Be EPIC Publications

The following are articles about Be EPIC and/or the evidence used to create Be EPIC.

Savundranayagam, M.Y., Basque, S. R., & Johnson, K. (2020). Feasibility of Be EPIC: A dementia-focused person-centered communication intervention for home care workers. Clinical Gerontologist, 43(2): 181-192. 

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This research study looked at what happens if home care workers have formal training for talking to persons living with dementia. Dementia is a disease that can cause changes to a person’s thinking, memory, and actions over time. Be EPIC is a training program for personal support workers (PSW). It teaches skills to talk in a person-centered way. Being person-centered means thinking about a client’s previous life story, their surroundings, and their wishes. The training helps PSWs to create meaningful relationships with clients. Be EPIC training begins with the trainer showing how to work with a client. The PSWs then practice with a pretend client. The group then reflects about how the training went. PSWs had interviews and small group meetings after 15 hours of training. The research study supported using Be EPIC training with PSWs. The training was helpful for all home care workers. The training helped even if they had experience working with persons living with dementia. The training made them feel more confident. It also made them more effective working with persons living with dementia. It is important to reduce barriers like employers and the government. These groups do not focus on training for PSWs for persons living with dementia. 

 

Savundranayagam, M. Y. & Lee, C. (2017). Roles of communication problems and communication strategies on resident-related job satisfaction. American Journal of Alzheimer’s Disease and Other Disorders. 32(2): 116-122. 

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This research studied persons living with dementia and their staff. The study looked to see how staff talked to persons living with dementia and if it affected their job. Dementia is a disease that can cause changes to a person’s thinking, memory, and actions over time. Staff help long-term care home residents with basic tasks like getting dressed. The study included 109 staff from an American city. The staff completed a survey about working with residents. The questions included if they had trouble talking with these residents, how they tried to fix these troubles and if they were happy with their job. If staff had trouble talking with residents, they were more likely to be unhappy and see their job as hard. People who asked the resident more questions if they were having trouble were more likely to see their job as enjoyable. They also felt helpful. If people did their job without asking the resident what they wanted, they were more likely to feel like the residents were demanding. The staff also felt more in control. If staff tuned out the resident’s wishes, they were less likely to feel like they were making a difference. It is important to include persons living with dementia in the process of caregiving as it enhances relationships.

  

Savundranayagam, M. Y., Sibalija, J., & Scotchmer, E. (2016). Resident reactions to person-centered communication by long-term care staff. American Journal of Alzheimer’s Disease and Other Dementias, 31(6) 530-53. 

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This research study looked at the use of person-centered care by long-term care home staff. Person-centered care includes looking at a person’s life history, likes and dislikes, and current skills. The long-term care home staff were working with residents living with dementia. Dementia is a disease that can result in memory loss or lesser thinking skills. The purpose of the study was to see how long-term care home residents reacted when staff used person-centered care strategies. 46 conversations between staff and residents with dementia were taped over 12 weeks. The study took place in a big American city. The results showed that the more staff used person-centered care, the more likely to resident was to react well to the care. The relationship between the resident and staff was also better. The more a staff did not use person-centered care, the more likely the resident would react badly to the care. This would also harm the relationship between the resident and staff. It also made the staff feel overworked and less confident. It is important that staff monitor to see if they are working using a person-centered approach. This will have the best results for both staff and residents.

 

Savundranayagam, M. Y., & Moore-Nielson, K. (2015). Language-based communication strategies that support person-centered communication. International Psychogeriatrics, 27(10), 1707-1718. 

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Talking to persons living with dementia can be hard. Person-centered care can be used to make it easier. This is when people think about the life history, values, and wishes of a person they are with. A language-based style can also be used when talking. This is when people do things like ask questions or wait until the other person finishes talking. This research looked at when these two ways to talk overlapped when caring for persons living with dementia. The staff in the study worked in a big city American nursing home. Staff were recorded while they helped residents with everyday tasks. Forty-six conversations were taped. The results showed nursing home staff used the two ways to talk when working with residents living with dementia. Sometimes the two strategies they used overlapped. Sometimes they did not mean to use the approaches. Staff should think about using both ways to talk to persons living with dementia at the same time. They should think about changing their words to include more person-centered care as it is better for the residents.

 

Savundranayagam, M. Y. (2014). Missed opportunities for person-centered communication: Implications for staff-resident interactions in long-term care. International Psychogeriatrics, 26(4), 645-655. 

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This study aims to find out how much of the speech between staff members and residents was person-centered. This study looks at the chances that staff members missed to speak in a person-centered way. Staff in long-term care homes may be more focused on doing tasks rather than getting to know the resident. A person-centered way of caring for others should be used more in caregiving practices. This strategy looks at a person’s life history, values, and desires.  Looking at the person rather than only the disease would help that person’s identity and needs. Speech between staff and residents in a nursing home were recorded during routine care tasks. These were used to hear any missed chances of person-centered speech. Many workers have not been trained in person-centered care. This study can offer ideas on when and how to use person-centered care during care tasks. Most of the missed chances for person-centered speech took place right after person-centered care. Staff may be more likely to keep positive dialogue once they train in person-centered care. Over a third of the data showed the use of person-centered dialogue. This shows that it is possible to consider the person during routine care tasks. 

 

Savundranayagam, M. Y., & Orange, J. B. (2014). Matched and mismatched appraisals of the effectiveness of communication strategies by family caregivers. International Journal of Language and Communication Disorders, 49(1): 49-59. 

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This study aims to see if the methods that are used to fix communication problems are helpful. This study looks at the caregivers’ ratings of how communication strategies worked for them. These ratings are compared to evidence of what is known to work. Caregivers may use poor strategies that they think are helpful. They could avoid helpful strategies because they do not think it works. Using poor strategies may lead to more problems or burden in the future. Talks between caregivers and persons with Alzheimer’s disease were recorded on video. These videos were used to find out if there were problems in dialogue. If so, the strategies used to try and fix these issues were looked at. Caregivers filled out a survey to rate how useful they found their strategies. Based on past evidence, actual helpful and poor methods in the video were found. These strategies were compared to ratings that the caregivers gave. These ratings were also compared to strategies in other research findings if they were not used in the video. There were differences in how well the strategies were thought to work versus evidence of what works. This shows the need for training in how to use communication methods.

 

Savundranayagam, M. Y. (2014). Receiving while giving: The differential roles of Receiving help and satisfaction with help on caregiver rewards among spouses and adult-children. International Journal of Geriatric Psychiatry, 29(1), 41-48. 

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Caregiving for family members living with dementia can be hard. Training programs can help. These programs teach caregivers to ask for more help. The programs can also help caregivers to feel better about helping their family. This study looked at adult-child and spouse caregivers. The caregivers went to a program called “Powerful Tools for Caregiving”. There were 462 caregivers who went. They went to 6 sessions. Each session was 2.5 hours. They answered a survey before and after going to the full program. The study showed that more help and quality of that help made adult-child caregivers cope better. Spouse caregivers cope better when they are happier with the help that is already being provided. Adult-child caregivers needed more help with care. Spouse caregivers often needed more moral support than extra help. Caregivers should reflect on the support given to them. Caregivers should be checked on often to see if supports they are using need to change. More help can be offered to caregivers in many ways, like through training. Instead of support being changed right away, caregivers might need to reframe their feelings towards what is being offered.

 

Savundranayagam, M. Y., Montgomery, R. J. V., & Kosloski, K. (2011). A dimensional analysis of caregiver burden among spouses and adult-children. The Gerontologist, 51(3), 321-331. doi: 10.1093/geront/gnq102 

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Caregiver burden is the stress that caregivers feel from their role. Caregiver burden includes stress, relationship, and objective burden. Stress burden is when caregivers feel anxious from their role. Relationship burden can result when family take on their new role as caregivers. Objective burden is the stress they feel from taking time away from their own tasks to provide care. This research studied if adult-child caregivers feel the same burden as spouse caregivers. It also studied if burden was due to certain tasks. The study looked to see if burden changed caregiver health or plans for a nursing home. American caregivers did a survey by phone, mail, or online. The study shows that burden levels do not change between the caregiver groups. The three types of burden should be looked at by themselves. When looked at alone, programs can target each type of burden. Caregiving can have big effects on health. Workload alone does not cause caregiver stress. Instead, how caregivers feel about their workload can cause problems. Care plans that teach stress relief can help both kinds of caregivers. All caregivers can use skills to reduce outbursts to prevent moving their family to a nursing home. Programs aimed at adult-child caregivers should focus on relationship burden. Spouse benefit from programs focused on self-care. 

 

Savundranayagam, M. Y., & Orange, J. B. (2011). Relationships between appraisals of caregiver communication strategies and burden among spouses and adult-children. International Psychogeriatrics, 23(9), 1470-1478. doi:10.1017/S1041610211000408 

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Alzheimer’s disease is when older adults lose their memory. This happens over time. It can become hard for them to do basic things. For example, they can forget who they are talking to. How caregivers talk to persons with Alzheimer’s disease can affect how well they can provide care. This study looked at how good family caregivers thought they were at talking with persons living with Alzheimer’s disease. Eighty-four persons living with Alzheimer’s disease and their caregivers did a survey. The people were from Canada and the United States. The survey asked about how they talked to persons living with Alzheimer’s disease. It also asked how often persons living with Alzheimer’s did things that made it hard to care for them. Finally, it asked how caregivers felt about giving care. The surveys showed that if caregivers used good ways to talk when working with persons living with Alzheimer’s disease, the caregivers felt less tension. They also saw that the person was asking for fair care. These results should inform future programs for talking strategies for family caregivers to persons living with dementia. Programs should show that some ways to talk are not as good as people think they are. Caregivers’ sometimes use bad ways to talk to persons with Alzheimer’s disease. These mistakes should be shown in training programs.

 

Savundranayagam, M. Y., Montgomery, R. J. V., Kosloski, K., & Little, T. D. (2011). Impact of a psychoeducational program on three types of caregiver burden among spouses. International Journal of Geriatric Psychiatry, 26(4), 388-296. doi:10.1002/gps.2538 

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The aim of this study is to find out if the program helps decrease the burden of spouse caregivers. The poor health effects from caring for others can be seen in spouses and partners. Spouses do more personal care tasks. They do not get as much help as other family caregivers get. The program studied is called Powerful Tools for Caregivers (PTC). It teaches caregivers how to take care of themselves and cope with their emotions by being confident. Caregivers filled out a survey before the first session. They answered a question after the sixth session. Surveys were sent out another six weeks later. This was compared to another group of caregivers who were not in PTC. This compare group had a different survey to fill out. Caregivers had lower levels of stress and objective burden after PTC. There were no differences in relationship burden between the two groups. There was an increase in confidence and self-care after PTC. The study shows that these programs can be used to improve stress and objective burdens of caregivers.

 

Savundranayagam, M. Y., & Brintnall-Peterson, M. (2010). Testing self-efficacy as a pathway that supports self care among family caregivers in a psychoeducational intervention. Journal of Family Social Work, 13(2), 149-162. 

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The aim of this study is to see if this program affects the health risk and self-care of family caregivers for those with Alzheimer’s disease (AD). This study looks at how confidence can improve health risks and self-care practices. Caregivers who care for persons with AD have more anxiety, stress, and depression than other caregivers. Negative health impacts of caregiving have been linked to decreased self-care and higher risks in health. These include a poor diet, poor exercise, and not getting enough sleep. Powerful Tools for Caregiving (PTC) is a program that teaches caregivers how to take care of themselves. PTC teaches how to deal with emotions and care for themselves through confidence. This program says that confidence plays a large role in changes to self-care and health risks. Caregivers took less risks in their health after PTC. They also improved in exercise, ways to manage stress, and ways to relax. There was an increase in confidence after PTC. The study shows that family caregivers’ needs have not been met while caring for persons with AD. They need more support so they can keep their roles without risking their health.

   

Savundranayagam, M. Y., & Montgomery, R. J. V. (2010). Impact of role discrepancies on caregiver burden among spouses. Research on Aging, 32(2), 175-199. 

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The aim of this study is to find out if a shift in roles will affect the link between their partner’s stressors and their burden as spouses. Caregiving can cause poor outcomes that could lead to many types of burden. How a spouse and partner see each other will change as one’s disease gets worse. Their partner’s care needs may increase over time. These needs will shift the family connection into a caregiving one. Due to the large contrast between roles as a spouse and caregiver, burden can occur from these sudden changes. Questions were asked about the status of the person receiving care and how they act. Caregivers were also asked about their roles and any burden they had. The differences in roles could predict all areas of burden. Caregivers who have gone beyond their expected roles have more burden. Partners behaving in a responsive way had strongly predicted all types of burden. Helping with basic care tasks caused higher levels of objective burden. Knowing how stressors, role changes, and burden all impact each other can help provide support to caregivers. 

 

Savundranayagam, M. Y., Ryan, E. B., Anas, A., & Orange, J. B. (2007). Communication and dementia: Staff perceptions of conversational strategies. Clinical Gerontologist, 31(2), 47 - 63. 

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The aim of this study is to see how these two communication strategies have an impact on persons with dementia. The first strategy uses a personhood approach to look at a person’s history, values, and wants. This helps staff cater to each person’s needs. In the second strategy, caregivers use simple language and repeats what was being said. Assuming how to speak to residents based on their age is not useful. These include talking in a high pitch or not listening to the speaker. This can affect their self-esteem and assumes that the care needs of everyone are the same. Staff and residents were given a book with two dialogues between a worker and resident. In one of the dialogues, a personhood approach to care was shown. For each of the dialogues, they compared the two staff members and the two residents. They were both rated on certain factors. Staff and residents had better ratings when they used personhood strategies in the script. Using simple language shows the staff as less controlling and residents as more skilled. These strategies can improve the connections that staff and residents make with each other.

   

Savundranayagam, M. Y., Hummert, M. L., & Montgomery, R. J. V. (2005). Investigating the effects of communication problems on caregiver burden. Journal of Gerontology: Social Sciences, 60B (1), S48-S55. 

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This study aims to find out how communication problems in dementia link to caregiver burden. This study looks at how people act in a responsive way when a disease gets worse. A caregiver can feel burden when their emotions and resources decline because of their role. As dementia gets worse, one may lose their ability to converse. They may not understand what words mean or cannot come up with words to express their thoughts. This means there may be more breakdowns in speech between caregivers and the person of care. When people have trouble talking, they may act in a responsive way – such as being aggressive. Caregivers were asked about the communication issues they have had with the person they are caring for. They were asked about the function, mental process, and acts of this person. They were also asked to report on the types of burden they faced themselves. A person’s decrease in mental process and function can predict that they will act in a more responsive way to cope with their struggles talking. This can lead to more burden being felt by the caregiver. As a disease gets worse, there is a clear link between communication struggles, responsive acts, and caregiver burden.