as open ended comments about their learning needs and feedback about the workshop. Semi-structured interviews were conducted with family caregivers and members of the interprofessional team to analyze and evaluate how the workshop may have improved their confidence in performing complex tasks and to obtain their perspectives on offering this program as a virtual workshop in the future. Family caregivers (n=171) reported high satisfaction with the workshop and strongly agreed that the workshop provided them with useful information to support their caregiving roles. Themes identified from the content of the interviews were: i) building understanding; ii) mastering new skills; and iii) learning skills together. Our results suggest and emphasize the importance and the benefits of an interprofessional team approach to support family caregivers and build confidence with complex care.

Introduction

There are over 11 million Americans who provide unpaid care to a family member or friend living with Alzheimer’s disease or related dementias (ADRD).¹ Dementia is a progressive condition, with family caregivers assuming increasing levels of care over time as the disease progresses. Family caregivers take on complex care tasks such as managing medication, nutrition support, and assistance with mobility as well as decision-making about medical treatments for their family member, often with little or no training.^2–5 There is a recognized need for interprofessional collaboration to provide family-centered care; an interprofessional model of education can best support the diverse learning needs of family caregivers.⁶

Background

Caring for a person living with dementia can be more demanding compared with providing care to an older adult without dementia.³ While caregivers often provide assistance with activities of daily living (ADL) (i.e. dressing, feeding) and instrumental activities of daily living (IADL) (i.e. medications, finances), behavioral symptoms, resistance to care, and communication difficulties associated with dementia complicate care provision. Furthermore, caregivers are taking on and managing complex care which was often the responsibility of healthcare professionals in the past.^4,5 For example, assistance with feeding can be complicated by changes in care recipients’ ability to swallow (dysphagia) and caregivers require education to recognize symptoms of dysphagia and prevent complications.^7,8 Medication management accounts for ~80% of complex care tasks caregivers provide and they require education about managing medications as the dementia progresses and monitoring of side effects.^5,9 Other complex care tasks frequently performed by family caregivers include assisting with mobility devices, preparing special diets, managing incontinence, and monitoring health changes.^3–5,9,10 Although over half of caregivers to persons with dementia take on complex care tasks, few receive training or assistance to perform this care.^2,5 There is a substantial gap in programs that teach caregivers to perform complex care tasks, with caregivers asking for training and support from healthcare professionals.³ Research demonstrates that caregivers are more likely to experience higher levels of stress when they lack information, skills for caregiving, and support from family and the formal care system.^11–14

Interprofessional Education for Dementia Care

Interdisciplinary healthcare teams are recommended as best practice to address the whole-person impact of dementia on the individual and the family caregiver.^15,16 There are however, limited studies that have addressed interprofessional education and practice in the context of dementia. The findings of a systemic review on interprofessional education for families impacted by dementia identified only three practice-based interventions and three classroom-based interventions.⁶ The The outcomes focused on team knowledge, skills, and confidence around different aspects of dementia care but did not assess outcomes for families impacted by dementia. There are significant gaps in person and family-centered dementia care and a need for interprofessional training and collaboration in this field.¹⁷ The program presented here provides an example of a workshop designed and delivered by an interprofessional team to address gaps in training for family caregivers around complex care for a person living with dementia.

Interprofessional Skills Workshop for Family Caregivers

A gap in education for family caregivers around provision of care was identified through a community assessment conducted with family caregivers, healthcare professionals, and community professionals who support families living with dementia.¹⁸ Next steps resulting from this community assessment included the development of a skills workshop for family caregivers. The content for the workshop was guided by feedback from family caregivers during the community assessment (unpublished data) as well as information from caregivers reported in the original Home Alone Report, a seminal report on the topic prepared by AARP.⁴ Consideration was given to the complex care tasks that caregivers reported performing most frequently and/or the tasks that they reported as difficult.⁴ These tasks include managing medications, transfers and home safety, nutrition, oral hygiene and swallowing, and managing incontinence. Caregivers also described the increased complexity of care provision related to communication and behavioral challenges. To develop the workshop and address these complex care topics, we assembled an interprofessional team that included nursing, occupational therapy, speech-language pathology, nutrition, and dental hygiene, selected because of their expertise in these specific areas. Although all members of the interprofessional team had experience working with family caregivers, they had not previously worked in a team to develop and deliver an educational workshop to family caregivers.

The workshop was developed based upon principles of adult education¹⁹ and self-efficacy theory with an emphasis on modelling as a mechanism for building caregiver confidence.²⁰ The workshop was designed to build caregivers’ self-efficacy, defined in the context of caregiving as caregivers’ confidence in their ability to manage behaviors, medical issues, ADLs, and other care-related tasks.²¹ To support coherence and consistency across the different modules, the team met regularly to develop objectives and content. The 5-hour in-person workshop was offered monthly, utilizing a simulation learning center within a school of nursing. Although there were differences in the emphasis of certain content based on the needs of the participating caregivers, following the specific objectives for each session supported the validity and replicability of the workshop. While most participants were family caregivers of persons living with dementia, nursing assistants, and health professions students also participated in the workshops.

Purpose

The purpose of this study was to evaluate family caregiver acceptability of and satisfaction with the Skills Workshop. Further, we sought to gain an understanding of how the workshop may help to build caregiver confidence for complex care tasks, consistent with the self-efficacy theory that guided the workshop design.

Methods

Study Design

We used a descriptive study design to evaluate the Skills Workshop. Caregivers completed a survey after attending the workshop that included questions to capture satisfaction and acceptability as well as open-ended questions about their participation in the workshop. We also conducted semi-structured interviews with family caregivers who participated in the workshop to explore their experiences around participation and how the workshop may have impacted their confidence around complex care tasks. A second purpose of the semi-structured interviews was to hear from caregivers their perspectives on a virtual delivery format of the workshop, given the need for physical distancing related to COVID-19.

The project was submitted to the Institutional Review Board (IRB) (HSC20200432E) and provided with approval prior to study initiation. The requirement for written consent was waived by the IRB but all participants were provided with verbal and written information about the project and verbal consent was obtained for interviews.

Participants and Procedures

Caregivers who participated in the skills workshop were asked to complete a post-workshop survey evaluation that collected information on their satisfaction, quality of the workshop, and open-ended comments on what they leaned as well as future recommendations, including a possible transition to an online delivery format (Supplemental Table S1). Participants could complete either paper surveys at the end of the training, or complete an online survey sent by email.

We sent a one-time email to 30 caregivers who attended the workshop in the previous 8 months to participate in a semi-structured interview and of those who responded, 6 caregivers consented to participate and 1 caregiver declined due to her schedule. After caregivers had the opportunity to review the information sheet and all questions were addressed, an interview was scheduled through the online platform Zoom or by telephone. Consent was obtained from each participant to record the interview. Interviews ranged from 30 to 40 minutes.

A semi-structured interview guide was drafted, discussed, and revised by the members of the project team, all with expertise in family caregiving (Supplemental Table S1). The interview guide was designed to elicit information from caregivers about their participation in the workshop and their satisfaction with the content and delivery. We also queried caregivers about their confidence around complex care tasks since participation. We also asked caregivers about their perspectives in providing the delivery of the workshop virtually. Interviews were conducted by a student research assistant not previously involved in the Skills Workshop.

Data Analysis

Data from three sources were used to provide a summative evaluation of the workshop: 1) the post-workshop satisfaction survey, 2) the post-workshop open-ended questions, and 3) the semi-structured interviews. The quantitative post-workshop satisfaction data were summarized using frequencies and percentages. The information from the open-ended post-evaluation questions was reviewed by two team members and summarized according to categories of what caregivers had learned and suggestions for future content. This information was used to ensure that the content was addressing areas important to family caregivers. The semi-structured interviews were audio-recorded and two members of the project team listened independently to the recordings and took detailed notes. From these notes, content analysis was used, examining how the responses to the questions from the interview guide were similar or differed among participants, using a constant comparative approach. From this, categories and themes were identified.

Results

Post-Workshop Evaluation

There were 171 family caregivers who attended the workshop between January 2018 and February 2020 (Table 1). The mean age of family caregivers was 59 years, they were predominantly female (83%), and the majority were either non-Hispanic white (45%) or Hispanic ethnicity (42%). Of the family caregivers, 50% were caring for a parent and 25% were caring for their spouse. There were 94 caregivers (55%) who completed the post-workshop evaluation. Among this group, 80% rated the content of the workshop as excellent, 83% reported they were very satisfied with the workshop, 79% strongly agreed that the workshop provided them with relevant information, and 86% strongly agreed that they would recommend this workshop to others.

Table 1.

Family Caregiver Participants in Skills Workshop

Characteristic	Frequency (%); Mean (SD)
Age (n=171)	58.5 (13.5)
Female (n=171)	83%
Race/Ethnicity (n=152)
White non-Hispanic	45%
Hispanic	42%
Black	4%
Other/ Asian/ Native	8%
Kin Relationship (n=142)
Spouse	25%
Parent	50%
Other	25%
Content of Workshop (n=91)
Excellent	80%
Very Good	13%
Good	7%
Fair	0%
Poor	0%
Satisfaction (n=91)
Very satisfied	85%
Satisfied	13%
Neutral	0%
Dissatisfied	0%
Very dissatisfied	2%
Event provided relevant information (n=91)
Strongly agree	79%
Agree	20%
Undecided	0%
Disagree	1%
Strongly Disagree	0%
I would recommend workshop to other caregivers (n=91)
Strongly Agree	86%
Agree	12%
Undecided	0%
Disagree	2%
Strongly Disagree	0%

Caregivers were asked to identify one topic that they had not previously known that would support them in their caregiving role. The most frequently reported topics were communication techniques (25%), learning how to perform transfers and the use of durable medical equipment for helping with transfers (25%), and medication management (17%). Other topics identified by caregivers included nutrition and swallowing, oral care, bowel and bladder management, and information about community resources and where to purchase supplies, which was information that was included in several of the modules.

Post-Workshop Open-Ended Comments

Two main themes were identified from the comments that were part of the post-workshop survey. The first theme related to participating in the workshop with other caregivers and being able to use this as a measure of how they were doing, “I came away knowing that I’m not alone, and somewhat thankful for how well my mom is doing, comparatively speaking”. Caregivers commented on learning from other caregivers, “hearing others’ experiences and how they handled a situation”, and the time that was provided to socialize with other caregivers was very helpful, “so that we can compare experiences”. Secondly, caregivers commented on the opportunity to learn the different topics for caregiving from the health care team in one workshop, “learning from each member of the team was so effective. Usually you have to go different places for all this information but it was all together here”. This quote emphasizes the importance of the interprofessional team approach to the education, “I greatly appreciate all the teams presenting, they each and all have a heart to share excellent knowledge with caregivers like me caring for family members without any training”.

Semi-Structured Interviews

The demographic characteristics of the six caregivers who participated in the semi-structured interviews can be seen in Table 2. From the content of the semi-structured interviews, three themes were identified: i) building understanding; ii) mastering new skills; and iii) learning skills together.

Table 2.

Characteristics of Caregivers Participating in Semi-structured Interviews

Caregiver	Gender	Age	Race/Ethnicity	Relationship to Care Recipient	Time Caregiving	Prior Caregiving Experience
1	Female	61	White	Adult Child	2.5 years	No
2	Female	55	Hispanic	Adult Child	2 years	No
3	Female	62	White	Spouse	3 years	No
4	Female	72	White	Spouse	9 years	No
5	Female	67	Hispanic	Adult Child	2 years	No
6	Male	64	White	Spouse	4 years	No

Building Understanding

Caregivers described how the content from the different modules presented by the interprofessional team not only helped them learn to perform complex skills such as transfers and managing medications, but the information also helped them to understand the ‘why’ behind the ‘how’ and this was important to them. For example, Caregiver 6 stated “the information on communication emphasized for me what my wife is going through, that it really is a ‘brain issue’. I now understand that I am the one who needs to change my communication style to engage my wife in communication”. Family caregivers described how the skills they had learned at the workshop came back to them in many different situations since participating in the workshop. “It gave me the ability to understand when I’m confronted in the situation at that moment, I’m like, oh yeah, I remember they said do this, this might work or try this technique” (Caregiver 1). One caregiver described this as an ‘aha moment’ where she didn’t appreciate certain content until she was faced with it in her role. “Just that they had gone over all of these things at the workshop, I started to have these “Aha! moments” and it started to light up and I started to understand” (Caregiver 2).

Mastering New Skills

Caregivers described increased confidence in providing ‘hands-on care’ after attending the Skills Workshop. They commented on the involvement of expert faculty, who brought knowledge and experience to the sessions in presenting their content and answering questions. Their expertise was valued by the caregivers and, according to interviewees, important to their confidence. Caregivers reflected on the skills they learned and how these techniques enhanced their abilities to perform complex care tasks that they were currently struggling with by, “learning from the experts” (Caregiver 6). They also discussed how the program helped them to anticipate skills they would need in the future. “It definitely built my confidence up, you know I keep going back to the part where, even though I’m not doing that right now, but when they taught us how to get them out of bed with the gait belt, even though I’m not there yet, it is going to be very valuable when it does” (Caregiver 3). Caregivers specifically highlighted challenges around medication management and some of the difficulties they have experienced and the clear instruction that they received that has built their confidence. “I remember the nurse talking about the medications and the tips that have helped me so much such as taking pictures of the medications, how to read the labels, and how to list the medications” (Caregiver 2). Another caregiver described how she was having issues around medications for her husband and the nurse recommended to open the pill box for her husband and to take their pills together. “I feel like I really have been able to manage his medications better since taking this class” (Caregiver 4).

Learning Skills Together

As with the post-workshop survey evaluation, all caregivers participating in the semi-structured interviews similarly described the importance of learning from other participants. “I preferred a group setting. Some of the questions brought forward were things I hadn’t even thought about and this was very helpful” (Caregiver 6). One caregiver stated that hearing about the struggles of other caregivers in the care they were providing was helpful, and allowed her recognize that “she was not the only one and the support from other caregivers was so helpful” (Caregiver 3). Similarly, Caregiver 2 described the importance of learning from other caregivers, “having some things to realize when it happens, that I'm not the only one that’s ever been there...And that somebody else has already been through it, it gives you another source of knowledge because they sometimes think is something you hadn’t thought and vice versa so that you can help each other out.”

Transition to an Online Format

We also asked specific questions to identify caregiver perspectives on whether this workshop could be transitioned to a virtual event, given the need for physical distancing with the COVID-19 pandemic and what resources and tools would support a virtual format. As we conducted the interviews in summer 2020, caregivers were becoming more familiar with using technology for accessing healthcare and caregiver support. Caregivers felt that it was possible to transition the in-person event to a virtual workshop and still provide caregivers with interactive training to support learning complex care tasks. As stated by Caregiver 3, “I prefer meeting in person and meeting the team was so important and the support from the team. I am not sure but hope this could continue if we met online.” Caregivers felt that an online session would make it easier for scheduling and for their attendance. Caregivers were asked about resources and tools that could be used to make the program more engaging and interactive in a virtual setting. The use of videos was frequently discussed. “Videos to see the visual of how to do it, don’t tell me to put a belt on him. I want to see where the belt goes or how to put the belt on him. Don’t just tell me show me” (Caregiver 4). “When you do videos of transfers or how to put a gait belt, the closer you can be with the camera to show the grip that would be better. If you have a close up just showing the hand on the gait belt and the gait belt around the waist then that makes it more meaningful” (Caregiver 1).

Discussion

Health professions faculty from nursing, dental hygiene, nutrition, speech language pathology, and occupational therapy collaborated to develop the Skills Workshop to teach family caregivers how to carry-out complex care tasks. The results of this descriptive study support the acceptability and satisfaction among family caregivers who participated in the workshop. While there are a number of reports of interprofessional education programs to support student learning about dementia care,^6,22 there are few studies that report on interprofessional team collaboration to provide family caregiver education and the impact of the education on family caregivers.²³ Jackson and colleagues highlight the need for research that reports on the effects of interprofessional education on persons diagnosed with dementia and their family caregivers.⁶ While we did not measure the impact of the education on persons living with dementia, we did gain insight into how this workshop may contribute to building caregiver confidence from the caregiver interviews. There is a need for ongoing research that can establish the impact of a collaborative model of education on patient and family caregiver outcomes. Through regular team meetings to plan and deliver the workshop, there were opportunities to closely collaborate in our different roles of supporting family caregivers. Building an understanding of the roles of other professions along with a supportive infrastructure, as was created here, has been found to be important to interprofessional collaboration.²⁴

This evaluation will guide the interprofessional team in adapting the current workshop so that we are able to continue to support family caregiver’s education and information needs in light of the COVID-19 pandemic. The results from two systematic reviews show a positive impact of online caregiver interventions, particularly when they are tailored to caregiver needs and multi-dimensional.^25,26 Although several caregivers reported the importance of in-person events, feedback also indicated that online events would facilitate participation. In-person events may be difficult for family caregivers to attend related to their caregiving responsibilities. Furthermore, their reach is limited to family caregivers within certain geographical areas and are usually not accessible to caregivers in rural areas.^27,28 Upon learning from participants and interdisciplinary faculty about how to refine delivery of this workshop in a virtual environment while maintaining interaction among the team and family caregivers, we are creating video vignettes and case studies that reflect the interprofessional team role with family caregivers. For example, a case study features unmet needs of the person living with dementia that requires a team approach to care with input from occupational therapy, nursing, and speech language pathology.

Limitations

A limitation to the workshop as it was initially delivered in-person was its context, in that it was open to all family caregivers, regardless of the stage of dementia of the person for whom they were caring. While this was important as a first iteration of this workshop as we were responding directly to a community-identified need, this did create challenges for the faculty in presenting their content. While the content was focused on caregivers who were taking on more complex care tasks, there were caregivers who were not at that stage and had questions related to earlier stages which distracted from the focus of the workshop. For example, some caregivers were still trying to come to terms with the diagnosis and understand what this meant for them. There were only 6 caregivers who completed an interview although we sent an email invitation to 30 caregivers. Most caregivers did not respond and there was just one caregiver who declined to participate. It is likely that those caregivers who responded to the email were highly satisfied with the workshop. The satisfaction results were, however, very positive from the majority of caregivers.

Conclusion

The descriptive study reported here addresses a gap in caregiver programs aimed at building confidence to perform complex care tasks.^2,29 Programs that provide practical knowledge and skill building are more likely to be effective than programs focused on emotional support only³⁰ and are desired by family caregivers.²⁷ Bringing the expertise of the interprofessional team can provide knowledge based on both theory and experience for the family caregiver, thus increasing their confidence in caring for their family member living with dementia. The results do provide initial encouraging findings to warrant further testing of the intervention on caregiver self-efficacy using more rigorous methodology.