Communicating About Alzheimer’s Disease
Alzheimer’s disease by its very nature makes communication difficult. For patients, never knowing what you will remember, or not knowing what you don’t remember, is frustrating. We don’t often think about how the disease impacts caregivers, though, whether they are family members, doctors, or nurses. Since a diagnosis of probable Alzheimer’s disease often results in the decision to seek care from an assisted living or nursing care facility, and because estimates suggest that 106 million people will have the disease by 2050, knowing how professionals in the health care industry interact with patients and their families is essential. Making these interactions less stressful will likely improve quality of care and will help retain professionals who might otherwise become overwhelmed or suffer from burnout.
One important aspect of this illness from a communicative perspective is how the person with Alzheimer’s disease, his or her family members, and health care professionals manage uncertainty associated with diagnosis and treatment. In this study, I examined the role of social support in managing uncertainty, particularly how the perspective of health care providers is useful to understand and ease family members’ experiences.
I interviewed 32 nursing professionals who worked with Alzheimer’s patients and their families in a nursing care facility, and asked them to tell me about their communication with patients and their families, including what topics they typically discussed and what dilemmas they faced as a result. They revealed several important findings regarding communication in the context of Alzheimer’s disease. While nurses felt that providing detailed information (e.g., what a family member could reasonably expect) was essential to a positive relationship, they were often faced with dilemmas such as how much information to reveal and how honest to be about that information if it could potentially cause stress for the family. Participants described strategies they developed over time specific to the challenges of Alzheimer’s disease that seemed to be extremely valuable both for them and for the families they counseled.
In fact, nurses and care assistants noted that supporting family members through information was the most common and most important form of social support they could provide. In particular, nurses and care assistants recalled the importance of educating the family about the disease process, not only through educational material like pamphlets or the websites created by the Alzheimer’s association, but also often through the use of metaphors and analogies, like neurons misfiring being like “strings in their brain but there is a sharp object rolling around in there which is the disease which is cutting the strings.”
Nursing professionals worked to define expectations of caregiving in the care facility, since communicating about what a family might expect may mitigate some of the challenges they commonly experienced. Materials provided by the facility could also describe institutional polices behind communicating information to persons with power of attorney, rather than other family members, when a loved one enters a facility. This positively impacts interactions through more open communication. This type of material might also highlight the role that nursing staff play, as a resource to help family members make informed decisions rather than as someone who will actually make decisions for the family. Describing treatment plans and teaching the family how to interact with residents in the care facility was also an important aspect of managing uncertainty, as was communicating emotional support.
Nurses and care assistants reported, however, that they experienced a few dilemmas in providing support to patients and family members, where they became uncertain about what was right to say, what was best to say, and what would do the most good or cause the least harm. Nurses and care assistants described dilemmas related to providing information versus maintaining institutional policy, providing options versus telling the family what to do, and communicating reassuring information versus information that might be perceived as discouraging. These dilemmas characterized many of the interactions the nurses and care assistants had with family members in the care facility; in some cases even more than the strategies of support themselves.
Those strategies were essential, however, to the management of their own identities and well-being. One strategy was to emphasize the positive aspects of interactions when communicating informational support, like focusing on specific positive activities rather than bringing attention to an issue like aggression that the health professionals believed they could not change. Nurses and care assistants also reported that communicating about the care and treatment of the person with Alzheimer’s disease and the ways in which that care would be given helped to manage the families’ uncertainty and worked to minimize stress for both families and nursing staff.
Interestingly, participants suggested that family members need to be prepared to take time for themselves to be able to provide care for their loved one. Discussion boards for an online support group, for example, may post questions about what family members commonly experience to give social network members an opportunity to vent frustrations in a controlled forum. Having a knowledgeable facilitator, likely an Alzheimer’s care nurse, who can comment on and explain reasons for policies that limit information sharing, may minimize some of the frustration nurses and care assistants are faced with when communicating with familial caregivers.
Communication between nursing staff and family members is clearly an important part of the experience of Alzheimer’s disease. Considering the ways that particular messages shape relationships in this context is particularly important considering high rates of burnout for both familial and professional caregivers. Families and professional caregivers deserve educational support to improve the overall communication of and experience of Alzheimer’s disease.