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Communication about Alzheimer’s proves challenging

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Nurses and care assistants working in Alzheimer’s care facilities often face a choice between being dishonest with family members about their loved one’s condition and being truthful but disheartening, according to a study.

Professional caregivers who participated in the interview-based study reported feeling unprepared to communicate information to patients’ families that might be hard for them to hear, said study author, Anne Stone, PhD, an assistant professor in the communications department at Rollins College in 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 in a news release.

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 and strategies for managing these challenges.

Of the 29 women and three men who participated in the study, 15 were RNs, 13 were care assistants or nurse aides and four were LPNs. 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 about their loved one’s 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 reported Nov. 13 on the website of the Journal of Applied Communication Research, a publication of the National Communication Association.

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 the family uncertainty, and how to manage it, in training would help nursing staff,” Stone said.

The article, “Dilemmas of Communicating about Alzheimer’s Disease: Professional Caregivers, Social Support, and Illness Uncertainty,” is available at www.tandfonline.com/doi/full/10.1080/00909882.2012.738426.

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