Comfort First: Development and pilot testing of a web-based video training to disseminate Comfort Matters dementia care

Abstract

Background:

Alzheimer’s disease-related dementias (ADRD) are a leading cause of disability and death. In late-stage ADRD most people prioritize comfort, but care to achieve comfort is rare. Comfort Matters combines palliative and geriatric care practices for nursing home dementia care, but in-person training reaches few sites. To facilitate dissemination, we developed Comfort First, a web-based training toolkit with video demonstration of Comfort Matters practices.

Methods:

We developed and pilot-tested Comfort First (NIA Intervention Stage 1). Stakeholder advisors representing nursing home residents, caregiver, and clinical perspectives guided development. Professional videographers filmed Comfort Matters staff to illustrate comfort-focused dementia care skills. Video training modules, supported by an implementation manual, address Understanding the Person with Dementia, Promoting Quality of Life and Comfort, Working as a Team, Responding When People with Dementia are Distressed, Addressing Pain, and Making Comfort First a Reality. We then delivered Comfort First to 3 nursing homes. Implementation and outcome evaluation assessed the number and clinically diverse roles of trained staff and post-test knowledge.

Results:

Nursing home staff roles (n = 146) were diverse: certified nursing assistants (40%), nurses (19%), administrators (11%), activities staff (6%), therapy staff (5%) and other roles. Individual participants’ knowledge scores ranged from 50–100%; however average post-test knowledge scores were high, ranging from 90% (Addressing Pain) to 99% (Promoting Quality of Life and Comfort, Making Comfort First a Reality).

Conclusions:

The Comfort First web-based training toolkit combines best practices in palliative care and geriatric care for ADRD, using video demonstrations to support broader dissemination of these skills. Initial evaluation demonstrates acceptability and knowledge uptake for staff in diverse clinical roles; future research should include evaluation of practice change. Consistent with the intent of its public funding, Comfort First will be widely disseminated at a minimal cost.

INTRODUCTION

Alzheimer’s disease and Alzheimer’s disease-related dementias (ADRD) are leading causes of disability and death for older adults. In the US, an estimated 6.5 million people live with ADRD and over 1 million have late-stage disease.^1,2 Nursing home care is common for people with ADRD; nearly two-thirds of nursing home residents have a condition causing persistent cognitive impairment.³ As people move into later stage disease, the physical consequences of the disease, and related medical complications, cause distressing symptoms such as pain, shortness of breath, and expressions of neuropsychiatric distress.^4–8 As a result, people with ADRD have high rates of emergency room visits and hospitalizations, and take psychoactive medications that are harmful or of questionable benefit.^9,10

Two-thirds of family caregivers prioritize comfort in moderate to severe ADRD, yet nursing home care is structured to focus on disease treatment and function.^11,12 Hospice delivers comfort-focused care, but patients’ prognosis must be 6 months or less, and even in advanced stage ADRD, average life expectancy is over 1 year.¹³ As a result, most people with late-stage ADRD cannot access hospice services despite a preference for comfort. Thus, for people with ADRD in nursing homes, most comfort-focused care must be provided by nursing home staff and family.

Comfort Matters is an award-winning program of best practices in comfort-focused dementia care.¹⁴ The model, developed at the Beatitudes Nursing Home Campus in Phoenix, Arizona, combines evidence-based practices in palliative care and geriatrics. Nursing home staff in all roles and disciplines receive in-person training in knowledge and skills to support comfort and quality of life for people with ADRD. Comfort Matters improves care, with reductions in antipsychotic and sedative medication use, increased use of appropriate pain medication, decreased rates of persistent pain, decreased hospitalizations, and improved staff knowledge and satisfaction.^15–18 Comfort Matters is effective, compassionate care, but in-person training by its leadership team reaches few other sites. We, therefore, aimed to develop and evaluate Comfort First, a more accessible web-based video nursing home training toolkit to facilitate the dissemination of Comfort Matters (Figure 1).

FIGURE 1.

Comfort First video images.

METHODS

Overall study design

We developed and pilot-tested Comfort First using methods consistent with Stage I of the NIA Behavioral Intervention stage model.¹⁹ The web-based training toolkit has six 20-min video modules accompanied by post-test evaluation of knowledge and an implementation guide. Our research team at the University of North Carolina at Chapel Hill (UNC) developed the training toolkit in collaboration with the original developers of Comfort Matters at the Beatitudes Campus and Hospice of the Valley in Phoenix, AZ, and videographers from Horizon Video Productions in Durham, NC. Stakeholder advisors representing resident, family caregiver, and clinical perspectives informed training design. Despite initial delays due to COVID restrictions, we delivered and evaluated the web-based version of Comfort First training at three nursing facilities in North Carolina. Implementation was evaluated by the (a) number and (b) clinically diverse roles of trained staff and (c) post-test knowledge scores. This work was reviewed and determined not to require approval by the UNC Institutional Review Board. All individuals gave prior approval for videography, including proxy approval for people with ADRD who lacked capacity.

Comfort First development

Based on Comfort Matters, UNC investigators scripted six video modules covering evidence-based practices in geriatrics and palliative care for people with ADRD. Stakeholder advisors representing resident, family caregiver, and clinical perspectives, recruited through resident councils in North Carolina nursing facilities, met with investigators during the development phase to prioritize training topics and to revise video module scripts.

Videographers filmed dementia care practices at the Beatitudes, and then provided technical support to create the modules. Videos for Comfort First feature Beatitudes residents and staff, to illustrate comfort-focused dementia care skills. Modules include professional narration, simple onscreen text graphics to reinforce key information, and an onscreen host portrayed by a professional actor. Content for each module is described below:

Module (1) understanding the person with dementia—causes, stages, changes in function and behavior, and core concepts of comfort-focused and palliative care; Module (2) promoting quality of life and comfort—awareness of the whole person, likes and dislikes, use of sensory supports with music, aromas, activities, and calming environment;

Module (3) working as a team in comfort-focused dementia care—diverse staff roles and teamwork in comfort-focused care;

Module (4) responding to promote comfort when people with dementia express distress—common behaviors associated with distress in dementia, what the person with dementia may be feeling or communicating, what caregivers can do to relieve distress;

Module (5) addressing pain for people with dementia—pain assessment and pain rating scales for dementia, non-medication interventions, and safe use of pain medication;

Module (6) making Comfort First a reality in person-directed care plans—communication with families for goals of care and advance care planning, creation of a care plan aligned with the goal of comfort, and role of hospice and palliative care providers.

The web-based training toolkit consists of (a) six video modules, (b) an implementation manual with detailed instructions to implement and sustain the Comfort First program, (c) brief print summaries, and (d) evaluations for each module. Scale-up instructions include strategies to engage administrative and clinical leaders, strategies to deliver training as in-service programs, and recommended audit and feedback procedures for performance improvement.

Implementing and evaluating Comfort First training

Setting and participants

We delivered Comfort First training at three nursing facilities in North Carolina. Nursing home administrative and clinical leaders endorsed the training for anyone who interacts with people with ADRD, inclusive of clinical and nonclinical roles. Each site had a representative tasked with promoting the training. While training was voluntary, strategies to promote participation included (a) delivery of each module twice at each site, (b) training delivered in a group session during paid work time, (c) on-site refreshments, and (d) availability of CEU credits. Training sessions covered 2 or 3 modules. During training sessions and evaluations, a research staff member was available for technical assistance and to encourage completing evaluations. A clinician was available for questions or discussion between modules.

Evaluation

Trainees provided information regarding their role in the nursing home. Each participant completed written brief evaluations as they finished each training session to assess knowledge uptake. The evaluations allowed for those who took the course to gain training credit, as each of the modules was approved for CEU credit by the North Carolina Nurses Association. Implementation and outcome evaluation assessed the (a) number and (b) diverse roles of trained staff and (c) post-test knowledge scores. Data were analyzed to report the average scores, scoring range, and the percentage of trainees who scored 100% on each module.

RESULTS

Participants in Comfort First training included 146 individuals, almost all staff who provide nursing home care for people with ADRD. They most commonly worked as certified nursing assistants (CNAs) (40%) or in nursing roles (19%), including as nurse managers or care coordinators. Other participants in training included administrators (11%), activities staff (6%) therapy staff (5%), and many other roles (Table 1).

TABLE 1:

Comfort First training participant roles

Nursing home staff roles	Training participants N=146 (%)
Certified Nursing Assistant (CNA)	59 (40%)
Nursing (RN, LPN, RN manager)	28 (19%)
Administrative	16 (11%)
Activities (CTRS, RE, LRT, CDP, fitness or library staff)	9 (6%)
Therapy (PT, RD, SLP, OT)	7 (5%)
Medication Technician	6 (4%)
Housekeeping	2 (1%)
Social Work / Case Management (LCSW)	2 (1%)
Other (information technologist, scheduler, security, homecare)	17 (12%)

RN = registered nurse; LPN = licensed practical nurse; RNHC = registered nurse home care; IT = information technology; HR = human resources; CTRS = certified therapeutic recreation specialist; RE = resident enrichment; LRT = licensed recreational therapist; CDP = certified dementia practitioner; PT = physical therapist; RD = registered dietician; SLP = speech language pathologist; OT = occupational therapist; LCSW = licensed clinical social worker.

Nearly 100 individuals completed and evaluated the first four modules; participation in evaluation was somewhat lower for the final modules on pain (n = 69) and on implementation of Comfort First at the organization level (51). Participants’ knowledge scores ranged from 50% to 100%; however average post-test knowledge scores were high, ranging from 90% (Addressing Pain) to 99% (Promoting Quality of Life and Comfort, Making Comfort First a Reality) (Table 2). For 5 of the 6 modules, more than 90% of trainees responded to all items correctly, demonstrating good uptake of training content. The most commonly missed evaluation item addressed pain medication use for patients with dementia, resulting in fewer participants with all items correct for module 5.

Table 2.

Comfort First knowledge scores

Module	Participants reporting	Average score %	Percent with all items correct
1: Understanding the Person with Dementia	94	98%	93%
2: Promoting Quality of Life and Comfort	96	99%	94%
3: Working as a Team to Put Comfort First	96	96%	92%
4: Responding when People with Dementia are Stressed or Distressed	91	96%	92%
5: Addressing Pain for Those with Dementia	69	90%	47%
6: Making Comfort First a Reality	51	99%	98%

DISCUSSION

The Comfort First training toolkit is a new resource to disseminate the innovative combination of palliative and geriatric care skills used in Comfort Matters dementia care. This study provides initial evidence for its acceptability and effectiveness to train a clinically diverse group of nursing home staff. Evaluation scores were somewhat lower for the module addressing pain, but some of the content may be perceived as out of scope of practice for CNAs or for other non-nursing staff. Comfort First uses video demonstration of best practices to promote comfort for people with ADRD, a promising and broadly applicable approach to model interpersonal care skills.

Video demonstrations are an effective nursing home training tool. Bathing Without a Battle and Mouthcare Without a Battle are person-centered programs developed by our team to improve nursing home staff skills during aspects of personal care.^20–22 Research shows that these programs improve staff practice techniques and person-centered outcomes such as dental hygiene, dementia-related distress behaviors, pain, and pneumonia. In addition, video images of resuscitation are associated with more frequent decisions to forego this treatment in advance care planning and may improve equity in informed decision-making for historically underrepresented minority groups.²³

Comfort First, like Comfort Matters, is innovative in linking geriatric principles for dementia care with practices from palliative care and hospice. People with ADRD and their families prioritize comfort for months to years prior to death, but achieving this goal requires approaches that differ significantly from traditional “comfort care.” Specialty palliative care can improve care and outcomes in cancer and other serious illnesses, but these teams are rarely available in nursing homes and lack training to address symptom distress in ADRD.^24,25 Treatment of pain and neuropsychiatric distress require ADRD-specific assessment skills. Interventions must incorporate non-pharmacologic treatments with evidence-based use of analgesic and psychoactive medications for people with ADRD.^26,27 Until the specialty palliative care workforce expands, broader dissemination of this skill set is essential to improve comfort and quality of life for people with ADRD.

Our results showing acceptability and knowledge uptake represent the pilot phase of intervention development, or Stage I of the NIA Behavioral Intervention stage model.¹⁹ This early-stage work was further constrained when COVID-19 limited nursing home and nursing home staff participation and investigator access to sites. Consequently, outcome evaluation was limited to post-testing only, and could not directly assess practices such as the quality of care plans for people with ADRD, or the frequency and accuracy of staff assessment of pain. Future research should include pre-post knowledge testing, adaption of knowledge testing to the scope of practice for different disciplines, and evaluation of care delivery outcomes. Comfort First training is designed to address the challenges of nursing home staff turnover, as web-based low-cost access permits repeated training sessions.

Comfort First is the first web-based video training toolkit demonstrating the innovative blend of palliative and geriatric care skills required to enhance comfort for people with ADRD. The toolkit is designed to enhance the accessibility of training in these best practices. Future use of training modules is adaptable to varying needs, as they may be completed by individuals, or used in group sessions in nursing homes. Consistent with the intent of its public funding, Comfort First will be disseminated at a minimal cost for individuals seeking this training. The training toolkit is accessible for educational credit through the North Carolina Area Health Education Center (AHEC) based in Greensboro, North Carolina. https://www.aheconnect.com/uncgeriatrics/courses.asp. The Greensboro AHEC has great reach, having delivered training to participants in all 50 United States and 26 countries. Training materials are also available from investigators. https://dementiacomfort.org/. The Comfort First training toolkit is thus available to anyone who provides care for people living with dementia.

Key points

• Most people prioritize comfort as the primary goal of care in late-stage dementia, but nursing home staff rarely have the combined skills of palliative and geriatric care necessary to achieve this outcome.

• In collaboration with the award-winning developers of Comfort Matters dementia care, investigators developed Comfort First—a web-based training toolkit with video demonstrations of comfort-focused dementia care.

• Comfort First was widely accepted by nursing home staff in diverse roles, with good knowledge uptake after training.

Why does this paper matter?

The Comfort First training toolkit is a new resource for the broad dissemination of best practices in care to promote comfort for people with late-stage dementia.