Abstract
Case presentation
Maria is a 76-year-old woman of Italian descent. She is the mother of four children, three daughters, and a son. She has moderate to severe dementia of Alzheimer’s type but is otherwise healthy. Maria’s youngest daughter is her caretaker in the daughter’s home. Maria is fully ambulatory and with few exceptions toilets herself. When she is not agitated, she has been manageable in the daughter’s home with close supervision. The daughter fears that further deterioration will make it difficult to keep her mother at home. Recently, Maria started to become agitated especially in the evening around dinner time and when asked to take medications.
Two week ago, Maria was admitted to the inpatient geriatric behavioral health unit for uncontrolled agitation. On admission, Maria fussed about medications, argued with the nurses, and intimidated other patients. Now, her behavior is considerably improved. She is friendly and cooperative with treatment. In addition to adjusting her medications, the nursing staff offered her a realistic baby doll to hold. Holding the doll consistently calms her and has even allowed her to interact pleasantly with other patients. Over the 2 weeks on the unit, she became infatuated with the doll and refused to put it down unless someone agreed to watch it while she was away, acting as if it were her own child. The nurses believe that her improved behavior is related to the doll and encourage her to continue caring for it as a baby. They even play along and ask questions about her baby.
Maria’s daughter acknowledges her improved mood. However, she believes that it is undignified for her mother to be seen acting on the delusion that this doll is her baby. In addition, the daughter points out that her mother often asks for help caring for the baby. These requests have not been a problem on the unit—some patients even enjoy assisting with the doll’s care. However, the daughter fears that this level of attention to the doll’s faux-care will be unsustainable in her household. The daughter has her two school-age children to attend to in addition to Maria’s care. The daughter is Maria’s guardian and durable power of attorney. She has asked that the staff take the baby doll away: Should the staff comply with the daughter’s request? Is Maria’s giving care to a doll as though it were her baby undignified?
Comment 1—Gary Mitchell, Queens University Belfast, Northern Ireland
The use of doll therapy in dementia care is an emerging practice. It is often categorized as a “non-pharmacological” or “creative” approach to alleviating distress and enhancing well-being in dementia care. The scenario the authors present is common; indeed, I have had such experiences that have occurred in my own clinical practice within a care home setting. The benefits of doll therapy that Maria experiences are synonymous with the results of the only published systematic literature reviews on the topic 1,2 as well as the only Italian empirical study. 3 It is worth highlighting these because another common theme which also emerges is the perception that doll therapy is something that actively infantilizes people living with dementia.
To overcome these barriers in practice, it is the duty of the authors to provide education to the care partners of Maria. While there are currently no published empirical studies which investigate how doll therapy works outside a formalized care setting (i.e. at the home), the authors should demonstrate that doll therapy has an emerging evidence-base in dementia care. This evidence-base is rich with accounts of how doll therapy can enhance well-being and alleviate distress among a number people living with dementia globally. In addition, the evidence-base is underpinned with rationale as to why doll therapy works, namely, through fulfillment of attachment needs which are considered as key psychological needs for people living with dementia. 4,5 It is important that the clinical team advocate for Maria who, due to the clinical manifestations of the dementia disease, may not be able to articulate her wishes to remain united with the doll.
The ethical dilemma in this case is that the authors should not remove the doll because this can be to the detriment of Maria who has forged a meaningful bond with the doll. Through Maria’s active engagement with the doll, it can be argued that she is making her own decision to engage with the doll. This decision, a non-complex one, should be respected. It is important to acknowledge that it is not advisable to dismiss the wishes of the family, and so the authors should provide due care to the family who are likely to be unaware of how doll therapy can enhance their mother’s life. There are published guidelines on doll therapy in dementia care which can help, and these should be accessed as they provide practitioners and family members with an overview of the appropriate practices to adopt when utilizing doll therapy. 6 Collaborative partnership is crucial when operationalizing doll therapy in clinical practice and validation, possibly in the form of treating the doll as a live baby because that is how Maria sees it, is important from both healthcare professionals and family members because not validating Maria’s experiences will likely cause distress.
Succinctly, doll therapy is making a positive contribution to the life of Maria. The authors are encouraged to place Maria at the center of their dilemma and to facilitate her personal choice to engage with the doll. 7
Comment 2—Elizabeth Peter, University of Toronto, Canada
This case study presents a scenario that raises important ethical concerns regarding the use of doll therapy for people with dementia, particularly given the lack of consensus regarding the ethics of this therapeutic intervention. 7 As in most case studies, there are no easy answers and responding to it requires moral imagination on our behalf to begin to imagine how the situation will play out over time depending on a cascade of moral decisions that may be made.
As a starting point, however, it is important to recognize that Maria’s well-being, autonomy, and dignity are deeply connected to those around her including the staff and patients and most important, Maria’s daughter and grandchildren. In considering whether the staff should comply with the daughter’s request and whether Maria’s giving care to a doll as though it were her baby is undignified, Maria’s well-being must be first considered. It is clear that there have been meaningful benefits for her because the doll has calmed and resulted in improved relationships with staff and patients. Maria’s care of the doll also can be viewed as an important expression of her remaining autonomy and a necessary activity for her to retain her identity as a mother and a needed caregiver. The nurses’ interaction with Maria that encourages her to believe the doll is a real baby, however, is ethically questionable because it could be considered to be a “therapeutic lie” 7 that could compromise her autonomy further. It could also ultimately result in Maria becoming distressed if the care of the “baby” becomes unsustainable when she goes home.
The doll also has the potential to change the relationships Maria has with her daughter and grandchildren significantly, if they believe that Maria’s attachment to and care of the doll are undignified. Walker 8 has defined dignity relationally as “a standing, that is, a socially and interpersonally effective position comprising values, prerogatives, entitlements, liabilities or responsibilities that others are bound to recognize and in response to which others and the one who possesses dignity act and interact” (p. 174). From this perspective, therefore, it is not so much whether Maria’s care of the doll is inherently undignified, but whether within the relationship between Maria and her family that her dignity can be both expressed and recognized.
No doubt, the staff and Maria’s daughter must carefully plan the next steps in Maria’s care considering Maria’s overall well-being, which includes the expression of her limited autonomy and her relationships with her family. Perhaps, on a trial basis, the doll could be withdrawn gradually in order to assess Maria’s mood, and the nurses could refrain from treating the doll as a baby. Maria’s daughter could also be supported in seeing the dignity in her mother despite her attachment to the doll. It is important to recognize, however, that clinicians are not the only persons who carry significant moral responsibilities in cases such as this one. In the end, Maria’s daughter will need to decide how her mother will be cared for, particularly in her own household, and will require the best support, instrumentally, emotionally, and ethically, that the staff has to offer.
Response from the case study author
We would like to thank the commenters for their thoughtful consideration of our case. The case presents a situation where the patient accrues the benefits of an intervention while the caregiver bears the burden—with the additional consideration of whether the intervention is essentially undignified.
We agree that the first step is to educate Maria’s daughter regarding Alzheimer’s and doll therapy. Her perspective regarding the doll may change after learning about the evidence and its acceptance within the clinical community. A care plan developed in collaboration with the daughter which considers her needs as well as Maria’s is more likely to be perceived as fair and adhered to by the daughter. Furthermore, we presume that Maria would want her daughter’s burden considered. Furthermore, no plan is likely to be followed without the daughter’s endorsement.
Both commenters point out that Maria’s behavior toward the doll indicates a kind of capacity in the sense that her wishes are clear. This point calls into question conventional conceptions of decision-making capacity. How should Maria’s simple expression of desire, without the usual indicators of capacity, be weighed?
The question of Maria’s dignity is difficult due to the indeterminacy of the concept. The doll improves Maria’s symptoms; however, does clinical improvement always accord with dignity? Does Maria’s being unaware of the deception influence our understanding of her dignity? Granting that Maria is infantilized when others collude to treat the doll as real, is infantilization ever justified and if so under what conditions?