Care assistants working in Alzheimer's care facilities often face the dilemma of being dishonest with family members about their loved one''s condition versus being truthful but disheartening.
This new study is to be published online Nov. 13th in the National Communication Association''s Journal of Applied Communication Research
Professional caregivers who participated in the interview-based study reported feeling unprepared in communicating information to patients'' families that might be hard for them to hear, said the study author, Anne Stone, Ph.D., an assistant professor in the communication department at Rollins College, Winter Park, Fla.
"This result suggests that nurses and care assistants working with Alzheimer''s patients and their families face unique communication challenges in managing families'' uncertainty that are not adequately addressed in the training they receive," Stone said.
Those who have a family member with Alzheimer''s disease often face uncertainty about the disease yet do not have the same hope for recovery that people with other diseases may have, she explained. To learn which types of social support nursing staff perceived most helpful to families, Stone interviewed 32 nursing care providers at eight Alzheimer''s residential care facilities across the U.S. She asked study subjects open-ended questions about their communications with residents'' families, including dilemmas they had in communicating informational and emotional support, as well as their strategies for managing these challenges.
Of the 29 women and three men who participated in the study, 15 were registered nurses,
13 were care assistants or nurse aides and four were licensed practical nurses. On average, they reported working in the nursing profession for 15 years and in Alzheimer''s care for
13 years. Participants worked at skilled nursing and/or assisted living facilities in four states.
Nurses and care assistants realized that the words they used with families were important in communicating key information. Yet participants described times when they confronted the choice of either honestly depicting a discouraging situation or framing information in a way that reassured the family that their loved one had quality of life at the long-term care facility.
"At least one participant reported sometimes lying to the family about a resident''s condition," Stone said. "This care provider believed that hearing positive news cheered up the family and gave them hope."
Other participants described giving the family truthful but selectively positive information about the resident, such as saying he or she had enjoyed the sunshine that day, Stone wrote in her study. Some others communicated the truth in a reassuring way, such as, "No, they probably won''t remember you were here today. But the visit is for you. While you are here, it is helpful and healing."
A second communication dilemma that nurses and care assistants reported experiencing was what to say to relatives who did not have power of attorney but believed they deserved information about a resident''s condition despite health information privacy laws. In addition, many participants suggested that family members wanted advice from them, while the professionals thought their appropriate role was to offer the family various care options.
Study participants reported several communication strategies that helped them negate some of the challenges experienced by both nurses and family members:
-Develop a common set of expectations regarding care among families and nursing staff.
-Make caregiving more visible. For instance, a nurse might tell family members what care the person with Alzheimer''s disease received since their last visit, or a care assistant might wait until family caregivers are present to perform some care tasks, such as trimming a resident''s fingernails.
-Emphasize to the family the positive aspects of interaction with their loved one.
Based on participants'' reports, the training they received did not provide guidelines concerning how to deal with the emotional strain of communicating bad or difficult news.
"I think that discussing the experience of family uncertainty, and how to manage it, in training would help nursing staff," Stone suggested.
The article, "Dilemmas of Communicating about Alzheimer''s Disease: Professional Caregivers, Social Support, and Illness Uncertainty," appears online on Tuesday, November 13, 2012 in the Journal of Applied Communication Research